Last night, I saw a video of an 11-year-old autistic girl singing a duet with Katy Perry. As usual, I smiled as tears streamed down my face, feeling that bizarre mixture of trauma and joy, terror and heady hope, that I imagine is the secret companion of special needs moms everywhere.
But last night, for the first time, that video made me angry, too. Let me explain why.
I don’t talk about it much on this blog, but my oldest son has PDD-NOS–pervasive developmental disorder, not otherwise specified. It’s that ambiguous diagnosis kids are given when they don’t fit neatly within the traditional definition of autism, but don’t function as well as people with Aspergers. While Jamison is doing well at 14–better than anyone but a desperate mom could have dreamed when he was nearing four, and still not putting sentences together–it has not been an easy road.
If you want some idea of what the journey has looked like for us, you can read this article I wrote for the Covenant Companion a couple years ago, before Jamison started to get self-conscious about seeing his name in print.
Here’s why the video made me mad. I’ve been hearing it more and more, but last night it sank in. Full-time school from the age of three on. Two hours of therapy every night. An incredible school staffed by people who know just how to help kids with autism.
What alternate universe is this family living in?! And how do I get there?
Don’t get me wrong. I LOVE the people who have worked with Jamison, the medical folks, the teachers, the specialists, the para-educators. I appreciate everything they have done more than I can say.
But where is a child enrolled in school full-time from the age of three on? How is a family able to afford two hours of intensive therapy every night? Where are these special schools set up to help autistic kids reach their full potential?
Not here in Northwestern Wisconsin, I can tell you that. Like I said, the schools and people here have been incredible. But they’re just regular schools, set up for regular kids. And by the time Jamison hit middle school, it became clear that though it was no one’s fault, school was not working for him.
School was too loud. Too chaotic. Too distracting. Too stressful. And Jamison’s difficulties with processing language was making it almost impossible for him to learn in an environment where lectures were central.
So we pulled him out, and started homeschooling him.
Which is all fine and good. Except, what if instead of working at home, my husband and I both had to leave for work every morning to make ends meet? What then?
Jamison would have been forced to stay in a situation where he was miserable and truly incapable of succeeding. His grades and prospects for the future would have plummeted right through the cracks in the system.
Just like thousands of other kids stuck in that situation.
Then I thought about kids like Jamison who are living in poverty, and don’t even have the benefit of a great school system to fall back on. Whose parents may not have much of an education themselves, and might be marginalized for racial or socio-economic reasons.
And I got REALLY angry.
I am going to make an educated guess. I am going to guess that in some big city, let’s say Los Angeles, there is an incredible school where upper-crust parents send their autistic children to get an amazing education. The sort of school I was envying for my son, but that remains out of reach due to geography and $$$.
And I am going to guess that within a couple minutes drive of that school, there are kids like Jamison being labeled “stupid” or “inattentive” or “troublemaker,” because no one has the resources to give them the help they need. I am going to guess that some of their symptoms are going to be blamed on poverty or race or bad parenting, instead of on a serious neurological disorder. I’m going to guess it’s far harder for a single mom who never finished high school to be taken seriously when she advocates for her child than it is for me, with my middle-class speech patterns and conservative Scandinavian appearance. And goodness knows, it’s not easy for me. There’s nothing like an IEP meeting to turn me into a cringing, blubbering, traumatized mess, no matter how nice and supportive the teachers are.
Raising a kid with special needs is hard. Doing it without the resources of decent healthcare, a great school sytems, a supportive family and a safe, accepting community sounds like a disaster waiting to happen.
Surely, surely, we can do better than this.
I know that school systems are working hard, with limited resources, to do everything they can for the special needs kids they serve.
But often it’s just not enough.
Here’s my question: how can we, as Christians, partner with schools, clinics, families and communities to help children with special needs reach their full, God-given potential? What can we do to serve them, and their families? (Because I can tell you from experience–the families are often exhausted, weighed down, and stumbling under crushing physical, emotional, and financial burdens.) Is this question even on our radar? Or are we simply shuffling special needs people off into a “special room,” out of sight and out of mind, expecting someone else to “deal with them?”
What do you think?