For My Son-
I know right now is a struggle for you, and I cannot always understand the demons that torment you. I have thought about you all day today; especially, the nights you talked about what I had written here at Daily Kos. The last few years have been good for our relationship, you as my copilot and friend, as we journeyed across Kansas, Missouri, North Carolina, Florida, Oklahoma and Arkansas together. You may not know this, but you, my friend, are the reason your Mom and I devoted so much time trying to change things.
You are getting older now, and the world is getting harder on you. We knew when you were young things would be a struggle, but we also knew that we would love you forever. With all our hearts.
Maybe you do not remember being so young, but we think about it all the time. We remember this little boy, in a striped shirt, sitting and playing away from other children because you did not like the noise. When you smiled and flapped your arms, though, at 18 months old, you were as cute as you could be, and your Mom and Dad would scoop you up to show you the world.
You probably do not remember much of life without your brother, who followed you shortly after, only 17 months separate you two. And both of you have been with us through the good and the bad.
But, Augustus, you were always a big part of the good. I know that is hard to believe sometimes. I know, this weekend, the voices in your head told you terrible things. And I know you’ve been tormented by where you fit in to the world. You’re 16 now, you’ll be 17 this summer, and you know you aren’t the same as your peers. People tell you that you are Bipolar, Schizophrenic and Autistic. They tell you, you have “issues.” I know it breaks your heart, watching your brother race through high school while you struggle with your own demons.
I know that in those moments, it is easy to feel as though the world does not want you. I get it. I know that is what made it easy for you to hear the voices in your head telling you that suicide was an option, but I am grateful every moment since that day that you found that strength to talk to us and give us every chance to help you. If you are reading this before you get home, I am glad you have worked hard to get that help.
And I am so sorry, so very sorry, that due to the way our government in this state works, the help you are getting just is not enough.
It is hard to not know where in the world you fit. Every kid goes through it, I promise. Every one of us had a moment where we second-guessed what we were doing in life. I know for you, internal obstacles have made it very difficult. It is hard to live in a world where all of the signs tell you that our state and country do not want to do the right thing to help you.
Son, the harsh reality of the world is the majority of the people in it try so desperately to be like everyone else, they forget what makes them special. To quote Harold & Maude, “I feel as though much of the world's sorrow comes from people who are this, but allow themselves to be treated as that.” What makes you different is what helps make people love you.
I remember the first time you went into residential care. It seems so long ago. We had a different governor then. Your Mom and I worried about what would happen next, but people around us wanted to see you get help. Crisis care in Kansas gave us two weeks in 2010, to find you a placement, in a good program. We found Lake Mary, friends, and more support.
I still think about the Sundays we had sandwiches in Paola. Our family meeting to find out how you were doing, at the end of a week, to catch up and cheer you on.
Your teachers came and visited you from your old school district, and they wrote you often. We all loved you, buddy. We loved you for who are you are, not for what you are not. We knew then that you had issues that people would not always understand; that there was a rage and a frustration that brewed inside of you, but we also knew that you were one of the sweetest kids I have ever known, and you still are today.
Your teacher knew it too; inviting you to be a ring bearer at her wedding; and fighting for you every day in her classroom.
The years have gone by, and many of those services are not there anymore. The resources are gone; that two week critical stay you had in 2010 is not even an option now. I am so sorry that 3-5 days of in-patient crisis treatment is the most we can get now, but know your parents are fighting hard to change that. Not just for you but for a lot of kids like you.
Too many facilities have closed around us. Too many people do not always care about doing the right thing. And I am sorry, so sorry, that you are the one who is suffering for it.
When I was younger than you, my younger brother went through what you are feeling right now. He had a physical disability, and because of it, our local school added an elevator and ramps. One night, a group came to my parent’s house and asked why the school should have to do those things, after all — it was “their” kid and “they” should have to pay for these improvements.
That was before the ADA. Because of those experiences, your Grandma taught me something about fighting for the right thing in the world. I remember uncomfortable Sundays in church where eyes would point our way as the family that demanded the school installed an air conditioner and a wheelchair ramp. I remember your Grandparents pulling out a mortgage and suing to do the right thing for your Uncle.
