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This will be an emotional diary.  It will take me some time to write, because I am crying as I write it.  There will be no links or supporting data.  No breaking news.  I am hurting now, and I just need to get this out.  Maybe I will get some support, constructive advice, or at least some sympathy.  If nothing else, at least I will have had a chance to get some of this out of my heart and onto the page.

Warning to trolls:  I am a mother with a gaping hole in my chest where my heart used to be.  Stay out of this thread or prepare to be eviscerated.

It's hard for me to choose what to include here.  I could certainly write a book about the odyssey of pain that is the life of my family.  I do need, at the least, to give you the bare bones background.

My husband and I married in 2002, and welcomed our beautiful son into the world in 2004.  We knew we wanted two children, and started trying again right away.  And boy, did it work!  My little angel, Audrey, was born the next year in 2005.  

By the time we knew something was wrong with my son, I was already 6 months pregnant with my daughter, and there was no turning back.  If we had known then, we would not have had a second child.  I still bless every day that we've shared with our lovely daughter.  I guess I'm glad that I don't have the opportuntiy to take that back.

Fast forward a year or so, and we had two children diagnosed with autism.  Just to be clear, we're not talking about just "autism spectrum disorder," which includes conditions like Asperger's Syndrome which may be milder.  My children are autistic.  Period.

That's where the pain begins.  The kind of pain that can never really be verbalized to anyone who has not experienced it.  They say the worst thing that can happen to someone is the death of a child, and I don't doubt it.  Thankfully, only a minority of us know what the second worst thing is -- having a child who is sick and will never get better.  They say time heals all wounds.  But having an autistic child is a fresh wound every day.  The pain does not recede.  It only gets worse.  Every day brings new agonies -- "If my child was normal, he'd be talking now."  "If my child was normal, he's be making his first friends now."  "If my child was normal, he'd be learning to ride a tricycle now."  And I'm sure that will continue for the rest of our lives.  All the simple joys of life that most people take for granted are forever beyond our reach.  My children will never go to a prom.  Drive a car.  Get married.  Go to college.

But heck, that's in the distant future, right?  The heartaches of today are simpler:  My children will never tell me what they want for Christmas.  They'll never draw me a picture to hang on the fridge.  They'll never say, "I love you, mommy."

When first arriving on this nightmare landscape, your expectation is that the cavalry will ride to your rescue.  Armies of public servants will arrive at your door -- "We're here, ma'am.  We'll help.  Everything that can be done for your child is being done."  That's the second heartache -- no one comes to your rescue.  You're on your own.  I saw the end of a movie once -- I don't recall the name; it had Nicole Kidman in it and they were stopping some terrorist from doing something or other.  They flashbacked to the terrorist's past to explain his crazed behavior.  He was in his foreign homeland, in a warlike scene.  He was carrying the bleeding body of his daughter who'd been shot, begging for help.  No one responded, and she died in his arms.  

That scene is the best example I can think of to explain what it's like to be the mother of an autistic child.  Sometimes, I just want to run into the street and scream, "My babies are sick -- someone, please help us!"  Real life is just like that movie.  No one comes.

There are services.  Each state is federally mandated to provide early intervention services for children with autism.  You see, a growing body of research suggests that with the correct treatment, which is agreed to be 25-40 hours per week of behavioral therapy (ABA), as many as 50% of autistic children can go on to lead normal lives.  50%!  Now there's a chance for our children -- we can save them!  There's just one problem.  The money isn't there.  Every year the rates of autism increase, and yet every year the funding is cut.  Suddenly, you realize that the people who you count on for help are now your enemies.  Your child is a great expense to them.  The officials in charge of these programs approach you with one objective:  How little can we give this family?

We were able to get 25 hours per week of early intervention services for my son, and it was a miracle.  He made so much progress.  And when he turned 3 and it became the school district's responsibility (under IDEA) to provide him with the right school for his needs, we did manage, after some wrangling, to get them to send him to an excellent ABA school.  It's private, and expensive.  They fought, but my son won.  And his progress continues.  He's 4 1/2 years old now.  He has some language.  He can use the potty independently.  He's even learned some skills that enable us to play with him -- that's the best part.  Though he still has very little language, he can count and even has some sight words.  His future is looking brighter.

Ah, but my daughter is a different story.  We could only get 15 hours of early intervention for her.  Though she started out with even more promising signs than my son, she's not making the kind of progress he's making.  The hours just aren't enough.  Budget cuts, ya know!

And that brings us to the events of this afternoon.  We had her IEP meeting with the district today, to choose the placement for her on her third birthday next week.  My son's school says they have a spot for her!  These openings are rare, and we were ecstatic.  The district proposed a different placement some weeks ago, and we sent a consultant in there to observe the program and give us his recommendations.  He was apalled.  I won't go through the details, but here's one example to give you an idea:  They do not have enough staff to do the 1:1 instruction autistic children this age require, so they do 2:1.  When a particular teacher was working with one of her two students, the other was banging his head on the table for nineteen minutes.  No one intervened.  This is where they want to send my precious baby girl.  It's a death sentence.

We presented that report today, and made our argument that this placement was clearly not appropriate for her.  They refused to budge.  Now we go to court.  In the meantime, Audrey's spot at my son's school goes to another child.  To make matters even worse, her early intervention services cease on her third birthday.  The regression will be immediate -- she will lose all the skills she has fought so hard to learn.

The research is unequivocal -- the 2-5 year range is the window of opportunity to help these kids.  This will very likely mean the end of any hopes for Audrey's future.  Why?  It's those pesky budget cuts again!

When I watched the debate last night, I was apalled by McCain's assertion that he and Sarah Palin will fight for kids like mine.  It's a lie.  He says Sarah knows what it's like to have a special needs child.  But she's consistently slashed funding in Alaska for the services these kids need (see expatyank's excellent diary on what our kids need from government and what McCain/Palin aren't going to give them).  I see no reason to believe that will change.  After all, she'll have the financial resources and the "cadillac healthcare" to take care of her son, and nothing about her character suggests that she will hesitate to throw the rest of our kids under the bus.  Gotta control that spending, also, you betcha!

It's been hard today for me to get a grip on myself and what I need to do next.  As if one calamity were not enough, my grandfather died.  His funeral is Sunday.  And we're not talking about a "lived 800 miles away, barely knew him" grandfather.  My father was not a part of my life, and my grandparents handled  the lion's share of my upbringing.  Pop-pop was my daddy.

I can't even imagine dealing with the demands of this election right now.  I have no choice, though.  I'm on the committee, and I'm running the East Ward headquarters of my city on election day this year.  These last 19 days will be a lot of hard work.  For a while today, I didn't even care.  But I know this -- the lives of our children depend on this election.  It may be too late for my daughter now.  January 20th won't get here soon enough for her.  

But somewhere, tonight, a woman I don't even know is giving birth to a long awaited child that will later turn out to be autistic.  Her family's odyssey of pain is about to begin.  Her child's future depends on Obama and a Democratic congress.  On November 4th, I'll be working for her baby.

UPDATE: Thanks everyone for putting this on the rec list tonight.  It's only my second trip, and it's always an honor.  But most of all, thank you all for your kind words.  I wrote this because I knew I would find support here.  You guys are the brightest light on the web.

As I said to ghaucer2 in the comments:

I don't know why, but just hearing words of support like that really do make a difference.  After today's meeting, I felt like the whole world hated my sweet daughter -- that my husband and I were the only ones on her side.  It's nice to be reminded that outside of that conference room, is a world full of good people who really care.  

And in 19 days, those people are going to put their votes where their heart is.

UPDATE 2:  Several commenters have expressed the opinion that the title of my diary is misleading -- that "lost" should only be used regarding physical death.  I understand how someone who's never been faced with these kinds of challenges would be confused about that usage.

So let me be clear:  The decision of my school district has taken away my daughter's future, in a very real sense.  When I entered that conference room, she had a good chance at building a semi-normal life.  When I left, she had a new future, and it's not a good one.  We now have to get on the 10 year waiting lists for group homes.  We now have to face the reality that our daughter has an institutional future.  So yes -- we do feel that we lost our daughter today.

I never meant to suggest that my family's experience is equivalent to the actual death of a child.  Of course not.  That is not what I meant by "lost my daughter," anymore than when we say "McCain lost Virginia" we mean that the population of Virginia has died.  I am sorry that some were confused.  I would change the title of my diary if I hadn't been accused by some of these same commenters of deliberating misleading people to get extra sympathy.  Frankly, it just makes me feel defensive of the title.  The bottom line is that this is how I feel -- that I've experienced a great loss.  Please try to understand that before being critical.  It really is the last thing I need to hear now.  

And thanks again to the vast majority of you who have been so very supportive.  My husband wants to print out these comments to look at when he feels like despairing.  You really have given my family something special today.

UPDATE 3:  It has been suggested in the comments that I set up a Pay-Pal account for donations.  It is true that we've accrued thousands in debt over this already, and it's just beginning.  At least we have the credit to fall back on -- thousands of families like ours don't have that option.  So I've thought hard about how folks can help, and I think the best thing you can do is send one more donation to the Obama campaign today.  That's the best hope for our kids now!

UPDATE 4:  Great news!  When I wrote this last night, we were in the position that even if we prevailed in court, Audrey would lose -- her spot in school would be lost and a lapse of her early intervention services would have crippled her progress.

I've spent most of the day on the phone trying to avert this disaster.  Success!  My son's school has agreed to hold Audrey's spot for her, at least for now.  And her early intervention provider is going to continue her therapy until the case is resolved.  Now all we have to worry about is our day in court.  There are no guarantees, but I have something now that I didn't have last night -- real reason to hope.

I'm not superstitious generally, but I can't help but feel like it's the mojo you've given to my family today!  Thank you again, Kossacks, for everything!

UPDATE 5:  I don't know what to say.  One of you has just given me an anonymous lifetime subscription.  I just got the e-mail.  I had to read it twice to be sure it was real.  The kindness is amazing in and of itself.  But when you add in the fact that it was anonymous...well, that's how you define what it means to be a good person, I guess.

Originally posted to revelwoodie on Thu Oct 16, 2008 at 06:53 PM PDT.

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Comment Preferences

  •  Tips for my daughter... (0+ / 0-)

    ...and all those other sweet babies like her.

    We'll need the mojo in court.

    edscan -- 1/21/09. The truth will be revealed.

    by revelwoodie on Thu Oct 16, 2008 at 06:54:45 PM PDT

  •  There Are So Many Stories Like This One... (30+ / 0-)

    Thank you for sharing yours.

    "You share your young with the wolves of the nation...
    Theres nothing left til you pray for salvation"
    Black Rebel Motorcycle Club "American X"

    by Steve Singiser on Thu Oct 16, 2008 at 06:55:36 PM PDT

  •  I'm so sorry. (18+ / 0-)

    "My sister in law is an oak tree. No she's a manhole cover. I've got a mind like a jukebox. Hey, didn't you kill my brother?" Alexei Sayle

    by lying mcliar on Thu Oct 16, 2008 at 06:55:54 PM PDT

  •  Hang in there (21+ / 0-)

    HUG:)

    "The best way to predict the future is to help design it." - Peter Drucker -

    by citizen31 on Thu Oct 16, 2008 at 06:56:28 PM PDT

  •  Thank you for writing this-- (29+ / 0-)

    and for making so clear and so real what we--all of us--need to do to help you and your child, and all children.

    Nebraska: Who knew it was a hotbed of activist trust-funded latte-drinking Prius-driving brainwashed caucusers? It's not just about the corn.

    by cultural worker on Thu Oct 16, 2008 at 06:58:23 PM PDT

  •  What a life you've been handed. (39+ / 0-)

    I appreciate the loving way you wrote this and I offer you gentle hugs and peace.

    May you find the loving hands on support you need right now.

  •  So sorry .. condolences ... (6+ / 5-)

    Will pray for you. Be Blessed.

    "For God so loved the world that HE gave his only begotten song, so that those whom believeth should not perish but have ETERNAL LIFE".

    Your DEAREST ANGEL is in HEAVEN with our Lord.  

      •  I read it and I see where he is coming from (14+ / 0-)

        The title of the diary is very misleading, particularly taken with the emotional intro. It's a good diary, and a sad situation, but I feel a bit had, even used. Hyperbole is a dangerous weapon and it was not needed here to elicit sympathy that would have been forthcoming anyway.

        The big guy in the commercials would not approve of my use of the High Life.

        by leberquesgue on Thu Oct 16, 2008 at 07:12:41 PM PDT

        [ Parent ]

        •  It wasn't hyperbole (10+ / 0-)

          it was the way she felt.  She's going through this; not you.  She's entitled to describe it any way she feels like it.

          I'm so sorry your literal-meaning senses were bruised.

          You say you got billions to spend? Start the Universal Healthcare Pot. Everyone wins; individuals and corporations alike.

          by gooderservice on Thu Oct 16, 2008 at 07:25:53 PM PDT

          [ Parent ]

          •  Definition... (1+ / 1-)
            Recommended by:
            Cedwyn
            Hidden by:
            L0kI

            from Dictionary.com

            an extravagant statement or figure of speech not intended to be taken literally, as "to wait an eternity."

            It is the definition of hyperbole. Yes, that is the way the diarist feels, but how many times when tragedy strikes do we consider this tragedy the worst thing ever?

            It remains hyperbole, like it or not. I happen not to like it; you may differ, but can you deny in good faith that it is hyperbole?

            The big guy in the commercials would not approve of my use of the High Life.

            by leberquesgue on Thu Oct 16, 2008 at 07:33:12 PM PDT

            [ Parent ]

            •  The point is, (12+ / 0-)

              she feels she has lost her daughter. If she can't get her daughter the therapy she needs, the woman she can grow up to be will never be. There is a real loss here, and the title expresses that. And since most of us can relate to death more easily than to the subject at hand, it's entirely appropriate that she phrase it that way.

              Denny Crane: But if he supports a law, and then agrees to let it lapse … then that would make him …

              Shirley Schmidt: A Democrat.

              by Jyrinx on Thu Oct 16, 2008 at 07:43:47 PM PDT

              [ Parent ]

            •  You don't get it. (3+ / 0-)

              You're missing the whole point.  I couldn't possibly explain it any better than the diarist has already written.

              I understand what she said. And I admire her strength.  She needs support from all possible sources, and here in the comments, one source of strength is encouragement, as well as some more information to help her fight for her daughter... just to name a few.

              This isn't about you and your critique of a title or word definitions.

              Your comment:

              but how many times when tragedy strikes do we consider this tragedy the worst thing ever?

              lacks compassion and decency.  Plus, it doesn't make any sense.

              Never mind.  I'm wasting my time.

              You say you got billions to spend? Start the Universal Healthcare Pot. Everyone wins; individuals and corporations alike.

              by gooderservice on Thu Oct 16, 2008 at 07:50:13 PM PDT

              [ Parent ]

              •  Yes I do (3+ / 0-)
                Recommended by:
                Cascadia, osterizer, Cedwyn

                Would it help if I said that I agree with most of what Jyrinx says in the above comment? Or if I pointed to the parts of my comments that expressed sympathy for the diarist's plight? I am grateful that there is still hope for her daughter (slim though it seems at the moment), and that some good to that end may come from this diary.

                What you don't get is that some people would be much happier without the unnecessary emotional stress of steeling themselves for what sounds at one point as though it will describe the death of an autistic toddler. When you deny my comment to that effect with an incorrect refutation, can you blame me for referring to the definition to explain why you are wrong? It was the easiest way.

                The big guy in the commercials would not approve of my use of the High Life.

                by leberquesgue on Thu Oct 16, 2008 at 08:13:33 PM PDT

                [ Parent ]

                •  Totally Agree - emotion vs advocacy (2+ / 0-)
                  Recommended by:
                  leberquesgue, squeakrad

                  Although I understand how over-whelmed she is and how she wants the state or the school to solve the problem I totally felt manipulated by this diary as well and the request for financial help makes me wonder if it was vetted?

                  Our aim must never be to defeat or humiliate the enemy, but to win his friendship and understanding." -- 1958 MLK

                  by Cascadia on Fri Oct 17, 2008 at 10:38:52 AM PDT

                  [ Parent ]

            •  k, now your hijacking. (1+ / 0-)
              Recommended by:
              gooderservice

              -9.13, -7.79 When you pray, move your feet. -African Proverb

              by L0kI on Thu Oct 16, 2008 at 10:59:15 PM PDT

              [ Parent ]

          •  You're 100% right. (4+ / 0-)

            She is entitled to describe it any way she feels like it.  

            The thing is, we as readers, bring our own experiences with us when we start reading something.  We view it through a prism of all that we're going through now, or have gone through in the past.  

            The description will register with us any way we feel like it.  Readers have reasons too.  

            (BTW, I feel the need to state this outright:  discussing the writing style doesn't mean I feel any hostility towards Revelwoodie.  I wish her only the best.)

          •  she's entitled to describe it (0+ / 0-)

            any which way she sees fit on her own blog.  not here.

            "Government, like dress, is the badge of lost innocence; the palaces of kings are built upon the ruins of the bowers of paradise." Thomas Paine, Common Sense

            by Cedwyn on Fri Oct 17, 2008 at 06:31:47 AM PDT

            [ Parent ]

        •  My sister lost her son four years ago (12+ / 0-)

          He had brain cancer.  She got to watch him waste away in front of her.  Literally every day there was a new symptom -- another handful of words forgotten, a new sign of physical weakness, and in the last weeks an increase in the length and intensity of the seizures.  That sort of thing.  

          That was the first thing I thought of when I started reading the diary.  I pictured Revelwoodie in my sister's position.

          The diary does seem to start off fooling the reader into thinking the child died.  And I have to admit, for a few seconds I was angry about it.  It flung me right back to four years ago, when I and my family stood by helplessly as my sister prepared to bury her son.  Not a good feeling.

          Revelwoodie, I'm relieved that your children are still here -- and I'll be more relieved when medical breakthroughs come along to help them and you.  The diary is absolutely heartbreaking. You have my sympathy, and I wish you all the best. You also have my admiration for your strength.

          •  kcc: (1+ / 0-)
            Recommended by:
            kcc

            I've read this comment multiple times now.  I can't even imagine the pain that your family has gone through.  I've been thinking about it now for some time before replying, because I just don't know what to say -- there are no words.  I won't even try.  There's nothing I could say that would even come close.

            What you say is absolutely true.  I do thank God every day that at least my children are still here.  That I can look at them, and hold them, and tell them I love them.  Even if they don't understand and can't respond -- at least I have that.  So many families have lost that chance forever.

            That is, in fact, one of the things that get us through.  When it gets really rough, and it seems like there's no reason to go on, we tell each other all the ways it could be worse, and how much we still have to be thankful for.  Thanks, again, for sharing your story with me.  It means more than you know.

            edscan -- 1/21/09. The truth will be revealed.

            by revelwoodie on Fri Oct 17, 2008 at 09:25:18 AM PDT

            [ Parent ]

            •  I can tell... (1+ / 0-)
              Recommended by:
              revelwoodie

              I can tell you've put a lot of thought into what you've written here -- not just in your response to me, but in your diary and in your other comments.  I was hoping that I wouldn't offend you by mentioning my initial reaction to the first paragraphs of your diary.  

              I didn't mean to compare what my sister went through to what you're going through.  I'm not one for saying to anyone in a difficult position, "At least X, Y and Z didn't happen," unless I'm sure they're at a point where they'd be receptive to it.  Maybe it puts things in perspective, maybe it doesn't, depending on the situation -- but it doesn't offer any help for the situation the person is in.  I realize you can be thankful that your children are still here, and still have every right to be mad as hell and frustrated and discouraged about the obstacles dumped in their paths.  

              I hope the commenters who are more informed than I am on autism and the programs available have helped you.  To be honest, I can't see a bad outcome for your children, given the mother they have.    

              Thank you for your kind words and your thoughtful response, and for being understanding enough not to read hostility into any of what I wrote (or if you did read hostility into any of it, thank you for giving me the benefit of the doubt).  

              I wish you and your family all the best.

        •  I agree. (6+ / 0-)
          I think the title of the diary was misleading.  

          And -- I hate to sound insensitive, but calling a 2:1 teacher-student ratio a "death sentence" is also overboard:  that's the same ratio the children have at home any time one of the parents has to leave the house.  (I assume someone leaves occasionally.)

          I forgive the diarist, because -- having a special-needs brother myself -- I know how gut-wrenching it can be to deal with an economically-constrained bureaucracy.  I hope she'll find the strength to replace string-pulling manipulation with convincing, incisive clarity as she continues to fight for her children.

          McCain : Palin :: Bush : Miers

          by osterizer on Thu Oct 16, 2008 at 08:23:11 PM PDT

          [ Parent ]

        •  Oh, I see. (5+ / 0-)

          "I feel a bit had, even used".

          It's all about you.  

        •  you feel 'had'.... (5+ / 0-)

          I'm so sorry for you, condolences to your psyche for this terrible luck that has befallen you.  You are in our thoughts and prayers.  May this feeling disipate with time and you again regain your ability to chill the fuck out.

          -9.13, -7.79 When you pray, move your feet. -African Proverb

          by L0kI on Thu Oct 16, 2008 at 10:58:36 PM PDT

          [ Parent ]

        •  Agreed 100% (2+ / 0-)
          Recommended by:
          leberquesgue, Cedwyn

          I read the diary a couple of times, looking for the part where the daughter died, thinking I must have missed it because the headline permits no other reasonable conclusion.  When I found out I'd been played - and yeah, that's what that headline does - I was more pissed than sympathetic.

        •  When i first read the title, I thought the same (6+ / 0-)

          thing. But as soon as I saw that both her kids have severe autism, I understood what she meant. If there was a 50/50 chance that your child would never speak to you, might not ever even be able to easily look at you, wouldn't you feel as though you had lost her? The diarist clearly stated she was writing this at a time of extreme stress. I highly doubt she was just making a play for sympathy by trying to trick you into thinking her child had died. To suggest that she did is just plain cruel.  

          •  I thought the writer felt (4+ / 0-)

            she lost her child because the child was denied services and would now begin to regress and lose the skills she'd fought to get. Since the window for intervention to be most effective is 2-4 years, she really will "lose" her if she cannot get the services the child needs.

          •  I hope I didn't do that (0+ / 0-)

            It was not my intention to suggest the misleading was deliberate; of course the reasons you outline are valid to explain her usage. I started to comment in this thread with two purposes: to defend ocean11 against an inappropriate HR, and to point out the flaw in her usage and ask politely that it be changed. Since L0ki has HR'd me once already for "hijacking", this is the last I will say here. I am glad to have seen the 4th update, and that the situation is not quite as grim as it appeared in the original diary.

            The big guy in the commercials would not approve of my use of the High Life.

            by leberquesgue on Fri Oct 17, 2008 at 10:54:24 AM PDT

            [ Parent ]

      •  It was a very obvious misunderstanding. (15+ / 0-)

        The clear implication from the intro and title was that revelwoodie's little girl died today.

        Some people can't bear to absorb the details of the death of a child, and may skip forward to simply offer their heartfelt sorrow. I think everyone below being hard on ocean11 is out of line.

        I wish the diary didn't give the impression of death, but I understand why it's written that way, and why it feels that way.

        It's heartbreaking to not get the help you need for a child.
        I have a friend with two autistic children, and I know how hard she has to fight for their basic human rights every single day.

        "What's the frequency, Charlie?"

        by kate mckinnon on Thu Oct 16, 2008 at 07:17:17 PM PDT

        [ Parent ]

        •  I Don't Think It's Troll-Worthy or Worth (3+ / 0-)

          getting bent out of shape.  It's clear that the misunderstanding comes from someone who did not actually read the diary and just guessed at what it was about based on the title.


          You can have your "Under God" back when I get my "Liberty and Justice For All" back.

          by karateexplosions on Thu Oct 16, 2008 at 07:22:38 PM PDT

          [ Parent ]

          •  exactly (2+ / 0-)
            Recommended by:
            leberquesgue, codeman38

            the title leads everybody to believe a child died.  you simply do NOT set up false impressions regarding something so serious.  or you at least save it for the body of the diary.  

            i understand revelwoodie's pain, believe me.  i totally get that she feels her daughter is lost due to this (temporary) setback.  and i am really happy she has been able to find comfort, help and solace in this community.

            but this IS a community and not a personal blog.  there are certain expectations for diaries here, given that it's primarily a news/reporting kind of blog.  one of the biggies is that diary titles should accurately reflect the diary's content.  

            "i lost my daughter" is very loaded language and, imHo, should not be one's introduction to this story.  the community deserves that consideration.  

            "Government, like dress, is the badge of lost innocence; the palaces of kings are built upon the ruins of the bowers of paradise." Thomas Paine, Common Sense

            by Cedwyn on Fri Oct 17, 2008 at 06:28:39 AM PDT

            [ Parent ]

        •  your comment made me remove my TR... (0+ / 0-)

          normally I skip over diaries of death and suffering b/c it's too hard on me (that sounds selfish, but I have very good reasons for skipping such things)... so I can understand where the commenter is coming from.

          -9.13, -7.79 When you pray, move your feet. -African Proverb

          by L0kI on Thu Oct 16, 2008 at 11:03:38 PM PDT

          [ Parent ]

        •  Yes, exactly. (0+ / 0-)

          Some people can't bear to absorb the details of the death of a child

          Exactly.  I have to admit: I almost skipped over the diary entirely myself because, upon seeing the subject line, I thought I would be overwhelmed by the full post.

          (Despite what they claim, many of us autistics do feel empathy...)

    •  I think you misunderstood. n.t (6+ / 0-)

      Support strong liberal family values.

      by NMDad on Thu Oct 16, 2008 at 07:03:27 PM PDT

      [ Parent ]

    •  WTF!? How insulting! (5+ / 1-)

      Did you even read what this woman posted.  No, you just plowed right in with your empty platitudes and rushed typing as if you had something to add.  

      "Republicans have been accused of abandoning the poor. It's the other way around. They never vote for us." Dan Quayle

      by RadicalGardener on Thu Oct 16, 2008 at 07:09:01 PM PDT

      [ Parent ]

    •  Uh, what? (0+ / 0-)

      So... McCain was a POW for five years. He keeps mentioning it... does this mean he thinks of America as one giant POW camp that he wants to run?

      by RElland on Thu Oct 16, 2008 at 07:13:18 PM PDT

      [ Parent ]

  •  Here is a lifeline (56+ / 0-)

    The Federation for Special Needs, in Boston. They have parents on their staff with grown children who have "been there". Please call them first thing in the A.M. They will talk to you, and they can refer you to the group in your state they like the best, and which can help you fight.

    http://fcsn.org/...

    Dr. Martin Luther King, Jr. was a community organizer; George Wallace was a governor.

    by SlackwareGrrl on Thu Oct 16, 2008 at 07:00:36 PM PDT

  •  I'm so sorry (12+ / 0-)

    I can't imagine what it must be like for you to have to see your daughter's future heath and happiness potentially slip away. Hang in there.

    {HUG}

  •  As the parent of a child (49+ / 0-)

    with Fragile X Syndrome, you have my deepest sympathies. Last night, John McCain made me angry, as a woman, as the parent of a special needs child, as an American.

    We have to win this one, for our kids.

  •  There are no words (22+ / 0-)

    that will  bring you comfort, so I hope knowing so many are thinking of you and wish we could do more for you and Audrey will be of some help.  We will all be voting to help all of the Audrey's on November 4.

    To paraphrase Stephen Colbert: 2008-Great Depression or Greatest Depression?

    by MufsMom on Thu Oct 16, 2008 at 07:00:55 PM PDT

  •  Be positive, think positive (10+ / 0-)

    be positive. God Bless and keep you.

    Of all the disciplines, history is best qualified to reward our research.--Malcolm X

    by consciousempress on Thu Oct 16, 2008 at 07:01:30 PM PDT

  •  What can I say... (19+ / 0-)

    to let you know that you are loved and that you have what it takes to be the right person in the lives of these two very special children.  There are no answers to your heartache, just know that although no one can really know your pain, we still care about you and wish you peace.
    The love your grandfather shared with you obviously created a strong and special person.  
    Besides what the educational community has to offer, might I recommend attending a DAN! conference?  DAN! stands for Defeat Autism Now.  Its focus is on more of the biochemical approaches to care, especially in nutrition.
    Thank you to reaching out to us.
    Peace to you.

    •  I have a friend who... (15+ / 0-)

      ...is a DAN doctor.  We're considering making an appointment.  Our kids don't have a lot of the red flags for DAN treatment, like diarrheah and rashes, but we'll try anything that might help.

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Thu Oct 16, 2008 at 07:10:28 PM PDT

      [ Parent ]

      •  Tap into all your allies who love you (4+ / 0-)
        Recommended by:
        4Freedom, kyril, revelwoodie, Shuruq

        Whether they're doctors, butchers, bakers, or candle stick makers. The more you surround yourself with people who love and support you, the easier this will be. If this doc can be on your side, then go for it.

        Dr. Martin Luther King, Jr. was a community organizer; George Wallace was a governor.

        by SlackwareGrrl on Thu Oct 16, 2008 at 07:29:16 PM PDT

        [ Parent ]

      •  Most people with (7+ / 0-)

        ... gluten intolerance never get diagnosed because there are different genes that produce different symptoms that the American medical system is not set up to recognize.

        This does not mean your child is automatically gluten intolerant and/or carrying other food intolerances.   This means that you should go over to celiac.com and start reading the discussion boards.  There is a higher probability that your kid is carrying the genes that pre dispose him for gluten intolerance or other food sensitivities.  I learned this here at dailykos.   And if those environmental triggers set the chain reaction of auto immunity off, he could be having additional problems that are hindering his progress.

        I'm thinking that they are going to discover that autism is an inherited genetic condition based on a mutation combined with some sort of exposure to a virus or bacteria or toxin.  And I was a total sceptic about the vaccine situation until I read enough stories (still don't think it's the mercury, but yes, something else weird is going on).   SOMETHING in our human environment is certainly pushing the number of children with it up.

        "Toads of Glory, slugs of joy... as he trotted down the path before a dragon ate him"-Alex Hall/ Stop McClintock

        by AmericanRiverCanyon on Thu Oct 16, 2008 at 07:49:21 PM PDT

        [ Parent ]

      •  My son is autistic... (16+ / 0-)

        And we've been doing biomedical treatments with him for the past three years with remarkable improvements. It's a long road, but I do think it's something to seriously consider. My son is continuing to improve under the care of his alternative practitioners - he's 7 now - it's never too late!!

        I'm sending you all of my love and hope - from a mom who's been there.

        •  Same here. Started biomedical at 6 (13+ / 0-)

          and my son is now almost 10.  We are gluten-free and casein-free and work with an outstanding doctor My son takes certain supplements (determined by bloodwork levels) and is now in school with no supports.

          We did occupational therapy and speech therapy (he has Asperger Syndrome, so it was social skills/pragmatic speech) and psychologist/child psychiatrist consults.

          In our son's case, he has a father with Crohn's and celiac disease, so the diet is VERY important and he responded incredibly well within 3-4 weeks of being 100% gluten and casein-free.

          We did what would be considered a "mild" biomedical approach and have a child who is so much more comfortable in his own skin and who has friends and great social skills.  

          Jacqueline McCandless's "Children with the Starving Brains" is a great book to start with.

          •  The GF/CF diet really can be helpful (4+ / 0-)

            I used to work with the unit in Sunderland that pioneered this approach, and saw the results. Didn't work for my son, but definitely for some others--seems to be a subtype with autism for who it's a useful approach.
            As always though: your mileage may vary :-)

            Political Compass says: -8.88, -8.67
            "We never sold out cos no one would buy."--J Neo Marvin

            by expatyank on Fri Oct 17, 2008 at 02:32:53 AM PDT

            [ Parent ]

            •  Yes--some people find success with SCD (1+ / 0-)
              Recommended by:
              4Freedom

              Specific Carbohydrate Diet, while others with Feingold Diet.

              I think there is no monolithic "autism," but rather "autisms" with different triggers an causes.  So there's no "one size fits all" approach.

              Other than compassion.

      •  since you mentioned DAN (8+ / 0-)

        here's the link to my son's autism story. http://www.dailykos.com/...

        If there's anything I can do, I'm here. I know about the hole in your heart.

      •  Judith Bluestone of the Handle Inst. (4+ / 0-)
        Recommended by:
        dogemperor, 4Freedom, kyril, revelwoodie

        recommends dietary changes also. Myself, it makes sense to me, since I need a diet of, well, real food. Can't function without it.

        I use a modified version of the Feingold diet.
        www.fiengold.org
        By modified, I suppose I mean that I occasionally screw up, which I've learned is easier to deal with than obsessing about being perfect. That makes you crazier  (trying to be perfect) than eating a bit of the wrong thing.  

        Be good to each other. It matters.

        by AllisonInSeattle on Thu Oct 16, 2008 at 08:38:33 PM PDT

        [ Parent ]

      •  again, exercise caution... (3+ / 0-)
        Recommended by:
        cvannatta, 4Freedom, revelwoodie

        I've been to 2 DAN conferences and know several of the folks involved, including some of the founders--so I'm not totally negative on alternative/biomedical stuff at all, BUT... There are some good "DAN doctors" and there are some who shouldn't be allowed anywhere near a vulnerable child. You WILL get some major sales pitches there from purveyors of vitamin formulas, diet products, software etc. None of it has undergone proper scrutiny. I tend to go with the "if it can't hurt and might help..." mantra, but financial hurt counts as well as actual physical or mental injury. And boy, do I know some families who have been financially hurt by some people involved in DAN.
        There's no vetting process for who can get on their list, unfortunately.

        Political Compass says: -8.88, -8.67
        "We never sold out cos no one would buy."--J Neo Marvin

        by expatyank on Fri Oct 17, 2008 at 02:15:39 AM PDT

        [ Parent ]

        •  DAN was very helpful to me (3+ / 0-)
          Recommended by:
          karenc, 4Freedom, revelwoodie

          When my son was younger I went to maybe half a dozen DAN conferences and a couple AutismOne conferences.  (I haven't been to any in 2 or 3 years)  I found them to be extremely helpful.  Of course you have to evaluate everything you hear and everything that is offered for sale.  But I found the meetings to be very very good for my mental attitude.  I met tons of others parents like me, I listened to, asked questions of experts in a variety of fields, I made contacts, I collected literature and meeting notes and most importantly each time I went I made a list of things to think about/research/take action on related to my son and where he was at that year.  I always came back fired up and ready to go.
          We live in Kansas.  Some good things but really not a lot is available.  Besides public school and early intervention preschool (age 3 - 5) every intervention Hayden has has we have provided.

          Revelwoodie - I know it is hard.  It's a heartbreak and there are so many little things that hurt.  Continue to do all you can for your kids.  There are many thousands of us out here who love you, love your son and love your daughter. Continue to fight for the placement you know is best.  There will be disappointments along the way but I always tell myself that when one door closes another one opens and my job is to find it.
          Hugs to you and your children

          •  your comment so underscores (2+ / 0-)
            Recommended by:
            4Freedom, revelwoodie

            the point of this diary absolutely brilliantly.  you went to how many conferences to learn about how to help your son and manage his autism?  and just what of parents who aren't fortunate enough to be able to do so?

            and these anti-tax rabidlogues want to pretend they'll help special needs families?  these, who don't believe in government.  i just want to slap palin right now.

            blessings, revelwoodie.  it's always darkest (and coldest, in my experience) just before the dawn.  besides, you are now practically an expert in the disorder yourself.  

            * hugs *

            "Government, like dress, is the badge of lost innocence; the palaces of kings are built upon the ruins of the bowers of paradise." Thomas Paine, Common Sense

            by Cedwyn on Fri Oct 17, 2008 at 06:48:53 AM PDT

            [ Parent ]

  •  There are no appropriate words (8+ / 0-)

    but you are in my prayers.

