I am repostng a diary from last fall, to announce the formation of a new group: Parenting on the Autism Spectrum.
The purpose of the group is not to speculate about the how or why of our children's autism, but to share how we have dealt with raising a child on the autism spectrum; what parenting techniques have been effective and what have not; a place to seek advice from others who are a little further down the road; a place to vent when things aren't going well; or, as in this instance, a place to celebrate when things are going right.
Also welcome is the input of educators who are experienced with children on the autism spectrum.
What will not be tolerated is advocation of any one theory or pathway to the exclusion of any other -- as the saying goes, when you know one child on the spectrum, you know one child on the spectrum. Our children may share a common diagnosis, but they manifest that diagnosis in an infinite number of ways. What may work for one child may not work for another.
And there will be absolutely no tolerance for immunization conspiracy theories.
It's been a while since I've written about our adventures in public education as parents of a kid with high functioning autism.
Our boy now is 14, and a freshman in a large, urban high school. I just got a phone call from his case manager, reporting on his progress in the first two months of school.
Since our son's kindergarten diagnosis we've encountered teachers who are are extraordinary in their kindness and ability to see to the needs of all types of students; a special education teacher whose inexperience and ignorance of the autism spectrum, and method of dealing -- or not dealing -- with our son's disability set his development back; an administrator who steered us to an exceptional elementary level program which assisted in his communicative ability and who also, somehow, got a string of wonderful, one-to-one paraprofessionals assigned to assist him from elementary school, through the middle school years and now, on to high school (we think this will be the last year our son needs that assistance); the disappearance of appropriate programs in middle school and our run-in with a different, higher-level administrator who refused to acknowledge that continuing education in a familiar environment, with a small and familiar peer group, should be a consideration during the turbulent middle school years; an innovative teacher who discovered that using a laptop in class could ease many of our son's perfectionist-driven anxieties and insisted that laptop use be included in our son's IEP.
And now he's gone on to high school. I suppose most parents of kids with autism can imagine the anxieties we experienced over the summer. Our son has been attending a K-8 school, rather than a stand-alone middle school for the last 3 years. We determined -- guessed, really -- that the smaller student population and higher pupil-to-teacher ratio would be easier on him. But with high school, unless we wanted to somehow find the money for a private school, such a small, contained experience no longer was an option.
And, besides, our goal for our son is for him to become independent and fully integrated in society. His immersion had to start sometime, and this is the year.
Oh, gawd how I've worried! Our son is a very sweet kid; his feelings are easily bruised and he has the typical autistic difficulty in judging what are "big deals" and what are not. And connecting with other kids, making and maintaining the friendships he so craves is so very hard for him.
It helped that our district has a "freshman academy" -- a program for incoming freshman that runs for a week or two before school starts to acclimate all students (not just special ed students) to the new demands they will face, how to get around the school, and meet some of their new classmates.
But still, our son does have autism; he always will have autism. He gets overwhelmed and has outbursts; he will bite or hit himself to divert his internal turmoil. He has poor skills at determining appropriate and inappropriate topics of conversation and relies to a large degree on memorized bits of dialogue from the movies and television shows he obsesses about to fill in gaps in his conversational ability.
So I was more than a bit relieved -- indeed, I was positively jubilant -- to get the report from our son's case manager that our son is meeting the challenge. His grades are excellent -- three As, two Bs and one C+. Instead of having outbursts or injuring himself he's relying on deep breathing techniques or clenching his fist. He's managing to get his homework organized and completed without constant reminders and prompting from us -- indeed, he recently requested that I stop reminding him because he can take care of that himself, thank you very much.
And he's easily managing negotiating public transportation to get to and from school.
Yeah, he's still struggling socially, but he's decided to address that problem by joining the after-school theater tech club.
I'm writing this both because I'm so filled with joy at his progress, and to give hope to parents who may be dealing with a recent diagnosis of an autism spectrum disorder.
Don't discount what your kid can do -- push a little. Your kid may need a little extra assistance to get started but, once they get going they can do just fine. Let them know that you're available to help if needed but also show your confidence in their abilities.
Oh, and please, don't believe everything that experts tell you because, quite frankly, they really don't know your kid. Our son did not receive 40 hours a week of ABA therapy -- he went to a special pre-school starting at age three for several hours a week, but that was it. ABA may have the unintended consequence of programming responses into your child that reinforces the inflexibility which is a hallmark of autism. The team that first diagnosed our son's autism back when he was a 5 warned us against automatically accepting segregated autism programs because kids on the high-functioning end of the spectrum often will demonstrate more autistic characteristics because the group reinforces dysfunctional behaviors.
Try to co-opt school personnel, rather than fighting them; but be politely insistent in having your kid's needs addressed. You're not going to get everything you want -- we never did get the school bus we wanted during our son's middle school years -- but when you meet with teachers and administrators, try to keep a collaborative rather than confrontational mindset. Let them know that you really need honest and frequent communications from them, and that you are anxious to assist them in addressing your child's needs.
Our kids may be a little bit special -- and they also can be absolutely extraordinary.