Friday, March 25, 2016

Children with Autism Grow Up, Too

My heart is breaking right now.

Back in late 2004, I stumbled onto "birth boards" on Babycenter. I had never been on an internet message board in my life, but for some reason, I joined the board with a group of other moms-to-be who were due with babies at the same time as mine. Many of those moms became close friends, and I'm still friends with them eleven years later. We've been through birth, death, job loss, marriages breaking up, remarriages, younger siblings, and now we're heading to puberty.

We've literally been together in sickness, and in health.

And in such a large group of moms, of course there is a far-too-large percentage who have children with Autism. We run the full spectrum in our group, which means that there are some whose children are at the "lower functioning" end, such one child I'll call "A." This is where my story really begins.

You see, as I said earlier, our kids are now getting to that really fun stage of childhood: puberty. And puberty is hard enough on a neurotypical kid. Now imagine going through all of those hormonal and physical changes without the ability to express your wildly swinging emotions. It's not unusual for kids like A to become physically aggressive, and to become a danger not only to themselves, but to those around them: teachers, friends, family. This is exactly what's happening with A.

So what is a parent to do when their child can no longer be physically controlled? When younger siblings are afraid? When parents are being injured? What should that parent do when they are honestly afraid to have their own child in the home?

There's a lot of talk about how important early intervention is when it comes to Autism. And it's true that it's important, but for some kids, it simply won't be enough. And here's a point people seem to forget: kids with Autism grow into teenagers with Autism, and eventually into adults with Autism. The need for programming doesn't end at the age of six (like the Ontario Government thinks - although I will say that A is not an Ontario child). If anything, the need becomes greater with age.

But the therapies needed - including, in some cases, residential programs - don't come cheap, and unless you can afford to pay out of pocket (I've often heard $60,000 per year quoted) or in the US you have a low enough income to qualify for medicare, you are on your own. You have your usual bills to pay, your other children to feed, clothe, and house, and you're looking at coming up with an extra $60,000 or having to live in fear in your own home.

I know an Ontario family that somehow managed to pay for one of those private schools, and saw a huge improvement in their son. Then, without any warning for the parents, the school folded, and the children - some of whom had come there from overseas - were just sent home. The family in question was so determined not to lose the progress that their son had made that they hired back the teacher who had been working with their son, and re-opened the school. THAT is the kind of desperation that parents face when trying to get help with their older children with severe Autism.

I'm stuck watching A's mom as she posts pictures of things that A has broken, and most recently, a picture of her face, battered and bloodied after A head-butted her. I worry for her, for her other children, and although I'm glad to see her friends rallying around her to try and provide what help they can, I'm infuriated that they are facing a two-week wait to get an inpatient treatment bed for A, and no emergency help from CPS or any other agency.

How is this reasonable? How is it that no one talks about how to best help these children as they get older?

I don't know what to do, so I do the only thing I can: I write, and hope that maybe somehow this will the attention of someone with the power to change things. Maybe awareness will help. Or maybe I'll just continue to watch as my friend continues to live in fear of her own child.

Please - don't let it be the latter.

*NOTE: I am not an Autism expert by any means. If I have used terminology that is inappropriate, or given incorrect facts, please let me know and I will gladly make corrections.