    John McCain and Sarah Palin: Failing monumentally since 2008.

    by Stella 4 Obama on Thu Oct 16, 2008 at 07:03:02 PM PDT

  •  Bless you for this diary. (12+ / 0-)

    Bless you for your courage.  Bless your children.  You will be in my prayers tonight.

    "Thou shalt not lie." ~ God

    by noweasels on Thu Oct 16, 2008 at 07:03:14 PM PDT

  •  this is what we are fighting for, families like (9+ / 0-)

    yours and others. we need a new direction in our society and this election can provide the turning point we need. Thank you for writing this and sharing your personal story. Keep fighting for whats right for you and your family. I will.

  •  The battles for our kids goes on daily (8+ / 0-)

    whether the money is there or not to help them

    Many here are standing with you to help bring the help so many families need

    we are fighting on, for a win on November fourth and then to help with more hard work after

    keep up the hope and we are thinking of you during an incredibly tough time

    There is just as much horse sense as ever, but the horses have most of it. ~Author Unknown

    by VA Breeze on Thu Oct 16, 2008 at 07:04:02 PM PDT

  •  How can that (19+ / 0-)

    be considered an "appropriate" educational environment?  Isn't that how the law states the right of every child?

    My son has Aspergers.  I could not get him services, period.  This was in the late 80s.  I pulled him out of school and homeschooled him but he was very high functioning and I understand a completely different ball game.  

    I will keep your story in mind - and you in my thoughts & prayers.

    •  That's the problem... (10+ / 0-)

      "Appropriate" can mean a lot of different things.  In a few weeks, it will be up to the judge.  It all depends on what judge we get.

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Thu Oct 16, 2008 at 07:15:38 PM PDT

      [ Parent ]

      •  Get a lawyer. My husband and I have (5+ / 0-)

        finally gotten full custody of my step-son. He has down syndrome. His mother signed paperwork to put him in a home many times, it is a very long story. We were in court for three years and when the judge appointed my step-son his own attorney to look into his life with us and his life with his mom we won. His lawyer was a specialist in children and had a special education background.

        Yes appropriate can mean many things and a lawyer for your child will help the judge to understand what is appropriate for your child. special needs means the needs are not something that can be canned. It needs to be a special education program designed for your childs needs. A good special ed lawyer can be free in California from our regional center protection and advocacy group. I hope your state has a simular program, they should supply you a lawyer for the hearing.

        McCain / Palin 08 - lipstick on a pig to nowhere.

        by debbieleft on Thu Oct 16, 2008 at 09:25:22 PM PDT

        [ Parent ]

        •  Individual Case vs System (0+ / 0-)

          It seems that the solution isn't for each family to struggle with this but for there to be a collective change in their care?

          Otherwise just those who can afford expensive attorneys would get care for their kids? I imagine that the only reason that they deny services is because it simply costs more then the district or the state can afford?

          I have a close friend with two young girls and when the youngest was in pre-school and in kindergarted and 1st grade she had to have a full time aide stay with her to help her learn to control her behavior. He made over 100k a year but always insisted that it was his right to have the school district pay for her care. If there were unlimited funds in the school system of course we would want to help every child but you have to balance needs with resources and access with disparity.

          Clearly there were other children with less dramatic needs who could have benefited from additional attention but there is always a trade off and he simply was able to hire the best attorney in most cases. I am not a bad person for simply observing this and it is harsh to realize that we always triage health care needs in this country and usually spend the most resources where the do the least good (at the end of life versus for a child like this who could change her life for decades) it is one reason that I am supporting Obama (and other D's).

          Our aim must never be to defeat or humiliate the enemy, but to win his friendship and understanding." -- 1958 MLK

          by Cascadia on Fri Oct 17, 2008 at 10:49:19 AM PDT

          [ Parent ]

  •  This community cares. (12+ / 0-)

    Your tags have been updated.  

    "Thou shalt not lie." ~ God

    by noweasels on Thu Oct 16, 2008 at 07:06:08 PM PDT

  •  "The lives of our children .. (8+ / 0-)

    .. depend on this election."

    You and your family are in my heart.

  •  We adopted a special needs child (24+ / 0-)

    and fought the system for her like maniacs.  We won, but it took a lot of perseverance, hope and community support from friends, family and perfect strangers.  I hope you are able to stick it out and overcome too.  Hang in there.  I have been to court hundreds of times professionally, but when it is your own family, it is a whole new ball game.  

    Just know this is a supportive community who will do anything within our power for you.

    One day, I will write about my beautiful daughter.  When we got her, she was given five months to live.  She will be twenty in two weeks.  With love and hope, anything is possible.  

    It is horrifying that we have to fight our own government to save the environment. - Ansel Adams

    by Otteray Scribe on Thu Oct 16, 2008 at 07:08:36 PM PDT

    •  You know, better than most, then... (9+ / 0-)

      ...that the more your child needs you, the deeper your love becomes.  Sometimes just looking at my children makes my heart so full of love, I cry.  I'm sure you know exactly what I mean.

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Thu Oct 16, 2008 at 07:18:30 PM PDT

      [ Parent ]

      •  I do. I surely do. n/t (6+ / 0-)

        It is horrifying that we have to fight our own government to save the environment. - Ansel Adams

        by Otteray Scribe on Thu Oct 16, 2008 at 07:25:33 PM PDT

        [ Parent ]

      •  You got that right (5+ / 0-)

        My friends say, "You will never know the intense love you have for a child you birthed."

        I tell them, "Unless you do it, you will never know the intense love you have for a child who needs you to heal them from past trauma."

        I call it "choice love". You choose to love them, and when they get the miracle that you are loving them in a way that feels good (a first), they love you with a love like a Gecko's feet. (They cling and attach to you with thousands of little bonding points.)

        There are kids out there who have relatively easy lives... well-to-do parents, good health, brains, bodies, special classes they're toted to, great toys, on and on. Yet when you're around them, you can feel a certain type of disdain for their parents emanating from them. They have no idea how good they have it -- they have no frame of reference. They have no idea what hardship is. They may, eventually, but they don't yet. So when their parents don't satisfy their every whim, they feel disdain or dissatisfaction with them.

        A kid with problems? They feel gratitude for you. And I'm here to tell you, it's a profound thing. It deepens the connection between you, it echoes between you, deepening the love.

        Be good to each other. It matters.

        by AllisonInSeattle on Fri Oct 17, 2008 at 12:29:22 AM PDT

        [ Parent ]

        •  Perspective from an adoptee (3+ / 0-)

          As an adoptee, I hate that "intense love for a child you have birthed" thing.  Hate it.  Should I assume my parents didn't love me because they had nothing to do with my conception?  

          And not everybody loves the child they birthed.  

          Arrghhh.  Completely off the topic of this diary, and I'm sorry.  But I had to get that out.  

          My take on the gratitude thing, though, is different, but only because... well, mine is the only experience I've ever had.  Are non-adoptees not grateful in the same way for good parents?  (Not being snarky -- I genuinely don't know.)  My only memories are of living with my family -- nothing of my biological family (or my time in the hospital before I was taken from them), so I don't know if being adopted has given me a different perspective -- I have nothing to compare it to.

          I think I had the same experience my non-adopted sisters had in my family.  My parents were there for all of us to the best of their abilities.  And they also screwed us up equally.   :-)

          And to inch back towards the topic of the diary:  using that "no love like that for the kid you birthed" logic means that Revelwoodie wouldn't be fighting mad and moving heaven and earth for her children if she had adopted them.  Dunno about that -- I get the feeling anyone getting in her kids' way better step aside fast, regardless of how they became part of her family.  :-)

          •  You nailed it for good adoptive parents (1+ / 0-)
            Recommended by:
            AllisonInSeattle

            Several people found out what it was like to come face to face with a meat grinder when they tried to interfere with getting our child the best help possible.  And now our daughter is one who takes up for the underdog in the most passionate manner possible.  It rubbed off, I suppose.  Good for you, good for Revelwoodie and good for all adoptive families for whom the magic has worked.  Obviously, no two are alike and there are some bad situations, but I would not trade our experience for anything.

            And our daughter asked where she needed to go to vote early last night.  It will be her first presidential election, and she is excited about getting to vote for Obama.

            As for siblings, she was devastated when she lost her older brother last year.  She has been unable to play her bagpipes since the memorial service (click on my username and scroll down for that story).  Her grief is deeper than anyone could possibly imagine. He was one of our children by birth, but you would never have known the difference if you did not know the family.  

            It is horrifying that we have to fight our own government to save the environment. - Ansel Adams

            by Otteray Scribe on Fri Oct 17, 2008 at 01:52:11 PM PDT

            [ Parent ]

          •  Thanks for your comment (0+ / 0-)

            Makes a lot of sense to me. Appreciate reading your version of the "intense love for child you birthed" statement.

            One article I read said, "Who would know the answer? Why only one group: parents who've had bio and adopted both. When asked, they say, '1000 runny noses, 200 up-in-middle-of-night, 300 scraped knees, 3000 cute kid sayings later... you love both sets of children exactly the same."

            How about that?

            Liked your: "helped us and screwed us up equally". No parent is perfect, as knowledge we're so daily confronted with...

            Be good to each other. It matters.

            by AllisonInSeattle on Sat Oct 18, 2008 at 10:55:45 AM PDT

            [ Parent ]

  •  I'm a speech-language pathologist (27+ / 0-)

    And the school systems don't generally like me very much. I make sure the families I work with are informed of their rights. Back in 1999, Congress decided that if families requested it, they could continue the IFSP from ages 3-5. The school district is responsible for providing the services rather than the community-based providers, but it is your right to request that the IFSP be continued for 2 more years. I can't remember if the document continues to be called the IFSP or if it changes to an IEP, but that's merely a matter of semantics.

    I wish you all the best! You're running into the reason I never would have been able to work in the school district!

  •  Please just remember (9+ / 0-)

    that you're stronger than 10 women with normal children. That you have time to volunteer in this crisis says much about you. Your children are blessed to have you as a mother. I pray that one day you get some relief.

    "You were sick, but now you're well again, and there's work to do." Kilgore Trout

    by DeppityBob on Thu Oct 16, 2008 at 07:09:49 PM PDT

  •  Thanks for sharing your story. (5+ / 0-)

    I hope you are able to get better results in court.

  •  this was powerful (4+ / 0-)

    thank you.

  •  wishing, hoping (4+ / 0-)

    for clarity, hope, and small miracles for you.  You have my profoundest respect,  and my deepest sympathy.

    Peace

    "In the immortal words of Jean Paul Sartre, 'Au revoir, gopher'. " -Bill Murray as Carl Spackler

    by jhop7 on Thu Oct 16, 2008 at 07:10:53 PM PDT

  •  I wish I could put my arms around you (5+ / 0-)

    but instead I offer a virtual hug. My heart breaks for you and your family.

    That's not a Maverick. That's a sidekick!

    by DWKING on Thu Oct 16, 2008 at 07:11:15 PM PDT

  •  We've got your back on November 4. (9+ / 0-)

    My younger brother had mild learning disabilities and a few other problems, but he was able to get the very best care and help and is now a "normal" adult (although of course I still tease him; hey, he's my little brother).

    I hope that you are able to find a way to help your children the way my brother was helped.

    Take care of your family and stay strong.

    Enjoy it now, Sarah, 'cause we're kicking your silly winking folksy lipsticked ass back to Alaska. For good. Also.

    by Kaili Joy Gray on Thu Oct 16, 2008 at 07:11:17 PM PDT

  •  I've been going to the same (12+ / 0-)

    hairdresser for years.  He's a great guy - married for a long time with one son, who is also autistic.  That's as much as I know about autism - what he tells me.  I know he and his wife work and fight and battle nonstop to get resources for their son, who has more than a mild case of autism.  Although he's always optimistic and light when he talks to me of his son (because I inquire), it's clear to me that it's one battle to the next for them.

    I'm so sorry you lost your grandfather and I do hope something turns around for your daughter - and very soon.

  •  This is why we fight so hard (9+ / 0-)

    for a government that looks out for and cares for its people.  This is why we donate our time and money.  This is why we must win.

    This is also why I left the Republican party.  They have left the people of this country behind.  This is also why the "grand old party" must be destroyed.

    Stop the Planet of the Apes, I want to get off!

    by KroneckerD on Thu Oct 16, 2008 at 07:11:29 PM PDT

  •  Your palpable pain makes me feel ashamed I have (10+ / 0-)

    not done more for the benefit of all our children. I just came back from visiting my precious grandchildren. I am deeply in touch with the need of children to be cared for. All children. Cared for by all of us.

    Blessings on you and your children.

    Every day you have less reason not to give yourself away. -Wendell Berry

    by ammaloy on Thu Oct 16, 2008 at 07:11:41 PM PDT

  •  revelwoodie (13+ / 0-)

    I am holding you, your husband, your son and dear precious daughter in my heart right now.  I have lit a candle for you -- not in the religious sense, but in the light of the world sense.  I am praying for you and added you to my prayer list (with so many others) -- again, not in the religious sense, but to send the love one human sends another -- not because we know each other, but because we all are kindred.

    I wish I could just hug you and absorb some of your pain.  Take some time for yourself, my dear -- we will pick up the slack -- we will change this country for your daughter and son and so many other children who desparately need a chance.

    I send you only my thoughts and energy.  Peace and blessings to your family.

  •  Used to volunteer to work (8+ / 0-)

    with autistic kids many years ago. We would take them to the local Y and use their swimming pool. It was hard to see these beautiful children try to enjoy the simplicity of having to swim with others.

    Did this probably 20 or 25 years ago. To this day I can't get the images of these kids out of my mind.

    Maybe I should go back, I don't know, but I do know one thing, McCain last night confused Downs syndrome & autism. They are two different inflictions totally.

    I wish McCain could have spent an hour with our Kids back then. Maybe he would now know the difference. The man is not anymore intellectually curious than bush.

    " In our every deliberation,we must consider the impact of our decisions on the next seven generations" From the great law of the Iroquois confederacy.

    by flatford39 on Thu Oct 16, 2008 at 07:11:45 PM PDT

  •  Thank you for sharing your anguish (9+ / 0-)

    I wish your family all the best.  People need to know the hard times that real families are going through.  I share your hopes for Jan. 20, 2009.  Hang in there.

  •  I wish I could do more. (7+ / 0-)

    I'll be canvassing the last two weekends, especially for the kids and their future.

    "Good to be here, good to be anywhere." --Keith Richards

    by bradreiman on Thu Oct 16, 2008 at 07:11:51 PM PDT

  •  First, hugs and whatever other support I can (21+ / 0-)

    give.

    But, second, and this is important, I know something about autism and I know something about research and I know something about  brains.  And the biggest thing we know is that we know very little.  When you write that the 2-5 year age range is the best ... well, yes.  But do we know what happens later? No, we don't know.

    Believe me.

    I've got an MA in special ed.  I've got a PhD in psychometrics, I work as a statistician, I have learning disabilities myself, and a son with LD.  And now, I work in a lab analyzing EEG data, some of it on autistic kids.

    Do NOT give up.

    Please.

    OK, a personal bit...yes, I know, I am not autistic, but... When I was 5 a psychologist told my mother I would never go to college.  She did not believe him.  I got my BA at 20.  Yes, I know that is not in the cards for kids with full blown autism.  My point is that, as Niels Bohr said:

    predicting is very difficult, especially about the future

    Some ideas on research.  I am, as I said, a statistician. I've evaluated a lot of research in education.  Huge amounts of it are dreadful, and in both senses of that word: They induce dread, and they are very poorly done.

    Then that research is translated into language for parents and others ... and a lot of the detail is lost.  

    Then, EEG data.  It is pretty clear from these data that autism is not one thing.  

    I am not going to say "everything is going to be fine"; I would never say that to anyone with a special needs child.  Everything will not be fine.  But things may improve.  They may improve a lot.

    We really know very little about brains, although we are learning.  

    So, please .... hope.

    •  Yes -- we do keep hoping (8+ / 0-)

      It's hard though when you have an opportunity for something that will help your child, like a good school program, and someone takes it away.  They're asking me to sacrifice my baby to the bottom line.  I can't do that.

      I try to keep up with the research.  I attend conferences when I can, and a lot of the current research is very exciting.  I always hope.  If I didn't, I'd surely go mad!

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Thu Oct 16, 2008 at 07:32:05 PM PDT

      [ Parent ]

    •  one thing we do know (9+ / 0-)

      is that the brain remains plastic for much of a person's life span.  This is very promising news indeed.

      We also know that ABA may be effective with some children, but Lovaas's work has never been successfully replicated and the idea that it's the only research-based therapy for children with autism is not true. And a lot of ABA programs are really poorly run.  I'm glad that revelwoodie is seeing good results with her son, especially the ones that generalize to other settings!  (I know of adult autists who are very, very angry to have been "recipients" of ABA.  Obviously YMMV.)

      There are other therapies, such as Pivotal Response Training, that allow the child to have more of a say in his/her own life (e.g., the goals relate to the child's wants/needs and not the skills trainer's). Unfortunately many of the good therapies are equally labor intensive, and therefore no less expensive than ABA.

      So, plf515, I agree with you: There's a LOT we don't know, and a lot of hope to be grabbed on to!  There's also a LOT that parents can do at home, such as picture schedules, 1:1 time, etc.

  •  I'm so sorry... (11+ / 0-)

    I have a friend with a 12 year old son with autism, and I can't believe what she goes through 24 hours a day with this little person whom she loves so dearly, and who is so, so difficult to be with.  I'll think of your family when I vote on November 4.  This is one of the next civil rights battles.  Give your sweet babies a hug and get ready to fight - you won't be alone.

  •  My heart goes out to you (7+ / 0-)

    I am so sorry to hear of your pain and the criminal way that you and your daughter are being treated.  I am with you in your anger at McCain's cheapening of your family's plight to try and sound good in the debate. Part of the totally messed up priorities of a nation that would rather spend billions throwing our young people off to die in search of oil than care for the needs of your daughter and the others with needs and illnesses here at home.  I wish and hope for you that some answer may be found before it's too late.  And I commend you, really, for throwing yourself into the election.  I suffer from several under-funded, under-researched chronic illnesses.  None of them are center-pieces of this election, but I can give meaning to my struggle when I join in in the campaign.  You are inspiring me.  We must stand for something bigger, to hold out some hope of a better future.  Bless you and your family.  

  •  Where are the words? (4+ / 0-)

    My heart breaks for you. I witnessed my parents struggle with my mentally handicapped sister and can only somewhat empathize with your struggle. God bless you, friend. Please know that my most earnest thoughts and prayers are with you...and with our country. Change is needed on so many fronts. I hope we are all prepared to step up and do our part so that parents like you can receive the help they need. We are a better country than this. I know we are. Here's to hope...and here's to help for you and your precious Audrey.

    We are the fruits of one branch, the leaves of one tree, the flowers of one garden...

    by OkieFem on Thu Oct 16, 2008 at 07:13:03 PM PDT

  •  Of all the lies put forth by McCain/Palin... (7+ / 0-)

    ...the garbage that they will do more to help families with disabled children is the most infuriatingly disgusting.

  •  my thoughts and prayers go out to you (6+ / 0-)

    your children are lucky to have you as their mother.

    For every swing to the right, there will be a swing to the left.

    by livjack on Thu Oct 16, 2008 at 07:13:44 PM PDT

  •  Caring prayers from an uncle with an autistic (13+ / 0-)

    nephew and a evangelical mother who would not get services.  AFter a messy divorce, he is doing much better, but he got  nothing until he was 3.

    My heart and hope goes out to your daughter and to you.  My wife has an autistic child in her class who was severe and started getting services when he was a few months old.  His mom was teacher, and she worked with him daily too.  Today, if you walked in the room, you would recognize his slight symptoms.  Most people would not.  There is hope.  He plays in the band.  Have faith in the possibility of expectations.  

  •  READ: "Embraced By The Light". Betty J Eadie (2+ / 0-)
    Recommended by:
    boofdah, GreenMtnState

    I just lost my sister to cancer.  This book is one of the best I've ever read in my 50+ years.

    So sorry for your loss my friend.

    Prayers and thoughts for you.

    Democrats: The party of "We The People"

    by DannyB on Thu Oct 16, 2008 at 07:14:27 PM PDT

  •  good luck in your battles (8+ / 0-)

    I've fight similar fights, sometimes winning, sometimes not. A good disability attorney can be a tremendous resource. We needed one, and it was a tremendous help.

    You have more sympathy from me than I can say in a comment. In the future, when the time is right, I may be writing a similar tale of shattering events relating to autism, support services or the lack of them, and the impact on lives and communities.

    But not now. Fight the good fight.

    Fear is the mind killer - Frank Herbert, Dune

    by p gorden lippy on Thu Oct 16, 2008 at 07:14:42 PM PDT

    •  We retained the best... (4+ / 0-)

      ...special education lawyer in the state the day we started running into trouble with our son.  She's been with us for about two years now, and she's a killer.  That's one reason I have to be really hopeful about court.  (Of course, we'll be in debt for the rest of our lives!)

      But it still all depends on what judge we get...

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Thu Oct 16, 2008 at 07:40:17 PM PDT

      [ Parent ]

      •  true enough about the judge, but (3+ / 0-)
        Recommended by:
        4Freedom, revelwoodie, Shuruq

        your attorney sounds excellent, which is great, and the greatness of an attorney at least in part is the ability to state clearly what the law is and how it pertains and should be invoked in your case, diminishing somewhat the judge factor, though not eliminating it altogether.

        We were fortunate enough that our attorney fees had to be paid by our school district. Otherwise, I don't know how we'd have managed.

        I hope the support of this community gives you strength as you fight on.

        Fear is the mind killer - Frank Herbert, Dune

        by p gorden lippy on Thu Oct 16, 2008 at 07:48:30 PM PDT

        [ Parent ]

  •  Have you tried acupuncture treatments? (5+ / 0-)

    There's a lot of information online about what's available and what can help. My acupuncturist has had some notable successes with autistic children -- I've seen their progress. I wish you and your family the best in whatever course you find yourself on.

    •  No, but... (4+ / 0-)

      ...My son is pathologically afraid of needles.  When we got bloodwork for him, we had to take him to the hospital and it took 4 orderlies to hold him down.  He was two.

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Thu Oct 16, 2008 at 07:41:48 PM PDT

      [ Parent ]

      •  The most important thing is finding someone whom (2+ / 0-)
        Recommended by:
        dogemperor, 4Freedom

        your kids feel comfortable with. As I understand, needles are the most effective course, but there are alternative/supplemental treatments that include gentle stimulation by hand or machine, herbs, diet, etc. You can probably find a practitioner who's willing to work with you.

      •  Mercury Chelation is the gold standard for (1+ / 0-)
        Recommended by:
        4Freedom

        successfully treating autism, along with diet.

        "Mercury Chelation" means to chemically bind and remove the Mercury in the body and the brain that is causing the autistic syndrome.

        A brand new orally-taken chelator ("OSR") was approved & introduced to the market this past July, and it promises to be the most effective chelator yet at binding and removing Mercury.

        Reply to my comment post here with your comment post with your email address, and I will point you in the right direction via a private email.

        There is also a whole body of medical doctors nationwide called DAN! doctors (Defeat Autism Now!) who prominently use Mercury Chelation to treat autism.

        Physical/psychological therapy or even prescription meds will never cure your children, because such does not remove the Mercury heavy metal which is the root cause of the autism.

        You can just call me Swiftie.

        by SwiftBoat McCain NOW on Fri Oct 17, 2008 at 05:58:28 AM PDT

        [ Parent ]

  •  Who is your Congressman? (5+ / 0-)

    I would send him or her a letter or call his office. i would also call your state representatives and local county elected officials. I would also call the Obama campaign. Someone in those organizations should at least (in theory) be willing to help.

    •  my hear to you and your children and husband (1+ / 0-)
      Recommended by:
      4Freedom

      you may have gone the route of public officials already, but a Congressional staff person can sometimes cut through, or is there a state level advocate for kids with disabilities in your State?  this is way to hard to fight alone, are you in contact with a lawyer who specializes in special needs advocacy?  or a media person who can push with you?
      From a different condition, I too fought for the life of one of my children for many years, and thank God there was improvement-
      you are  courageous and strong, tell yourself that every day- You are a Warrior!

      with hope,

    •  Good point... (3+ / 0-)
      Recommended by:
      SherriG, 4Freedom, Shuruq

      My congressman is a Republican - Chris Smith.  I'm campaigning for his challenger, Josh Zeitz.  I would feel very strange asking him for something.  But he is very active with autism advocacy.  Central NJ is the autism capital of the known universe, so that's probably why he continues to get reelected in a blue district!

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Thu Oct 16, 2008 at 07:34:23 PM PDT

      [ Parent ]

  •  My heart breaks for you..... (3+ / 0-)
    Recommended by:
    SilverWings, SherriG, p gorden lippy

    Your children are so lucky to have you as parents.

  •  As with so many others (3+ / 0-)
    Recommended by:
    SilverWings, SherriG, p gorden lippy

    on this thread

    all of my heart goes out to you and your family.

    I'm in awe of your strength.

    "Oh Harold, that is wonderful. Go and love some more." Ruth Gordon to Bud Cort in Harold and Maude.

    by TNThorpe on Thu Oct 16, 2008 at 07:15:50 PM PDT

  •  You cannot give up. (5+ / 0-)

    For me, and for the other parents of special needs kids.

    When I read this I was afraid that your daughter had died. She is not dead. She is living, albeit in a different world from yours. I know it is hard, but you must believe in a future for her. Please.

    You are her best advocate, I am sure you know this.

    Do not give up on any dream that you have for your children. This is what keeps me and other parents of autistic kids going.

    thanks for your diary and your efforts

    ...there's a rose in the fisted glove and the eagle flies with the dove - Stephen Stills

    by NuttyProf on Thu Oct 16, 2008 at 07:15:56 PM PDT

  •  More hearts with you (3+ / 0-)
    Recommended by:
    SilverWings, TNThorpe, Kharafina

    We are so sorry for your pain and loss, with your pop-pop and your children.  You must always have made your grandfather proud, because you were obviously raised to know and do what's right even when you have so much to bear.

    Thank you for what you're doing in looking out for other mothers' children.  I will think of you and re-double whatever I can do in my own community to try to help.

    We're all with you.  

  •  You're in my prayers (3+ / 0-)
    Recommended by:
    SilverWings, alexa100, Kharafina

    I'm so sorry. I don't know what else to say. Keep fighting.

    Nothing can stand in the way of the power of millions of voices calling for change.

    by apip0115 on Thu Oct 16, 2008 at 07:16:10 PM PDT

  •  So sorry. I feel your pain; no, really, I FEEL (1+ / 0-)
    Recommended by:
    AllisonInSeattle
    your pain.  Thank you for sharing your story & re-emphasizing the importance of understanding the difficulties of others.

    Empathy is THE most important quality.

    Former soldier. Fighting for my country. Every day.

    by SilverWings on Thu Oct 16, 2008 at 07:16:32 PM PDT

  •  I wish I COULD say something (5+ / 0-)

    To make it better. Though no one who hasn't gone through your situation can know what you feel, I've learned about the flip side through my little sister, who teaches special ed. I've heard her frustrations at having to do too much with too little and trying to make headway against an establishment that truly doesn't understand the struggles children like your son and daughter face,  and what parents like you must endure. She wants to help her students and she does, but I know she feels like she could do more. That's probably why McCain's smarmy use of Trig Palin, and his getting Trig's condition wrong, bothered me out of all proportion.

    So while I can't know your pain as a parent, I can share your outrage as a voter and citizen at the hypocrisy of the nominee of the party of supposed godly values lying about what he'd do to help the most vulnerable among us.

    "Nothing worth having comes without some kind of fight. You've got to kick at the darkness until it bleeds daylight." --Bruce Cockburn, "Lovers In A Dangerous

    by AustinCynic on Thu Oct 16, 2008 at 07:17:17 PM PDT

  •  You must have been seething, no, ripping (7+ / 0-)

    last night while McCain tried to use your children (and the other 1,000,000+ Americans with autism) for his political gain.

    Every time he used the word I thought about the struggles of all of my patients with autism, past and present, including those who did not get the 25+ hours weekly, those with delayed diagnosis, and those whose parents refused to accept the diagnosis.

    I hope our future reveals cause and cure. I hope your next IEP is dramatically better.

    "And tell me how does god choose whose prayers does he refuse?" Tom Waits

    by madaprn on Thu Oct 16, 2008 at 07:17:24 PM PDT

  •  Why? (1+ / 0-)
    Recommended by:
    dogemperor

    Every year the rates of autism increase

  •  It is stories like yours ... (2+ / 0-)
    Recommended by:
    p gorden lippy, alexa100

    that make me determined to do everything in my power to elect Obama/Biden as well as local Dems.

    I am so sorry for what you and your family are going through.

  •  "Joe the Plumber" (3+ / 0-)

    Doesn't want to be "punished for his success."  He doesn't want a dime of his "hard-earned" pay to go to your children.  FUCK HIM.  Fuck the Republican Party.  God Bless you and your little angels and God Bless the next President of the United States of America: Barack Obama.

    "I shall never surrender or retreat." --Lieutenant Colonel William Barret Travis

    by badger1968 on Thu Oct 16, 2008 at 07:17:53 PM PDT

  •  Hang in there. (1+ / 0-)
    Recommended by:
    4Freedom

    and keep posting. Your story should be heard.
    My thoughts and prayers are with you and your family.

  •  Blessings to you and your family (2+ / 0-)
    Recommended by:
    4Freedom, alexa100

    may the assistance your daughter needs NOW open up for her, answering your prayers.

    Well... the transgendered star fruit is making it impossible for me to fuck my watermelon. --JeffLieber

    by MsGrin on Thu Oct 16, 2008 at 07:18:38 PM PDT

  •  Talk to NYCeve (3+ / 0-)
    Recommended by:
    Spekkio, CanyonWren, Interceptor7

    She might be able to help.

  •  My sympathies (5+ / 0-)

    I have a nephew who is autistic.  Thankfully, he was diagnosed early, and was able to get into a number of programs for early intervention.  He's made a lot of progress over the years, but still needs a lot of work.  Those programs work and you are doing the right thing in fighting for your daughter.  

    Good luck, and keep fighting. Hopefully, with new adminstration, they'll actually walk the walk, instead of talking the talk.  

    Tipped and recommended.

    I think that I have had enough of you telling me how things will be. Today I choose a new way to go ... and it goes through you!

    by Norbrook on Thu Oct 16, 2008 at 07:19:37 PM PDT

  •  You have my sympathy (0+ / 0-)

    I feel bad for you. I will say a prayer for your daughter.

  •  I hope you have a good lawyer (0+ / 0-)

    My prayers with you

    Try some advocates dont have any names  but good luck

    "I have to tell you, he is a decent person who is going to be president of the United States . Meiling Hussein is my nu name

    by maylingblu on Thu Oct 16, 2008 at 07:20:01 PM PDT

  •  Stories like these are the reason I'm working (2+ / 0-)
    Recommended by:
    AllisonInSeattle, alexa100

    so hard for this year.  

    November 4th. All day. Driving people to the polls in the battleground state of Missouri.  Kansas City, to be exact.

    I'm sorry for the bureaucratic, stingy policies that have led you to this tough spot.  Republican policies are mean as hell and they need to be dealt with in a forceful and legal manner.  We'll vote in more and better Democrats.  I wish there was something I could do to make your child's life better immediately. Barring that and reading your diary, I guess I'll have to settle for your remedy. Get out the vote people. Get! Out! The! Vote!

    Good luck to you and your family.

  •  revelwoodie, we can do (4+ / 0-)

    better in this country. I know it. We can do what needs to be done to make certain that our children, no matter what, have what they need and that parents are driven to despair by an unfeeling, impersonal, inhuman, inhumane "system". To me, this is what this election is all about. It's about people people coming first, as families, communities and a nation -- people who all experience grief and pain, happiness and joy, people who who care about each other and are willing to work together to make things right, to help us all restructure this country in a way that makes life what it should be for families, communities, everyone.

    Thank you for posting this. God bless you and your family. fwiw, my thoughts and prayers are with you.

    "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." ML King

    by TheWesternSun on Thu Oct 16, 2008 at 07:20:15 PM PDT

  •  sad, but you can help (6+ / 0-)

    The fact that you are interested in helping her cope makes a world of difference. I was what they formerly called high functioning and today the name is Asperger's Syndrome. My parents heard repeatedly that something should be done for me and they just refused - "He's fine."

    There are resources online you might not have found yet ... the best discussion for AS and autistic parents is not public. Drop me a note and I'll point you in the right direction.

  •  Thank you for your brave and angry words (0+ / 0-)

    You have a righteous cause and I pray that the court will rule in your family's favor.  Education is every child's right.  We have a solemn duty to fight for your childrens' futures.

    I am so very sorry about the loss of your grandfather, whose goodness surely lives in you and your children.

    "Sarah Palin is the distilled essence of wingnut." -- John Cole

    by GreenMtnState on Thu Oct 16, 2008 at 07:20:49 PM PDT

  •  I am so sorry (7+ / 0-)

    I am a Mom, and was blessed to have a child with no disabilities.  My sister has an autistic child and I know the heartache and effort you have to go through.  When we have our kids running around and my sister's daughter sits alone and still doesn't talk it has been one of the most heartbreaking things in the world.  I cannot imagine how hard it must be for her to watch our kids make their milestones and hers never will.

    I am sickened that you have to fight to raise a child with special needs in a country that has so much.  I am so hopeful that things will change for the better under Obama's administration.  I really believe he cares.  

    The arrogance of McCain's assertion last night that Palin was an "EXPERT" in autism because she has a baby who is also handicapped was breathtaking in its insensitivity.  Take it personally.  We all should.

    If you cannot go to the headquarters, don't go.  You have earned yourself a break.  MANY breaks.  I bet it might be something good for you, though.  Get your mind off this briefly and give you a couple minutes to breathe.

    Again, you have my sincere apologies.  What a nightmare.  

    "My Momma always taught me to play by the rules, and if you don't that's called cheatin'." - Donna Brazile

    by jjmn on Thu Oct 16, 2008 at 07:21:24 PM PDT

  •  (((hugs))) (4+ / 0-)
    Recommended by:
    teritaki, dogemperor, mayim, second alto

    for you and Audrey and your son and husband too.

    When my daughter was 3 years old we found a special place.  Its focus was on brain-injured children and children who don't quite meet the requirements for additional assistance in regular schools but will not be as successful as they could be without assistance.  They invited a few regular needs kids into their Montessori-based preschool classroom and my daughter was one of them.  The parents and the kids that I met at that center were amazing.  I ended up heading up the parents association at the center for 3 years and well after my daughter had moved on, because the parents who needed it to be successful were already stretched so thin and giving so much of themselves.  

    I suspect that you are like they were.  Amazing people who give so much and fight so hard for their children.  

    Cry as much as you need to.  We'll fight alongside you.  It's so important. Let us know what we can do to help you in the next 19 days.

  •  You are a brave person (1+ / 0-)
    Recommended by:
    second alto

    My heart breaks for you.

    It is difficult to let go of all your dreams of what you believed motherhood would be like: no little league, no tea parties, no school plays....

    But you are brave and you are strong. So take time to regroup and gather your strength, then bring it on and fight!

  •  well, the good news is (0+ / 0-)

    there won't be any tax increases under John McCain!

    Seriously, these services cost money. Republicans and Democrats alike are touched by this condition. Wouldn't it be great if people of both parties would agree to contribute money (via taxes) to fund these programs, which are easily $80K a year per child?  (In my state, CA, that's about 15 times the average per-child school expenditure.)

    To the OP: I am sorry you are grieving. What a hard day you've had. I hope that, in time, you will be able to see the marvelous things in each of your unique children. They need you to see them for who they are, and to be happy with what you see.