Your Uncle has a physical disability, and I know you feel that is different. But your Uncle also had parents who loved him, and so do you.
I know you read what I write late at night, when you pace around in your room or in treatment. I know that is when the demons haunt you most, and you worry about where you fit in to this world. I wish I could turn off those voices that tell you such terrible things. I wish I could wake up every time you need me to come running. But, I hope you read this when you are at your lowest, and when you feel that the walls are closing in.
It is hard to talk about mental health in America. People can say bad things about you, taunt you, hurt you. They do not treat you fairly, and you feel different. But let me tell you something, no one defines what is great in life, besides you. No one can tell you how to enjoy life, except for you. And no one gets to tell you that your life is worth living, except for you. Do not let anything convince you otherwise.
When you were born, your Dad gave up his plan to take his work ‘on the road,’ and do more, and more work for causes. I stopped because I did not want much more in the world, than to be a pretty good Dad. And, I have got to tell you, I have not been perfect — I have just tried hard. And that's all there is to it. I know you try hard at everything you do, too.
You have attended more political functions than any kid your age probably should, and your enthusiasm for learning more about how to change the world makes me smile every time. I will not forget your asking Senator Pat Roberts why he did not have time to shake your hand, or how you put a surprise hug on a Missouri lawmaker. You cheering the national anthem in Hoisington, or asking our Governor what he was doing to be a better person in Olathe.
You and I have been through a lot, and I hope you know your Dad will always love you. I know for a while, you probably cannot come home. I know that is hard. I know it is hard that you cannot stay where you are because our state has so few beds and support, that despite what happened this weekend, we cannot get you the same treatment you had a few years ago. So, for a few days, you and your Dad will have to sleep out of the house or hit the road for a bit, until we know your meds are OK and that things are getting better.
We are lucky, really, that it is possible for us. I know at times you worry a lot about the jobs your Mom and Dad gave up, and you blame yourself for it. Don't. Jobs and money are not worth making sure you are OK, and we can help you. We would do everything all over again to protect you, and I hope you always remember that. No matter what people may tell you, life is not about money or fame, it is about knowing that you have done something good in the world, and for me, that is you.
You will get out of crisis care Thursday, and it will be a few days before we can get you admitted into residential care. So, for a while, we will hit the road, you and I; we can go to Salina or Dodge, maybe we will travel to Pittsburg and Joplin. We can have an adventure together, I promise.
There are a lot of us who have spent a lot of time trying to improve things in our states for you, Augustus. People who do not even know you, but care about what happens for people like you. People who go to the state house every day to try to make sure what happened to you this week does not happen for other kids in the future, and that there is a plan to provide help. Unfortunately, there are those who do not want to see meaningful change in our state houses as well.
I have always thought if I started working on this problem sooner, maybe we would be further along. That is the thing I think about at night. I have come to accept that all we can do is the most we can with our time, and I know you are doing it.
When it is late at night, I want you to bookmark this and come back to it. Your parents would be heartbroken without you, son. We love you. When things seem dark, when the world does not want to give you the answer you need, know that we are always there for you, even when we may not be in the next room.
Everyday we think about you, we fight for you, and we cannot imagine a world where you are not in it the day after. So if ever you are in doubt, come back and read this again. Talk to me about it, like so many things we discuss every night. It is easy to think that the world is hard, and that people do not understand you. Even your parents may not always seem like the people who “get” you. But being Autistic, Bipolar, or Schizophrenic is not who you are… because what you are, is a child, who has parents who love him.
Please, never forget it, we love you too much to think about a world without someone as special as you by our side.
Love,
Your Dad
Update:
Thank you to so many for your kind thoughts for our family. In the end, millions of families in America deal with issues like this and we are not alone. We’re just often afraid or ashamed to talk about it. I’m glad that when he reads this, he will read so many kind words. I thank so many of you for singing out, privately and in such personal comments. Many people go through this every day; and I am personally touched by how many who have said such nice things. Continue to sing out, because people everywhere need your voices.