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On a Countdown and Deeper Thoughts on the Autism Box People Make

August 15, 2010

It’s winking, don’t you think? Or it forgot to put makeup on one side; that’s what this sunflower makes me think. So, I thought I’d share it.

One week and the girls return to school. Okay, one week and a day. A week from tomorrow. 8 days. I blinked and the summer was over. I wonder if it was endless for them? They had all that time off while I taught from 10 to noon four days a week for 11 weeks. I’d ask them, but can you imagine that conversation? Lil would immediately say, “Why are you asking?” This is her stock response anytime you ask her a question. Rosie would look at me with her huge blue eyes and that’s about all she’d do, just look at me. Maybe she’d take the conversation to a completely different area, like if I remember next Saturday (her grandma is taking them to McDonalds, so every day is a rehearsal for that). Maybe she’d just wander off. Either way, I wouldn’t get an answer to the question, and if I pushed it, I’d have to explain what endless means. Yeah, that’s an easy concept.  If I simply explained it as a long time, I’d get a duh from both of them. Geez, Mom, it’s been twelve weeks; that is a long time. And so, I won’t ask. Do you blame me?

Although they are tremendous fun to ask questions to, as long as you are ready for a real answer. Don’t ask if you’re sensitive. My kids have taught me to have not a thick skin but a serious case of the funny bone. Their minds work in such interesting ways and they can say the most unexpected of things, make the oddest of connections (but insightful), or completely and utterly miss the boat. Regardless, if you’re open, it can be completely delightful.

It can also be incredibly frustrating, head-bangingly so, and not for them. For me. Especially with my son. Especially when it really matters and I need him to get it. And he can’t. Not even close. And some days are reminders that despite all his improvements, he remains significantly disabled and unable to do most of what other 20 year olds take for granted. These days, those reminders, the potential dangers and pitfalls, all of these can twist my gut, put it through the wringer, and leave me breathless with almost-weres and very-nearly-weres and could-have-beens. Close calls, in other words, and we realize that while we must work to giving him as much autonomy as he can handle, that there are inherent risks involved when we stretch, when we loosen our grasp, our oversight, and it hurts almost as bad to pull back, to tighten up, because he doesn’t get it when we explain why things are changing back to an older way of doing things. It doesn’t matter how simply it’s explained; the cause and effect don’t get through to him, and we are left wondering if it’s been a matter of competence or luck and the very real fear that it’s just been good fortune that nothing adverse had happened prior to the situation that makes us alter our course.

There are people out there that insist that neurodiversity people think autism is only a gift, that it is only a joy. And I suppose that there are people who actually push for only positives to be told, but I don’t run in those circles, so I don’t know. I know that there’s a lot of folks defining other people’s positions and being incredibly wrong; they build huge strawmen to tear down in order to build themselves up. There are people who seem to take autism and make it a box, and any negative, any problem, those things go in the autism box. Anything good, positive, easy, delightful, that stuff goes in the not-autism box.

It doesn’t work that way. I guess it makes these people’s lives easier to compartmentalize it that way, and you can see that with only bad in the autism box, it’s incredibly easy for them to say they’d wipe the autism right out of the child and to think it horrendous that we would disagree with them.

So some of us don’t have boxes that sort out and label the deficits as autism and the strengths as not-autism. We look at our kids and we see our kids, not divisions, not items that can be sorted into laundry lists of get-rid ofs that we label autism. And here is where one major divide comes up, and it is a false one built up by those who have made those boxes.

Curebies say that neurodiversity proponents want to let our children wallow, that we do nothing to help our children.

This is not, unless the parent is abusive and neglectful, the case, and then it sure isn’t about neurodiversity.
All parents want the same thing: our children to be healthy, to be happy, to be safe, to have friends, to become independent, self-sufficient adults one day. All of us. We all want, with our children with disabilities, and our children with no special needs, for their strengths to get stronger, and for their weaknesses to be lessened. We want them to overcome their obstacles, all of them, and aim for the sky.

We all want the same thing. It’s just that some of us label all the bad, the negative, the deficits, the hurt, the pain, the fear as AUTISM. And some of us don’t.

My children are gifts. My children are my joy. They are also, because I am tethered so completely to them, my heart linked to theirs by Spiderman-strong webs, my greatest source of pain. Not pain for me. Pain for them, for what they endure, suffer, struggle with. What happens to them is imprinted on me, and my heart aches on days where their issues cause them pain, put them at risk, scare me breathless.

My children also have challenges. Some of these challenges won’t be overcome, not naturally, and not with all the hard work in the world. That doesn’t make them broken. That doesn’t make them damaged.  It also doesn’t mean I wouldn’t do anything humanly and safely possible to help them find ways to work around those obstacles.

Once you realize that, that we all want the same thing for our kids, you can’t pretend that there’s a real divide. You can, though, sit up and take notice at who refuses to look at the reality and who continues to push these lies. And you can hold them accountable because it shows beyond a shadow of a doubt that it isn’t about their kids, about our kids, about making the world a better place.

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