    There are some really well-adjusted parents of children with autism who've been through the same struggles as you but have not lost themselves to despair. One blog I like is written by a mom like you with 2 children with autism (and 2 without). Maybe you'll like it, too. She gives a lot of hope.

  •  Hang in there and keep fighting. (2+ / 0-)
    Recommended by:
    CanyonWren, Rick in Oz

    We're behind you. We will change this nation's priorities.

    Condolences for the loss of your grandfather and best wishes for your son and daughter.

    "It's no wonder more people call themselves Democrats; it's easy to identify with a party that identifies with you." --srmjjg

    by Dragon5616 on Thu Oct 16, 2008 at 07:24:56 PM PDT

  •  Hugs too (2+ / 0-)
    Recommended by:
    4Freedom, CanyonWren

    Every comforting thought I have, and every prayer in me is with you right now.

    "People can come up with statistics to prove anything. 14% of people know that." - Homer Simpson

    by Palicro on Thu Oct 16, 2008 at 07:25:26 PM PDT

  •  a gorgeous, heartbreaking diary (2+ / 0-)
    Recommended by:
    TheGreatLeapForward, CanyonWren

    revelwoodie, thank you so much for sharing this story with us. It is other people understanding what each of us is coping with in our personal lives that promotes understanding and empathy -- and if that isn't the definition of the difference between R and D, I don't know what is.

    I assume you know your local protection and advocacy agency as well as the back of your hand. But they are supposed to be operating in every state to advocate for appropriate placement. I used to work with Wyoming P&A decades back.

    Good luck to your precious daughter, and son as well as you and hubby.

    Turn the Mountain West blue! Support Gary Trauner for Wyoming's only House seat!

    by kainah on Thu Oct 16, 2008 at 07:25:37 PM PDT

  •  My wife and I (11+ / 0-)

    just took custody of my 11-year-old son from a previous marriage because his mother couldn't handle it any more - she had him for the last 7 years. Kyle is severely autistic. Basically, he's an overgrown 4-year-old. He can't be on the computer too long or he gets overstimulated. But he is very smart. Knows about the potty but is still in diapers because he doesn't let us know before, but after a bowel movement. We think he can read, but he can't rally talk. He can force out words ("appa" for apple, "koo-kee" for cookie) but if he talks, most of the time he babbles. (Kyle just had a huge meltdown at K-Mart today because he wanted to go home instead. I had to yell at the people who were staring at us.)

    He was in an ABA school in Minneapolis for the last few years.

    Best of luck - I'm in Westfield, NJ (a decent district by most accounts) and he will be placed out (or so we've been told) - he hasn't been processed yet because he just got here on Sunday...

    You are not alone - email me at isthisrob at yahoo dot com if you want to talk.

    The blog that mixes pop and politics - The Great Leap Forward. -5.75, -4.72

    by TheGreatLeapForward on Thu Oct 16, 2008 at 07:26:49 PM PDT

    •  This info is downthread a bit at Caroline 3481 (3+ / 0-)
      Recommended by:
      javelina, dogemperor, 4Freedom

      and may benefit your son:

      There is a dr in NJ getting amazing results with autistic kids, and doing ongoing research into the area. Look at the website for www.drneubrander.com  He has treated my daughter, who is not autistic, but has problems common in autistic kids. I have personally seen miracles for some of his patients. However, he is in NJ, although he does a lot of phone appointments for most of his patients. And getting insurance coverage can be a nightmare. He is running research studies in the hopes of having the validated proof of the HBOT and MB12 protocols so that insurance will have to cover it. Excuse me if you have already seen/heard about this-I'm sure you have scoured the web. Best of luck in your journey, and prayers for healing.

      "We, two, form a multitude." --Ovid

      by CanyonWren on Thu Oct 16, 2008 at 09:34:51 PM PDT

      [ Parent ]

    •  Just back from Westfield (3+ / 0-)

      My sister lives there because it has among the best services for her son who just turned five, also a special needs kid.

      The daily disagreements with teachers and the system is depressing and stressful. But it's more than what she would get in most other counties or cities in America.

      It's heart rending to think of just how much good we could have done for kids all over this country with the $10B we're spending in Iraq.  

      My nephew is pretty functional, and I'm very, very relieved about that.  I cannot imagine how she would have coped if he had symptoms that were any more severe. As it is, coping with him being unwell, having constant surgeries, and making sure he gets the medical treatment he needs has been incredibly difficult.  

      My heart goes out to you and the post author and every single parent and family member who's coping with a special needs child.  You are all heroic in my eyes.

  •  I wish your daughter was as lucky as I was (21+ / 0-)

    I have autism, and being a high-schooler with the condition is painful. My mother fought for the help I needed, and learning about what she went through just so I could have a chance at a more normal life was heartbreaking for me.

    If I can tell you anything, it is that both your son and daughter, no matter what happens now, will thank you someday for what you did. It is people like you that inspire the rest of us, and I have no doubt that your children will make you proud.

    I cannot say I know what you must be going through, but I do know how much I appreciate your commitment.

    My best wishes.

  •  gee revelwoodie, I don't know what to say (2+ / 0-)
    Recommended by:
    4Freedom, CanyonWren

    I hope you have access to a decent lawyer. I know a bit of what you go through, I've had a minor glimpse myself and it can be just debilitating. I hope you get all the support you need and your daughter deserves. Persevere and post here about your progress.

  •  Miss, it's NEVER too late (17+ / 0-)

    I'm an Asperger's autistic. 21 years old. I know it's not the same as what your children go through, but I still had to come such a long way when nobody expected me to. And no matter what assholes cut the budget, or the latest incompetencies of the public school system, or how severe a disability may be, I must say that it is never too late to have a life.

    Many of us know this line, and it especially applies here:

    Hope is a good thing. And no good thing ever dies.

    You Will Believe A Man Can Fly

    by rocksteady758 on Thu Oct 16, 2008 at 07:29:04 PM PDT

  •  There are no words (2+ / 0-)
    Recommended by:
    4Freedom, CanyonWren

    I'm at a loss, all I can do is send my heartfelt thoughts and prayers to you, your daughter and your family tonight.

    May your strength become her's Photobucket

    "It's a magical world Hobbes, ol' buddy... ...Let's go exploring!" Calvin (Bill Watterson)

    by BirderWitch on Thu Oct 16, 2008 at 07:29:49 PM PDT

  •  Did you know about COSAC? (4+ / 0-)
    Recommended by:
    4Freedom, expatyank, beltane, revelwoodie

    http://www.njcosac.org/...

    The New Jersey Center for Outreach and Services for the Autism Community - lots of resources there.

    The blog that mixes pop and politics - The Great Leap Forward. -5.75, -4.72

    by TheGreatLeapForward on Thu Oct 16, 2008 at 07:30:13 PM PDT

  •  My heart goes out to you--and some advice (6+ / 0-)

    I am so sorry for you and your family. I have a happy healthy 3 year old son, who when he was 2 spoke only "up" and "down". As recently as 6 months ago we had people telling us that he had some form of Autism. We intuitively knew that he didn't and was simply speech delayed based on his otherwise fine interactions.  Thanks to early intervention programs and a strong pre-school that we can afford he is flourishing and will likely be off CPSE next year.  That said, there mere thought of this awful condition is heartwrenching.

    Having to live with it now twice, I am so sorry.

    That said, sue the SOB's! Go out, hire a good ESQ. with an education advocacy background (your local Bar Association usually has practice area referrals) and sue.  Often in SPED the District will squeeze those parents who it thinks won't fight back (like an HMO company) fight back and you'll likely get your placement.

    Good luck

    "Do or do not. There is no try." ---Yoda

    by nyunion on Thu Oct 16, 2008 at 07:31:09 PM PDT

  •  Just how many hours of intervention (9+ / 0-)

    for autistic children would $700,000,000,000 buy?

    if roughly 2,000 hours a year are required to maximize the prospects for success...

    that gets you 350,000,000 years for 1 kid, divided by the cost per hour of instruction. Let's go with it being something really steep, say, $100/hr

    that gets us 3,500,000 years' worth of instruction for 1 kid

    or

    if about 15,000,000 kids are in the at-risk band
    and 1 in 150 kids are at risk

    roughly 100,000 kids

    or 35 years of full intervention for every child who needs it, assuming arithmetic steady numbers of children at risk.

    Have you accepted Spam as your personal Lord and Savior? :)

    by cskendrick on Thu Oct 16, 2008 at 07:32:09 PM PDT

  •  This may not be possible for you, but check out: (3+ / 0-)
    Recommended by:
    javelina, 4Freedom, CanyonWren

    There is a dr in NJ getting amazing results with autistic kids, and doing ongoing research into the area. Look at the website for www.drneubrander.com  He has treated my daughter, who is not autistic, but has problems common in autistic kids. I have personally seen miracles for some of his patients. However, he is in NJ, although he does a lot of phone appointments for most of his patients. And getting insurance coverage can be a nightmare. He is running research studies in the hopes of having the validated proof of the HBOT and MB12 protocols so that insurance will have to cover it. Excuse me if you have already seen/heard about this-I'm sure you have scoured the web. Best of luck in your journey, and prayers for healing.

    •  wher is he? I might refer some parents (3+ / 0-)
      Recommended by:
      javelina, 4Freedom, CanyonWren

      to him ( off the record, that is )was he ever with Dr. Menashe?

      •  Dr James Neubrander (0+ / 0-)

        www.drneubrander.com

        I don't know if he was ever with Dr. Menashe, sorry. I will also note that when we consulted about my niece, his staff asked us to try a GFCF diet first, as it sounded like that was her real problem rather than true autism. WIthin three days she was a diffferent child, and all she has needed is a gluten free casein free diet. Is it a pain? Yes, but worth it to have a healthy happy child again. A child who needs a GFCF diet, for some reason, almost always has a red ring at the opening of the anus-bright red. It's a useful symptom, althiugh the evidence for this is anecdotal. Best of luck!

    •  Wow, great information (1+ / 0-)
      Recommended by:
      javelina

      "We, two, form a multitude." --Ovid

      by CanyonWren on Thu Oct 16, 2008 at 07:53:05 PM PDT

      [ Parent ]

    •  I'm kind of surprised (3+ / 0-)
      Recommended by:
      cvannatta, 4Freedom, codeman38

      that anyone is still pursuing either of these interventions. There has been clinical research on several B12-based biomedical therapies over the years (it was still "flavour of the month" when we got started) and has not proven very effective. That said, there isn't just one cause behind hat we call autism, and there are likely to be multiple biomedical options that are only helpful for a small segment, in the same way that there's a small segment of people diagnosed with schizophrenia who are actually suffering from a niacin deficiency. We did the SuperNuThera formula (the one Bernie Rimland consulted on) and a few others back in the day. Oddly, the one biomedical thing we thought seemed helpful was a supplement usually used by bodybuilders, DMG--but I don't know why it helped (it could have been pure coincidence...), it wasn't a proper clinical trial, so I can't really recommend to others.
      HBOT is being sold as a panacea for almost everything at present. I hope this doctor IS setting up well-designed clinical trials, though, because even i it's only useful for a few, that would be good information to have.

      Political Compass says: -8.88, -8.67
      "We never sold out cos no one would buy."--J Neo Marvin

      by expatyank on Fri Oct 17, 2008 at 02:50:48 AM PDT

      [ Parent ]

      •  I own a health food store and a father came (0+ / 0-)

        in a few years ago for DMG. He said his late-twenties son socialized much more when taking DMG.

        Here is a link with some information that might be helpful.

        10/03/08 = America's economic 9/11

        by 4Freedom on Fri Oct 17, 2008 at 09:25:59 AM PDT

        [ Parent ]

      •  Further information (0+ / 0-)

        The B-12 studies are heavily dependent on how and how much for administration. It's fairly easy to get it wrong. The shots have to be subcutaneous (fat) and not in muscle; they seem to work best on a three day schedule, although there are exceptions; they have to be the right kind-the methylcobalamin from Japan is the highly effective kind, and you have to use a pharmacist who really knows what he/she is doing. However, there are some non-responders, and as you say, autism is a multi-spectrum disease.

        The HBOT (hyperbaric oxygen therapy) has to follow a certain protocol to get good results. Every day for at least an hour for a month, and then a month off, generally. The improvement from HBOT studies is very exciting. The brain is mapped with SPECT and QEEG scans before and after, and the improvement in brain activity and neuron connections is extremely encouraging. So that's solid feedback, not just behavioral feedback inforamtion from parents. These studies are in sync with the information that is coming out from studies that use HBOT for stroke problems, brain injuries, and other brain insults.

        Neurosensory programming, which looks like a video game to the kids, is also extremely promising, with excellent results in veterans with brain injuries.

        However, none of this is going to help without the money and resources to do it. Caring for special needs children makes every day life incredibly exhausting and it becomes so hard to do anything but the basics. Parents of these and other special children are true heroes.

  •  bless you and your daughter (1+ / 0-)
    Recommended by:
    4Freedom

    and all the families and children going through this physical state that many of us don't know or understand. I wish you peace of mind.

    -7.38, -5.23 The wait is over. Sen. Obama, walk into your season. It's your time.

    by CocoaLove on Thu Oct 16, 2008 at 07:34:13 PM PDT

  •  My husband and I are trying for children now and (3+ / 0-)
    Recommended by:
    javelina, churchylafemme, 4Freedom

    because of my age, our pregnancy is at higher risk, but we are positive and hopeful.  Your story is quite eye opening and hits home in ways I would not have thought.

    My heart breaks for you and I feel so helpless in light of your struggles.

    I can only hope that my thoughts, prayers and well wishes are somehow comfort for you right now, and that the sense of destiny that you know to be real for your family has enveloped you all and will carry you into a future filled with purpose and meaning.  

    Her cause is now our cause.  Teach us.  Guide us.  Help us to understand your daughter, and her story so that we can make it our own and be a part of the answer.  Your load will be lighter if it is distributed across the masses - as you so eloquently said in your diary.  Tell us how we can help - the charities or non-profits in your area that we might donate to for your daughter; actions we should take; petitions we can sign... anything.  Let us help  you as we are a community and if we can't help one another then we're a pretty pathetic one.

    My heart is with you, revelwoodie.

    "To kill one person is murder. To kill thousands is foreign policy." Chinese writer Moh-Tze

    by ILean Left on Thu Oct 16, 2008 at 07:35:05 PM PDT

  •  We must fight for this, and all other forms (2+ / 0-)
    Recommended by:
    4Freedom, Spekkio

    of social welfare, these are the basic infrastructure and fabric of our society, period!

    ~we study the old to understand the new~from one thing know ten thousand~to see things truly one must see what is in the light and what lies hidden in shadow~

    by ArthurPoet on Thu Oct 16, 2008 at 07:35:10 PM PDT

  •  I pray one day that we become a nation that (2+ / 0-)
    Recommended by:
    4Freedom, Spekkio

    gives a damn, that looks at our children and those who can't fend for themselves, as part of the link that is the fabric of America. That is what makes a nation a civilized nation, that is what a "Christian" nation should be.

    America, They were yours, Honor Them, Do Not forget them-IGTNT.

    by Mr Stagger Lee on Thu Oct 16, 2008 at 07:35:15 PM PDT

  •  I understand where you're coming from. I would (2+ / 0-)
    Recommended by:
    Cassandra Waites, Spekkio

    like to say though - please don't give hope for your daughter. Given the circumstances, it would seem that she needs you to fight for her more than ever.

  •  I am so sorry. (1+ / 0-)
    Recommended by:
    4Freedom

    I hope you can find some help and a little peace of mind. Your burden is just so enormous.

    Always be sincere, even if you don't mean it. - Harry S Truman

    by parker parrot on Thu Oct 16, 2008 at 07:37:22 PM PDT

  •  All of my love to you. (0+ / 0-)

    I am a Mom, too - and God Damn all the fucking bureaucracy.

    You have all of my best love and wishes.

    Bring it on, Old Man - and your Little Maverick Dog, too.

    by Prosediva on Thu Oct 16, 2008 at 07:38:13 PM PDT

  •  thank you (1+ / 0-)
    Recommended by:
    4Freedom

    for sharing your story through your pain. My sister is a special ed teacher (early intervention) for one of the best school districts in Michigan. While her district is flush with money compared to others, she is always shouting about the underfunding of education, both regular and spec.ed. It is shameful. You are an inspiration and your children are incredibly lucky that you are their mother. Even with these enormous challenges, the love you clearly have for your children is palpable. I wish you great peace and success in your fight for their right to a better future. Condolences on the loss of your grandfather, as well.

  •  sigh.. (7+ / 0-)

    I am sorry for your frustration. I am on the other end: I am a case manager for special ed kids. In my state the kids get a separate case manager from the teacher. we are fortunate in having some good county programs for these kids. But honestly, the schools are at a loss as to what to do with some of these kids. As for outside consultants, we are naturally suspicious of them, as they often have an agenda of their own ( consulting fees )and tend to pick apart perfectly sound programs just to be pains in the ass. Now, if you are going due process, understand the district does not have to go along with your consultant, and a judge just might agree with them. If a kid was being ignored for 19 minutes while banging his head, you should file a complaint with the dept of ed in your state,as this out of district placement most likely must answer to them. I understand you may not want to jeopardize your son's placement, but that kind of thing has to be cited. Get in touch with ASPEN or some other group and find out what schools other parents think highly of. What state are you in? In mine, we are no longer allowed to consider private schools before trying public programs. This is the state's way of controlling costs, the students be damned. And I am seeing more and more parents with two children that have special needs. I would counsel too that, unlike Downs, there is a lot about autism that remains a mystery, hence there are tons of snake oil salesmen peddling new treatments. Think Jenny McCarthy. You will find that advocating for your kids is a full time job. The case managers, keep in mind, have 75 or more kids just like yours they have to deal with, and are overwhelmed. Daily, we get letters, which we must respond to in writing by law, detailing what's wrong with our IEP's and what should be done to correct them, demands for sign language, speech on weekends, after school programs, after school nondisabled peer interaction programs, and something new every day we never heard of. Always we are told to say no, but not to tell parents that we are being told to say no. in other words, we have to play the bad guys and look like the pricks, because the law says the IEP team decides, not the school administration ( that's a fact ) of course the members employed by the school are pressured to go along whether they agree or not. Register early with your state's dept of developmentally disabled; they have grant money and you should get a little. Understand, the school districts get punished for having too many special ed kids out of district, and are threatened with, get this, LESS funding for sending kids out. Ya got that? The schools will get funding cuts...for helping children...let that sink in. 40 percent was the promise when IDEA was enacted; 40 percent from the feds, and no one, Dem or repug, has honored it. instead we gotta raise local taxes. and when you have a good program, parents move into your district, straining things further. You see, we are all fighting for the crumbs. No 700 billion for us....

  •  I have no words... (1+ / 0-)
    Recommended by:
    4Freedom

    ...my heart aches for your whole family...those are the kinds of stories that need to be drilled into people's heads about why getting the right things done by our government are so goddamned important.

    It is amazing how much can be accomplished when you don't care who gets the credit - Harry Truman
    PoliticalCompass Scale: -2.13, -2.97

    by floundericiousMI on Thu Oct 16, 2008 at 07:39:29 PM PDT

  •  Your post brough tears to my eyes.... (6+ / 0-)

    While my son is not officially diagnosed with Autism or PDD, he does have a severe global developmental delay.  Communicating with him is a major challenge.  I think I know how your heart aches.  I cannot imagine having this happen twice.  The only hope for our children is robust universal health care that will include services for Speech, Occupational, and Physical therapies.  I am not a particularly religious person but I can tell you that I will be on my knees on the night of Nov 3rd praying that Barack is elected.

    We cannot be complacent.  His lead could disappear tomorrow.  We have to fight for this.  Fight for our children. And as Revelwoodie said, fight for that baby born tonight with an unimaginable disability.

  •  thank you for sharing this (0+ / 0-)

    I am so sorry.

    "No way, no how, no Palin war with Russia." --KariQ

    by andrewj54 on Thu Oct 16, 2008 at 07:40:08 PM PDT

  •  advocating for our children (0+ / 0-)

    You are clearly an excellent advocate for your children - and I am so sorry that the system isn't reaching back with the services your daughter needs in the way it should.

    I hope that you are able to get her placed in an appropriate, nurturing program and that she and you son continue to make progress.

    I also hope that we can re-prioritize as a nation to make sure all children get the support each needs to thrive.

  •  Oh dear. (0+ / 0-)

    I cannot imagine the heartache you're dealing with right now.

    "Cornyn has voted with Bush 98% of the time...I don't agree with my wife 98% of the time!" - Rick Noriega

    by ScottyUrb on Thu Oct 16, 2008 at 07:41:14 PM PDT

  •  As a dad ... (6+ / 0-)

    with a son and a daughter, I know that their physical, mental, spiritual, and emotional health is a blessing to them and to my wife and me.

    My heart goes out to you.  My extended family is touched by autism and that is my personal experience with the enormous physical and emotional challenges parents of autistic children face.

    My daughter volunteered this summer to work with autistic children in a center for children with a wide range of disabilities.  The center is run by a pediatric physical therapist.  She came home every day full of heart and hope by the children with whom she worked.  They inspired her.

    May your children bring you unexpected delight, inspiration to meet the challenges you face, and strength just to get up every morning, especially when your life is touched by loss as it has with the loss of your dear grandfather, to fight the fight they need you to fight for them.

    My thoughts and prayers go out to you and all your loved ones.

  •  Sorry for your pain (8+ / 0-)

    I work with several people on the spectrum. They're very bright, but it's interesting to see what happens when my friend D has to deal with a situation where she has to interact with strangers or with odd lighting -- it's like her IQ drops to 50!

    I'll post more on this later.

  •  My heart goes out to you and your family (2+ / 0-)

    I'm so sorry for you and for your daughter that she is losing her spot in the school due to poor oversight and budget restrictions. Bless you for working hard to elect the people who will fight for everyone's children.

    I have no words of wisdom but please know that so many people are thinking of you and your family.

  •  bawling (8+ / 0-)

    My son is also autistic, and I am reeling beyond belief. I moved to California from Texas in the hope I would get better services for my son. Not so much... the budget here is fantastically lacking, as I am sure the rest of the nation has heard by now. What they may not realize is that it is being felt STRONGLY by the special needs community. We are denied services, rights and dignity on a daily basis. We have to fight. PLEASE DO NOT GIVE UP THE FIGHT. This war (it IS a war) is too important. DONATE, VOLUNTEER, VOTE. Our children are the future, and they are the ones who will carry the torch.

    McCain/Palin: Change They Can Deceive In

    by naviline on Thu Oct 16, 2008 at 07:43:19 PM PDT

  •  Wow. You know when I think about this financial (3+ / 0-)

    crisis, I had been thinking about my family and my friends and loved ones.  When I listen to the debates, I  think of all of the programs that will be cut by either party.  When you personalize it like this, it just breaks my heart.  Your family will be so negatively impacted by all of these cuts.  You and others in your situation should write to Obama and beg him not to make any cuts for this horrible disease.  The victims of autism have already been beaten down by political manipulation.  It is time for change.

    I am sorry about the sad news for your daughter.

  •  on my street alone there are (3+ / 0-)
    Recommended by:
    Agathena, dogemperor, 4Freedom

    2 autistic children and one with downs syndrome.

    tyler, autistic,7 yo, knows me and has received lots of help from the state.

    anthony, also 7 has downs and loves to come and see my dog .

    he stands at the fence and smiles and is happy when she runs up to him.

    when i was growing up we certainly did not have all this autism.

    i am convinced there is a link that is provable and is being swept under the rug.
    i would suggest research looking at the work of bobby kennedy if anyone wants real answers.

    i hope you can find the peace of mind and the help you may need .

    i certainly wish you the best.

    "Do not go where the path may lead, but go instead where there is no path - and leave a trail " -Epicitetus

    by JadeZ on Thu Oct 16, 2008 at 07:46:31 PM PDT

    •  when you and I were growing up (4+ / 0-)
      Recommended by:
      cdreid, cvannatta, javelina, 4Freedom

      parents were told to put children with severe disabilities into state institutions--you can find one family's story here. Every state had them, and they warehoused (and mistreated and abused) thousands of children and adults. These institutions started being closed down in the 1970s, some have only been closed in the last 10 years.
      This has always been with us (although often people with autism never got that diagnosis, and were instead diagnosed as mentally retarded only.)
      It is, of course, possible that there is also a rise in incidence, due to environmental factors. But the vast majority of it is increased visibility and better diagnosis.

      Political Compass says: -8.88, -8.67
      "We never sold out cos no one would buy."--J Neo Marvin

      by expatyank on Fri Oct 17, 2008 at 03:19:10 AM PDT

      [ Parent ]

      •  wrong (0+ / 0-)

        show me the numbers that compare to today.

        they are not comparable at all.

        "Do not go where the path may lead, but go instead where there is no path - and leave a trail " -Epicitetus

        by JadeZ on Fri Oct 17, 2008 at 02:02:53 PM PDT

        [ Parent ]

        •  No population studies were ever done previous to (0+ / 0-)

          the 1980s, so there are no figures to make a comparison to. That's why many of us were so alarmed by the California Regional Centres figures that emerged towards the end of the 90s.
          Since then, though, I've learned a lot more about the number of children who were previously held in large institutions, not to mention the many licensed and unlicensed group homes around the country. To give just one example, the state of New York:  Willowbrook in New York state had 5000 child "inmates," many of whom had autism. The death rate in that place was atrocious. It was only one of the MANY state hospitals in New York incarcerating disabled children. There were also numerous private hospitals, public and private "homes", residential schools for "the retarded" (many actually autistic or autistic with mental retardation), children sent out of state to places like Kansas, where big institutions could be run cheaper, children with autism who did attend school (special or otherwise), and then the children who never attended school and were hidden away.
          Prevalance is a question that's difficult to answer even now. Here in the UK, an academic group is starting the first-ever epidemiological .survey of adults with ASD. We actually have no idea how many there are, where they are, or whether they are receiving services. I've had a close look at the methodology and found it lacking, so this survey will only give us a snapshot.
          Finally, please don't misunderstand--a rise in prevalance IS possible, and I definitely do not discount it completely. We do know there are environmental factors involved. But there has been a great deal of misuse of figures. Please don;t feel personally attacked if you are of the view that there has definitely been an increase--many people agree with you, and there is some evidence in that direction too. I'm keeping an open mind.

          Political Compass says: -8.88, -8.67
          "We never sold out cos no one would buy."--J Neo Marvin

          by expatyank on Mon Oct 20, 2008 at 06:54:35 AM PDT

          [ Parent ]

  •  i'm so sorry for your loss (0+ / 0-)

    our family lost my brother many years ago, i saw what the pain did to my parents then and to this day, please find a professional and talk to them it will help, i didn't seek help until many years later and it took a big toll, stay strong and accept all the love and help that will be there for you, love J

  •  Thank you for sharing your story (1+ / 0-)
    Recommended by:
    Words In Action

    This is why we fight.

  •  God bless you & your family, revelwoodie. And I (1+ / 0-)
    Recommended by:
    TheGreatLeapForward

    was feeling sorry for myself today about my stupid problems.  Wow, did you straighten my ass out.  Thanks for the diary.  If I could directly help you, I most certainly would.  Kossacks keep working at this election for Obama/Biden.  Lives depend on it.

  •  I wish you and your family well (1+ / 0-)
    Recommended by:
    4Freedom

    And although it may seem dark, please remember not to give up hope.  There are always new therapies being developed that may yet assist autistic individuals like your daughter and son--even as they grow older.

    And there is still community.  One of my daughter's friends younger sister is autistic, and she has grown amazingly attached to my little girl.  I am so proud at how my daughter has grown to be her friend too--even through the outbursts and other issues that even the older sister is unable to deal with.  Family and friends can hopefully reach out to your family and provide a light where there only seems to be darkness.

    My prayers are with you and yours.  

    Hope,

    Sean

  •  My heart and tears are with you (2+ / 0-)
    Recommended by:
    The New Politeness, 4Freedom

    I read this diary and cried and felt helpless and then it hit me!  

    You must know that my husband and I had decided to stave off from our weekend canvassing trip from CA to NV this weekend.  We decided that we "deserved" a break from another weekend in 110 degree dusty neighborhoods.

    We have cancelled our lazy weekend plans and we are freezing water bottles right now for our trip.

    We will be thinking of you and your family while we do our part to get Obama elected this weekend.

  •  Where are you? (2+ / 0-)
    Recommended by:
    4Freedom, flumptytail

    I don't know where you are but I'm in a suburb of Cleveland.  If there's anything I can do to help you election day, please don't hesitate to ask.  My addy is in my profile.

    I will keep you and your precious family in my prayers.

    Peace.

    Beth

  •  Sweetheart, my heart breaks for you and your (8+ / 0-)

    precious family.  IEPs are a special place in hell all by themselves.  I battled through many of them raising my special needs child some years ago.  It sometimes feels very lonely fighting that large educational machine.  Even then, no one wanted to spent a cent more than they were forced on "these kids."  Today's economy makes a bad situation even worse.  You'll be in my heart and I wish all the best for you all.  

    Hey, Nine-House McCain, I lost my house, can I have one of yours? Like HRC says, not a moment to waste, not a vote to spare.

    by RoCali on Thu Oct 16, 2008 at 07:48:19 PM PDT

  •  Blessings to you and yours, revelwoodie, it's a (5+ / 0-)

    hard row to hoe. When McSmarmy brought up autism last night as a debate prop I immediate thought of all the parents of autistic kids that the comment hurt. It's terrible that funding keeps going away, it's such a mystery and so hard on the entire family.  

    I'll hold you and your family in my prayers.

    "We, two, form a multitude." --Ovid

    by CanyonWren on Thu Oct 16, 2008 at 07:48:53 PM PDT

  •  As a kid who grew up with what I later found out (9+ / 0-)

    Was a mild form of autism, I have always been a tireless advocate for people like you.  God bless you and good luck, you have friends here...

    "Polls are like crack, political activists know they're bad for them but they read them anyways."-Unknown

    by skywaker9 on Thu Oct 16, 2008 at 07:50:10 PM PDT

  •  Courage.... (1+ / 0-)
    Recommended by:
    4Freedom
  •  It's important to know (1+ / 0-)
    Recommended by:
    4Freedom

    that neuroscientists and other professionals are working very hard to understand autism and other tragic childhood disorders and to help  families like yours. It's also important to know that Barack Obama understands that the key to helping is through scientific research. I wish your family well and hope that you get the help you need for your family.

    "For Ms. Palin, such things as context, syntax and the proximity of answers to questions have no meaning." Bob Herbert

    by UTvoter on Thu Oct 16, 2008 at 07:51:01 PM PDT

  •  We Have Many Similarities... (2+ / 0-)
    Recommended by:
    TheGreatLeapForward, 4Freedom
    I know that you are thinking that you are the only person in the world who is experiencing this particularly nasty flavor of pain.  You're not.  

    First, my heartfelt condolences on the loss of your grandfather.  I truly do understand ... my grandmother raised me (my mother was around physically ... mentally, not so much), taught me about the world and its inhabitants; and how to protect myself against those who would harm me (including my mother).  She lived such a long life that I thought she would live forever, but at 100 years and a few months, she was gone.  Many people seem to think that a grandparent is a distant relative ... you and I and many others, realize that is just not true.  My grandmother shaped my life more than any person.

    And, after years of reproductive health problems and an inability to get pregnant,  my husband and I finally conceived, and gave birth to a wonderful baby boy.  A boy with autism, who is now a thoughtful, intelligent young man of 24, who is still autistic.  I'm not going to tell you that it's all going to be ok ... but don't give up on your daughter.  I realize that your emotional fiber is frayed right now, and that your expression, "I Lost My Daughter Today" is a result of your pain and frustration.  But, I need to say this ... and with all due respect ... FUCK SCHOOL!!!

    I would really like to communicate with you further about your children, especially your daughter's placement. Mother-to-mother.  I'm not trying to sell anything or advocate for any kind of weird dietary supplements.  When life calms a bit for you, please drop me a note.

    Until then ... {{{{HUGS}}}}

    lcolacionhayes_at_gmail_dot_com

  •  Thank-you for sharing this. WE GOT YOUR BACK. (2+ / 0-)
    Recommended by:
    4Freedom, joyful

    If this diary doesn't inspire people to volunteer, nothing will.

    For anyone who can spare 3 hours this weekend click here and find your local Obama HQ.  Call 'em up and let them know you're ready to join the fight. You will meet the most amazing people down there and I promise your only regret will be that you didn't join sooner.  

    Just pull one measly 3 hour shift.  Make a few calls, do some data entry, answer the phones - whatever - everything helps. We will only win this election if we fight like hell and earn it.

    The internet will be here when you get back.

    3 hours is nothing.  We can do this.

    And revelwoodie, I don't even know what to say to you.  This must have been a brutal diary to write and I'm not sure I could have done the same.  Thank-you.

  •  (((((hugs))))) (1+ / 0-)
    Recommended by:
    CanyonWren

    If you think you're too small to be effective, you've never been in the dark with a mosquito.

    by marykk on Thu Oct 16, 2008 at 07:51:39 PM PDT

  •  I am a parent (1+ / 0-)
    Recommended by:
    AllisonInSeattle

    of two, blessedly "normal", little boys.  Your post made me weep.  Literally, I'm snuffling as I write this - I am so sorry for your pain, and I wish and hope that there is something I can do, other than donate money to some blind agency.  I wish there was something I can do for YOU.  Please stay strong.

  •  Beautifully written diary. (1+ / 0-)
    Recommended by:
    joyful

    Thanks for sharing your story with us.

    It's the fascism, stupid!

    by lastman on Thu Oct 16, 2008 at 07:53:42 PM PDT

  •  Sending every possible blessing your way... (1+ / 0-)
    Recommended by:
    joyful

    Let America be the dream the dreamers dreamed...

    by langstonhughesfan on Thu Oct 16, 2008 at 07:53:52 PM PDT

  •  God bless you (2+ / 0-)
    Recommended by:
    joyful, Words In Action

    I don't know what else to say.  Your story brought tears to my eyes the minute I started reading it.  Terrible pain to have to deal with.

  •  I am saddened by the treatment (3+ / 0-)
    Recommended by:
    dogemperor, Cassandra Waites, Spekkio

    you and your children are receiving.

    My daughter was diagnosed with bipolar this spring.   BP parents realize that while it's tough, we have it pretty good.   Our children will meltdown and lash out at us, but when they're stable, we get to hear the "I love yous" and get the hugs.   It saddens me that you can't have a "normal" parenthood, but as a parent of a BP kid and another with diabetes, I realize that being put in those situations changes your definition of "normal"

    "Torture numbers, and they'll confess to anything" ~Gregg Easterbrook

    by googlymoogly on Thu Oct 16, 2008 at 07:54:25 PM PDT

  •  can someone answer why we have so much autism (1+ / 0-)
    Recommended by:
    dogemperor

    in NJ? Just what the hell is going on here? We've long been the cancer capital, now this. Something is not right...

  •  I'm very sorry (0+ / 0-)

    I'm sorry you lost your grandfather.  That pain I can understand all too well.

    And I'm sorry that your daughter won't get the help she deserves.  I don't have any way of really knowing what you're going through - except that I am lucky to be close to my parents and know the void that would be there if we couldn't relate to each other.

    I know I'm just a random internet stranger, but this Audrey is sending positive energy to you and your Audrey.

    That's the difference between governments and individuals. Governments don't care, individuals do. - Mark Twain

    by Coilette on Thu Oct 16, 2008 at 07:56:14 PM PDT

  •  They "love you Mommy." (5+ / 0-)

    Your kids love you.

    You know that, right?  Our baby was, despite a number of scares during the pregnancy, perfectly healthy, lucky for us.  Even though he's a tiny guy, we know enough to know that whatever little he knows at his tiny age, he loves us with all his heart.

