When you're awaiting your first child you go through all of the checklists. Have you read enough books? Are you prepared with the baby proofing? Is your house in order? Are you making sure your spouse is eating enough, attending all the OBGYN appointments, listening to doctors and planning for what will happen next. You assemble a baby play pen and you have a room ready decorated. There is so much anticipation in your first child; you know the least about parenting from real world experience, but you're convinced you can do it better than those who parented you.. because you've learned from the other end of those means. That confidence flows through you like powers of a new found superhero aware of your amazing abilities as Parent, mother and father to a new child. It's a super power that doesn't come around in your life but once, with your first child.
In that moment, all you can see are positive outcomes. Your child will be an Ivy League star on the fast track to a bright future. It just seems within your grasp.. and you know it because a significant part of them comes from you - and you know if you could fix just a few mistakes here and there, change your life path just a bit, who knows what would happen.
What you never imagine as you sit in a delivery room holding hands and smiling over this slimy, beautiful new creature is a moment like today. March 15, 2013 will mark a milestone for our son, a new found teenager. It won't be an honor or an event we can attend and videotape and show our family. Instead, for his own health, our son will be sent into a 30/60 day institutional care program while they work on his medications to help him find his way through the rage he suffers.
I drove around earlier in the week and listened to Jenny McCarthy explain to Howard Stern how her young autistic child had been "cured" "oh, I shouldn't use that word, we say 'recovered' " and I thought to myself: I wish I could explain the level of harm you are doing to the number of people who are dealing with the realities of autism in their lives.
The autistic spectrum is huge, from people who manage on a day to day basis to live and work with all of us with the help of talk therapy and drugs, to those who are non-communicative or suffer paranoias, fears and other mental deficits that prevent them from dealing with society directly.
For our son, his utter brilliance in math has always stood out to us as a shocking factor; in fourth grade, high school math seemed simple to him. At current, he will gladly explain theories around irrational square root multiplication and other flights of mathematical fancy that can fill a chalkboard and excite his teachers and those in the school that work with him.
But when his fears, rage and self control break down.. often over simple things, his ability to potentially harm himself and others now extends far past our ability to stop him. Property damage has never been a difficult thing for him; from computers to toys to windows and TVs, bouts of rage found multiple targets with many levels of cost. But it is the rage against individuals and himself that begins to present the scary factors that result in his stay today.
As he has grown older, and his size greater, the level of his rage at things spins up more often, and the ability to potentially harm another has skyrocketted. Drug changes had helped, but eventually drugs stop working as well as they once did. He attends a special school with multiple paras assigned to him, but a few weeks ago, when he overpowered a para and began throwing furniture we knew that the spiral of rage was moving in the wrong direction, and like a runaway train the farther it ran the more difficult it would be to catch.
Three years ago, our son went through his first residential care stay, at that time, under different state government, our state provided a six-month benefit pass, allowing treatment facilities a chance to work with a child and figure out an action plan. Now, in our state, a PRTF is 30 days to be reviewed every 30 days. Funds are cut and admissions are more difficult.
He was an easy candidate, his admission was guaranteed. I listened to the treatment facility, which is also his day school, talk to me about the progress they hoped to make. The problem is they also had to mention the caveats: we have to accomplish what we can in quick order, because the clock is ticking.
The clock is ticking. It's ticking for us. And for our son. In the end, as he grows older, a group living or a residential treatment facility will be an integral part in him finding a way to live and participate in society and to put his genius to work.
It will be a long drive this morning, as we move him from the psychiatric hospital to the residential treatment facility, almost an hour and a half drive apart. It's the best chance he has at helping to find a future that he can be a part of.... and we will cross our fingers that positive progress can be made.
We will listen to his music, laugh at his jokes, and drop him off where he will live for the next month or two. In the meantime, we have to start planning for what is next. Over the next four years, as he moves into high school, we will have to start seriously debating whether or not Kansas is somewhere we can stay, for hopes of our child's longterm future.
This is the kind of Kansas our governor sets to create, that so many want. "Give us your poor, give us your huddled masses.." is replaced with "how fast can we drive out those who cost us money and make them the problem of another state.." They make no secret of it. And it just isn't American. It isn't the America I believe in.