Monthly Archives: December 2017

On Inclusivity Versus Tribe in Special Education: One Mother’s Thoughts

On Friday, night, Callum attended the first birthday party he’s been invited to by a classmate. All the other kids (mostly older) attending the party were fully verbal and had established friendships. No, he didn’t fit in exactly. But the birthday boy’s family were welcoming. And every single one of those boys turned and exclaimed, “Hey, Callum!” And gave him fist bumps. He got to “play” party table games with daddy and the other kids and won a bunch of candy. He had pizza. He stood during the birthday song. He was thanked enthusiastically for his gift. He ate a giant wedge of strawberry cake. And got some more fist bumps and a genuine “Goodnight, Callum! We’re glad you came.” It was a success.

We can start a passionate debate here about inclusive education and how awful/wonderful it is that Callum now attends an exclusively special ed school. But I’ll tell you right now why parents agree to it. Because of moments like this. Moments when other children are welcoming because there’s zero pressure not to be. Moments when a 13-year-old boy can proudly open gifts of cologne, gift cards, and trendy clothes alongside equally desired gifts of toy cars and dinosaurs - with no embarrassment. Moments when no one is the odd man out because everyone in attendance understands the state of Otherness. Moments when everyone can relax, smile, and just be.

I know how an ideal, inclusive world is supposed to be. But I also know it doesn’t exist yet. And unless you have spent time in an exclusively special needs school, then you cannot understand what the students and families get from them. They get the same thing that everyone who shares an identity or common experience gets from spending time in the company of others like themselves.

Yes, I want inclusive education. But I would be lying if I said we didn’t experience something at that party that felt good and right.

And I feel all sorts of conflicted about that.

On the Giving Up of “Hope” for My Disabled Child

A couple of weeks ago, I listened to a conversation between parents of autistic children. The first - a mother and father - were relating their experiences as parents of a severely autistic, nonverbal child with intellectual disability and discussing how they love, enjoy, and accept their son as the person he is.

The second - a mother of an autistic adult - interrupted them with oversimplified advice to “just [insert unsolicited opinions] and he’ll be fine”, noting that her child is “now married and doing fine”. She finished with “You’ll see. Don’t give up hope.”

The parents of the severely disabled child were a class act while struggling to not argue with the woman they clearly saw as well-intentioned. But I knew what that patience was costing them on the inside. I know what being on the receiving end of such advice really feels like.

And it has nothing to do with resentment that her child is doing so well in life. It has everything to do with a pervasive belief that somehow accepting the limitations of a severe disability is “giving up” on a child. You hear this mantra from friends, neighbors, educators, etc., but it’s worse when it comes from a fellow special needs parent.

My son has a severe disability that places him in the “highest needs” category. He is considered functionally nonverbal, severely autistic, and intellectually disabled. He is old enough now and has had enough supports in place that we can make some realistic, informed predictions about future supports and transitional planning. Is it possible we’ll be wrong? Sure. But with all things considered, it’s not likely.

What I want to know is how is my acceptance of who he is “giving up” on him? The implication is he’s somehow a failure if we do “give up” and he doesn’t achieve what others believe is necessary for him to be a successful human being. Is he a failed soul should he not grow up to go to college or marry? Is he our failure if his brain simply isn’t wired to do those things?

Is a paraplegic a failure if his spinal cord fails to regenerate? No? Then why is my child a failure if his brain fails to form neurological connections? Where did anyone get the idea that all we have to do is “believe” to alter a person’s physiology?

If you know or love someone who overcame early developmental challenges but went on to live a fairly typical life, that’s great. I’m honestly very happy for them. It makes life easier if you can go that route. But do the rest of us a favor and cease insinuating we aren’t doing something right if it’s not in the cards for our loved ones. My son’s future is ultimately not going to be the result of “just believing” in him. I already believe in him. I believe he is delightful. I believe his soul is beautiful. I believe he has dignity. And, unlike those who tell me to not “give up hope”, I believe he is worthy - just as he is.

So, am I giving up “hope”? You’re damned right I am. I’m giving up hope of him being anyone other than the amazing person he already is. I’m giving up “hope” in unrealistic dreams of futures he isn’t likely to have, and I’m replacing it with genuine hope for him to be the happiest him he can be. And I’m doing that with all of the IEP goals, therapies, love, and exposure to his world that I can pack into his formative years. But in the end, he’s going to be who he is meant to be. It’s good enough for me. It ought to be good enough for everyone else.

And, no. I’m not going to give up hope for that.