    I was very stressed in his early weeks about his health, and I did not get to enjoy the newborn days.  But after his health steadied, I finally realized that he loves us, if he knows nothing else.

    You may be under similar stress.  That stress can stifle the happier moments.  Just in case you haven't had a moment of realization to tell you so, believe me--please believe me:  your kids love you.  They love you with all their hearts.  They love you very much.  And so do I, reading your diary, and seeing what good parents you are.

  •  A Hopeful Diary (0+ / 0-)

    I am awestruck by the power of your diary. God bless you and your family.

    Better days ahead.

    go raibh maith agat

    by jersy on Thu Oct 16, 2008 at 07:59:57 PM PDT

  •  This was hard to read, with tears streaming down (1+ / 0-)
    Recommended by:
    AllisonInSeattle

    my face. My heart goes out to you. Please keep us informed here. And I understand and mourn your love for your dear grandfather. My grandparents saved me in every way a person can be salvaged. Bless you and may Obama win and help you!

    "You are very wise, Van Helsing, for one who has yet to live a single lifetime." - Count Dracula

    by collardgreens on Thu Oct 16, 2008 at 08:01:09 PM PDT

  •  revelwoodie, my heart goes out to you. (4+ / 0-)

    I have a developmentally disabled adult son and I count my lucky stars every day that when he was young and the age of your children, those services were still there.  He attended private schools, all paid for by the state and/or the county, because it was law that if the services for "special needs" children were not available in public schools, the cost of going elsewhere was paid for.  For 5 years he attended the SF Hearing & Speech Center, which at that time ('70's) cost $12,000 a year.  I had to be diligent to make sure he got everything he needed, but did not have to struggle or threaten to sue like parents are forced to do today.  I know those IEPs well - my son had them until he graduated from high school (I mainstreamed him his junior year).  What I do know is that without those services, he would not have accomplished what he did and be a productive member of society.

    My heart cries for you and your husband.  I pray everyday for an Obama presidency because I know how much he believes in restoring those services and providing our children with the services and education they need to succeed in whatever it is their life path takes them.

    God bless.

  •  Please accept my offer of a virtual casserole, (4+ / 0-)

    sympathies, and dedication of my work these next few weeks on behalf of special needs babies and children and adults.

    When my brother was diagnosed with a severe mental illness as a child, I was stunned by the silence of my community. In a catastrophic way, we lost him then. In my small Midwestern hometown, when someone got sick, broke their leg, had the flu, had a relative die, the neighborhood just found out about it and started spontaneously bringing over food for the family. They understand that we, the caretakers, needed some help. That a meal for a few nights would mean all the difference. When my brother was diagnosed, the small town withdrew from us and we got no casseroles.

    Thank you for writing and expressing the reality of your loss. I'd love to give you a real casserole or hotdish today, but hopefully a virtual one will do. To get you through the next day or so and to give you the energy to work for Obama so that other mothers and sisters don't face the same insults to the dignity of our family members.

  •  Please don't lose heart. (3+ / 0-)

    Take a nice hot bath and get a good night's sleep. Tomorrow will be a better day. And, no matter what, you must not give up Hope. I'll light a candle for you and Audrey. :-)

    "It does not require many words to speak the truth." -- Chief Joseph, native American leader (1840-1904)

    by highfive on Thu Oct 16, 2008 at 08:03:00 PM PDT

  •  We've been where you are (9+ / 0-)

    My eldest daughter was born with a profound developmental disability.  We've had to fight every step of the way to get her appropriate healthcare and education services.  We've had the mind-numbing IEP's fighting tooth and nail for the supervision she needs, only to finally see someone hired who we overhear saying to our daughter, "don't do that or I'll have to hit you again".  Just yesterday the assistant principal informed me that other parents had complained that they didn't like seeing me tube feed my daughter in our car in the parking lot (I can't feed her at home or she'll pull out the tube).

    People simply do not know what folks like you and I live with.  Somehow we're supposed to think Sarah Palin is our champion?  How insulting.

    I wish you and your family every blessing.  Spend as little time possible being hurt and frustrated and  enjoy those beautiful children as much as you can.  And when you do feel hurt and frustrated, know that you may feel alone, but you are not.  There are many of us out here and we understand.    

    The campaign needs parts & labor, not new engineers. - stunzeed's first diary

    by snout on Thu Oct 16, 2008 at 08:03:24 PM PDT

  •  all of our hearts are with you and your husband (2+ / 0-)
    Recommended by:
    4Freedom, Words In Action

    and your beautiful children.... even if they are unaware - the love is there.  it binds.

    blessings to you.

  •  I'm an SLP and have a decent understanding (8+ / 0-)

    of IDEA laws.  Could your daughter go ahead and enroll in your son's school WHILE you pursue the legal avenue?  The school system may well relent and give you the hours you need after they see how far you want to take this.  Believe me, they don't want to fight this legally unless they absolutely have to.

    It sounds like your son's school is part of the public school system..?  If so, I would be pretty sure that the SPED department would be falling all over themselves to accommodate your daughter in your son's school rather than finding a private placement (which would really cost them big bucks).  That would even include hiring more staff to work with your daughter "1 on 1."  Many of our MR students where I work (definitely NOT a wealthy district) have "1 on 1s" so at the very least, perhaps that person could be trained in ABA to work with the staff person they have.

    I truly feel for you and have a pretty good idea what you are dealing with, though I have never had to LIVE with my own autistic children.  Not to diminish your pain, but I will say that most school districts are doing the best they can with the meager resources they have.

    I'm going to use this opportunity to rant- whomever had the idea to fund public schools with local property taxes is a full-blown IDIOT!!!!!!!!!  Or maybe just some rich a-holes who saw that as a way to get better services for children living in more affluent areas.  Since the schools are dependent on local property taxes, this wave of foreclosures has hit our school district very, very badly.

    Hugs and deepest regards.  Good luck.

  •  Thank you for sharing at this time (0+ / 0-)

    you have explained the kind of change we need, while dealing with too much, with grace and love.  Deep condolences and thanks.

    If you want to truly understand something, try to change it. - Kurt Lewin

    by anim8sit on Thu Oct 16, 2008 at 08:06:26 PM PDT

  •  tears (1+ / 0-)
    Recommended by:
    Words In Action

    There is nothing to say except my heart goes out to you.  Hug.

  •  So sorry for your loss of Pop-Pop (0+ / 0-)

    and for the hell the system is putting you through.  You will be in my prayers that something breaks loose for your family soon.  And I agree with other posters that you need to take this to the media NOW!  Don't let the slot go to someone else.  Your daughter needs you.  Someone else will step up for Obama.  Ask for help with the Obama stuff -- I'm sure it will materialize.  Take your energy right now for fighting who you need to fight for your daughter's future.

    Obama's the last best chance this country is gonna get. Get off your ass and phone bank, people!

    by Former Chicagoan Now Angeleno on Thu Oct 16, 2008 at 08:08:28 PM PDT

  •  Hugs from all the bright lights.... (1+ / 0-)
    Recommended by:
    Words In Action

    Nov 4 can't come soon enough.

    All blessings to you...

  •  I want to say in advance, I am so sorry about (2+ / 0-)
    Recommended by:
    revelwoodie, second alto

    your grandfather passing, which I know is not the point of the dairy, but still an important point anyway. Please accept my deepest sympathies and good wishes coming your way.

    My 2nd cousin was born with Down Syndrome as well as being mentally retarded and even though she was 30 years older than I was, her and I were almost as close as sisters. Please know that all of us here are praying and sending our best wishes and vibes in your direction. I am so sorry that the school district is not helping you out like it should. Know that we always will care about you and your daughter and if there is anything else that we can do, please let us know. This community really does care.

    Economic: -6.88 Social: -3.74
    "Do or do not, there is no try." - Yoda, The Empire Strikes Back

    by triciawyse on Thu Oct 16, 2008 at 08:10:42 PM PDT

  •  My thoughts are with you (1+ / 0-)
    Recommended by:
    Words In Action

    Thank you for sharing your story.

    I can't believe that you have the strength to go on with the campaign at a time like this.  You are an inspiration to us all.

    Let's hope that under President Obama, your daughter and all special needs children get the help they need to live active, healthy lives.

    January 20 will be here before you know it.

    Take care of yourself and your family.

  •  My SO worked at Easter Seals, and at (1+ / 0-)
    Recommended by:
    dogemperor

    the State run rehabilitation center: I've seen for myself some of the children and their daily lives, as well. Unless one is willing immerse yourself into their world, one can simply walk away.

    My SO did not, and was dedicated to the task. All parents are dedicated to the task, and I felt like an outsider, when visiting and observing.

    And I know .. it's so hard to stay on focus, and garner strength with all you have in front of you, but hold on.

    John Kerry said it in 2004, and it's 4 years late in coming, but help is finally on the way.

    Hold on.

    2008, the Year the Republican Party dissolved into a puddle of goo

    by shpilk on Thu Oct 16, 2008 at 08:12:37 PM PDT

  •  I have two autistic children too (10+ / 0-)

    I am there with you.  I have two autistic boys, ages 16 and 14.  We obviously didn't know about our first child when we had our second child.  At this point the expectation is that they will probably end up in a group home setting and will always need our supports.

    No one can ever replace what you lose when you have an autistic child.  Especially when the realization occurs that those "expectations" that you had when the child was born will not occur.

    I know it is no consolation, but you will find your own peace with the children you have.  They are a gift from God.  You are special parents who were selected by God to have them as their children.  

    I have learned so much from my boys--patience, unconditional love, the ability to accept what you have and not what you would want, and the ability to see the humor in life's small things that would otherwise drive you crazy.

    My younger son likes to use the shredder machine in our basement.  On Monday night I completed our taxes (to be filed on Wednesday) and left them on my desk in my office.  The next afternoon I got home from work and saw a stack of shredded paper right next to where my taxes were.  I think the normal response would have been to explode, but I have learned through patience to work through it--I mean I did have backup paperwork.  Now I can laugh at it.

    I love to go to football and baseball games.  My older son could care less about football, but he loves marching bands, popcorn, pizza.  He also thinks its funny when people fall down.  We have a match made in heaven.

    Our older son had back surgery about 1 1/2 years ago.  Because of post operative infections we were basically in the hospital for 3 1/2 weeks.  Five times we were in the operating room.  Any other kid would have been scared to death--I mean we were.  Our son, not so.  He thought it was hilarious.  You could cut the tension in the preop room with a knife and my son is cracking up.  He thought it was cool because there was a Fuddruckers and Burger King near the hospital and we could bring him real food.

    Realizing that our genetics are pretty screwed up, my wife and I adopted a beautiful girl 8 years ago.  She is a typical kid who is a loving joy.  She is also our boy's best therapist, advocate and antagonist.  Everything rolled into one.

    Above all else we are a family.  We may be outwardly disfunctional, but we are probably more functional than most families you will ever meet.  And we enjoy live and everything it offers.

    Keep up the hope and advocate for your kids.  Weep for what you have lost, but accept and enjoy what you have.

    Most importantly enjoy the comfort and support you get from others.  I don't mean the simpletons like Sarah Palin, who thinks that a special needs child is a trophy to throw on the wall to justify her political existance.

    John McCain's wife is a special needs teacher.  I don't doubt for a moment that his neocon heart has a concern for special needs kids.  However, across the board budget cuts are no answer for families that are in need.  

    •  Thank you for writing this. (2+ / 0-)
      Recommended by:
      javelina, 4Freedom

      My boy is an autistic, and the reaction I had and the one his mom had upon his diagnosis were radically different.  Mine was like yours, while hers was more like the diarist's.  She ended up leaving, as her negative attitude did not allow her to remain engaged full-time.  Thankfully, she is still in his life, even if she can't handle it on a full-time basis.  When I read this diary, my immediate reaction, based on my experience, was negative.  But you so elegantly described how I believe, that I was able to disengage from my negative reaction, and to re-engage my empathy.

      Ancora Impara--Michelangelo

      by aravir on Fri Oct 17, 2008 at 05:14:18 AM PDT

      [ Parent ]

    •  similar situation here... (2+ / 0-)
      Recommended by:
      javelina, 4Freedom

      If you haven't found PACER, do.  Do it now.  They're a tremendous asset to those not familiar with the various agencies and interests involved, can advise you of your rights and responsibilities, as well as those of your school system.  And provide legal help if you need it.

      The help available for your children will vary tremendously from state to state.  The federal gov't seems to have relatively little to do with the particulars of the local education system.  They do legislate, though, and FAPE ("Free and Appropriate Public Education") is your friend (and a big stick).  Some states are fairly good, others, not so much.  Rural areas also tend to suffer a great deal compared to cities as you need local help, not help 200 miles away.

      /es

    •  We've considered adopting. (0+ / 0-)

      The only thing that stops us is that it seems we are stretched to the limit now with the demands of caring for our two.  My hope is that in a year or two, when we have everything they need squared away, that might be an option for us.

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Fri Oct 17, 2008 at 11:50:00 AM PDT

      [ Parent ]

  •  Excellent post (1+ / 0-)
    Recommended by:
    Words In Action

    Sigh... I cannot even imagine.

    Be well. You've inspired many.

  •  My thoughts are with you (1+ / 0-)
    Recommended by:
    Words In Action

    and your beautiful children.

  •  I can't even read this (0+ / 0-)

    I stopped after the first couple paragraphs - I'll come back

    but this is perhaps my greatest fear

    I'm sorry

  •  Might I gently suggest ... (6+ / 0-)

    that you find an autism support group?

    And one that is actively seeking ways to bridge the early learning autism gap.  Rather than dispair, I think you should know that early action is critical. Autistic children are reachable. I've worked with very successful clearly autistic (not the softer more malleable Asperger's Syndrome) adults in the realm of Mathematics and the hard sciences.

    Generally someone who is autistic even under the best of circumstances will never be the popular kid. Eh, look at the bright side: they'll never be Sarah Palin.  But they may prove to be deeply gifted if the sensitivities that cause their autism are nurtured into a deep, sensitive intelligence in their range of abilities. Please read more about people like Temple Grandin.

    Autistic kids have a harder time in a suburban, conformist environment than in a quirky eccentric environment.

    I apologize if this is not what you wanted to hear. But eventually it might be something you need to hear.

    McCain / Palin: Not Ready on Day 1461

    by Glinda on Thu Oct 16, 2008 at 08:14:43 PM PDT

  •  Have you read Jenny McCarthy's book? (0+ / 0-)

    Maybe the last thing you need right now is yet another "helpful" suggestion... BUT, Jenny McCarthy has a new book out, she's doing amazing things for autistic kids, fighting the fight and trying to get the doctors to talk to her, trying to get the research done. Her son was diagnosed with autism and she's brought him just about all the way back.

    Her book is called "Mother Warriors: A Nation of Parents Healing Autism Against All Odds."

    There is no one treatment that works for every kid, but maybe in this book you'll find stories you can relate to, and maybe some ideas you haven't heard about yet.

    Good luck, oh god my heart goes out to you... I hope you know it's not your fault and you don't deserve this, and neither do your children. And please forgive me if I've said something you don't need to hear today!

    I can't wait to vote for "that one."

    by christineNYC on Thu Oct 16, 2008 at 08:17:18 PM PDT

    •  Please God, no! (4+ / 0-)

      Stay as far away from Jenny McCarthy and the anti-vaxxers as you possibly can.  They are frauds and charlatans, and the frauds and charlatans behind them are of the worst sort (the chelationists and other frauds).  They're setting real research into the causes of autism back substantially.

      There is a new book out on the forces behind them by an author named Paul Offit, "Autism's False Prophets".  My spouse just finished it, and it's pretty good.

      Parents want, desperately, hope for their children, and these people give it to them.  Often at substantial cost and their children's expense.  Read and do your research and stay skeptical.  There are no magic bullets, although some of the well-known drugs can help a lot.  It is very hard to find a good pediatric neurologist who can help you.

      Even ABA therapy (the most popular) is pretty questionable in terms of outcome; some countries with universal healthcare will not pay for it because outcome-based trials show no (or mildly negative) benefit.  Newer therapies may have benefits, but there are not (AFAIK) definitive studies showing results.

      •  Read and decide for yourselves. (0+ / 0-)

        Paul Offit is a pediatrician. The medical establishment doesn't want to even consider the possibility that vaccines may be contributing to autism. Think of the lawsuits on one hand, and the horror of being a doctor of children who may have been an agent of such harm. The vaccine theory needs to be looked at very closely, and right now it's not - though that may be changing, here and around the world.

        In any case, McCarthy's book has a lot about treatment - again, treatment few pediatricians will seriously consider, because it deviates from their traditional "drug it" model. Many parents (not all!) see improvement in their child's behavior simply by removing gluten and casein from the child's diet. It sounds crazy, but if if works for other kids, wouldn't you at least try it? It's "unproven" because studies aren't being done. Why aren't studies being done?

        I agree that people should do their own research and stay skeptical. I don't agree with folks on either side of this conflict who say "don't read people who disagree with me." Why isn't it okay to consider alternatives? Isn't that what we're about on the left - lots of ideas, lots of approaches, not just marching in lock step with the establishment?

        I can't wait to vote for "that one."

        by christineNYC on Fri Oct 17, 2008 at 10:54:07 AM PDT

        [ Parent ]

        •  &!@^$!@!!! (0+ / 0-)

          Nonsense.  Lots of nonsense.  The medical establishment has seriously considered the possibility that vaccines cause autism, and has rejected it based on the evidence.

          Far worse, the anti-vaccination hysteria is doing positive harm.  Measles, pertussis (whooping cough), and other childhood diseases have been making comebacks.  These are not harmless diseases.

          "Many parents (not all!) see improvement in their child's behavior simply by removing gluten and casein from the child's diet."  In my particular case, the latter is true; both my wife and my (pdd) son are sensitive to milk.  He has been off milk since infancy.  Many children are also sensitive to wheat (e.g., a coworker who had an otherwise normal child with celiac disease); in these children the symptoms are obvious and the cure equally so (once the cause is recognized).

          But there's so much noise in the variability of childrens' behavior that thousands of parents have been sold on the benefits of these diets when the vast majority of children see no benefit.  (I did try this for my son; it makes no difference.  As a treatment, it's at least harmless (if a nuisance) and doesn't cost much.)

          But chelation and skipping vaccines are not harmless.  They have no demonstrated benefit and they do do positive harm.

          I can remember talking to my grandparents when I was small, and not understanding just how awful scarlet fever (systemic strep throat) or whooping cough or polio were, or what it was like to lose siblings to these diseases.  How pools were closed every summer (even in my parents' childhoods) as soon as polio broke out.  Or to have a child born defective due to rubella (german measles) contracted during pregnancy.

          We are now destroying our "herd immunity" because so many parents are afraid that vaccines are causing autism, a hypothesis for which there is not only no evidence, there is strong evidence against.

          This is what I'm appalled and angry at know-nothings like Jenny McCarthy for promulgating, and even angrier at the frauds behind her who are doing this for money.

          •  We can vaccinate more thoughtfully. (0+ / 0-)

            There is some hysteria out there around vaccinations, and I believe it's as much because of the medical establishment's refusal to admit any possible link between vaccinations and autism, as it is from the people who are convinced they're 100% to blame.

            I looked at Offit's book yesterday, and while of course I haven't read the whole thing, it seemed to me that he concentrates on disproving the idea of mercury and thimerisol being the culprits. What if it's the effect of the vaccinations themselves on a genetically compromised immune system, or some other marker that kids could be tested for? McCarthy herself doesn't call for any ban on vaccinations, just that we not treat kids like they're all the same.

            You say: "in these children the symptoms are obvious and the cure equally so (once the cause is recognized)." McCarthy documents how ignorant most pediatricians are about the frequent correlation between autism and problems in the gut. The state of medicine in this country right now is such that most doctors will prescribe drug after drug before s/he would ever tell a patient, "just stay away from dairy/gluten/casein."

            Offit had nothing to say about the fact that McCarthy brought her son back from autism. If Offit weren't so eager to prove that vaccinations - one of which he created, btw - are harmless, maybe he could be putting that impressive brain to work on presenting parents with more possibilities, rather than just maintaining the status quo - which is, an epidemic that's getting worse.

            That's all I'm saying. Good luck with your son. I know I have no idea what you're going through, and I thank you for being civil with me.

            I can't wait to vote for "that one."

            by christineNYC on Sat Oct 18, 2008 at 11:35:23 AM PDT

            [ Parent ]

            •  What's "thoughtful" mean in this context? (0+ / 0-)

              There is some hysteria out there around vaccinations, and I believe it's as much because of the medical establishment's refusal to admit any possible link between vaccinations and autism, as it is from the people who are convinced they're 100% to blame.

              It's not that the refuse to admit the possibility, it's that they've looked, and shown that there is no possibility.  In order:

              (1) All the "studies" that show a correlation have been shown to be systematically flawed.  The original PCR studies were shown to be seriously flawed due to lab contamination with measles virus, as well as not having negative PCR controls.

               Soon after these results were shown to be systematically and irretrievably flawed, the same community decided that thimerosal (ethyl mercury) must be the cause, rather than measles vaccines.

              (2) Subsequent studies have systematically shown no correlation between thimerosal and autism.  There has been no mercury in children's vaccines for more than five years now, yet there's been no decline in autism rates.

               As a secondary feature, many of those children whose parents claim that vaccinations caused their children's autism have videotapes of their children at "pre-autism" dates (e.g., first birthdays, &c).  These videotapes consistently show autistic behaviors.

              (3) Now the same community is claiming that it's the vaccines themselves.  Yet vaccination rates have fallen substantially, and there's no observed difference in autism rates between those children who've been vaccinated and those that haven't.  Nor is there any observed difference in autism rates between parents of children who immunize and those who don't (e.g., strict Christian Scientists and Amish communities).  (I've seen claims that the latter "don't get autism"; this is yet another claim that has seen wide press and has also been debunked.)

              You say: "in these children the symptoms are obvious and the cure equally so (once the cause is recognized)." McCarthy documents how ignorant most pediatricians are about the frequent correlation between autism and problems in the gut. The state of medicine in this country right now is such that most doctors will prescribe drug after drug before s/he would ever tell a patient, "just stay away from dairy/gluten/casein."

              There certainly is a correlation, but there's no evidence that it's causal, nor is there any evidence that changing the diet to avoid the gut problems helps the underlying autism.  Speaking as a parent who has changed more than his share of grisly diapers, I certainly appreciate improvements that help my son's gut behave more normally.  But that hasn't changed any of the underlying behavioral/developmental issues.

              There are drugs to deal with the behavioral issues, for which I'm very grateful.  As little as I like the idea of pumping powerful psychoactive drugs into my son, they work.  He now sleeps through most nights (I love getting full nights' sleeps), doesn't melt down into multi-hour rages, learns (albeit slowly) at school, &c, &c.

              Offit had nothing to say about the fact that McCarthy brought her son back from autism. If Offit weren't so eager to prove that vaccinations - one of which he created, btw - are harmless, maybe he could be putting that impressive brain to work on presenting parents with more possibilities, rather than just maintaining the status quo - which is, an epidemic that's getting worse.

              I don't know that there's anything to say.  I too am highly -- very highly -- skeptical of McCarthy's -- AFAIK unsupported -- claim.  Even if true, is that any indication that any particular therapy has "cured" him?

              As for Offit's development of a vaccine, yes he did, and it is a substantial improvement on its predecessor, which had much higher rates of side effects.  That's what he is and should be doing -- putting that impressive brain of his to work providing parents with improved vaccines.

              Ultimately, the point here is that without evidence, science is blind.  It takes time to develop evidence, but once it does, science works very well.  Given evidence that any particular vaccine causes autism, it could fairly rapidly (a few years) nail down a cause (the vaccine itself, contamination of the vaccine, additives, &c), and develop fixes or palliatives to diminish the measured risk.

              We have no evidence.  Again, without evidence, science is blind.  It's not that science isn't looking -- it is, constantly.  But if autism was a side-effect of vaccination, it would turn up evidence in all sorts of directions, e.g., correlations between particular vaccines and autism, or particular brands of vaccines and autism rates, or, or, or.  None of these expected correlations have turned up.  And it's not because researchers aren't looking.

              And it's not because they don't want to find a cause for autism.  It would be instant fame and recognition, whether the "drug companies" liked it or not.  Many of these same researchers have autistic children.  The problem is that there's no evidence.  That lack of evidence, in spite of all the compiled and assembled data, speaks loudly:  it says there's no "there" there.

              Conversely, however, there is evidence in other directions.  That evidence says there's a strong genetic component.  There's also at least speculative evidence that children of parents who matured late are more likely to have autistic children.  And that children of intellectually gifted persons are more likely to have autistic children.

              This isn't to say that there might not be additional environmental factors.  We do know something about autism, it's just that those things won't (yet) help us control or eliminate it.

              /es

      •  Agreed. (1+ / 0-)
        Recommended by:
        eyesoars

        Just wanted to chime in and agree with you here. (As I've posted before, I'm an Aspie myself.) The mere thought that cutting gluten out of my diet is magically going to make me "normal"...it sounds like magical thinking to me.

        I decided to use "the Google" and found this, which you might find interesting: McCarthyism, a blog post by Dr. Rahul Parikh, who writes for Salon.com.

        McCarthy, a board member of the anti-vaccine group Generation Rescue, has done this (make lots of TV appearances to talk about how evil vaccines are) on several occasions in the past, most notably last Spring when she appeared on Larry King Live, where the spent the hour cutting off any sensible discusion (sic) with flashes of anger and inflammatory talking points, at one point shouting expletives at the physicians sitting next to her.

  •  That is just horrific (2+ / 0-)
    Recommended by:
    karmsy, revelwoodie

    that your child and you and your family is being put through a hell such as that. All I can give you is my prayers that your daughter gets the 1:1 placement she needs.

    my problem is nothing.

    "My case is alter'd, I must work for my living." Moll Cut-Purse, The Roaring Girl - 1612, England's First Actress

    by theRoaringGirl on Thu Oct 16, 2008 at 08:18:38 PM PDT

  •  One heart. n/t (2+ / 0-)
    Recommended by:
    CanyonWren, Words In Action

    It's been the "Dawning of the Age of Aquarius" for 40 years. "Harmony and understanding," my ass.

    by Cassandra77 on Thu Oct 16, 2008 at 08:21:46 PM PDT

  •  I voluntarily took on a special needs child (4+ / 0-)
    Recommended by:
    dogemperor, 4Freedom, karmsy, CanyonWren

    just commented about it last night in a similar diary. I mean, through the foster care system. Because if I don't, who will? Was my reasoning. Frankly, I thought it would be easier. Than it is. Grueling, day after day. I could go on. But you know the drill.

    Now, you can shoot me for going to this next part, or not. You may know about both these. There are 2 modalities that have success with these children that aren't federally funded. One is:
    http://www.autismtreatmentcenter.org/

    They advocate a home-based wrap-around treatment program for the children. It requires soliciting a team of people to help... in your home. I believe in their program 100%. I saw the son of the founders give a speech in a 3-piece suit... the original child the founders invented the program for. Raun Kaufman. I do NOT mean to imply it would be easy to form a team -- but these are Kossacks. I'd literally be surprised if you couldn't find at least one person who lived close enough to you to help via dailyKos. More if you're in a larger area.

    If you haven't, please read the original SonRise story in book form.

    Second.
    www.Handle.org The HANDLE Institute. Read some of their testimonials. I live in the original city they started working in, where their founder set up shop. I've heard miracle stories for years about kids helped by HANDLE. Here are testimonials:
    http://www.handle.org/...

    There are practitioners for HANDLE around the country now. They're cutting edge but not wackos, and have helped many people. The founder is autistic. Her book The Fabric of Autism is incredible.

    The 19 minutes of head-banging going on? Horrible. Best of success to you with your children.

    Be good to each other. It matters.

    by AllisonInSeattle on Thu Oct 16, 2008 at 08:23:12 PM PDT

    •  The HANDLE founder is claiming to be autistic? (4+ / 0-)
      Recommended by:
      cvannatta, 4Freedom, codeman38, gramofsam1

      Well, that is interesting--because she wasn't 16 years ago, when I interviewed her at some length for a book.
      The lengths people will go to, to sell their products, grrrr...
      What particularly ticks me off is that there are elements of the HANDLE approach that are really solid--as with Son Rise (which is another kettle of fish, don't get me started). It's hard to sell something that's completely valueless, but I hate it that people feel compelled to lie to make a buck. And boy, some of these people have gotten filthy rich.

      Folks, for those of you who are not part of the "autism community"--this is one of the things we have to deal with every day that makes it harder. Because the medical establishment accepted for 40 years, with no evidence whatsoever, that autism was a psychological adjustment problem caused by bad mothers, an entire industry has grown up to fill the gap where proper research should have been done. It bankrupts families, sells them false hope, and hurts children.
      Oh yeah, and it pisses me off!!!

      Political Compass says: -8.88, -8.67
      "We never sold out cos no one would buy."--J Neo Marvin

      by expatyank on Fri Oct 17, 2008 at 03:31:25 AM PDT

      [ Parent ]

      •  Do you claim Raun Kaufman wasn't autistic also? (0+ / 0-)

        What end is there to your disputing claims that some people have in fact recovered enough to be on target during much of their day? Even if they are a mess after they go home at the end of the day.

        What criteria did you use to establish that she "wasn't autistic"?

        I think I will re-sign up with your world-view: Parents, give up hope. All of the organizations that report success are lying. Forget it.

        BTW, the child that I got HANDLE exercises for, could not recognize one letter from another, or put the 4 letters of his name in order. This at an age when many children would have been reading for a year.

        3 weeks after starting the exercises, he wrote his own name, all 4 letters in order.

        But just a coincidence according to you, I suppose.

        Be good to each other. It matters.

        by AllisonInSeattle on Sat Oct 18, 2008 at 10:50:42 AM PDT

        [ Parent ]

        •  I actually think the HANDLE approach (0+ / 0-)

          is a good one, and I knew some families in the Seattle area who had many good things to say about it at the time I interviewed the founder. I just find it curious that she is now saying something about herself that she wasn't then.
          As for Raun Kaufman, it is true that he was never diagnosed as having autism as a child, but it seems evident that he had a developmental and communication problem of some kind. I have some problems with Son Rise as a business enterprise (it does have some problematic aspects, which have been documented on cult-watch sites so no need to go into it here), not so much with the approach they take--following the child and intensive interactive work are the core of all the methods that appear to have some documented effectivness.
          It's the sales pitches, not the methods. I just don't think it's necessary to lie to sell your approach if it has merit--and these are both approaches with merit. Then again, if you want to SELL your approach, I guess you may feel that you need to pull out all the stops to convince people to buy it. If I had a miracle in my pocket I would give it away for free, but that's just me.
          I've seen "successes" with a wide variety of approaches, and with no specific approach at all. This does tend to make me cynical about claims made by would-be gurus and snake-oil salesmen. When even those who have legitimate techniques to discuss feel compelled to use false advertising, it saddens me.

          Political Compass says: -8.88, -8.67
          "We never sold out cos no one would buy."--J Neo Marvin

          by expatyank on Sun Oct 19, 2008 at 02:54:38 PM PDT

          [ Parent ]

          •  OK, back to Ruan (0+ / 0-)

            You say he was never diagnosed with autism? Why did the experts tell his parents to give up on him? And why did his parents get the impression he was diagnosed with autism?

            And what on earth is sitting and spinning plates all day usually diagnosed as? (That's what he was doing.)

            Be good to each other. It matters.

            by AllisonInSeattle on Mon Oct 20, 2008 at 12:15:45 AM PDT

            [ Parent ]

            •  Since the original book came out (1+ / 0-)
              Recommended by:
              AllisonInSeattle

              his folks have had to answer a lot of questions about that, and have tended to evade them. It's never been clear which experts saw him (if any), or who said what exactly. I agree with you, the symptoms sound right, but there have been reports from people who knew the family at the time that the parents' account changed over time.
              Seriously, I actually do hate to be so cynical, but the blinders dropped around the time that the first of several families I know lost their homes due to re-mortgaging (again) for the latest fad treatment. I have seen interventions come and go, and come back again with new names and new rationales. I've seen them be scientifically disproved in the most absolute way possible, and still survive the hit. Facilitated Communication comes to mind as a great example--the basic technique can and does work for some, but the rationale pushed by its American backers was nuts (ESP/magic, basically), and they had an underlying parent-blaming rationale that resulted in false FC'd claims of abuse that resulted in families losing their children. Despite trials that showed the "support" people were doing the actual typing, it continues to be sold to families desperate to communicate with their children.
              By continuing to paint autism as the worst possible thing that could happen to a child, continuing to subtly play on parental guilt (when parents have no reason whatsoever to feel guilty), and in no small measure due to the poor choices made by researchers more interested in patents and profits than techniques that can help families and people with autism now, outright con artists get away with stuff that they can't do in ANY other field of disability, with the possible exception of cancer. And at least with cancer, if you choose to go with coffee enemas and such, you do know that there is an orthodox medical treatment that you could choose instead. And since the con artists are making outrageous claims, even honest practitioners with something worthwhile to offer can feel compelled to tell some porkies just to get a little attention.

              Political Compass says: -8.88, -8.67
              "We never sold out cos no one would buy."--J Neo Marvin

              by expatyank on Mon Oct 20, 2008 at 06:39:04 AM PDT

              [ Parent ]

              •  Snake oil has always been with us. My aunt and (0+ / 0-)

                uncle adopted 2 children, same time, same top-rated spot to adopt children from in the USA, at that time (KC). One child was gifted. One was mentally slow.

                When, as tiny baby, it became apparent she was slow, their doctor told them, "Give her back". "Never" they replied.

                They worked their tails off to find experts (and succeeded), and to work with their daughter themselves. As she fell behind grades in school, they allowed her to invent a different age, more in tune with her classmates. The mother worked with her on one set of skills, the father on another. They moved to a different city so she could take speech therapy at a special school. And that's the tip of the iceberg, of course.

                Snake oil has always been with us, but so have people who made extraordinary efforts to help their "differently abled" children grow into the most functional adults possible. Some of those efforts will result in modalities that can be duplicated, some won't, such is life. Always has been, always will be.

                Be good to each other. It matters.

                by AllisonInSeattle on Mon Oct 20, 2008 at 09:17:49 AM PDT

                [ Parent ]

  •  This diary stopped me dead in my tracks. (6+ / 0-)

    I am so very sorry the times are so hard and you are suffering so much. How I wish there was something I could say or do to make it better.

    Bless your political resolve; may Obama win, for all our sakes.

    •  Me too...I feel so helpless (5+ / 0-)

      My heart truly goes out to any parent with a special child with special needs.  I think diaries such as these MUST serve to remind us that the fight does not end on November 4th.  

      The fight has just begun, and hopefully we will have a true inspirational leader at the helm.

      To all of you who are struggling to find the best care for these children with exceptional needs, PLEASE help to educate us on what the rest of us can do to assist in your fight.  Not just calling congresspeople and writing letters to the editor to support legislation....give us concrete suggestions on what we can do to contribute, in any way, to creating an environment in this country where parents and families can focus on their children instead of spending night & day fighting thru red tape to give these special children the services they deserve!

      "Reality proper has a way of insisting itself upon you." ~Al Gore

      by Troubled on Thu Oct 16, 2008 at 08:36:34 PM PDT

      [ Parent ]

  •  Hugs to you and your family (1+ / 0-)
    Recommended by:
    Words In Action

    First off...I'm so sorry to hear about your grandfather. I lost my own father over 20 years ago and I know how much you must miss your Pop Pop on top of everything you and your family are facing right now.

    I do not have children myself but I have a niece and three nephews. One of those nephews has Aspergers. Although high functioning, I am familiar with the hurdles that my brother and sister-in-law face every day to make sure their son receives a fair chance in education and so on. And that's for a high-functioning child. I cannot fathom what you and your family face with two children with autism.

    Please know that we care. I hope you find good legal representation and fight for the best outcome possible for your daughter. Like someone else said further up, keep fighting and don't give up. The human mind is a wonderful thing. We don't know what advances are just around the corner. And, with Barack Obama in the White House, hopefully there will be more opportunities for both of your children to advance to the best of their abilities.

    Blessings to you and your family.

  •  You're wrong on Palin funding cuts (0+ / 1-)
    Recommended by:
    Hidden by:
    freakofsociety

    But she's consistently slashed funding in Alaska for the services these kids need (see expatyank's excellent diary on what our kids need from government and what McCain/Palin aren't going to give them).  I see no reason to believe that will change.

    That has been totally debunked here at FactCheck.org.

    Palin did not cut funding for special needs education in Alaska by 62 percent. She didn’t cut it at all. In fact, she increased funding and signed a bill that will triple per-pupil funding over three years for special needs students with high-cost requirements.

    "Those are my principles, and if you don't like them... well, I have others." - G. Marx

    by Skeptical Bastard on Thu Oct 16, 2008 at 08:30:13 PM PDT

  •  it's hard to keep your spirits up, I know (3+ / 0-)

    but you have to keep on fighting!

    We've had to fight the system when my daughter was having seizures. they were only related to sleep and when she was hospitalized they didn't want to let us out without agreeing to medicate her. We saw the other children on medication. They were developmentally regressed to infancy. And they had no explanation for why she was having seizures. We figured out how to get out of there, but it wasn't easy and we didn't get help.

    Now, I'm living with a bad case of neuro-psychiatric Lyme. I went to the doc in 2005 and asked to be tested for Lyme. He said it came back negative. After two years of scary tests and diagnosis possibilities, I finally paid for a doctor who would re-administer the test, along with a companion test that is often required to make a diagnosis. By that time, I had such an advanced case I may never recover. But if I didn't force the testing, I would be significantly more debilitated.

    YOU HAVE TO FIGHT! Find whatever emotional support you  need to keep on keeping on. Follow every lead, make every phone call, hire whomever you can. Raise money if you need to. Just don't give up.

    You can do it. People are behind you.

  •  I'm so sorry you feel so terrible. (2+ / 0-)

    And I sure hope things look brighter eventually.

    And thanks for not blaming it on vaccines.

    "Yes we can!" Barack Obama "Hey you kids, get off my LAWNS!" John McCain

    by UndercoverRxer on Thu Oct 16, 2008 at 08:33:55 PM PDT

  •  Thanks for your post. Thanks for your help. (0+ / 0-)

    Thanks for your heart. It will get you through.

    How do you eat an elephant? One bite at a time.

    by Words In Action on Thu Oct 16, 2008 at 08:34:42 PM PDT

  •  bless your daughter's heart n/t (0+ / 0-)

    Cowards die many times before their deaths... Shakespeare, Julius Ceasar, II, 2

    by on the cusp on Thu Oct 16, 2008 at 08:35:59 PM PDT

  •  Your diary catches at my heart. (0+ / 0-)

    I agree that our government priorities are so unfair to deny you the right to appropriate education for your children.  I am a teacher, and have an autistic girl across the way from me.  I can hear her frustration, and yours.  

    I pray that an Obama administration will address this urgent need.  We all need to advocate for our special needs children.

  •  Some things never change (6+ / 0-)

    My sister contracted measles 6 months before the vaccine came out, which eventually led to a 2-month coma, her heart stopping for a short time, and emergence from the hospital without the ability to walk, talk or feed herself.  This all happened before her fifth birthday, in 1959.

    This was in an age when Special Education was just being implemented in schools in California.  We were making progress--then Reagan was elected governor.  He slashed all budgets for ALL mentally challenged people, from education to daily care and hospitalization.  We were left with the only thing to do.  Families banded together and did what they could, from supporting each other to fighting for legislation and change.  And the fight never stops, because Republicans have no heart to help those less fortunate than themselves.

    My sister is now 52 years old, living with my youngest sister.  She never married, never went to a prom, never did many things that we think are important.  But you see, they weren't important to her.  She gets up every day, is fed and clothed, could care less about politics, gets to work on her arts and crafts projects and watch The Wizard of Oz, which delights her on a daily basis. I sometimes envy her life.

    Please don't write off your daughter or son.  I understand your anger.  Keep fighting for their education and health care and enjoy every day you get to spend with them.  Good luck.

  •  Autism (8+ / 0-)

    My two boys were diagnosed with non-verbal autism some years ago.  I also have two typically developing girls.

    I can feel that you are in a lot of pain right now.  You're right that intervention with special services will help your children and your family to be in a better place, and it is a great shame on the wealthiest country in the world that these facilities are not more accessible and affordable.

    Without meaning to go 'off-topic' I would like to share a moment.  When you said that you will never hear the words 'I love you mom,' I remembered having very similar thoughts myself.  I had to wait 8 years to hear it, but I did.  Others are not so fortunate to hear those words but all autistic children love, just like all other children, they just have different ways of expressing themselves.

    Best wishes

  •  Far braver (0+ / 0-)

    than I could ever be. I have lost friends and family; I have yet to process such grief in so positive and constructive a way. Thank you for this. It may perhaps be cold comfort, but these words give hope - something of which our country is in short supply. I am sorry for your loss.

    The fundamental delusion of humanity is to suppose that I am here and you are out there. - Yasutani Roshi

    by lotusmaglite on Thu Oct 16, 2008 at 08:40:59 PM PDT

  •  Hang on... (2+ / 0-)
    Recommended by:
    Cassandra Waites, SteelMaggie13

    Don't give up, just because the window is 2-5 years for help may pass doesn't mean that you're stuck to that, hope and work hard and maybe your child will beat the odds... You sound like good people and I hope that you are rewarded for it...

  •  my words will fail, hopefully my heart does not (1+ / 0-)
    Recommended by:
    SteelMaggie13

    I have been acquainted with parents who have autistic children.  One woman had autistic twins . . .

    My heart, even in the worst of times, always went out to them, to her. . . it's a life I cannot imagine.

    Is there a university close by that has graduate students in special ed, or speech and language. . .if so it may be possible to engage them for a few days a week ... it is not ideal and your daughter probably will not progress but regression may be avoided.

    I am so very sorry
    I am racking my brains to think outside the box for anything that may help.

    You are in my thoughts and prayers.

    This is one reason, among many, that we cannot let McCain/Palin win.

    PROTECT YOUR VOTE - learn how and tell friends & family http://www.stealbackyourvote.com and http://wakeupandsaveyourcountry.com/

    by Clytemnestra on Thu Oct 16, 2008 at 08:43:33 PM PDT

  •  empathy for you. Been through some related . . . (3+ / 0-)
    Recommended by:
    begone, 4Freedom, SteelMaggie13

    Son diagnosed with Asperger's - not really soon enough, but by age 5 we were aware that there was "something" not quite right.

    Fortunately we just happened to "do many things right" - not by design, but because my wife has 360 degree horizons and just happens to be super-aware of so many things.

    After ECDEC ended when he reached about 5 years old (see later in this post) We did have a huge uphill battle at first with cookie-cutter teachers, but somewhere around then (1996/7) an Illinois case regarding need for IEP etc. was settled or judged (fuzzy on the details, sorry) and the meetings with the school staff went from suspicious flinty-eyed affairs, through a sea-change, to something that actually bowled us over. AS specialists and psychologists (not fulltime, but enough to drive things the right way) got him more of what he needed. We did notice the program slowly degrade over the years, but by age 12 he was out of it, and is now home-schooled (no, not so that we can immerse him in Conservapedia and intelligent creation)

    The AS peaked at about 10yrs old to about 13, and then his hormones kicked in "like Chuck Norris"; (occasionally puberty decreases AS symptoms to varying degrees. In our case it substantially reduced the ill effects)

    We've been comparatively lucky; nowhere near out of the woods, and his future is uncertain (he sees the world through "AS polaroid" lenses : things need to be his way, and anything else is just not worth even contemplating.)

    There will always be a hole - in all of us, 16 year old son, and 11 year old daughter showing some AS-like signs - milder fortunately. It's water under the bridge, and we've adjusted to what is - fortunately for us - relatively milder autism-spectrum challenges.

    So, not a fairy-story, but for what it's worth I have some idea of what you've been through. Not sure where you're located now, but this place (link below) made a huge difference to our son:

    http://www.ccsd15.net/...
    Look for the description titled
    Early Childhood Developmental Enrichment Center (E.C.D.E.C.)

    I have no axe to grind or kickbacks by sharing this link. The women who built and grew the ECDEC program from **nothing** are the most dedicated and capable teachers I have ever come across. Hope this helps you in some way.

  •  I am so sorry my condolences to you and your (5+ / 0-)

    family at this very painful time. I am the mother of a 21 year old autistic child diagnosed at 5 who self pain inflicted herself. I understand that pain you speak of. Over the years God has blessed me and my family with a "miracle" when my daughter  was 4 we had a "breakthrough" and she began to speak somewhat but with little comprehension; through the years she progressed to Asperger's Syndrome and I had another child directly behind her with developmental delays that were "autistic like" and she didn't speak as well until 3 ;those years when they were little were dark and lonely, no support and no help from community and sometimes not even family only the sheer will to just keep praying and keep going but the struggle continues with this next chapter. I am crying reading your story and wish I could hug you. I encourage you to know it's never too late and try as hard as it may seem to keep fighting, and continue to be an advocate for your children.

    Accept support but know that No one knows your child as you never doubt that. It's so insulting that autism is the new popular culture "disability" when ignorant people speak off the hip and families are suffering and need support .  My heart skipped a beat when I heard Barack mention autism at the debate only to have it cheapened moments later but regardless..I started crying to know HE cares.

    This may or may not be of help but when my child was little and we didn't have supportive services I "discovered" Hooked on Phonics, funny I know but it helped I had to learn how to be her teacher practicing cognitive "lessons" for what the education system and doctors failed us. My life was pretty miserable, but the audacity of us mothers wanting the best for our kids. It's just mad the greatest, richest, country, and families go through this kind of crap just heart breaking.

    I totally agree with you this election is for all our children. Thank you for sharing your story, cry if you have too but try to stay encouraged and don't give up with everything your going through right now there are no words just a simple thank you for all your faith,hard work and may God bless you and your sweet angels.

  •  I know this doesn't help, at least not much: (1+ / 0-)
    Recommended by:
    SteelMaggie13

    but may you somehow find the strength and courage to continue the fight.  

  •  My heart goes out to you and your family. (1+ / 0-)
    Recommended by:
    SteelMaggie13

    I wish there was something I could do to alleviate your pain and heartache. :-(  This I promise that you will be in my prayers.  

    Hugs and much love to you,

    Lily

  •  i don't know what to say (5+ / 0-)

    other than peace be with you

    Politics is like driving. To go backward, put it in R. To go forward, put it in D.
    19 days until the '08 elections. Let's paint the country BLUE!

    by TrueBlueMajority on Thu Oct 16, 2008 at 08:54:17 PM PDT

  •  thoughts and prayers are with you and your family (6+ / 0-)

    My brother-in-law and his wife have 2 autistic boys - we have watched with awe and sorrow as every day they get up and do what they have to do.   Just as you describe - they don't get all the interactions that make parenting joyful - and just like you, they love and appreciate their children and can see the wonderful individuals they are.

    Wishing there was a magic wand to wave for all in your shoes.  Please - if you haven't already - find some college student who can babysit so you can get a regular night out.  It's worth it.  And hire that consultant to sit in on the IEP....

    I can only hope that expressing your frustration has in some small way helped you.  I can only pray and vote and support candidates that realize that human potential comes in all forms - and that we are all diminished when we do not value and educate our young to their fullest potential.

    I hope the outpouring of support from those here is a comfort to you today and that tomorrow you wake up with renewed energy.

  •  Thinking good thoughts for your family. (1+ / 0-)
    Recommended by:
    Front Toward Enemy

    Lots of mojo coming your way...

    Yes we can! Yes we did! Yes we will!

    by Sister Havana on Thu Oct 16, 2008 at 09:00:41 PM PDT

  •  Oh, my goodness (4+ / 0-)

    First of all, my heart goes out to you - both for what your family is being subjected to, and for the death of your grandfather.

    I am so, SO sorry for your pain and your struggles. Sometimes, there just are no words.

    Secondly, as soon as I started reading what you wrote, I gradually became more and more enraged, and now I'm nothing short of livid. Last night, I put on a movie for my 8-year-old daughter while I watched the debate on another TV, but the movie got done about 10 minutes before the debate ended. Obama and McIdiot were talking about education when she came downstairs.

    My daughter, wiser than her years, asked me, "Mom, why do they talk about kids so much? I thought this election was about politics." I replied, "Because politics IS life, honey. The reason why I'm voting for Barack is because I love and care about you, and I want your future to be OK."

    Much love and many warm thoughts to you. Can I hug you through the computer?

  •  My 18 yr. old nephew is autistic. (4+ / 0-)
    Recommended by:
    dogemperor, begone, 4Freedom, second alto

    When he was young, there was no "spectrum".  His condition is severe.  He will never have speech.  He communicates in the most basic physical way.  A pull to the fridge to get him something to drink.  Handing you his sneakers when he wants to go outside.  He will never live alone, never care for even his most simple of needs.  To put it bluntly, my 18 year old nephew is at the functional level of a 3 year old and will always be so.

    My brother and his wife are heroes to me.  Simply because as a parent of two "normal" children, I fully understand the commitment they've made to him and the enormous effort it takes just to get through a day.  

    My nephew may have been helped by these programs, but they couldn't even diagnose his condition correctly until he was seven.  It was way too late by then.  People need to know that this is what will happen to children if we don't do what we can when we have the opportunity to make thing better.  They need to understand that just because they do not have kids with a "problem" does not mean that they will not be affected.  It affects us all.

    There are no programs to help my nephew.  There is only my family.  Fortunately for my nephew and our community, my family can afford to take care of him for the rest of his life. Well, as least if the investment fund set aside for him recovers in time for when we will need it.

    Revelwoodie, you are amazing.  Don't give up hope.  Keep fighting for every possible thing you can get.  It's parents like you that actually have moved us as far along as we have come.  You children may never be "normal".  But they will always be wonderful, beautiful human beings and will teach us much that we need to know.

  •  Good luck in court! (1+ / 0-)
    Recommended by:
    SteelMaggie13

    Thank you so much for sharing and your family will be in my prayers.

    All the war-propaganda, all the screaming and lies and hatred, comes invariably from people who are not fighting. - George Orwell

    by Five of Diamonds on Thu Oct 16, 2008 at 09:02:03 PM PDT

  •  revelwoodie, (1+ / 0-)
    Recommended by:
    SteelMaggie13

    I am sending you my best hopes, and working hard to get Obama elected.

    Thank you so much for sharing this with us. I am sending this to everyone I can think of.

    I wish I could do more.

    If it doesn't lead to your happiness, don't do it.

    by magicsister on Thu Oct 16, 2008 at 09:02:24 PM PDT

  •  I feel so sad and angry for you! (1+ / 0-)
    Recommended by:
    SteelMaggie13

    tragically un-hip
    ..- .... --..-- / --- -.- .-.-.-

    -5.88, -6.82

    by Debby on Thu Oct 16, 2008 at 09:04:29 PM PDT

    •  Take two-- (1+ / 0-)
      Recommended by:
      SteelMaggie13

      I am so sorry for the loss of your pop-pop. My grandmother and I were very close and her loss still hurts more than ten years later.

      Keep advocating for your precious daughter. I know you will! There is a special place in hell for these people who put the value of cash over the worth of a child. I'm keeping my fingers crossed that you will get her into that school.

      tragically un-hip
      ..- .... --..-- / --- -.- .-.-.-

      -5.88, -6.82

      by Debby on Thu Oct 16, 2008 at 09:12:05 PM PDT

      [ Parent ]

  •  I wish there was something I can do. (1+ / 0-)
    Recommended by:
    SteelMaggie13

    Just know that you're not alone.  We pray, hope and work for a better world that nurtures children like yours and makes the burden lighter for wonderful, caring parents like you.  

    God be with you.  

  •  Whew. I thought she had died. (4+ / 0-)
    Recommended by:
    4Freedom, CanyonWren, Pebbles, steve234

    I worked 4 years in Developmental delay services and 20 yrs in Child/family mental health.

    I know the HUGE frustration from the absolutely NEEDLESS shit CAUSED by that friggin bean counter.

    This situation is played out every day in many diffrernt ways and every one of them is as unnecessary as what this mom is experiencing.

    The Repubs have cut and cut and cut Medicare and other serives over and over.

    No money to help Americans, only money to give to the Rich and to kill people we don't know in other countries.

    It's the Most Fucked-Up Thing In the World.

    Sue them.

  •  Bless you. (1+ / 0-)
    Recommended by:
    SteelMaggie13

    Bless you and your family.  I wish I could say more--as a new father your story is extra heart wrenching.

    Fox News--As fair as a Florida Election, as balanced as Ann Coulter when she forgets to take her medicine.

    by Dizzy on Thu Oct 16, 2008 at 09:08:23 PM PDT

  •  As a mother with two daughters and 4 grandkids (3+ / 0-)
    Recommended by:
    forrest, begone, SteelMaggie13

    my heart is open for you. I can't do anything to ease your pain but to say I hear you. I am listening.

    I can't even begin to imagine what you go through daily all we can do is fight to get people elected like Obama that hopefully will put more money into the programs you need.

    I am a big Michael Moore fan and universal health care. If we had that they would take care of all of our sick children.

    I know the election must seem like a extra burden to you now, all I can think of is maybe it will take your mind off of your problems for part of your day. I am sure if you can't do it though others would be glad to help.

    Take a hot bath, put on your pj's with fuzzy slippers, have a cup of hot chocolate, and watch a chick flick. You need a mind break from reality.

  •  my advice on how to reach your child (1+ / 0-)
    Recommended by:
    SteelMaggie13

    Amidst all the "treatments" going around for autism, not many emphasize that parents, not professionals know their children best.  You are your children's best teacher.  Not "teacher" in the sense that they can learn all fifty state capitals or calculus from you, but rather you are their best "communicating partner".  I belong to a yahoo group moderated by Dr James D. MacDonald called "communicating".  He has taught thousands of families over a 30 plus year career on how to connect with their autistic children and help them develop their communication skills.  He has worked tirelessly on behalf of families who have been told "you child will never...".  Please visit his website www.jamesdmacdonald.org  He also consults with parents over the telephone and most of the time for no charge.  He saved our family and our son. The list on yahoo has been quiet lately, but if you have time, call him.  He will be an excellent support for you.

    James D. MacDonald, Ph.D./CCC
    Communicating Partners
    website: www.jamesdmacdonald.org
    (614) 447-0768

  •  You are not the only ones on her side... (3+ / 0-)
    Recommended by:
    begone, SteelMaggie13, Taya Lawrence

    hang in there. I'm so sorry your sweet little girl has to go through this.

    Baldrick, you wouldn't recognize a subtle plan if it painted itself purple and danced naked on a harpsicord singing 'subtle plans are here again.' - Blackadder

    by AuroraDawn on Thu Oct 16, 2008 at 09:13:26 PM PDT

  •  I will keep you in my prayers (3+ / 0-)

    know that you are not alone.  Please hang in there.  I know how incredibly frustrating it can be.  I have three sons with learning disabilities, but none as serious as autism.  I remember how hard I had to fight the county to get services for them.  I never got everything they needed, but I did get some help.  It's true that having an educational consultant helps.  

    I also learned that the county next to ours was much better - they did not fight the parents like my county did.  I have friends from that county who were able to get the county to pay for the private school they needed.  My county explained, like you mentioned, that they are not required to provide the best education, but rather an adequate or comparable one.  I wish I had fought harder to get services.

    I pray you will find the strength to continue fighting for what your children need.  

  •  Vitamin D3 heals autism (0+ / 0-)

    Go to www.vitaminDcouncil.com...link autism. Optimal levels of D3 turn on genes that autism turns off. It also prevents and heals all diseases known to man. People who live at or near the equator do not get our diseases as they have access to D3 from sunshine year 'round. The further away from the equator they live the less D3 is available. Kindly pass this information to friends and family. The council created the site to educate us to eradicate the wide spread deficiency. Blessings.

  •  I have no eloquent words, revelwoodie (1+ / 0-)
    Recommended by:
    SteelMaggie13

    Just my heart going out to yours.

  •  My daughter teaches special ed. kindergarten (5+ / 0-)

    for children with severe and profound needs, including autism. She shares your frustration at the school districts that have insufficient funding to properly staff these classes. She has 10 children in her class, some who are medically fragile and several with severe autism. As you said above, these children often need 1:1 instruction in order to benefit. My daughter's class has only herself as the teacher, 1 general paraeducator, and 1 other paraeducator who is assigned to work with one specific child only.  My daughter has fought hard for more paraeducators but was told the district just doesn't have the funds. I hope her students' parents go to court like you are, and I pray you all prevail.

    Thanks for your diary. Please try to stay strong, and love to you and your family.

  •  All the words I have aren't sufficient now (1+ / 0-)
    Recommended by:
    SteelMaggie13

    In my small way I can offer virtual hugs and wish you quiet strength during this time. And yesterday I voted where my heart is, and I know better things are coming our way.

    ((((((((revelwoodie))))))))

    The only thing that helps me maintain my slender grip on reality is the friendship I share with my collection of singing potatoes. -- Holly, -5.75, -7.18

    by Rogneid on Thu Oct 16, 2008 at 09:25:52 PM PDT

  •  My son has aspergers (1+ / 0-)
    Recommended by:
    SteelMaggie13

    I would  recomend looking into RDI ( Relationship Development Intervention) therapy at Kids Connect with RDI. Also I strongly recomend you check out Pace Place in Beaverton, Oregon. They offer a week long family immersion model and we have done it twice and it was LIFE Changing for all of us !  Pace Place has been wonderful for kids with classic autism, my friend took her son there and the improvements were great. RDI is about quality of life and functioning for children and families facing the challenges of Autism. You sound like you are doing what you need to with the hand you were dealt pat yourself on the back for being a great mom.  

  •  Have you tried this source? (1+ / 0-)
    Recommended by:
    SteelMaggie13

    http://www.nationalautismassociation...

    I expect you might have, but it was the only thing I could think of off the top of my head.

    Please don't give up.

    -Graham

  •  I wish nothing but beautiful things for you, your (1+ / 0-)
    Recommended by:
    SteelMaggie13

    daughter, son and husband, and I hope you find the strength to keep fighting, all is never lost.

    Wow! I guess we're all multi-home owners now ;)

    by Dirk Thrust on Thu Oct 16, 2008 at 09:33:52 PM PDT

  •  Mom of 2 special ed kids (3+ / 0-)
    Recommended by:
    begone, 4Freedom, SteelMaggie13

    My heart goes out to you.  I have two learning-disabled kids, and it was such an uphill battle. Endless IEP meetings; fighting for services; keeping teachers from warehousing my kids in the "resource room." But my fight was nothing like yours. You'll cry a lot.  But there's nothing wrong with that.  But then you'll dust yourself off and begin again.  I'll pray for you.

  •  My heartfelt sympathy (1+ / 0-)
    Recommended by:
    SteelMaggie13

    and hope for a better tomorrow.

    Practice compassion with mindless fools only if both hands are broken and you can't kick.

    by SecondComing on Thu Oct 16, 2008 at 09:35:02 PM PDT

  •  And After They Are Five? (3+ / 0-)

    The research is unequivocal -- the 2-5 year range is the window of opportunity to help these kids

    Actually, the research is not unequivocal, at least according to this from About.Com:Autism.

    No Evidence That Earlier = Better

    While there are solid practical reasons for early intervention, there are -- so far -- no research studies that show that earlier intervention offers more hope of improvement than later intervention. In fact, Geraldine Dawson, Ph.D., Professor of Psychology and Director of the University of Washington Autism Center, makes the following point: "For all we know, a child with a developmental delay may have a longer window of opportunity for growth. I think it's not helpful to alarm parents in that way. I've seen kids who start late and quickly catch up -- a lot of kids with intensive early intervention who progressed slowly and then took off in elementary schools."

    Please visit some websites that have forum participation by people on the autism spectrum. Read what they have to say. Find out what sort of things can trigger a meltdown. Whether it's those damnable tubular fluorescent lights ('The lighting they use down in Hell' [TM]) or perhaps it's an overly dramatic environment, or television (the content and the raster scan itself) or certain kinds of fabric, or sounds that you may not readily detect, or...

    What I'm trying to say is that people on the autism spectrum can be a resource that may benefit your children by helping you understand the seriousness of sensory bombardment. Not because they are peddling a cure, but because they are sharing with peers. Perfect? No. But it may be one of the best resources available to you - if you are willing to listen, rather than threatening to 'eviscerate' anybody who disagrees with you.

    And please don't downplay (in your own mind) the seriousness of Aspergers: aspies and verbal high-funtioning autistics may not have all the same issues as your kids. But they (we) may help you get a better understanding of what things look, sound, smell and feel like on the spectrum.

    The idea of front-loading the majority of resources available for helping all autistic folk so that only small children get help may be gratifying right now. But what happens when your kids grow up?

    best,

    john

    I support socialized water

    by jabney on Thu Oct 16, 2008 at 09:42:39 PM PDT

    •  The Thing That Infuriates Me (0+ / 0-)

      ...when people like Palin cut these "non-essential" services, is that such programs actually save tax-payers money in the long run.

      Teach these kids basic living skills and their parents coping skills and these children will need less support as they get older. Fail to do that and how much will it cost taxpayers to care for them as adults?

      It's not only a matter of basic human decency towards our fellow human beings...it's pure pragmatism to provide money for both support and reseach now.

      But I guess generous tax cuts for multi-millionaires is more important....

  •  My only words to you are (0+ / 0-)

    to fight as hard as you can to get your daughter the services she needs.  Clearly you already know how to do that, but it is disheartening when you think it's all settled, then BLAM!  your plans and hopes are knocked for a loop.

    There's lots of good, practical advice here from people who've known this system for longer than you.  In that way, you're lucky.

    And we are all here with you and your family, revelwoodie.  Sending you strength.

    John McCain wants to send women to back alleys. We're not going.

    by edsbrooklyn on Thu Oct 16, 2008 at 09:48:07 PM PDT

  •  Words are so feeble. (0+ / 0-)

    I'm sorry for your loss. I wish I had better words to offer you...I'm sorry for that too.

    McCain mortgage policy shaped by banking lobbyist.

    by xynz on Thu Oct 16, 2008 at 09:51:08 PM PDT

  •  Support and Advice... (0+ / 0-)

    I hope you can get help.

    Be sure to take a little time for yourself every day......and have some refreshment, some fun...even if only 10 minutes.

    I don't know about 'normal' however.... and what might have been.....My late mother said there was a time when the mothers of college aged kids sort of silently agreed not to ask after each other's kids because this one was on drugs, that one was in jail, another had run off with someone totally inappropriate, etc.

    Decade later? The one voted most likely to succeed was an ordinary liquor store owner and the wildest troublemaker was settled down in a productive, gentle life.

    I try not to be mean, but I have a sudden 'vision' of the future when a large contingent of parents with special needs kids show up at the Palin residence, all smiles........A little put up or shut up.

    Media Reform Action Link http://stopbigmedia.com/

    by LNK on Thu Oct 16, 2008 at 09:52:48 PM PDT

  •  I can't even imagine how you do it. (0+ / 0-)

    My heart goes out to you.

    Special prayers (in my agnostic way) to people who do so much for kids.

    "Barack, put Helen back in the front row"

    by egarratt on Thu Oct 16, 2008 at 10:05:33 PM PDT

  •  You still have your daughter. (not a troll!) (10+ / 0-)

    I'm an Aspie. I know that's not the same as your children. But I say it anyway to convey that I can empathize. I wasn't diagnosed until recently (mid-twenties) and, had I been earlier, my life would likely have been very different. Maybe I wouldn't have suffered and struggled so much. Who knows?

    What I want you to understand is this:

    1. You are a champion for your children. They are very, very fortunate for that. Never forget that.
    1. You are upset because your children will never be "normal." That's understandable. That said, and this may sound bad, but I think you need to come to grips with that and move on, for both your sake and the sake of your kids.

    Again, I know that might sound harsh. The trouble is that the expectations game tears people up in circumstances like ours. I'm always beating myself up because I feel like I should be doing better than I am doing. I often feel weighed down by the expectations of my parents, who do not believe that I'm disabled. But I'm pretty sure that my parents are disappointed in me and how I've not lived up to their hopes and dreams.

    1. Don't get sucked into the "cure" mentality. There's a reason why many Aspies and autistics don't like organizations like Autism Speaks. Their hearts may be in the right place, but philosophies can be quite different. Check out the Autistic Self-Advocacy Network (ASAN) instead.
  •  Advice from a 15-year veteran of the autism wars (11+ / 0-)

    What I know for sure:
    (1) As important as early intervention is, children with autism continue learning and developing well beyond their fifth birthday (Study by Seth Eikeseth).
    (2) A mother of two children with autism that I know figured out that if she learned everything she could about applied behavioral analysis and verbal behavior, two leading approaches of effectively teaching children with autism, she could help teach her own children.  She eventually earned her Masters, obtained a board certification in behavior analysis, and now helps support her own kids' program by acting as a paid consultant to other similarly situated families.
    (3) As you already have begun to learn, it is all about effective teaching methods and instructors that properly apply them. The single most important thing is for you to learn them yourself.  First, read everything you can get your hands on to understand what is out there.  Second, go to seminars to learn how it works, and study.  Third, research and hire a consultant to teach you how to apply the methodology to your child.  Make yourself the expert on how to effectively teach your children.  Fourth, systematize your teaching methodology, and train everyone who is willing to help you--siblings of yours, neighbors, etc., etc.
    (4) If you can afford it, hire college or high school students to help you teach your children after school.
    (5) Be the teacher, and let the school be the student.  Now that you have learned how to teach your child, teach the school, and everyone in it, the right way and the wrong way to teach your child.
    (6) Learn effective behavioral techniques, such as putting bad behavior on extinction by ignoring it instead of reinforcing it, and the critical step of letting all who you intend to teach your children pair themselves first with things your child finds reinforcing, so that they are seen as an improving set of conditions, keeping demands and reinforcers in balance, and following through on every demand.
    (7) Do not expect that any program your child ever can apply for between now and high school will be complete or perfect.  Take the best from everything an use it to your advantage.  Shortage of ABA at school?  Use the school to teach other skills, or for other purposes; if you can manage it, send your child for less of a day there, so that they're not wasting time.There is no perfect program; don't eat your heart out pining over it.  Many of the programs publicized as the best and the most famous are actually horrendous.  
    Nothing will ever feel as good as being able to help your child teach him or herself.  Best kept secret of special ed services, learned by painful experience over last decade:  schools are thrilled to find knowledgeable parents that will proactively show them how to help their kids without recrimination.
    (8) Do not believe anybody who tells you that the journey you are embarking on takes less than an endless amount of money and an endless amount of your time and dedication, or that you will ever feel like you are doing enough.  It's a myth.  But also don't lose sight of the fact that as your children pass milestone after milestone with your hard work and perseverance, each victory you notch on your belt will be many times sweeter than anything the parent of a child without a disability will ever experience.
    (9) You're embarking on a marathon.  Don't run it like a 100-yard dash.
    (10) Have a sense of history about autism.  Save a place in your heart, hurting as overtaxed as it may be, for the mothers of children with autism of the past--the horror of being told in the 1950's by the leading theorist of the time, Bruno Bettleheim, that autism was caused by "refrigerator moms", or the many children who were institutionalized in the 1960's by a society that did not understand them, until the pioneering work of BF Skinner, Jack Michael, Sundberg and Partington, Lovaas and others proved that there were effective ways to teach children with autism.  Think about the riches of information and support that the internet--beginning with this list--can bring to your door, and remember that there barely was an internet or email 15 years ago.
    (11) Continue reaching out for help, and be aggressive.

    Part of how I know these things is the 15-year old boy in the next room, searching YouTube for the 3 or 4 Disney clips that he hasn't seen yet.  He is my son Aaron.  We adopted him as a newborn, after seven years of trying to have a child on our own.  We have survived a late diagnosis of autism, crappy district services, litigation, victory, dozens of nightmare IEPs, moving completely across our state and restarting my business in a new community, spending most of our life's savings on therapy at home the past ten years, all while both of my parents passed away, and my wife had to go through a double bypass surgery, a half dozen stent implantations and an aortic heart valve replacement.

    We went through five behavioral consultants before we found the right one.  One of our home therapists was inspired to go into the field, got her Masters and board certification, and she now acts as a consultant to us.

    I will not lie to you and tell you that the pain ever completely goes away.  It doesn't.  It is in the guardianship papers you ultimately may have to fill out before your kids turn 18, the girls your son probably won't get to kiss, the learner's permit stories he won't tell at dinner, and the grandchildren you may not have.  All you will have is the proud accomplishment of having helped your children become the best that they can be, and all that will matter to you is that you know, regardless of who else does.

    Finally, I want to share with you two of the most touching and inspirational stories I have ever had the good fortune to come across involving parents of children with disabilities.  Neither one involves autism, but both could not be more apropos.  

    The first was a WGBH Morning Stories Podcast that aired in March of 2006 called "You Just Don't Know the Whole Story".  The second is a video called Profile of Courage:  Team Hoyt

    If there is anything I can do to help in the way of pointing you to autism resources of any kind, please let me know.

  •  My sympathies (0+ / 0-)

    Not wanting to include a political comment responding to this diary where you relate the tragedy you experienced today, just allow me to tell you how sorry I'm your daughter passed on today.

    It is my hope the rest of your days are comforted in the knowledge your dear one is in a better place.

  •  thank you and blessings for all. (0+ / 0-)
  •  We'll do everything we can, Revelwoodie (0+ / 0-)

    to get Obama elected and get your children and all the others the help that they need.  I pray that it's not too late for Audrey.

    I do so admire you for carrying on and especially for taking the time in what must be an extraordinarily busy and stressful life to work on behalf of the campaign.  America, it seems, is full of everyday heroes.  You surely qualify.

    John McCain: Prisoner Of W

    by pattisigh on Thu Oct 16, 2008 at 10:12:53 PM PDT

  •  A very hard day for you. (0+ / 0-)

    I am so sorry that the school did not support the opportunity you had found for your daughter. I'm sure that you will continue to fight for her, and I hope you prevail.

    "We can't solve problems by using the same kind of thinking we used when we created them." Albert Einstein

    by scifiknitter on Thu Oct 16, 2008 at 10:14:40 PM PDT

  •  You are the reason we fight (0+ / 0-)

    Because good people with love in their hearts should not have to go through what you do. It's not fair and it's not right. You have support here for sure. I am in CA and our special needs services are being decimated by our state deficit, so I have no help in that area. But stay strong!!

  •  Deep Waters (7+ / 0-)

    I am the father of a 10-year-old diagnosed with PDD-NOS. I am therefore a person who is dabbling in the shallows of the deep waters you now are fighting. I will not attempt to equate my experiences with yours, although I have lived through the meltdowns, the tantrums, the frustration at the lack of response to every attempt at contact...
    ...but having read the writings of those who have been considered deeply autistic in an effort to understand my son,  I will say to you: Be of good hope. Be patient. There is intelligence there that may not be apparent until it matures, and maturation takes much longer in the highly intelligent.
    ...My boy engaged in constant rhythmic utterances that were not speech. I despaired. But as I listened to the madness day after day, I began to find coherence. Incredibly complex rhythms were explored, repeated, mutated, and improvised upon. Now my son is taking piano lessons and demonstrating an incredible capability to both sight-read and memorize material - yet getting him to concentrate on practicing is a constant struggle.

    He will perhaps always be unable to function as an independent person in society - I don't know. I do know that, while I waited years to experience the expression of his love, we were able to find a place where we understand each other - and he has proven that, for all of his difficulty with expressing it, his love for me is very real, and very deep. I pray that, given enough patience, you and your children will find that place where you can understand each other - and having done that, all of the other issues will come into perspective.

    Those issues will of course not go away, because my son (and, failing some major therapy breakthrough, your children) will always be "different." I intend no cruelty with such an assessment, merely realism.

    My son's brain is simply not wired the same as mine is and there is no way to change that. But he has talents that I cannot hope to equal and I therefore intend to support him as he is - I no longer desire to "heal" him (if I ever really did). Whether he becomes a musician, a scientist, or decides to join the Forestry Service so that he can spend his days alone on a tower guarding against forest fires, I will be content.

    My only hope is that, sooner or later, you will be able to find hope in what your children can do, rather than mourning what they cannot.

    •  wonderfully written (0+ / 0-)

      I tried to write something similar (posted below about my ADHD/Asperger's son), but you have written it so much more elegantly than I did. I worry myself that I won't be able to accept him for who he will become. My husband is so much more open to him than I am. I will remember your words.

  •  This is awful... (0+ / 0-)

    I'm at a loss for words for you revelwoodie...

    I hope that you do not give up hope for your daughter, and I hope that others here might be able to provide resources that you can take advantage of...

    Alas, all I can say is I'm humbled by your commitment to your children through such adversity and your commitment to give all children a better, healthier, happier life.

    You are an amazing woman.

    -9.13, -7.79 When you pray, move your feet. -African Proverb

    by L0kI on Thu Oct 16, 2008 at 10:39:53 PM PDT

  •  You've probably already tried this, (0+ / 0-)

    but have you contacted the Dan Marino Foundation in South Florida?  The Marino's son Michael was born with autism (I do not know what type) and they established this foundation to help him and kids like him to develop.  As I understand it, Michael is now leading a "normal" life (as if anyone can really call our lives "normal").  There may be help there or they may be able to direct you to some similar organization in your area.

    My heart goes out to you, along with my prayers!

    He who exercises government by means of his virtue may be compared to the north polar star, which keeps its place and all the stars turn towards it. - Confucius

    by TimRivers on Thu Oct 16, 2008 at 10:40:09 PM PDT

  •  I wish you all the perseverance your fight will (0+ / 0-)

    require and I hope you are successful for your family and others who require such assistance. May we all join you in making sure your voice can be heard.

    The Truth is nonpartisan!

    by fedupcitizen on Thu Oct 16, 2008 at 10:40:21 PM PDT

  •  (((revelwoodie))) (1+ / 0-)
    Recommended by:
    2lucky

    I'm sorry about your grandfather. Peace to you, him, and your family.

    My brother is an MD who specializes in autistic spectrum disorders. You're right that this is different from your kids' disorder, but I'm going to send your diary to him anyway. If he knows a resource that might help you, I'll comment again and let you know. You're probably already familiar with what's out there, but it's worth a try in case there is something new.

    Please know that I'm crying with you, and I hope that a solution comes your way. You have my best thoughts and prayers.

    John McCain and George W. Bush: Let them eat cake. August 29, 2005.

    by rb137 on Thu Oct 16, 2008 at 10:40:41 PM PDT

  •  Sorry if I am repeating advice from others here (2+ / 0-)
    Recommended by:
    4Freedom, ozarkspark

    I can't read through all of the responses.  I can't bear to dredge up the angst and frustration over the 14 years I fought for my son in the school district over IDEA and services and complying with the IEP.

    My son is not autistic.  It's a completely different thing.  My son has LD's and CAPD and fine and gross motor deficits.  For a time, he was "at risk" for Asperger's Syndrome.  In time, he caught up (sort of) developmentally.

    Nonetheless, the school district constantly thumbed their noses at his needs.  I spent a great deal of money on evaluations (until I learned I could get the school district to pay for them).  Either way, evaluations truly spelled out my son's needs/issues and provided ways to help him advance in all of his areas.

    Those included:  OT, PT, Speech & Language, and services.  He "got" them -- on paper.  The IEP spelled out well-enough what they had to do.  But they didn't do it to my satisfaction.

    MULTIPLE times I filed complaints against the district for being out of compliance with IDEA.  I got NOTHING.  Not even a response.  I couldn't believe it.  My hands were tied when all I wanted to do was get some help for my son -- to ensure he would be the best he can be.  They didn't care.

    Finally, an advocate strongly urged me to file a complaint with OCR (Office for Civil Rights) in a complaint of violation of his 504 plan.  (At that point, he was in 6th grade.  I had been fighting for him since he was 3 years old).  Well, it worked.  OCR didn't like the DISCRIMINATORY practices of my school district against my son's right to Free Appropriate Education.  It took a year, but my school district paid a heavy price.  And the rotten 6th grade teacher he had, who REAMED him out in front of his classmates -- stating he'd never amount to anything -- well, she is no longer teaching.

    You'd think (at least I did) that would be enough to scare the school district straight into doing what they are supposed to do.  It didn't work out that way.  I continued to fight for my son until the day he graduated from high school.  It was hell -- a LONG, uphill battle.  TOTALLY exhausting.  I get that.  I really do.  Ergo, I think I can understand where you are coming from right now.  I empathize.  Like I said, my son isn't autistic; so I'm assumming it is even a tougher situation that you are in.  I'm sorry for that.

    At a glance, laws like IDEA and 504 LOOK great.  They are supposed to serve a purpose, and you expect that.  No reason to excpect otherwise, IMO.  BUT, they are bureaucracies with a lot of loopholes.  Neither are a safeguard -- by any means.

    As I said to our Special Ed director (in MANY meetings over the years) I had with her, "the laws are one thing.  Doesn't it just make sense for the education professionals to do the right thing by their students?  ALL students?"  She agreed with me -- off the record.  Not reassuring.

    All I can tell you is you have to become a legal professional and a detective.  Gather evidence.  Tape record EVERY meeting (you have to tell them in advance).  Transcribe those recordings and send them to your school (certified, return receipt ALWAYS).  Request they attach it to your daughter's file.  They have to do this - by law.  Demand that the special ed director attend EVERY meeting.  That is the ONLY person versed in the law to recognize the "others" are not in compliance with IDEA.  

    If evaluations don't paint enough of a picture for your daughter's needs, RECORD her.  Now, video is more common/easier.  Back when my son was in 2nd grade, he was denied speech/language services because they said there was no problem.  Well, I tape recorded his giving a book report (happened to be a rare occasion where I couldn't attend this event for parents) on Michael Jordan.  Well, I couldn't understand what the heck he was SAYING!  But they said he didn't need speech/language?  I played that tape for our Special Ed director.  Guess what?  She AGREED with me that he needed those services.

    Think of yourself as a Special Ed CSI (investigator).  Collect FACTS and document them.  Ensure they are all in your daughter's file.  And, yes, get Pete and Pam Wright's book (saw it recommended in another post).  I'm not close with them.  I sort of used to "know" them from another forum.  They came to a gathering here in '94 that I had with folks from that forum (it was ADD).  They're steps in the book are sound.

    My son is 20 years old now.  He's in his 3rd year of community college, and he will graduate in December.  Lots of issues he had have resolved themselves.  Not without a lot of fighting.

    Good Luck to you.  I'm sorry your are going through this.  It is the most awful battle in the world.  I hope things get better, but I'm the last person to assure you that they will on this matter.

  •  So happy to hear that there are more chances (0+ / 0-)

    for your daughter! I hope that under the Obama administration there will be more resources for your daughter. I know there are no easy answers, but I hope there will be more "dollars thrown at" your family's problems.

    When I heard McCain blather about it being inappropriate to "throw more dollars" at the problem of special needs children I wanted to throw something at him. Hard. Does he think that the people who work with special needs children can live off of dew and manna from heaven? Do they not have families and monthly bills? Does he propose out-sourcing the work to unfortunate people outside the U.S. who are desperate for work?

    Wow. Leadership we can't believe in.

    John McCain says women shouldn't have the right to choose.

    by Cowalker on Thu Oct 16, 2008 at 10:48:31 PM PDT

  •   . . . battle on through the hard days . . . (0+ / 0-)

    As the father of a special needs kids . . . I know exactly where you're coming from: the anger, the frustration, the resentment, the despair.

    Maybe this election will change things. But as with my wife and myself, the battle for your kid's future will never end.  

    In the meantime, keep on fighting!  Every little inch you seize is another mile on down the road .  . . and every inch counts.  Some days - - even a positive thought, or a success in denying doubt or resentment, is a real accomplishment.  Reaching down deep for that extra bit of push or ounce of love is a victory.  These are important things to remind yourself . . .as I'm sure you already know.

    In solidarity . . .

  •  My thoughts are with you (4+ / 0-)

    Your diary moved me beyond belief. I am a single mother with an autistic son. Even though I knew something was wrong and saw doctor after doctor, he was not diagnosed until he was four and a half. Everything was a fight. All I can say is persevere. It is still no picnic, but he has made it to college. I'm  not much of a believer, but I will pray for you and your family.

    I also want to say to everyone who has commented, you are amazing. The kindness and compassion evinced made me cry all the more. You all demonstrate what this country is all about.

  •  My heart (1+ / 0-)
    Recommended by:
    4Freedom

    goes out to you. I have worked with adults with developmental disabilities for 20 years.

    I had the experience of working with 2 adult males, both brothers ages 34 and 35 who still lived at home, but were transported to an adult developmental day program during the week days.

    I remember their poor mother, who'd had them at the age of 19 and then 20. She raised them at home because she didn't want to put them in a facility. She now had to begin worrying about their future "What happens to my sons as I begin to age and can no longer take care of them?" She'd seen most of the residential facilities and none of them compared to what she provided at home.

    She also still got up and changed each one's depends twice a night and had done that for all of their 34-35 years. Wow, what faith and courage. I feel for you, as one day your children will be adults and you'll still have to stress about the care they receive.

    I have more experience working with what services available for adults with autism as opposed to children.

    I do know that early intervention is an absolute necessity. Many of the adults I now work with are 55-60 years old. They were put in state mental hospitals as children and thus did not develop any independent living or communication skills, skills they could have learned with proper intervention.

    I think that celebrity Jenny McCarthy has a website or a program where she gives info about how to go about getting the best service, although, she is rich and can pay for services that the state won't pay for.

    We have 19 days until we get to vote and I hope for your children's sake and everyone else's that Obama wins.

  •  My heart goes out to you, revel (1+ / 0-)
    Recommended by:
    Amber6541

    I can't even begin to describe how much respect I have for your courage and persistance.  Your children were born to the right parents, and God bless them.  

  •  My thoughts are with you (0+ / 0-)

    Your diary moved me beyond belief. I am a single mother with an autistic son. I knew something was wrong from an early age, but doctor after doctor misdiagnosed him. By the age of four and half he had no speech and was uncontrollable. I actually figured it out myself and was lucky enough (I had good insurance then, but still a battle)to find an amazing program at UCLA. All I can say is persevere. It's still no picnic, but he has made it to college. No one who knew him fourteen years ago would ever have believed that. I'm not much of a believer, but I will pray for you and your family.

    I also want to mention to all of you who have commented, you are amazing. The kindness and compassion evinced made me sob all the more. You all demonstrate what this country is truly about.

  •  Sorry about that (0+ / 0-)

    It was my first post and I thought I had deleted it so started over.

  •  ((((((((((Revelwoodie and your family)))))))))))) (3+ / 0-)
    Recommended by:
    Sandy on Signal, 4Freedom, Mariken

    I'm so sorry your wonderful daughter has been turned aside by people whose job it is to help make her future brighter. Audrey, you, and the rest of your family deserve better.

    Is there any way to get your state representative involved? or your congressional representative or senator?

    Your whole family will be in my thoughts, and if it's okay my prayers. I will also pray that those officials you have to deal with on Audrey and your son's behalf will see their humanity and their potential, just as it should be.

        Hugs,
        Heather

  •  Overwhelming tragdies. Little miricles. (0+ / 0-)

    May you hve less of the former and some of the latter.

    What registers in Las Vegas votes in Nevada.

    by JeffLieber on Thu Oct 16, 2008 at 11:39:18 PM PDT

  •  my condolences... (0+ / 0-)

    may your little girl get the same treatment as your boy.

  •  keep the faith (0+ / 0-)

    I'm not religous, but very spiritual. I truely believe that your goodness will attract goodness.  But just in case, I send up prayers.

  •  In our thoughts and prayers n/t (0+ / 0-)
  •  ((((((((((((((Revelwoodie)))))))))))))) (1+ / 0-)
    Recommended by:
    Mariken
  •  Hi I share some of your pain (2+ / 0-)
    Recommended by:
    4Freedom, lisastar

    Obviously this doesn't compare to the pain you are in, but I graduated from college and I am a very bright person but I have serious communication barriers. I can communicate well in writing but I am quiet to the point of awkwardness vocally around people I don't know. I am stuck working as a housekeeper and getting treated like crap because I have so much trouble standing up for myself. I am very unhappy nowadays and this system needs to be changed.

    Also my grandmother died at 86 this past September. I know you could say she lived a long life but she died of heart failure and pneumonia. They didn't perform her surgery correctly. If we had better healthcare in this country she would have lived another 3 years. They guarenteed that for her when they gave her the surgery. I would rather she had died before than go through 6 months in pain and confusion and then die. I feel cheated out of everything.

    I hope it helps you to know that a lot of other people are suffering.

    •  I forgot to add... (2+ / 0-)
      Recommended by:
      4Freedom, lisastar

      My brother has asperger's. I have been diagnosed with ADD, but I seriously think I may have asperger's too or high functioning autism. My shrink says I don't, but I honestly feel like I do.

      I truly love autistic people. They are so fascinating to me. I want to become a CNA or a Home health care aide and I would love to look after one. I think there should be a program where higher functioning autistics help lower functioning autistics.

  •  I wish I had something, anything I could say (0+ / 0-)

    that would actually help you in some real way.  All I can say with all of my heart is that, as a mother, my heart broke reading your diary.  Since the day my first adored son was born, I've had a secret dread that something would arise with one of my boys that I could not fix, but that day has yet to come.  I've been able to fix all the scraped knees, the hurt feelings, the bad colds, the chicken pox, all those "regular things".  

    They're both in the twenties now, but still the secret dread lays dormant there.  That's motherhood.  I cannot imagine how desperate and powerless you must feel in your situation.  

    I send you my deepest sympathy about your Pop Pop, and the knowledge that my husband and I voted for hope yesterday here in Georgia.  Hope for a change so deep, and so real that it touches you and your family in the most healing way in the not too distant future.

    "First they ignore you, then they laugh at you, then they fight you, then you win." Mahatma Gandhi

    by Shelley99 on Fri Oct 17, 2008 at 01:21:54 AM PDT

  •  This is an amazingly powerful diary!! <nt> (1+ / 0-)
    Recommended by:
    Dartagnan
  •  Keep going, keep fighting. (0+ / 0-)

    One day it will change.

    Another world is not only possible, she is on her way. On a quiet day, I can hear her breathing. ~Arundhati Roy

    by LaFeminista on Fri Oct 17, 2008 at 02:12:40 AM PDT

  •  Omega-3 fatty acids and autism (1+ / 0-)
    Recommended by:
    4Freedom

    I don't know much about autism but I do know a lot about omega-3 fatty acids.  A diet high in omega-3 fatty acids may help with autism symptoms.  Here's a link:

    http://www.autismcanada.org/...

    It's hard to get kids to take fish oil.  I give my kids a product called Coromega--it's a paste instead of a capsule and it tastes like oranges rather than fish.  They grumble but they take it.  Also Dr. Sears Zone Labs has a fish oil liquid that's not too bad, particularly if you mix it into yogurt or something.  Both are ultra-refined so they aren't "fishy."

    You might want to give it a try.  If you do, let me know how it goes.

  •  The Peacemaker (0+ / 0-)

    The name of the movie.

    I dont know what else to say.

  •  National Health Care - NOW! (2+ / 0-)
    Recommended by:
    freakofsociety, 4Freedom

    What happens to people needing medical care in this country is horrid. When I hear about it happening to CHILDREN? Well, that's just evil. How can we stand by and allow this?

  •  As to your update (2+ / 0-)
    Recommended by:
    4Freedom, jemjo

    the reason it helps is something Spider Robinson said

    Pain shared is lessened, joy shared increased

  •  Wishing for strength for you... (1+ / 0-)
    Recommended by:
    4Freedom

    and my condolences about Pop-pop. That's especially tough...

    My adhd neice is doing better...at least she hasn't gotten thrown out of 2nd grade for ditching school, like in first grade.
     I have at least an inkling of what you're dealing with.

    Obama: One Spouse, One House, One Car

    by KenBee on Fri Oct 17, 2008 at 03:23:23 AM PDT

  •  I just have to comment before I read posts (5+ / 0-)

    And say that I wish I could give you the biggest teariest (((((hug))))) in the world. I know only a fraction of the pain that you're going through and it rips me up inside a little bit every day. And everyday I meet moms like you and my heart aches for you and I wonder how you manage to go on with your life. But of course, I know what it is, it's your kids' lives and their futures and that's why you fight. And what else would you do? You have to.

    Maybe to put it in perspective for those who don't know what it's like, my son was diagnosed this year with ADHD and Aspergers. He is the guy that will hopefully grow up and invent some kind of newfangled software that no one else could do because he just sees he world differently. In that sense I am soo lucky. He's smart and he's funny and he and his brother are my world.

    But there are days when the autism gets the better of him, and those are the days my whole vision for his future goes black. He doesn't respond to me, makes strange faces, plays with odd objects for hours at a time, on and on.  The thought that this might be his baseline state or his best behavior would just devastate me. Every day is a struggle to get him on task, homework is endless, he desperately wants friends but doesn't know how to relate to them. I often feel like I'm playing invisible tug'o'war, because the constant battles to keep him on track feel physically exhausting. Schoolwise, last year was a disaster but after a year (literally) of doctor's visits and wrangling with the school district, he somehow miraculously got into a great public school that merges special ed and gen ed in the best possible way, with a 1:1 aide to assist him. That has been the bright spot after so much frustration. But now his future is dependent on his willingness to be a student and do work that he dislikes, and I'm fearful of his future.

    I got pregnant again, and I was petrified that this one too would be on the spectrum but perhaps even more so. When he smiled at me at 2 weeks (a real smile not some gas bubble) I was relieved but everytime he doesn't look straight at my face I worry about regressive autism and how long I might have to wait to really be at peace with his development. There are no screens for autism at this age, or in utero, so once you've had one kid on the spectrum you are playing with genetic fire when you have another. A 5% chance of having full-blown autism, and I'm sure a greater chance when you factor in milder cases.

    So I'm here to testify that autism just sucks. It steals our kids from us, while physically their bodies are still here. Eyes are the windows to the soul, and when they won't look you in the eye for more that a millisecond that soul seems so far away...

    Having just wrote that, though, there was a woman with autism in the NYT who types at something like 150 words per minute with very fluent beautiful prose but cannot speak. She should give you hope that there is a way to contact your daughter, eventually.

    And let me just add how enraged I feel when I see Trig Palin hauled on stage as Exhibit A of "I know what real moms go through" because if she did she wouldn't be bringing that baby out in the middle of thousands of potential germ reservoirs. How many of you Moms would give your 4 month old to a 4(?) year old to hold? How many would put them in the middle of a convention with people bringing their germs from all over the country? Now add the fact that he is Downs and it just burns me up. He's more fragile than most babies and they put him at risk with this behavior.  Either she has no sense of responsibility for this baby and no sense of the gut wrenching mother-work to come or she just doesn't care. Not qualities I want in anyone responsible for the care of my special needs kid.

  •  i know lots (0+ / 0-)

    of people have written some very good advice here. i don't have any.  just wanted to say that i think you are an amazing person and mother and i'm so sorry all this is happening like this.  i have faith that you will be the best advocate your daughter could ever ask for.  good thoughts flying east for you and yours.  

  •  "Let the children come to me, (1+ / 0-)
    Recommended by:
    4Freedom

    ... and do not hinder them; for to such belongs the kingdom of heaven."  
    Mt 19:14 (RSV)

    Too bad the (pseudo)Christians didn't read their own book.  Only in a highly developed, "Christian" nation like ours could people rationalize neglecting children to go to war for oil/money and ego.

    I hope and pray that your children get the help they need and deserve.  Those who deny them that should only rot in hell forever.

    -7.62, -7.28 "We told the truth. We obeyed the law. We kept the peace." - Walter Mondale

    by luckylizard on Fri Oct 17, 2008 at 03:29:23 AM PDT

  •  Katie Beckett Medicaid (2+ / 0-)
    Recommended by:
    elfling, 4Freedom

    Have you looked into Katie Beckett Medicaid at all?  I believe that it's a national mandate that children with chronic medical illnesses qualify for a state run Medicaid called Katie Beckett, named after the girl who's parents fought for the right.  This type of medicaid is not income based.  Usually the state medicaid will qualify children for more services than private health insurance.  Obtaining services outside of the school through the Occupational Therapy/Medical system and medical insurance is sometimes overlooked.

    Let me know if I can be of any help.  I'm a pediatrician in New Hampshire, so I know some about working the system for my patients on the spectrum, but I still have a lot of trouble getting kids the help the need.  Don't give up the fight.

    •  Beckett waiver is state by state (3+ / 0-)
      Recommended by:
      elfling, cvannatta, 4Freedom

      Some have a waiver programme and others don't. This programme has been a lifesaver for many people with severely disabled children, especially those with major medical needs (i.e., tube feeding, physical therapy etc.).
      Just one more proof that we need a NATIONAL health care system, with real parity of care of conditions that affect the brain and body.

      Political Compass says: -8.88, -8.67
      "We never sold out cos no one would buy."--J Neo Marvin

      by expatyank on Fri Oct 17, 2008 at 04:51:45 AM PDT

      [ Parent ]

  •  My heart goes out to you. (2+ / 0-)
    Recommended by:
    Sandy on Signal, 4Freedom

    I am so, so sorry that you and your sweet children are dealing with this. When I married a man with end-stage renal disease (basically no kidney function and needing a transplant) I started to learn what "depending on the kindness of strangers" really means.

    It's terrifying

    We have great insurance and live in the bluest of blue states, so we are l.u.c.k.y. But we needed so much help and support and you know in the back of your mind how fucked you could be if it all got taken away.

    He had a transplant 4 yrs ago and life has gotten much easier but the experience has make me a flaming liberal - not to mention him!

    I know it's easy to say but try to hold onto some hope. There was a time when autistic kids were considered hopeless cases - now we know better. Who knows what the next decade with bring re: interventions?

    Meanwhile - fight like a tigress for them as you are doing and let friends and family help you and know that you will be in our prayers.

    Lisa

    Avoid the drama, vote Obama.

    by Boston to Salem on Fri Oct 17, 2008 at 03:35:05 AM PDT

  •  I know what you're going through, (0+ / 0-)

    to an extent. Keep their feet to the fire with the court. I hope there are good advocates for the disabled where you live. Use them.

    There are things you can do outside the system, such as alternative therapies (there has been some documented success with dietary changes). Some of this ABA stuff is crap, IMO.

    Surround your kids with beauty and give them a routine each day. All kids need this, but special needs ones need it more.

    Believe it or not, I see many adults who are on the autistic spectrum but were never diagnosed. They're not the most popular folks, but they have friends and good lives.

    A colleague of mine, who is an inspiration to me, has a son with autism. When he was 17, she thought she'd have to care for him the rest of his life at home. Now he's 27, graduated from college and is pretty independent, although he gets some services.

    The squeaky wheel gets the grease. Also, contact your state legislators about this. Most of the nitty gritty policies are maade at the state level.

    God bless your family.

  •  The very best resource your children have (2+ / 0-)
    Recommended by:
    4Freedom, eyesoars

    is a committed mother who serves as their best advocate.  I work in VR and part of my job is to encourage parents to think about implement transition services to adult agencies very early . So many parents are so uninvolved and believe that the school system is taking care of everything, but when their children turn 21 they are left out in a lurch.

    I always tell parents that they will be on a first name basis with a special education lawyer because you are bound to go to court several times over the course of your child's elementary and secondary education.  Then there is the coordination of public benefits that can be an absolute nightmare, especially SSA's age 18 redetermination.  It will be a tough and stressful road ahead, parents face adversity in every corner but your children have a powerful secret weapon; a mother who will stop at nothing to ensure that her children have every opportunity due to them.

    "I'm a pessimist because of intelligence, but an optimist because of will" - Antonio Gramsci

    by HGM MA on Fri Oct 17, 2008 at 03:39:29 AM PDT

  •  Revelwoodie, we are in the same place (4+ / 0-)

    Our son is 11 and severely autistic.  

    You are right on about the offer of services, then nothing.  All talk then you are  left all alone to deal with the situation.  It is hard for me to write about it without feeling angry, sad and sick all at once.  

    I remember when Kyle was only 2 or 3 and the church nursery school kicked him out because they said he needed more help.  He wasn't talking very much and seemed different.  We were devastated.  If a Church can't give you support then who can?  No prayer list for us.  No help at all.  

    The church passed us onto the school system which was a mountain of paperwork and time, and little  action.  My son now attends a rehabilitation center.  He attends year round and this has helped him quite a bit.  They were able to help with potty training, sitting down to eat and nodding yes or no if he wants something.  These are huge milestones that took us 10 years to meet.  I don't know if we would ever be this far along if we were in the school system.

    My heart goes out to you and your family, revelwoodie.  Please feel free to reach out to me and chat, find my email by clicking on my name.  I know it is hard to find time to do anything, but I share your experiences and am there for you.

  •  I lost my grandmother ... (0+ / 0-)

    and then, 3 days later, my uncle. What a miserable week. I hate October. I lost my other grandma in October 5 or 6 years ago (on Halloween).

    I'm sorry to hear about your loss. Your diary was excellent and very emotional. I was going to post what I wrote about my grandma here, but didn't think it was political enough to fit.

    Gun control, separation of church and state, women's reproductive rights and the 4th Amendment do matter.

    by sloopydrew on Fri Oct 17, 2008 at 03:51:14 AM PDT

  •  This am I wrote my Republican Reps. (0+ / 0-)

    I let them know how disgusted I was with their campaign and their party.

    Can you call and write your reps? They might help you.

     I understand the pain of your mother's heart. My last child was a preemie with severe apnea. It was a very hard year because I had no help.  

     My thoughts are with you.

    McCain/Palin: Not Mavericks. Just meanies.

    by redtex on Fri Oct 17, 2008 at 04:19:53 AM PDT

  •  SEND YOUR BLOG TO OBAMA DISABILITY (2+ / 0-)
    Recommended by:
    4Freedom, Leftcandid

    YOUR PERSONAL STORY IF YOU CHOOSE, WHEN YOU FEEL BETTER, CAN SHOW MCCAIN/PALIN UP FOR WHO THEY ARE. THE OBAMA DISABILITY CHIEF & STAFF WILL UNDERSTAND YOUR STORY & OUTRAGE AND THEY  CAN DO SOMETHING ABOUT IT!  

  •  Sending you and your family ... (0+ / 0-)

    ... all the love in my heart for your pain, your sadness and every other thing you must be feeling.  I cannot even wrap my head around what you must be going through but I know you will find the strength to move forward, doing your best for your sweet children.

    Blessings to you always.

    "The force is really rather strong with you, Luke" - Eddie Izzard (I miss you, La 3/5/06)

    by Bexley Lane on Fri Oct 17, 2008 at 04:24:14 AM PDT

  •  God Bless You and Your Family (0+ / 0-)

    I cried reading your diary...  I wish you the best...  NEVER give up the fight for your babies... I have confidence that you never will.  

  •  Hang in there. Wishing you peace & strength. (0+ / 0-)
  •  My sympathy and empathy to you.... (0+ / 0-)

    I cannot lie and say that I understand your pain in dealing with your autistic children. However, I fully and completely understand the pain of losing your Grandfather as I just lost my Dad in February.
    Take care of yourself, and take each day as it comes. I find that thinking too far ahead scares me far too much. Be kind to yourself and your family. Post here often to get the best feedback from the very best people on earth! :D
    My best wishes and thoughts are with you. Take care.

    "Those who would sacrifice liberty for security deserve neither." - Benjamin Franklin

    by WI Dem on Fri Oct 17, 2008 at 04:54:55 AM PDT

  •  Serious question (0+ / 0-)

    First, good luck. In all seriousness, how is it determined a child has autism at such an early age ? Are there signs that are brutally obvious ?
    Please bear with me. There are so many levels of autism it seems overwhelming to understand what a kid could have.
    My example would be colic- NO, I am not comparing the 2-at 4 or 5 weeks the kid starts crying and doesn't stop. You switch formulas, you add anti-gas drops, you consider enlisting to get away , you switch formulas , the doctor says not to switch formulas then you do again anyway- and if the doctor is not sure what the problem is, every one of the 'caring' professionals call it colic.
    Once again, I am not comparing the insanity and heartbreak of colic to the life long struggle to care for your kids, it is the only reasonable example I have .
    How do you 'know' early on ? You said early on your son was a year old, I must ask, WHAT prompted you to get a diagnosis ?
    Was there something you noticed ? Was there a 'pattern' ? Is it in your family ?
    I am just desiring knowledge .
    I understand your dealing with severe autism, and you yourself mention levels to a degree. I work with a guy who has an autistic daughter , it sounds serious but she was 'cured' then 'relapsed' as he explains it. I truly understand nothing of this magnitude, but how does one know if the child has a much more mild form? Or what if it is something else?
    This is far off topic, but I actually know a person who is allergic to artificial sweeteners -they figured it out, and while in the hospital after figuring out the day before he was given Crystal Light. AWESOME.

    I think I am driving at 2 things in question form. 1-how does one know to even ask for a diagnosis so they can start getting treatment ASAP ?
    2-With the far less mild forms, could it be something else doctors are just to lazy to test for or figure out?
    I understand your dealing with unmistakeable forms, I am just interested/concerned  in the pre-diagnosis story.

  •  This may sound drastic (6+ / 0-)

    Have you ever considered moving to a place where services for children with autism are more accessible?  

    I'm currently a grad student/research in the field of autism at Ohio State.  We just held our first annual Walk Now For Autism fundraiser on campus and raised over $500,000 through generous donations of average ordinary citizens and the help of prominent members of the community that have children with autism (Marci Ingram of the Ingram White Castle Foundation and Harry Slatkin, CEO of Limited Brands).  The community support and turnout was beyond any expectations (estimated over 7,000 at the walk).  

    For your daughter, Columbus is home to Oakstone Academy, one of the premiere schools focusing on children with autism (http://www.ccde.org/).  There is also a new facility called LifeTown (http://www.friendshipcircle.org/) just getting on their feet in Columbus.

    OSU along with Nationwide Childrens Hospital is quickly becoming the epicenter of autism research and treatment.  It was announced just last week that the new chair of the Autism Treatment Network is an M.D. at Ohio State (Dan Coury, http://www.autismspeaks.org/...

    I was taken aback at the community support I saw at the walk - it was breathtaking.  Stay strong, you have help on the way.

    There's no point for democracy when ignorance is celebrated -- NOFX

    by Lupeyg2 on Fri Oct 17, 2008 at 05:05:33 AM PDT

  •  Don't worry about the election (0+ / 0-)

    we'll pick up the slack.

    do what you can, and attend to your life.

    be well.

    evaluating people on their color, or the color of their ass, is racism.

    by missreporter on Fri Oct 17, 2008 at 05:09:43 AM PDT

  •  Your story pierced my heart and left me in tears. (0+ / 0-)

    I will say a prayer for you and your family.

  •  Hang in there and keep fighting (0+ / 0-)

    Obama/Biden will not be able to solve all of the problems we face as a country but under Dems in White House and Congress your daughter may have a better chance of getting the help and support she needs.
    You are a wonderful mother!

  •  I have voted;empathize with your pain;I know how (0+ / 0-)

    hard it is when a child is sick, but when you can't make it better, it's painful.  There's another pain:when you are the one who becomes ill and your child can't deal with it and is gone.

  •  in tears (0+ / 0-)

    holding you & your family, and all the other children and families living in this nightmare, in my heart.

    and praying for a saner world for all of us.

    My faith in the Constitution is whole; it is complete; it is total. - Barbara Jordan

    by SingerInTheChoir on Fri Oct 17, 2008 at 05:31:45 AM PDT

  •  The Measure of a Life (0+ / 0-)

    Isn't the bridges someone builds or the mountains he topples.  Once you're gone from this world nobody will marvel at the houses you owned or the people you dominated.

    The measure of a life is the hole that you leave in the lives of others.

    And I think the holes that children leave are the worst of all, because they had not yet begun to fill them... in that chasm we see not only what they were but all that they could have been.

    I'm not a religious person but I think I'm a good person.  My thoughts are for you this morning.

    --- It's SPELLED "TooFolkGR" but it's pronounced "Throat-Warbler Mangrove."

    by TooFolkGR on Fri Oct 17, 2008 at 05:40:26 AM PDT

  •  I am so sorry for the pain (1+ / 0-)
    Recommended by:
    sclminc

    you endure and the hardships you face.  What good does it do to tell you that if I ruled the world children like yours would be at the top of my list of priorities?

    The ugly thing about the so-called "pro-life" movement is that is it only pro-life between conception and birth.  Then to hell with everyone.  And this, apparently includes my church, which has a fully formed pro-life conception-to-death doctrine, yet in election years can only seem to remind us that we must have "grave reasons" to vote for a pro-choice candidate.  

    Yeah, I have grave reasons to vote for Obama, and among those reasons are your children.  And so I told my effing bishop -- while I told him that I was leaving his church.

    We will make it better.  We have to make it better, because children like yours deserve all the help that science can provide, not a dab dictated by budget decisions.

    My heart and my prayers go out to you.

    "It's what you think you know that just ain't so that will get you into trouble." --Will Rogers

    by winterbanyan on Fri Oct 17, 2008 at 05:56:15 AM PDT

  •  So sorry to hear that. (0+ / 0-)

    Hang in. Don't give up.

  •  You didn't "lose" your daughter. (3+ / 0-)
    Recommended by:
    Sparhawk, mbzoltan, codeman38

    There are people whose children have died, and I think they would feel there's a big difference between additional school services and the death of their child.  

    •  I hope you do sue and win (2+ / 0-)
      Recommended by:
      mbzoltan, codeman38

      Just want to add that as the parent of a kid needing some help of her own after 2 bouts of cancer, I understand somewhat your experience.  

      We haven't had to fight our school for services, as they've been pretty good.  

      and I certainly hope your daughter thrives.  

      I've just known kids who have died and it's hard to describe.  

    •  Maybe not... (1+ / 0-)
      Recommended by:
      sockpuppet

      But one's children are, for most of us, a reflection/incarnation of all of our hopes and dreams and aspirations.

      When a second birthday comes, and your child still doesn't speak, something dies.  When you realize that your child will never play normally with other children, something dies.  When you come to grips with realizing that your child will always need a guardian and supervision, something dies.

      She didn't lose her daughter, she discovered that her daughter will never have all those things she hoped for her.

      In many ways, having a PDD child is worse than having a child die.

      As for inadequacies in the school system?  You are right; it's not like her child has died.  Even so, seeing one's children neglected, or mistreated, or denied the opportunity to be everything they can will bring out every parent's strongest reactions.

      Many special-ed teachers have special-needs children.  These teachers need our support, encouragement, and funding.

      •  .... (0+ / 0-)

        "In many ways, having a PDD child is worse than having a child die."

        Are you actually a parent?  Have you known people who have lost a child, or known the child who died?  

        I get that you are on a melodramatic roll, but it's pretty hard for me to accept this comment.  

        But in the end, it's not a competition for who has the saddest story.  

        •  .... (0+ / 0-)

          Yes.  Two children, one autistic/PDD. Yes.

          There isn't anything I can think of worse than losing a child.  As bad as that is, however, it's a one-time event, even if one lives with it for the rest of one's life.

          But as an event, it ends.  My grandmothers lost three children between them (drowning, cancer, murder), two after I was born.

          I and most other parents of PDD/autistic kids will forever be denied our childrens' full potential until we find a preventive or cure for autism.  (FWIW, I don't think we'll find a cure because it's a developmental problem (or class of problems).  We may find a preventive.)

  •  lost my husband to suicide (2+ / 0-)
    Recommended by:
    4Freedom, revelwoodie

    I know loss..He was bi polar..It runs on my side of the family.Also Aspergers runs in my family  and his I always wondered about the connection.

    I wish I could add something that would lighten you heart. I wish for you a strong marriage and lots of love and support between you.

    and of course
    Go Obama

  •  I know what you are going through revelwoodie! (6+ / 0-)

    I have two boys two years apart and they both have autism. Each state, county and school district are completely different when it comes to services. Even within one school, the amount of care can change within one year. I emphasized the word care because that is what most school districts will provide. The IEP was a great idea in concept but it is not being applied because school districts are underfunded. There is now a battle of who should pay for it: Insurance vs. Schools. As a parent, I don't care how it is paid for but if a child psychologist recommends a minimum of 35 hours of ABA per week, the child should receive that treatment. Again, public schools offer care, not treatment. I have had my children in both public schools and a mental health facility that offers 1:1 ABA treatment. The difference is so stark. I have spoken to numerous parents and we have all noticed a pattern of public schools using the excuse that "everything is fine with your children", they only need 40 minutes of speech per week and 45 minutes of OT and PT per week. In Ohio, we have the ASP where we can opt out of the school district and use $20k per year for treatment. The problem, it works great with higher functioning children with autism but it doesn't even come close to pay for children with severe autism. It is a HUGE battle!

  •  Keep fighting and keep hope alive (3+ / 0-)
    Recommended by:
    sockpuppet, dhfsfc, revelwoodie

    You seem like a wonderful mother who loves her children and you are their biggest hope for their future. I'm sorry that you lost the place for her in your son's school.

    I don't think from reading your diary that you're ever going to give up.  It may be more expensive to go to court or to try other options, but I know you will fight for her future.

    I don't know if you feel comfortable writing about this in your local paper, but I would try to get your story out in your community.  Not only to help your daughter but perhaps to make others understand why local schools like your sons are needed so much in our communities.  Our basic needs for our children are going unmet.

    Bless your family and I wish the best for you.

  •  My heart goes out to you....... (3+ / 0-)
    Recommended by:
    sclminc, sockpuppet, revelwoodie

    I cannot imagine the agony this is.  My nephew is at the "mild" end of the spectrum with Asberger's (I hope I spelled that correctly), and I've seen the battles my sister has had to fight for him.  I'm sure you enlightened and educated people with this diary, and I hope someone reading this can put you in contact with someone who can help.  This would not happen in an enlightened, just society.  We as Americans have to take aggressive steps to make this society just that---enlightened and just.  No one deserves this, not the parents of autistic children, and certainly not the children.  What an outrage.

    My thoughts are with you.  I wish you the best of luck.

    "Your silence will not protect you." --Audre Lorde

    by altruista on Fri Oct 17, 2008 at 06:24:06 AM PDT

  •  It's Asperger's. Sorry. (0+ / 0-)

    "Your silence will not protect you." --Audre Lorde

    by altruista on Fri Oct 17, 2008 at 06:25:07 AM PDT

  •  You may already know about this, but... (0+ / 0-)

    There are people who credibly claim that diet can have a very big effect on the symptoms of autism.  Here's an article on same.

    It's not autism, but I first heard about the idea of dietary intervention from a friend who was diagnosed with fibromyalgia.  Her case was close to hopeless until her parents talked to a prominent Minnesota medical research firm, which put them on track with the dietary treatment.  The diet she's on is very difficult - no wheat or dairy products.  But the upshot is, her symptoms are GONE.  ENTIRELY.

    The research firm who helped her out with that diet has also done research on using dietary interventions for autism, and there's plenty of information online about those sorts of treatments now.  If you don't already know about it, I think it's definitely something you might benefit by looking into.  Obviously the condition isn't going to disappear, but if you can even kick it into recession enough to help your kids thrive through the 2-5 window, that's a big deal in the long run.

  •  I'm sorry. Hug and love. n/t (0+ / 0-)

    Life is a journey whether you choose a path, or the path chooses you.

    by Dopusopus on Fri Oct 17, 2008 at 06:27:57 AM PDT

  •  Hang onto hope, no matter what. (0+ / 0-)

    Keep fighting as you have strength, but force a difference between "pragmatism" and despair.

    I understand at least a hint of your pain.  I have a child who, though not autistic, I would guess is a highly functioning Asperger's.  (For that matter, I would guess that I may be, as well...)  When he was born and growing up, there was no real knowledge of this, no testing, no special programs.  There is pain in imagining your child never being what s/he might have been.

    But--who knows what might be discovered this year, or the next, or the next?  Something in gene therapy, a new treatment protocol, or ???  

    So cry, fight, mourn, celebrate.  Know that we are in your corner--now and always.

    "Nothing in the world is more dangerous than sincere ignorance and conscientious stupidity." - Martin Luther King Jr.

    by revsue on Fri Oct 17, 2008 at 06:28:20 AM PDT

  •  can't think of any adequate words... (0+ / 0-)

    ...but I'm very sorry for what you're going through.  And I'm going to help you with that November 4th thing.

    "Does anybody know what the difference between a bulldog and a hockey mom is? The bulldog gets vetted!" - Bob Barr

    by Front Toward Enemy on Fri Oct 17, 2008 at 06:41:02 AM PDT

  •  Good luck (0+ / 0-)

    Fight the good fight.

    And I think your title is completely appropriate.  Parents whose children have a diagnosis like this go through periods of mourning every day.  You love that child you have, with all of your heart.  But you also feel sadness for the child that you expected you'd have.

  •  I am so sorry for your loss (0+ / 0-)

    My God/Creator bless you, your family and your daughter's spirit.

  •  Please consider Acupuncture! (1+ / 0-)
    Recommended by:
    4Freedom

    I hope this comment is not inappropriate at this point.  But, I would like to suggest that you look into acupuncture for your children.

    I am the owner of an acupuncture supply company and so, therefore, am involved in this community.  There is extensive research on acupuncture and autism and the beneficial effects.

    Acupuncture deals with subtle energies of the body and the nervous system.  Acupuncture can assists greatly in repairing and enhancing neural functioning in the body.

    Their are many acupuncturists in the country who specialize in treatment of this sort.  One, Bob Flaws, in Denver, Colorado, is the most famous.  He, himself, and his son, both have Asperger's Syndrome.  Albeit, Asperger's Syndrome is not as serious as what you're talking about; but, he is an expert in all forms.

    He has a website www.bluepoppy.com (which is his company), but you can contact him through it.  I am sure he will be able to help you.  He and his wife, Honora, are the most open and nicests people out there.

    You can also browse his books there.  He has written many and is an expert in pediatric care.

    Hope this helps.  I am sending you heartfelt love to you and your family.

  •  Thank you for writing this (1+ / 0-)
    Recommended by:
    4Freedom

    I have a son with Down syndrome and autism.  My son is 11 years old and he is behind his peers, even his peers with Down syndrome.  The autism is the difference maker.  But we have been fortunate in that our school district has always wanted to do whatever was required for my son.  They take the idea that they are responsible for educating my son very seriously.  The school district pays to send my son to a private school that specializes in teaching children with autism.  We are lucky in that our school district has the money and is willing to spend it but not everyone is lucky like we are.  Full funding of IDEA is critical but will never happen as long as the GOP can control the spending.  Senator McCain has voted against every bill that would increase federal funding for special education.  There is no reason to think that President McCain will be any different than Senator McCain.

    "War is a cowardly escape from the problems of peace." - Thomas Mann

    by Tom Paul on Fri Oct 17, 2008 at 07:00:28 AM PDT

  •  The election of Barack Obama (1+ / 0-)
    Recommended by:
    elfling

    and Joe Biden is just the beginnng-that's when the real work begins.
        For years now, the conservative policies of the Gop have starved our public school systems. We need the best of eveything here; our children are too precious for anything else to suffice. The best, period. These are our children we're talking about-and they deserve the best we have to offer- literally.
        As a former substitute school teacher I have litle patience for excuses when it comes to education. Our schools need to be top drawer. The sky should be the limit, and no excuses for less quality should be tolerated. Our children must be a priority-period.
        You'll be in my prayers. My very best to you.  Do not give up-we're fighting the good fight and no one has any intentions of backing down. We're with you. All my best.

    "Men never do evil so completely and cheerfully as when they do it from a religious conviction." --Blaise Pascal

    by lyvwyr101 on Fri Oct 17, 2008 at 07:06:22 AM PDT

  •  Raw Milk (1+ / 0-)
    Recommended by:
    4Freedom

    I've been reading about how raw milk, especially raw goat's milk can be helpful in some cases of autism. We are planning on opening our farm up as a center for homeschooling and autistic families, as we've seen the power of connection that animals can have with autistic kids. Especially horses, so I hear.
     But we helped a family try some raw goat's milk for just a week, and they saw a significant improvement in some of the physical aspects of autism, ie, gut and skin issues. I know of other families that have seen great improvement in cognitive and social skills as well. Feel free to contact me if you'd like more information.
     I'm sorry you've had the hurdles you've faced, but your experiences and knowledge will help others who unfortunately face the same issues in the future. I am so impressed with the community of autistic families and how they help each other. I hope you can find some sense of advocacy within those groups. God bless you and your family.

  •  Music Therapy (3+ / 0-)
    Recommended by:
    cdreid, sockpuppet, 4Freedom

    Do you have access to music therapy?  It has made a huge difference in my son's life.  Here is an article that was in Newsday a few years ago.  The picture in the middle of the article is of my son:

    http://www.therebeccacenter.org/...

    And here is Mikey's case study.  I think it is very interesting reading:

    http://www.therebeccacenter.org/...

    "War is a cowardly escape from the problems of peace." - Thomas Mann

    by Tom Paul on Fri Oct 17, 2008 at 07:11:37 AM PDT

  •  (((((((revelwoodie and family)))))))))) (1+ / 0-)
    Recommended by:
    Taya Lawrence

    My heart goes out to you and your family as you fight through the mess that is the bureacracy of securing decent care for children with special needs.

    I cannot imagine what an ongoing struggle it is to work with a child with autism, but I hear and feel the pain in my friend's voice as she cares for her daughter with Asberger's (sp?) syndrome. She, like many, was stung by Michael Savage's insensitive, cruel admonishments of children with autism; and I can only hope for our country's sake that cretins like Savage are few and far between.

    However, by their actions, McCain and Palin show their insensitivity towards children with special needs by slashing the needed funds and programs for their care, and IMO they're no better than Savage by their deeds.

    Again, I know it might not matter much in the grander scheme of things, but I am sending you my best thoughts and wishes. My husband and I have already voted for Obama, and we volunteer and donate, so we hope we are helping in that sense.

    Do you want to leave your children a legacy of hope or hopelessness? Vote Obama '08 and save our country!

    by boofdah on Fri Oct 17, 2008 at 07:15:37 AM PDT

  •  Great diary; I'm another autism parent (6+ / 0-)

    We also "lost" our 9 year old son this year as his behaviors -- violent tantrums, compulsive skin picking, noncompliance with daily routines, grossly inappropriate public behavior, the list goes on -- grew so extreme that, in combination with the factors of his growing size and strength, we could no longer care for him at home.  He is in a temporary "respite care" home about 1/2 hour away while the state agency looks for a suitable placement.  We see him regularly, and we know he wants to return home -- but we simply don't have the capability to provide the structured existence he needs.  We miss our little boy and all the moments when he happily enjoyed his favorite activities here with us.  Life is unfair. Best wishes.

    •  Sorry to hear this... (2+ / 0-)
      Recommended by:
      sockpuppet, 4Freedom

      Assume you went the behavioral consultant and investigated the medication stuff and it didn't help...I'm not in your position but know many who are.  The only thing I'd like to suggest is that you have to be an absolute helicopter parent on the issue of safety and security.  I'm a national advocate on autism safety issues and, based on what I see and hear everyday, congregate care facilities and state placements scare me more than just about anything.  If you can get a community based placement it's not a guarantee but it is likely  much safer for your son.

      See my friend Dennis Debbaudt's site for more on safety issues: www.autismriskmanagement.com

      "Those dunes are to the Midwest what the Grand Canyon is to Arizona and the Yosemite is to California." - Carl Sandburg

      by Critical Dune on Fri Oct 17, 2008 at 08:14:30 AM PDT

      [ Parent ]

      •  Yes, we tried many things (2+ / 0-)
        Recommended by:
        sockpuppet, 4Freedom

        including medical management (he's on five meds), an intensive 2 1/2 week ABA outpatient program this summer, a "talker" (I'm sure you know what I mean).  To some extent in our hearts we feel like we just failed to help our son, but in our heads we know that he is who he is and maybe in his case there is no one who knows the answer - it just may be a congenital miswiring of the brain that is beyond current treatment knowledge, at least those available to a middle class family.  Thanks for the reference.

        •  I hear you but do keep in mind (2+ / 0-)
          Recommended by:
          sockpuppet, 4Freedom

          that the approach to puberty can do some really strange things. My guy was agressive (no where near your league) and we had to homeschool age 5-10 for a variety of reasons including aggression) but he calmed down as he approached puberty and really calmed down (not to a typical calm state of course and there are always bumps in the road) as he hit puberty.  

          This book just came out.  I found it helpful and am a fan of the author (though not all in our community are):
          http://www.amazon.com/...

          Good luck with the process. I really hope all goes as smoothly.

          "Those dunes are to the Midwest what the Grand Canyon is to Arizona and the Yosemite is to California." - Carl Sandburg

          by Critical Dune on Fri Oct 17, 2008 at 08:52:34 AM PDT

          [ Parent ]

    •  That's the killer. (2+ / 0-)
      Recommended by:
      sockpuppet, tomhodukavich

      I know that may be our future.  In fact, it's likely.  We don't like to think about it.  Everyone wants to keep their kids at home.  For some families, it's just not possible.  My daughter's tantrums are volcanic.  She's hurt me several times, and she's not yet 3!  If that behavior continues, how will we manage when she's full grown?  I hear so many stories of people ending up in the hospital with injuries received from their own sweet children.  No one should have to bear this.  It's too much.

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Fri Oct 17, 2008 at 10:38:35 AM PDT

      [ Parent ]

      •  You need to learn correct restraint techniques (0+ / 0-)

        which we were taught for the first time this summer, as (we now realize) many of the people who will work with your child are forbidden to use restraint moves even when your child needs to be restrained or coerced.  Unfortunately, at 85 pounds and not hesitant to bite when agitated, our son is now too strong for us to physically control when he is dead set against it (just imagine trying to force a stronger-than-normal 80 pound boy up the stairs when he knows how to use his feet to push against the steps - a dangerous situation).  Unlike some autistic children, our son's condition worsened gradually over time; at first he was "mildly speech delayed," then mentally retarded, then PDD-NOS (combined with ADHD and anxiety disorder) until a child psychiatrist finally called it autism with rule out childhood bipolar disorder.  If appropriate, your daughter's treatment should include "patience" exercises (I suppose there's a specific term for this) in which she is allowed to obtain access to a desired item/activity, but only after waiting a specified, and increasingly longer, period of time without tantruming.

  •  "Lost" is real (3+ / 0-)
    Recommended by:
    sockpuppet, 4Freedom, revelwoodie

    Our 4 1/2 year old daughter is autistic. Thank God in Quebec we've been able to get her services -- a combination of government help and our hiring people, which, thank God, we can afford to do. She is making slow progress, but we cherish every baby step she takes forward.

    If we couldn't get her help, we would truly lose her.

  •  Don't give up. Fight autism like it is your (3+ / 0-)
    Recommended by:
    sockpuppet, 4Freedom, revelwoodie

    worst enemy, because it is.

    Read books on what professionals do to help them, then enlist everyone you can to help you do it.

    Try alternative medicines. Look up herbs and vitamins that can help.

    Give them lots of outside activity and let them run and play and get dirty.

    You are giving the professionals too much credit. They are just humans who do the best they can to help children.

    I don't mean to sound cold about it. I am not cold about it, I feel for you, but since you don't get the help you need, you need to do it, if there is anyway you can.

    "Democrats can't do any worse than them." O

    by relentless on Fri Oct 17, 2008 at 07:39:19 AM PDT

  •  I'm so sorry, and so glad you have (1+ / 0-)
    Recommended by:
    revelwoodie

    kossacks that you know will empathize with you.

  •  Coraggio! You have not lost your daughter. (2+ / 0-)
    Recommended by:
    elfling, revelwoodie

    You do not have a gaping hole where your heart used to be, that is for sure.  The people who voted her down have gaping holes where there should be hearts and minds.

    You are in shock.  You are mourning the loss of that school, that avenue for your daughter's best treatment.

    One of my best friends has a disability, and she lost the first round of a request to make her life easier.

    Well, she persevered.  She wrote letters.  She did everything she could, and she got shot down and discouraged and bullied over and over again.  Secretly, inside myself, I used to think that the battle might be so arduous that perhaps she should move or quit, but I never said this to her.  I listened to her and talked to her and wished her well.

    She won, and I believe she is getting compensated for damages.  

    With all that you face with having two children who require mega parenting, I am deeply sorry that you have to face this court business.  It's all so draining.

    You said that you feel like running into the street and asking for help.  Trust your gut, Mom.  Ask for help.  I think it's amazing that you are doing so much for this campaign on top of it all, and I think it's healthy for you to do it, so delegate the work that is too much for you.  

    Is there anything we can do?  Can we sign a petition or write someone?  Is there a support group for parents of autistic children near you?  Is there a website that can offer you some advocacy?  

    You have been offered a spot that is rare, yet these (heartless)bureaucrats won't let you take advantage of it, which makes no sense whatsover.  I would also argue for that spot on the grounds that your children should not be separated.  

    I tried to get both of my kids into a private school, because my town was going to remodel their elementary school, which had asbestos, while the kids were in the building.  There were no spots for girls.  My son was heart broken not to go to school with his older sister, so I didn't separate them.  By the time they got around to doing the construction, my daughter was in middle school and the superintendent got so sick of me arguing against them working on the building while in session that he called me and offered to send my son to another elementary school in town, which I did, and he got an amazing 4th grade teacher to boot.  

    Trust your instincts to fight for your family.  Try to get as many other people in your town involved.  This is where I failed.  I fought my battle alone, because the other parents were too busy and they didn't believe that anything would go wrong.  Now a lot of the staff & kids who did stay in that school have lung problems & the school is in the front pages of our newspapers years later, because of lingering air quality problems.  I am not gratified about being right, but chagrined that more often than not people don't take the time to get involved and learn about the best course of action.  They told us that doing the construction while school was in session saved money.  I argued that they should only do that work in the summer, with the heating system off, so that the debris would not get into the air ducts & I felt that they could make up the money by not borrowing as much at a time, thus having less debt & interest payments, but they listened to their committees of people they appointed, not me.

    In your case, they, too, are making a short sighted decision that will cost much more in the future not only for both your daughter & your family, but society, by failing to allow your daughter to progress to the point where she will require less care down the road.  

    They need to be educated.  They should not be allowed to make such a poor decision and say later, but we didn't know that her daughter and son would be hurt by the separation.  We didn't understand that she needed this care in order to progress.

    I am not a lawyer, but my friend's hubby is, and he worded a statement for me to make at one of the building committee meetings that would force them to test for asbestos (they were refusing to test the parts that they would be breaking down, because they said they knew none would be there!).  They had their standbys in the room, who they would pick during the Q & A over me when I raised my hand.  These "concerned parents" would say, "Do whatever you feel is necessary.  I have complete confidence in you. Blah, blah, blah."  Finally, after attending umpty ump meetings, where they would not call on me, someone said, why won't you call on her, she's been raising her hand for weeks.  I will never forget the look on the chairman's face.  I stood up and read the prepared statement that would establish "intent" and immediately they said that they would conduct the tests, and yes, they found asbestos, where they swore up and down they wouldn't.  

    My grandparents were also close to me, although they didn't raise me, and losing them was excruciating.  I am so sorry for your loss.

    My Nonno used to say to me, "Coraggio, Cindarella!  A Casella never gives up!"

    So, Coraggio, revelwoodie!  A kossack never gives up!

    Information is the currency of democracy. ~ T.J.

    by CIndyCasella on Fri Oct 17, 2008 at 07:46:48 AM PDT

  •  Resources (3+ / 0-)
    Recommended by:
    sockpuppet, 4Freedom, revelwoodie

    Unfortunately, I just can't take the time to read all the comments, so please forgive if some of this is repetitive.

    Some useful resources in NJ.  Parents of autistic children, at http://www.poac.net.  COSAC also help with support (http://www.njcosac.org/cosac2/Home%20Page). Children's Specialized Hospital has soem excellent services for autistic children - I first became aware of the need to help families with autistic children through a Kiwanis project started by Dr. Yvette Janvier of CSH.  Autism Speaks (www.autismspeak.org or e-mail newjersey@autismspeaks.org) also has resources.  Also, you might want to contact your local Kiwanis Club (Kiwanis in NJ has had some projects related to autism, and the ongoing service thrust of the organization is to serve the needs of young children).  also contact you local Rotary Club, Lions Club, Womans Club, church group, etc., to help pressure your local educational officials into doing the right thing.  Also, as you are apparently involved in Democratic circles, use your contacts!

    My heart goes out to you.  Most folks only have one autistic child, which is more than enough of a challenge - can't imagine how hard it would be to care for two!

     

    •  Dr. Janvier... (1+ / 0-)
      Recommended by:
      sockpuppet

      ...is actually the doctor that diagnosed my son.  And COSAC is a lifesaver.  I try to make their meetings whenever I can.

      As far "using my contacts" is concerned, I do know several of the city council members very well.  I am considering speaking to them.  I also know journalists in both of our city's major papers.  I'm considering that, too.

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Fri Oct 17, 2008 at 10:45:03 AM PDT

      [ Parent ]

  •  thank you so much for writing this here (3+ / 0-)
    Recommended by:
    sockpuppet, 4Freedom, revelwoodie

    i have an autistic nephew and a niece with downs.  i've myself had rampant, debilitating asthma all my adult life.

    what you write is true - there is no help out there.  all of the government agencies are just looking at how to deny you help.  i've been supported by my family alone, nothing ever from the government.

    what's going to happen to katie and robert (my niece and nephew)?  why is the richest country in the world so stingy and hateful?  when people see the crime and awfulness around us, can't they see that so much of it starts in these type of hateful decisions against our fellow citizens?

    the u.s. is a shameful place in many ways.  we need to face up to this and do whatever we can to change it, so we can hold our heads high.  thank you so much for taking the time and emotional energy to post this here so more people can see what we've become and work to change it.

  •  Revelwoodie. You are fairly new at this so... (6+ / 0-)

    I'd like to pass on a few thoughts to you as a parent advocate for over a decade and a half.

    You are correct that you are in a high intensity early intervention zone and will be for several more years.  The stresses are unbelievable.  I know all of them.  Over time, I think you'll find that the things your child may not be able to do will be replaced by other things that will bring joy to them and you. While you are no doubt angry about the funding cuts, and I sincerely empathize, your use of the phrase "death sentence" is a bit too much for me.  

    ABA is indeed critical in early years (yet doesn't always work).  Quality control is a huge issue.  Many parents opt (if they can afford it) to do an at home progam to augment hours and control quality. When my son started there were 2 ABA schools in the U.S. (one on each coast) so most people opted for in home ABA.  If you are careful, lucky, and have a good consultant, excellent graduate students can be found to provide therapy at a fraction of professional rates. (One tip: hold on to the good ones tight...there is poaching galore and cut the cord quickly on underperformers or the unreliable, they never get better).

    Also keep in mind that some "professionals" and  teachers give better parent "meeting" than child "therapy".  I learned that the hard way.  Computer based programs can also be helpful for some managing in home programs.  I suggest alongside your fight for hours (and it will be an ongoing battle with your district forever), you should explore this in-home route. Time is critical as you indicate but that doesn't mean gains stop at age 5.  That's a bit old school and there are many many examples in our community of lifelong improvement.

    Recall too that the school district is not always the demon in this story.  All across the country, advocates like me are fighting to make insurance companies cover ABA, which most believe is medically necessary therapy.  However, insurers use a definitional loophole ("educational" v. "medically necessary" to foist the entire cost of ABA on school districts and taxpayers.  With the growth of ASD, school districts are indeed stressed in their special ed budgets. I think an iron fist in a velvet glove is always the best approach with administrators and professionals in your district.

    I believe if we are successful on 11/04, Preident Obama will help change that but it won't happen overnight.  I know he and his staff.  They are dedicated to helping make the lives of people with disablities rich, rewarding, and fair.  

    I was lucky that, even though I had no reimbursement and had to do everything out of pocket, that I was able to afford to do it.  It worked and my son has languange and can communicate verbally (although academics are a challenge to say the least).  

    My fight for school based services and inclusive opportunities will not cease till he ages out.  Then the lifespan opportunity battles will commence. My son will likely never drive, go to college, get married, or have a typical life trajectory.  He will, however, lead an important and rewarding life in many, many other ways.  

    When things become less intense for you (and they often do for parents when kids are around age 10 or so) consider carving out time to help advocates like me provide largely absent lifespan supports for people with autism.  We can really use the help of a top notch person like you.  Thanks for a terrific diary.

    P.S.
    "Kids and cures" is a lot sexier to policy makers and donors than "adults and supports".  Policy makers are not up to speed on the tsunami of demand on largely absent infrastructure that is about to hit land.  The waiting lists for community based living and work arrangements are already obscene.

    P.P.S.
    Safety is a huge issue you should always keep on the front burner (check out this site www.autismriskmanagement.com).

     

    "Those dunes are to the Midwest what the Grand Canyon is to Arizona and the Yosemite is to California." - Carl Sandburg

    by Critical Dune on Fri Oct 17, 2008 at 08:01:42 AM PDT

    •  So true. (3+ / 0-)
      Recommended by:
      sockpuppet, codeman38, Critical Dune

      My son's school has a program called DOORS which specializes in transitional and lifespan services.  The fight for funds is constant.  People want to help kids with autism.  Adults with autism?  The first response for many is to look away.

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Fri Oct 17, 2008 at 10:49:38 AM PDT

      [ Parent ]

      •  Yup. That's why (1+ / 0-)
        Recommended by:
        revelwoodie

        Autism Speaks, ASA, and other entities are spearheading things like specialized training for law enforcement and first responders (to keep kids and adults safe) and family services grants to incubate transition and adult services. I lobby and testify but it is a huge struggle to get adult funding, especially for community based services, because you have to battle for dollars with an entrenched congregate care complex that has legislators ears.  

        Personally, I'm into the idea of "farmsteads" like this one because they combine employment and group homes in a quiet, natural, rural community setting (which my guy loves)
        http://www.bittersweetfarms.org/

        Thanks again for the nice diary.

        "Those dunes are to the Midwest what the Grand Canyon is to Arizona and the Yosemite is to California." - Carl Sandburg

        by Critical Dune on Fri Oct 17, 2008 at 11:49:31 AM PDT

        [ Parent ]

        •  I just looked at that website... (0+ / 0-)

          ...and it looks fabulous!  Any idea if there are other places like this?  That one is only for Ohio residents.  If there's one near me, I'd love to get on that waiting list!

          edscan -- 1/21/09. The truth will be revealed.

          by revelwoodie on Fri Oct 17, 2008 at 12:09:14 PM PDT

          [ Parent ]

          •  There are several leading organizations (1+ / 0-)
            Recommended by:
            revelwoodie

            and a number of small ones.  The key with these is that autism specific farms are much smaller by design than farms with general DD (mostly DS and MR) populations.
            Here is a general autism/farmstead website:
            http://www.autismnet.net/...

            On the site there's a pretty extensive list of organizations. www.thehomestead.org outside Des Moines, IA and www.farmsteads-ne.org in NH are 2 other leading organizations in the U.S.  

            There are many more general DD farms that will accept people with autism but I think smaller (like Bittersweet) is better. Bittersweet also consults with people trying to set up new farms.

            A lot more parents are looking at this option but there are just not many available slots so parents are organizing together just like in traditional group homes.  I am aware of quite a few farms in various stages of development.  You may want to network with your local advocacy groups or check message boards to see if one is in the works near you.

            Some fear potential isolation and lack of inclusive opportuntities on a farm, but I disagree...if a community is built around it.  Combining work (no shortage of it on farms), group homes, community outreach via greenmarkets, hosting school tours, community outings, the lower cost structure in exurban and rural settings, and a strong spirit of volunteerism especially among faith based groups in these areas with the overall safety and security creates an appealing mix in my mind.  

            "Those dunes are to the Midwest what the Grand Canyon is to Arizona and the Yosemite is to California." - Carl Sandburg

            by Critical Dune on Fri Oct 17, 2008 at 01:51:25 PM PDT

            [ Parent ]

            •  Thank you, Critical Dune (0+ / 0-)

              This is a revelation.  I'm actually considering looking into starting one.  I have so many friends with autistic children the same age as mine.  Maybe we could even start something like this together.

              I can't wait to tell my husband about this.  Thank you so much!

              edscan -- 1/21/09. The truth will be revealed.

              by revelwoodie on Fri Oct 17, 2008 at 03:03:07 PM PDT

              [ Parent ]

  •  I had the slightest glimpse yesterday ... (4+ / 0-)

    of what you go through every day. And it broke my heart.

    I went on my son's preschool field trip to a pumpkin farm. My husband came with me. He just lost his job the day before. We were kind of numb. He had only had the job less than a year ... and after a year of unemployment before that. We were wandering the pumpkin patch wondering how we would make it one month more.

    Then I saw a group of children who were not with my son's school. They were a group of special needs children, mostly Down's.

    The children were very happy, very well cared for. Then, I spotted one child who did not seem so happy. He did not have the Down's characteristics.

    My heart jumped. It was my cousin's oldest child.

    There he was, in his life outside of family get-togethers, weddings and baptisms. The last time I had seen him he was at my daughter's baptism. He wore a little suit. He was interacting, as much as he could, with his brother and sister. There he was yesterday, in his normal, everyday life. His quiet detachment.

    I ran up to him and gave him a hug and introduced myself to his teacher.

    "What's your name?" he asked me.

    I knew this was coming, of course. And I introduced myself for the umpteenth time in my life.

    When I returned to my husband and child, suddenly, our financial situation didn't seem so important. My son was laughing and running and playing with his friends.

    And when he yelled, "Mommy, you're back," I think I finally had a glimpse inside my cousin's world.

    Your diary gave me another.

    I think I will call her today.

    Thank you. And god bless your whole family.

    •  your comment made me cry and thats o.k. (2+ / 0-)
      Recommended by:
      sockpuppet, revelwoodie

      My son has aspergers and he is always asking his aunts and uncles who are you? smile smile. we learned also that our financials aren't as important as our son, too. that the sacrifices we make, not having stuff, to pay for therapy is a much more rewarding for us. Good luck with the job situation that is very stressfull. And maybe if you call your cousin you can ask to speak to her child, that will really knock her socks off. :)

  •  Please Do Not Apologize (3+ / 0-)
    Recommended by:
    sockpuppet, 4Freedom, revelwoodie

    Several commenters have expressed the opinion that the title of my diary is misleading -- that "lost" should only be used regarding physical death.

    We faced both your problem and the death of an infant.  The pain is beyond measure.

    Some of the pain came from well-intentioned friends and family, who just could not know how to proceed in what they could not fully understand.

    God bless you.  Wish we could have expressed ourselves as well as you but the hurt throttled the voice.

    Best,  Terry

  •  My sympathies but keep on fighting (1+ / 0-)
    Recommended by:
    revelwoodie

    Hi,
    I rarely comment, but I wanted to let you know that you and your daughter have all my sympathy and hope. I have a daughter with cerebral palsy and our IEP meeting is coming up in a couple months. I'm thankful that I live in a State and County that funds special education and early intervention well but unfortunately even with Federal mandates the actual services available vary so much among States/Counties. Don't give up hope for a medical solution either. In my daughter's case, there is good reason to think that stem cell treatments may have a permanent effect in improving her condition (another reason to vote for Obama/Biden).

    Others have probably already suggested this (I haven't read all the comments yet) but if the school district isn't able to provide appropriate services they can be made to pay for private services. You might consider engaging a lawyer and take the district to court, although that will not provide immediate results it may help you and others in the long run.

    I also agree 100% that McCain/Palin are not going to help this situation, and that Sarah Palin, whose son with Downs is only 4 months old and who has assets over $1,000,000 doesn't udnerstand the first thing about what most families in this situation are dealing with.

  •  {{{revelwoodie and family}}} (1+ / 0-)
    Recommended by:
    revelwoodie

    you're in my thoughts.


    Those who say it cannot be done
    should not interrupt the person doing it.

    by Lashe on Fri Oct 17, 2008 at 08:23:38 AM PDT

  •  I am having such a hard time... (3+ / 0-)
    Recommended by:
    sockpuppet, 4Freedom, revelwoodie

    ...understanding how our country could treat children in such a manner, and children who are the most vulnerable.

    I can't believe that your only option is to hire a lawyer to fight to save your daughter's future. It is not as if you are asking for much, just treatment for a little girl.

    What has happened to our nation when we can spend $700 billion propping up banks and investment firms, and at the same time leave our must vulnerable kids behind?

    01-20-09: THE END OF AN ERROR

    by kimoconnor on Fri Oct 17, 2008 at 08:23:43 AM PDT

    •  Believe it. (2+ / 0-)
      Recommended by:
      sockpuppet, 4Freedom

      The system continues to fail in adulthood too.
      There are tens if not hundreds of disabled adults stuck in congregate care facilities like inappropriate nursing homes (even though they may be young) because community based resources don't exist. I know President Obama will help change that.

      "Those dunes are to the Midwest what the Grand Canyon is to Arizona and the Yosemite is to California." - Carl Sandburg

      by Critical Dune on Fri Oct 17, 2008 at 09:09:07 AM PDT

      [ Parent ]

      •  Schools are failing everyone! (0+ / 0-)

        At this point the public school system is failing just about everyone.

        The children who need special attention and aren't getting it.

        The children who are in classes of 35-40 kids with one teacher who get basically no personal attention at all.

        The children who are in schools where all classes but the basics are being cut for funding reasons.

        The children in schools who can't even hire real teachers and rotate through a different substitute teacher every thirty days so they don't have to offer to put the kids in a different class.  

        We need to reform our whole school system, not just the special ed services.

  •  Diet? (3+ / 0-)
    Recommended by:
    sockpuppet, kittania, 4Freedom

    I am sure you have probably tried everything, and I don't claim to be an expert, but I have had a couple of friends and heard many stories of autistic children can be helped dramatically by changing their diet. Removing dairy and sugar are the big ones, but there's other dietary changes also.  Please look into this if you haven't already.  I feel for your family and wish you the best!

    •  also preservatives and other additives (2+ / 0-)
      Recommended by:
      sockpuppet, 4Freedom

      my daughter is sensitive to some preservatives and dyes in highly processed foods, they tend to make her hyper like sugar then she crashes

      I've also read recently that diets high in carbs vs. proteins can make a difference.  That some "brain issues" do better w/ more concentrations of one than the other but it depends on what the specific issues are.  You might want to consult a nutritionist because of how young she is

  •  I am sorry for your struggles. (1+ / 0-)
    Recommended by:
    4Freedom

    I have a mild form of Asperger Syndrome.  Of course back in the early 60s when I was your children's age, they knew (or accepted) very little about autism, let alone Asperger.  They consequently didn't know what to do with me.  So they stuck a label on me:  Retarded.  Which was the term they used back then.

    A chance visit by Mother Superior at the convent school that accepted me, set my life on a different track.  An accident?  A coincidence?  Some say there are no such things.

    Now my nephew has full blown autism.  I know it has been a terrible struggle for my brother and sister in law, and my sister in law is in poor health.  

    Federal aid to education is a very small piece of total government education expenditure.  While I know that many people here think the heavens will open and all the Cherubim and Seraphim of heaven will come down singing Hosanna when Obama is elected, fact is that it's the local school board, and your state government, that will be your avenues of aid.

    You will be in my thoughts.

    Enterpriser; Hard core Libertarian: +6.63 / -4.41

    by jimsaco on Fri Oct 17, 2008 at 08:34:27 AM PDT

  •  thank you so much for sharing this story. (1+ / 0-)
    Recommended by:
    4Freedom

    I knew that these kinds of challenges exist, but I had no idea of the extent of their ramifications.  

    I knew, however, that the McCain/Palin ticket could not care less about your struggles, no matter what they profess right now.  

    We do.  And our time has come to change this.  
    Much love and strength to you and your family.  

  •  Warning to diarist (1+ / 3-)
    Recommended by:
    parakinesis
    Hidden by:
    sagesource, BoxerDave, 4Freedom

    Warning to trolls:  I am a mother with a gaping hole in my chest where my heart used to be.  Stay out of this thread or prepare to be eviscerated.

    Sorry for your situation, but you don't get to choose who comments in your threads. Please do not post messages such as this in your future diaries.

    •  Please remove your TR (3+ / 2-)
      Recommended by:
      theran, Pager, parakinesis
      Hidden by:
      BoxerDave, wiscmass

      It is abuse of the policy.

      •  Want another one? (3+ / 0-)
        Recommended by:
        sagesource, MA Voter, Puddytat

        Keep talking..

        I tremble for my country when I reflect that God is just; that his justice cannot sleep forever TJ

        by cdreid on Fri Oct 17, 2008 at 10:03:06 AM PDT

        [ Parent ]

      •  Uprated. Not troll worthy. n/t (3+ / 0-)
        Recommended by:
        Sparhawk, ord avg guy, JRandomPoster

        What's a good atheist substitute for "God bless America and Godspeed to you all"? Have a nice day and drive fast?

        by Pager on Fri Oct 17, 2008 at 10:05:43 AM PDT

        [ Parent ]

        •  You're right (5+ / 0-)

          Not a troll, just callous and heartless.  This mother needs support, not a scolding from the hall monitor.

          I can see the end of Sarah Palin's political career from my house. Sue, West Allis, Wisconsin

          by Puddytat on Fri Oct 17, 2008 at 10:24:00 AM PDT

          [ Parent ]

          •  You're right, that's me... (1+ / 0-)
            Recommended by:
            parakinesis

            ...heartless and callous, I care little for others.

            I've read a number of diaries with warnings against trolls and other commenters. These diaries often end up as troll diaries themselves, and note this poster says she "lost her daughter", when in fact, she clearly did not do so from the text itself, as other posters have pointed out.

            Asking that particular people not post in your diary is inappropriate. This site is a free forum moderated by community rules that generally work very well (except in the case of the person who trollrated me earlier). If diarists want control of their commenters, they should post on their own blog instead of here, and yes this includes people with autistic children.

            •  I call them as I see them (5+ / 0-)

              This mother doesn't need a visit from the Diary Police any more than she needs the Grammar Police that routinely patrol the diaries.  She's hurting.  

              I can see the end of Sarah Palin's political career from my house. Sue, West Allis, Wisconsin

              by Puddytat on Fri Oct 17, 2008 at 11:15:09 AM PDT

              [ Parent ]

            •  Here's a thought (5+ / 0-)

              if you dont like a diary DONT FUCKING POST IN IT.

              Seriously you're making my tr  finger twitch hard. If you dont like it go the fuck elsewhere. Now quit hijacking the fucking diary. Bye

              I tremble for my country when I reflect that God is just; that his justice cannot sleep forever TJ

              by cdreid on Fri Oct 17, 2008 at 12:10:09 PM PDT

              [ Parent ]

            •  Sorry (4+ / 0-)
              Recommended by:
              cdreid, aitchdee, BoxerDave, Crabby Abbey

              I teach English for a living. The "lost" here is well within mainstream usage.

              So, you're an idiot and a jerk. One does have the right to be an idiot and a jerk, in the same way one has the right to fart loudly in a crowded elevator, but most of us try to avoid it.

              Now, if you have this desperate need for contrarian attention, go do something less anti-social, like breaking windows.

              But what am I talking about? "Anti-social"? Hah. Isn't the definition of "libertarian" something like "F*ck you Jack, I'm all right"?

              On s'engage, et puis, on voit. (Napoleon)

              by sagesource on Fri Oct 17, 2008 at 12:35:06 PM PDT

              [ Parent ]

              •  Sparhawk (1+ / 0-)
                Recommended by:
                Sparhawk

                isnt a jackass from what ive read of his posts. Just having one of those moments.

                BTW your takedown made me envious.

                I tremble for my country when I reflect that God is just; that his justice cannot sleep forever TJ

                by cdreid on Fri Oct 17, 2008 at 02:30:41 PM PDT

                [ Parent ]

              •  Why do I bother? (0+ / 0-)

                I teach English for a living.

                Really? I got an 800 on my verbal SATs (it's true) if you want to get into a pissing match about this (I don't). Qualifications don't matter around here: since neither of us is publically identified, either of us could be lying.

                The "lost" here is well within mainstream usage.

                Then you'll have no problem citing similar uses of the word elsewhere. "Lost" = "my kid didn't get the services I wanted her to in the school system"? This diary probably got up on the rec list, replacing another diary that would have made it, because people rec'd it thinking her daughter died. Here's a thought experiment: take this same diary and name it "My daughter has autism and needs proper education". Rec list material?

                So, you're an idiot and a jerk. One does have the right to be an idiot and a jerk, in the same way one has the right to fart loudly in a crowded elevator, but most of us try to avoid it.

                The namecalling, the namecalling, it hurts. I merely asked the original poster to refrain from asking (threatening?) particular people from posting in her diary. That's not the way this site works: you post a diary, expect comments, period.

                Only one group of people have been calling other people names: you guys attacking me, not the other way around. I've been very polite.

                Now, if you have this desperate need for contrarian attention, go do something less anti-social, like breaking windows.

                Breaking windows is less anti-social than commenting in a diary?

                But what am I talking about? "Anti-social"? Hah. Isn't the definition of "libertarian" something like "F*ck you Jack, I'm all right"?

                No, it isn't. Left-wing small-l libertarians are different than right-wing big-L Libertarians.

    •  Really, this is what you thought to comment on? (6+ / 0-)

      You need to remove yourself, and deserve to be blasted by every commentor on this site, repulsive!

      •  *shrug* (0+ / 0-)

        The integrity of this site and the intellectually-honest free flow of progressive ideas is important to me.

        Posting messages ordering other posters to avoid commenting in your diary is the antithesis to this. There's a sure way to avoid comments in your diary, it's called, don't post it. But if you do post it, you should be prepared to be in compliance with the established norms of this site, and that includes the possibility of seeing comments that you'd rather not see.

        Note that this entire conversation would not be happening if the diarist had avoided posting threats to would-be-commenters of the consequences of 'inappropriate' posts.

    •  We the people get to choose which comments... (3+ / 0-)
      Recommended by:
      cdreid, sagesource, Crabby Abbey

      remain in threads and thankfully the people have spoken in regards to yours...

      George W. Bush... wiretapping the Amish since 2001...

      by ThatSinger on Fri Oct 17, 2008 at 10:14:14 AM PDT

      [ Parent ]

    •  Your right. (6+ / 0-)

      I don't get to choose who comments in this thread.  Which is why I gave that warning -- be an asshole to me at your own risk.

      I won't TR you.  But I will say this -- I have a feeling that if we were face to face, you would not dare to behave so cruelly.  The anonymity of the web has emboldened you.  My approach is the reverse of that -- I will be polite to you in this forum.  If we were face to face right now, I'd tear you to pieces.

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Fri Oct 17, 2008 at 10:30:14 AM PDT

      [ Parent ]

    •  Another proof.... (0+ / 0-)

      ...that libertarian = "fuck all of you others."

      On s'engage, et puis, on voit. (Napoleon)

      by sagesource on Fri Oct 17, 2008 at 12:27:43 PM PDT

      [ Parent ]

  •  I'm so very sorry. (1+ / 0-)
    Recommended by:
    revelwoodie

    My thoughts are with you.

  •  You & your husband have tons of... (2+ / 0-)
    Recommended by:
    kcc, revelwoodie

    ...fortitude!! TONS of it!  Know that, even when the weight of it all feels unbearable. Know it in your hearts, because I know it from reading your diary.

    Thank God for Americans like you.

    On a political note, we all need to realize that taxes are so important to paying for the services that the nation needs to function efficiently and morally. When I hear DEMS or GOPers talk about tax cuts, I cringe.  It's such a Reagonomics talking point:  pathetic and cruel.

  •  revelwoodie (1+ / 0-)
    Recommended by:
    revelwoodie

    I am so saddened by this. You speak the real truth. The truth that the GOP just doesn't not understand. Does not want to understand. You are the ones this country should be helping first and foremost. Not big business/industry.
    I am so sorry. Just remember: this fierce love you feel for your daughter -- she feels it.

  •  I would like to ask you a favor (2+ / 0-)
    Recommended by:
    revelwoodie, Jenw930

    I know it's an imposition, but could you build a webpage for your children? There are alot of us who don't have children, and would serioulsy like a paypal link to help you. I am also from NJ, outside of Atlantic City. I give to every charity that contacts me, but recently I have started looking for a closer cause. I have talked my friends sister-in-law into adding a paypal link to her webpage (she has a baby born with a seriously malformed heart). It was so difficult for her to accept help, but I explained to her how good it made family, friends and even stangers feel to help her. I don't know you, but I would be proud to help you and your family in the fight to save your daughter, and I'm sure there are many that feel the same way.

    •  How very kind to even think of that... (1+ / 0-)
      Recommended by:
      Jenw930

      ...thank you!  I think the best way to help now is to send Obama to the white house.  I updated the story (Update 4) above in response to your generous offer of support.  Thanks again!

      edscan -- 1/21/09. The truth will be revealed.

      by revelwoodie on Fri Oct 17, 2008 at 10:24:57 AM PDT

      [ Parent ]

      •  I donate to Obama once a month (1+ / 0-)
        Recommended by:
        Jenw930

        But we want to help you. Like I said, my friends sister-in-law didn't think it right to accept help either. But now is a dangerous time to use credit, let us help, it makes me feel good too, so you in turn would be making my life better!
        I have a friend, here in south Jersey, her child was diagnosed with high activity autism. In the beginning, they fought for all services, now they have just given up. The Dad is on the verge of a mental breakdown and the Mom is a full-fledged alcoholic now. So I do understand why you consider your baby "lost". This boy is now 12yrs. old, he has grown to be bigger than his parents and is somewhat violent. He is nude almost always, and sometimes isn't even potty trained, so yes, you have every right to say you lost your daughter! Without intervention and help, your precious baby won't have a life! AND TO ALL THE TROLLS, THAT IS LOSS!

  •  "Lost" is the right word ... (3+ / 0-)
    Recommended by:
    sagesource, LoriKP, revelwoodie

    You're absolutely right to keep the title. My wife and I went through a similar (but not the same) situation. Our daughter was born with a chronic bowel condition that required her for her first 2.5 years to be fed through an IV tube, and to have another formula-feeding tube directly into her stomach.

    So, while she doesn't have any mental disability, I can certainly empathize with your feeling of loss. And it is a valid grief over what's been lost. In our case, it was the loss of a "healthy" baby that could be reared under "normal" conditions.

    Compound that with having to fight with insurance companies, government agencies, and just the isolation as everyone else moved on with their lives after the initial outpouring of support -- when our daughter's care requirements hadn't changed in the least -- and you get a situation that can break even the most optimistic person.

    I do so hope that after this initial set-back you can find an alternative that will work for your daughter. All I can say is keep fighting and making phone calls and raising a stink -- because unfortunately that's about the only thing that works in these situations.

    All my best to your and your family.

    --Bush lied, thousands died

    by indyjones48 on Fri Oct 17, 2008 at 09:54:51 AM PDT

  •  Sue! (2+ / 0-)
    Recommended by:
    sagesource, revelwoodie

    As the mom of a cognitively disabled child, and a schizophrenic teen (yep - in the same house), I totally relate.  

    Take a lawyer to an IEP meeting.  That always shakes them up!  I did that once and got non-public placement for both my kids.  

    Keep on with the fight!  I know it's tough.

    "Everything is fucking spin." -- John McCain

    by Jane Hussein Doe on Fri Oct 17, 2008 at 10:08:49 AM PDT

  •  My prayers are with you and your family (3+ / 0-)
    Recommended by:
    kcc, deafmetal, revelwoodie

    I had a brother who lived 23 years. He never threw a football, no coordinated motor skills or speech. I was twelve when he was born and knew he would be the perfect little brother. He passed five years ago; I still struggle.

    Dennis Kucinich could have run with Dave Chappelle and been a better ticket than McCain/Palin.

    by niteskolar on Fri Oct 17, 2008 at 10:08:57 AM PDT

  •  Thank you for sharing your very personal (1+ / 0-)
    Recommended by:
    revelwoodie

    anguish. I cannot pretend to fully comprehend your situation or the pain you must feel but you have inspired me to volunteer locally to help parents of special needs children. I have heard in the past that there is a need even for something as simple as volunteer caregiving once in a while so the parents can have a night out to themselves. Recently I have been considering new volunteer activities as some of my others have ended, you have helped me to make my choice.
    I sincerely hope things will improve for your family, and even though your are dealing with a huge disappointment now, try to focus on other ways to overcome this unfairness. Don't lose hope that something can be done even though nothing seems apparent today.

     stay encouraged

    "The fundamentals of my economy are strong" ...John McCain

    by polticoscott on Fri Oct 17, 2008 at 10:13:45 AM PDT

  •  Revelwoodie (0+ / 0-)

    Is "Federalism" relevant to current day health policy? Numerous posters have posed the question of whether or not you could re-locate to another state.

    Why?

    It seems we're coming to terms, and to a new reality that to allow discriminating policies to vary by state, mostly based on the state's treasury, seems out of touch with a national desire to make issues like health care affordable and accessible to everyone.

    What does access mean if one must compare and contrast which state to look for the best care?

  •  More Resources (2+ / 0-)
    Recommended by:
    sagesource, Jenw930

    I deal with similar circumstances. My daughter is thought by many to be autistic, but in fact has a unique diagnosis.

    We receive services and support coordination from the state of Arizona through the Department of Developmental disabilities.

    We also belong to the National Association for Child Development. Their website is here. NACD works with children of all development levels and creates and individualized program to be implemented by you. They really believe that ALL children can develop.

    The closest local chapter to you would be in West Chester, PA. If you have any questions, you can reply to this comment and I can e-mail you more info and testimonials. One example is from an evaluator that was trained in Wisconsin as a speech therapist and realized her daughter at 3 wasn't developing. She wasn't talking either and was having seizures. She implemented NACD techniques and within 5 years she was AHEAD of her peers.

    There is hope. We never thought we would have a conversation with our daughter, but now we can. It is amazing and wonderful. She works really hard and there is much more to do, but we are so proud of her.

    There is also a video program called Watch Me Learn. The website is here. The basic background is that the developer was told her son would never speak and she wanted to try everything, therefore she made videos modeling correct behavior and interactions. You can even make your own with people your children care about. The result for her has been amazing. Her son now has great social skills and is a competitive diver.
    The West Paterson, NJ school district uses these videos.

    I'm also really sorry to hear about your grandfather.

    Politically incorrect = politically correct for asshole.

    by JRE100 on Fri Oct 17, 2008 at 10:43:05 AM PDT

  •  My dear... (1+ / 0-)
    Recommended by:
    Jenw930

    I wish I could find you and hug you. I'm a mom of a two-year-old preemie. We have been very lucky so far, but early intervention has helped us so much. I know how much we rely on these small scraps of resources. I just will send you and your family all my best wishes, and make a donation to Obama in your honor.

  •  Cheers for that 4th update! (1+ / 0-)
    Recommended by:
    javelina

    I figured you'd put up a hell of a fight.  

    If problems arise again in the future, and you're wallowing in despair, remember this moment.    

    You may have more moments when you feel like you're losing hope because of whatever bureaucracies you run up against, or whatever policies get in your way -- but remember to trust yourself. You'll figure out how to fight, and you will get your kids what they need.    

  •  My love and hugs to you and your babies (1+ / 0-)
    Recommended by:
    javelina

    and your husband! Bless you for working so hard for them.

    I'm betting you've already explored the option - but have you worked with/contact Easter Seals. My friend here has a 7 year old autistic son (though he's only Ausperger's) and she's gotten a great deal of help from them - though she had to work her ass off to get it!

    Anyway, just wanted to through that out there. Forwarding your post to that friend now, in case she has any suggestions.

    Fight on - and know that many of us are out here fighting for Obama, and believe as you do, that he is what we need for our children, able or otherwise, desperately!

    If you do post a PayPal page, post here at DK and I will give what I can, too!

    "The greatest menace to freedom is an inert people" -- Louis Brandeis

    by cgiselle12 on Fri Oct 17, 2008 at 11:09:59 AM PDT

  •  Let's keep the Mojo coming, people (2+ / 0-)
    Recommended by:
    sagesource, javelina

    Let's help keep Audrey at home, in school and on her way!

    That's what community is about.

    "My case is alter'd, I must work for my living." Moll Cut-Purse, The Roaring Girl - 1612, England's First Actress

    by theRoaringGirl on Fri Oct 17, 2008 at 11:24:53 AM PDT

  •  My heart goes out to you... (2+ / 0-)
    Recommended by:
    javelina, illusionmajik

    I will make another donation the the Autism Society of America as soon as I get my next paycheck!

    I have a 3 year old son and I cannot imagine the hurt you have gone through.

    I hope your daughter gets that spot in school.

    .
    .
    .
    We are all atheists about most of the gods that society has ever believed in - some of us just go one god further
    -- Richard Dawkin

    by deafmetal on Fri Oct 17, 2008 at 11:28:23 AM PDT

  •  More mojo to you... (0+ / 0-)

    We'll just pad the job a little for you!  

    Look deep into the love you have for your children.  Though they may not necessarily be able to say it, love is something that can be felt, and felt unmistakably.  It is something that cannot be denied.  And it cannot be measured in words or even actions.  It is the greatest might of honor in this life, and with you is the grandest army there ever was.  You are not just the keeper of your own love, you are the holder of your children's love as well.  And there, you will know the only righteousness that can be understood by man, and the only divinity that we can truly proclaim.  God may or may not exist, I don't know, but if there is something greater in this existence, let it be called love.  And may you know its pride with every step forward and feel its assurance in every step back.  It is trust, and it is never misplaced.        

    "A patriot must be prepared to defend his country against its government." A true patriot is one who must be prepared to defend his country against himself.

    by Capn Sassy Jas on Fri Oct 17, 2008 at 11:33:24 AM PDT

  •  I couldn't read this (0+ / 0-)

    until I saw there was a fourth update, and boy am I glad!!
    There was an article in my local newspaper a year ago about an autistic young man who had graduated from community college, and a photo accompanied the piece, which showed the dozens of people who had worked with him over the years. Yes, the family is wealthy, and also the father is a medical doctor who knows what is available and how to work the system. Not so for the largest percentage of parents.

    Good for you and your family.

  •  i'm sorry some literalists commented (3+ / 0-)
    Recommended by:
    sagesource, BoxerDave, LoriKP

    on your title.  Frankly, I stayed away from this diary last night because I didn't want to confront what it seemed to be about.

    However, your title is completely appropriate and should not be changed.  I never cease to be astounded at the inability of some people to think metaphorically.

    I certainly hope your family can get the support it needs in the courts.  This epidemic is a tragedy that I am convinced has something to do with the horrendous pollution of all sorts in our environment, including even electrical pollution. Please check out environmental medicine for some hints about what can be done.

    http://www.aaemonline.org/

    Just say "No" to Blackmail and the Shock Doctrine

    by fernan47 on Fri Oct 17, 2008 at 11:36:53 AM PDT

  •  Your heartache is our, too. (0+ / 0-)

    Someone (an ancient Greek, was it?) once wrote, "Nothing human is alien to me."  That should mean, as I understand it, that no person's pain is any less than my own, for we are all links in a chain.  Good luck to you always.

  •  Love to you and your daughter and (0+ / 0-)

    your whole family. And another donation to Obama as I hold  you all close in my heart, thoughts, and prayers.

    ...just another hooligan from the droogie clique

    by RadioGirl on Fri Oct 17, 2008 at 11:51:40 AM PDT

  •  Bless your heart (0+ / 0-)

    and your children's too, revelwoodie.  My daughter, who is closer to the Asperger's end of the scale, is 24 now.  It's exhausting to keep fighting the system.  I can't imagine doing it for two children.  

    I'll send some she devil vibes--they always worked well for me.  I think of my self as pretty mild mannered, but I found out that more than one person at my DD's high school were afraid of me (until they got to know me).

    "If you fear making anyone mad, then you ultimately probe for the lowest common denominator of human achievement." --Jimmy Carter

    by kkshedevil on Fri Oct 17, 2008 at 11:52:38 AM PDT

  •  Hi there. I am so sorry to hear about (0+ / 0-)

    your situation.  Just wanted to say - I have had some autistic students in my classes from time to time.  One thing you might want to consider is chess.  It tends to be a good therapy tool because it increases focus and other abilities.

    Just my two cents worth.

  •  So glad to hear they're holding the spot! (0+ / 0-)

    "Torture numbers, and they'll confess to anything" ~Gregg Easterbrook

    by googlymoogly on Fri Oct 17, 2008 at 11:58:27 AM PDT

  •  My prayers are with you and your family (0+ / 0-)

    God bless you, revelwoodie. I will pray for you and your family. Thank you for posting this, and thank you for not changing a word. You are in my thoughts.

  •  I see both sides.... (1+ / 0-)
    Recommended by:
    trueblue illinois

    I was a little bugged by the title, based on my own experiences of death and disability,  about then as I read this so eloquently written diary that managed to be personally and politically urgent the title became irrelevant. What an incredibly sad (And with updates) moving story.

    However despite the pain and anguish, I feel it's NEVER good to start out a post or a diary saying "trolls stay away because I can't take it" and then to say " I WOULD have changed the title but some of you were so mean to me." Many good and heartfelt posters on kos and elsewhere have sad and painful stories - if you're going to put it out you need to accept  not everyone will agree with you.

    That said, you've gotten good support and advice here - hope it helps.

  •  My younger son was diagnosed autistic.... (0+ / 0-)

    ...fortunately, he didn't agree, so to speak. He's eleven now, and although he still exhibits some autistic-spectrum symptoms such as hand flapping, he's doing fine in his education and has a lot of friends. He's crazy about computers, does martial arts, and has a huge rock and chemical elements collection. His latest love is a tiny sample of the platinum group element rhodium -- we thought it would be too expensive to get him a piece, since it's several times dearer than platinum, but then found an old X-ray target that is 1 cm across but only 1/10 mm thick. He loves to touch and look at these things that no one else he knows has ever seen, and to ask detailed questions about them -- and he remembers the answers.

    One thing you might keep an eye on in the future is reading. My son doesn't like music or long videos because they overstress his ability to assimilate information, but he is the world's most intense reader (in bursts) and his reading is now university-level. Keep books and written material, not just kid stuff but adult level, around your kids even if they don't seem to be able to absorb it at first. They may surprise you one day.

    Good luck.

    On s'engage, et puis, on voit. (Napoleon)

    by sagesource on Fri Oct 17, 2008 at 12:23:48 PM PDT

  •  very good news! (0+ / 0-)
    so, donation to obama - will do.

    keep posting.  keep us updated.

    "Republicans have been accused of abandoning the poor. It's the other way around. They never vote for us." Dan Quayle

    by RadicalGardener on Fri Oct 17, 2008 at 12:26:03 PM PDT

  •  Intention Works! (0+ / 0-)

    What is your intentions for your daughter, and your son?  Is it to see them live the life they want?  Happiness?  Whatever it is, write this down and read it every day.  For some people, this sounds like a lot of "woo, woo." It's not.  It's very scientific.  Read The Intention Experiment for more info.  Millions of us across the world are participating in intentions experiements and it seems to be working.

    Good luck to your family.

  •  Anger and tears. (0+ / 0-)

    We (the nation) have been so stupid!

    We (the population) have been so uncaring.

    We (the people and the government) MUST FIX THIS.

    I stopped counting angels on pinheads, so, obviously, it's a waste of time to discuss it with the pinhead.

    by FeloniousMonk on Fri Oct 17, 2008 at 12:52:15 PM PDT

  •  Working through the stages of grief (0+ / 0-)

    helps deal with the various milestones that you and your family will encounter over the years.  The pain is real and the sadness ebbs and flows.  Some wonderful times will shine through.  Those moments are more valuable than anything imaginable.

    As a mom of a 16 year old daughter with autism and mild intellectual disability, I can attest that it is a long difficult road.  Use your anger to stay focused and attentive.  Use your diplomatic skills to get things done.  Good communication on both ends is essential.

    Know that your love for and acceptance of your children will provide them with a valuable foundation that no one can take away from them.

    All the best to you and your family.  Good luck.

  •  A small contribution, I hope: (1+ / 0-)
    Recommended by:
    bubbanomics

    I'll need to ask my wife to come view this thread - she is a lawyer and a former compliance officer with the state department of education and is far more expert in this area than I am. But I need to ask, have you found an attorney to help you advocate for your daughter's interests? It can make a huge difference, rather than depending on advocates or consultants who often are ignorant of the law (and instead just act according to instructions and guidelines handed to them).

  •  Thank you (0+ / 0-)

    for sharing your story with us.  I imagine you would want to avoid any impression of using it for political gain, but I can't help but hope you send this to the news magazines, and any editorial board you know of.  We all have our own reasons for voting for Obama, but I think many of us would hang on to our own problems if we could help out your children, and our neighbor's, and our own kids, present or future, by electing Obama, as you have suggested by asking us to donate to him.  This is a story that needs to be heard outside of a progressive blog and by the non-partisan public.  God bless.

    Moses was a community organizer, Pharaoh was a governor.

    by CN on Fri Oct 17, 2008 at 01:04:58 PM PDT

  •  MY WIFE WORKS IN EARLY INTERVENTION (0+ / 0-)

    my wife does early childhood developmental delay...i will ask her to respond, but i know her first reaction would be:
    1- it is fortunate that your son is getting the help he is
    2- it is unfortunate that your daughter may have less opportunity
    3- if you are serious about not allowing your child to be institutionalized, you may want to strongly consider changing your schedule to the effect that you may accomplish what the school and therapists/teachers might have, and possibly much more...parents can have a much more profound impact than any school...you would need some guidance and periodic updating from your local pros, but you could feasibly make a huge impact yourself...
    i know this sounds like a conservative saying 'do it yourself', but in my wife's line of work the parents that are most involved almost always have the most success reaching the goals they set for their children.
    4- please accept my sympathies and i wish you well as you continue to seek help...
    5- learn all you can from all you can and don't give up

  •  I hope you win your case (0+ / 0-)

    All children should have the best that science, health care, and education offers.  Glad your son's school is holding an open spot for your daughter.  All the best to you & your family.

    Patriotism means to stand by the country. It does not mean to stand by the president or any other public official... ~Theodore Roosevelt

    by Pam from Calif on Fri Oct 17, 2008 at 01:14:03 PM PDT

  •  After reading Update4, congrats for your daughter (1+ / 0-)
    Recommended by:
    bubbanomics

    I read this diary last night and couldn't respond or comment I was so broken up.  How utterly unfair for your daughter and for your family.

    But they say there's 10 lurkers for every registered UID here at the DKOS, and I'd say that's about right.  I'd also say that maybe around a million people read your recommended diary since yesterday, thought of you and cried and/or prayed.

    That is a lot of good mojo.

    Good on you, your family and most especially your daughter (and your son, who goes to show that autism need not be the black well it's made out to be).

    If anyone deserved this chance it was your daughter.

    There is justice in this world.

    Obama/Biden, '08 - Because the failure of America as a democracy is not an option!

    by WSComn on Fri Oct 17, 2008 at 01:17:22 PM PDT

  •  best wishes, revelwoodie. (0+ / 0-)

    we're all rootin' for you, Audrey, the whole "woodie" family.  especially good to read Update 4.

    (-8.00,-7.85) 'My God! It's full of falme!'

    by bubbanomics on Fri Oct 17, 2008 at 01:42:19 PM PDT

  •  I JUST VOTED!!! (0+ / 0-)

    For Obama/Biden...of course!

    so that's one piece of good news. Now go early vote everyone on here!!!

    MAKE TRADE FAIR DAMMIT! And impeachbush.org! (1 mill+ names already)

    by siamesewonka on Fri Oct 17, 2008 at 01:42:34 PM PDT

  •  I don't know what its like to raise an autistic (1+ / 0-)
    Recommended by:
    cultural worker

    child, but I hope that you can get through this.  We really should be caring for every child, and not just the children of the wealthy but every child.

    •  For me, that's the value of this diary. There's a (1+ / 0-)
      Recommended by:
      Notus

      huge gap for me between "autism" and "my daughter" (or "her daughter") and reading this diary made tangible and palpable for me some of the assistance we--WE--should provide and must provide to "her daughter" and to every daughter in order for that child--and every child--to have the basic quality of life she is entitled to.

      This diary helps move me from the abstract to the particular, and that's one way to make sure that I understand the important work I and other citizens need to do to make sure that all of our children, and not just the children of a few, receive the health care and the education that are essential for their "life, liberty and pursuit of happiness."

      Nebraska: Who knew it was a hotbed of activist trust-funded latte-drinking Prius-driving brainwashed caucusers? It's not just about the corn.

      by cultural worker on Fri Oct 17, 2008 at 02:21:32 PM PDT

      [ Parent ]

  •  Caring for our children (0+ / 0-)

    Unlike many posters, I found myself having a negative reaction to your blog.  First, I reserve "I lost my daughter today" for that terrible day when I do lose my daughter today, which in my case is a real possibility as my own 28 year old daughter has cancer with just a small chance of survival.  I thought I was going to read a blog describing that experience that I dread might be my own experience in the near future.  Okay, so this isn't that kind of blog... it's more of a "hurt mother who hasn't gotten every service she thinks her child deserves and describes it all in exaggerated terms" type of blog.  I'll adjust my expectations, despite the title.  But the content of the blog itself I found at least vaguely irritating, rather than triggering feelings of empathy.  I suppose I don't like being forewarned that any reaction other sympathy for your situation will be labeled "being a troll" and I will risk being eviscerated.  I'm not interested in being controlled in that way.  My reaction is my reaction, and I'm sharing it with you in the hope that it will be helpful.  Your son is at a school where he is presumably getting great treatment at great public expense.  Your daughter is getting somewhat less than great treatment at much less expense.  It just seems to me that under the circumstances, you are not as helpless as you seem to think.  For one thing, rather than spending hours writing a blog or days functioning on your election committee, may be you should be focusing on providing the one to one service for your daughter that you think others should be doing.  It seems to me that needs to be a priority for you now, with your daughter in a critical time period for making progress.  Secondly, if this is so important, why don't you take out a loan and pay for her private schooling yourself?  Think of it as paying for college, only at the beginning of the learning cycle, not at the end of the educational cycle.  

    You've had two autistic children, but I don't get any sense that you have accepted these precious children for who they are.  If you did, you would not be anguished with unflattering comparisons to the development of comparably aged children without disabilities.  I think it's important to look at your own attitudes in this area and really consider whether you are providing the best environment for your children to flourish.  Children are going to have problems if they are raised in an environment in which the underlying tone is one of blaming others for not doing enough.  I'm suggesting some personal self examination here.  

    Good luck with your children.  Parenthood isn't easy.  

  •  I did find your title misleading. (1+ / 0-)
    Recommended by:
    Lefty Mama

    I had a child with Down's Syndrome who died after a brutal 6 months of heart surgeries and other medical interventions. So I had trouble reading the whole diary. I read the first paragraph, then skimmed the updates earlier today, but that was all I could bear to read. I went away from the diary still thinking this was about a death. Then I saw it updated with good news, and wondered what the hell? So I read it all, and only then did I understand.

    p.s., having been through both having a special needs kid and his death, the death was definitely worse. I think the only thing worse would be to lose an otherwise healthy child, because then the hopes and dreams would all be dashed at once, but I guess it's not possible to understand someone else's pain in any case.

    p.p.s. you are doing exactly what Sarah Palin is doing, namely politicizing your special-needs kid, though in your case I understand it because you really need help from the government.

  •  A Living Death (1+ / 0-)
    Recommended by:
    BoxerDave

    As painful as it is to lose a child to death, there is an undeniable and daily pain when you lose your child to a living death.

    However, I am very grateful for the hope that you feel today.  I know what its like to feel that moment of hope and cherish it daily.

  •  That's great news! I've got a couple more ideas (0+ / 0-)

    Been thinking of this a lot today. I don't know how your system works, so they're pretty generic, but I wrote above that I taught SPED for 28 years - loved it, I was a resource teacher, so my kids had mostly moderate handicaps, each year I had 2 - 3 Aspergers and high functioning ASD.

    Your son's school is holding her spot - great! I mentioned talking to them if possible about their suggestions to best position your daughter to get a placement. Obviously, you are concerned and involved parents. Not all are, even with the level of disability. It is also obvious to say that the teacher appreciates that you are, you follow through and reinforce what they are trying to do. So they know you and what you do for your kids. If there's no conflict they're likely to help you or at the very least offer advice. It's not like you're cheating the system, you are your children's best and primary advocate. There are obvious advantages to having the siblings at the same school - transportation costs of course, but also social skills training, and delivery of services.

    Then get the PLEOP _Present levels of Educational Performance of the IEP and Service Summary to reflect her needs 1:1, not 2:1. I agree with what you said about a 1:1 aide not the same, issues of independence and not effective with the behavior training model that the other school employs, is it like TEACH, from North Carolina?
    I hope all goes well, and that you follow up with a diary.

  •  there's lots of hope for both of your kids (1+ / 0-)
    Recommended by:
    revelwoodie

    I have two kids with IEP's. One is self-contained and the other is mainstreamed. One's in middle school, the other in 4th grade.

    I totally agree with the feeling of having lost a child (perhaps my own inner child?), and I still break down and cry on a regular basis.

    I totally DISagree with this:
    "The research is unequivocal -- the 2-5 year range is the window of opportunity to help these kids.  This will very likely mean the end of any hopes for Audrey's future..."
    That's not true. It's simply not true. Kids and adults can always learn new things. It is a little harder outside that window, that's all.
    For example, my friend has a highly autistic son who is in his 40's. I told her that my son didn't learn how to say "Mom" until he was 3 1/2. She told me that HER son finally learned how to call her mom when he was 35! And now he calls her mom all the time.

    Don't ever give up hope for more than a day or so. You'll have periods of incredible progress followed by months of stagnation - that's just the way these things go. We try different approaches every year, and stick with the things that work until they seem played out.

    In a democracy, everyone is a politician. ~ Ehren Watada

    by Lefty Mama on Sat Oct 18, 2008 at 10:35:54 AM PDT

  •  Saw Zeke today, after 3 months in school, and he (0+ / 0-)

    is doing much better.  He still isn't potty trained, but he is doing better, took my hand and rode on my shoulder for a long time today.

    He is still non-communicative, but he is doing better.  He made it all the way trough lunch today at a sit down resturaunt!

    Thought I should report and wish you again all the luck and faith in the world.

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