It’s Blog Against Disablism Day. Be sure to check out the other bloggers, esp. Berube who’s blogging about Jamie.
I want to write about disabled kids who really don’t look any different from your kids. No wheel chairs or physical warning signs that might explain what happens next. Something that might prepare the stranger for the SCREEEEEEAM, the random phrase, the head spinning, the head banging, the mirthless laughter, the vacant stare, the hand twisting, the dart into traffic, the rituals, the curse.
These kids are given a variety of diagnoses: Sensory Integration Disorder, Autism, Aspergers Syndrome, Auditory Processing Disorder, Apraxia, Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder, and Hyperlexia. These neurological disorders are close cousins. Kids with these disorders suffer from a certain itchiness. They don’t quite fit in the world. Either they don’t understand what is going on or they can’t express themselves. Little things, like the feeling of wet grass, drives them crazy. Combine that severe irritation with a normal IQ and an inability to tell people what’s bothering you. That leathal combination makes one SCCREEEAM!!!
Strangers see this otherwise normal kid screaming and writhing, and they think, “BAD kid. BAD mother.” Sometimes close relatives say the same thing.
On Sunday, we went to see the final sermon of the priest who married us. Father Ashley is one of the good guys in the world. A 60s activist who sheltered Black Panthers in the basement of his church on the South Side of Chicago. Since his smart sermons are quite famous, the church was packed with wall to wall people that Sunday. We walked in there with the boys, and Ian immediately whined “no, no, no, no, no.” We tried to distract him with a juice box and snacks, but he moaned “no” and hid his head in Steve’s shoulder. Steve took him out immediately, because we knew that he was about to start crying or screaming. We know the signs. The crowds were too much for him. He was in pain.
These kids with the crossed wiring are embarrassing, weird, and annoying. But they can’t be hidden away in faraway schools. They are part of the world, too. They need free and plentiful therapy to make them less unhappy, but they are also never going to blend in perfectly. They are still going to say weird things and spaz out suddenly. So just deal with it.
Apt. 11d 
Amen and amen. I blogged on the good thing Disney and Universal theme parks do for the “non-visible” disabled.
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Wow. Thanks, Camera. I had no idea that the parks did that. Useful tip.
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Laura:
We just came back from a Disney trip. They were great about giving us one of those passes for our son, and it was a lifesaver for all of us.
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I remember reading a blog post by Wampum (four children with autism) which discussed how she was able to get a handicapped parking pass. It was nearly impossible to get four kids with autism into a mall without someone having a meltdown. Having a nearby car was essential, she said.
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My nephew (now 15) has Asperger’s and it has changed everything about my sister’s life. First thing, she didn’t try to have another child, figured it would be too much for all of them. He doesn’t do well with crowds – so while the theme parks offer passes, he’s not interested. It’s sometimes heartbreaking to be with all of the nieces and nephews and feel that he is such an outsider, but we’ve been trying to find a way for him. He’s in high school now and what will his life be like in 5 years? I think we all think of the children as young, but it’s his adulthood that we’re focusing on now. How do we pave a way for him to be a happy person? And when his parents are no longer around, can we keep his cousins close to him? For a child who doesn’t have a lot of friends, the unconditional love of his cousins is so precious. He is a wonderful, loving boy, but it is a hard thing for his parents to deal with.
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And even if other parents are understanding, their kids often can’t understand. At a recent youth meeting with an autistic 12-year-old: Mom, why is that kid allowed to play with the light switch? Mom, why is it ok for that kid to crawl around on the floor?
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Excellent post. It’s hard to parent any child but it’s harder when the rest of the world throws you dirty looks and whispers at your kid because of their condition.
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Ah, wonderful post. I’ve been meaning to write something long but not too personal about this in regards to my son (now 9), who deals with Tourette’s/OCD/ADHD, which not uncommonly occurs together. (That sounds better than ‘comorbid’, a word that gives me the creeps). Tics, compulsions, and hyperactivity make for some interesting public displays.
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yup, truthful (and painful) post.
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I’m commenting on this post very late.
I realize I’m not talking about the specific issue: There seems to be this general phenomenon lately where people feel quite entitled to complain about the fact they have to share the world with others. By this I mean public space. And yes, public space includes restaurants and cafes and stores and movie theaters and churches, etc. Why must children be brought there? Why must there be grotty old people who walk slow? Why can’t they leave the screaming kid at home? Why must the woman breastfeed in public? Why must the immigrants speak in a foreign language? I think it’s part of a troubling trend. It even goes so far as: Why must people have children at all? Why do the disabled have to be around me?
I think we actively need to teach people to embrace complicated humanity in their public space. For that, they’d have to see that they have some obligation and connection with fellow citizens or community members. I don’t know how to make that happen. But I think it needs to happen.
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Great Comments; I have 3 children,oneof whom is autistic.I come from a very large family, which got smaller when my son was diagnosed. I have spent the last 14 years dodging dirty looks and horrible comments from strangers and family. My son wants more than anything to go to Disney for our only family trip before his sister leaves for college. We cannot afford for us all to go and he will not go without all 6 of us. His Grandmother told him Disney is for good children and he cannot go,because she thinks he is just a bad kid who cannot be controlled and if we slapped him when he was younger he would not act the way he does. Of course if he was in a wheelchair or physically handicapped he would be her shining star. We have tried to get a dream trip to disney, but no one seems to recognize autism as a disability because he is not terminal. I am now faced with a child who cannot go to Disney and thinks its because he is bad. Our insurance does not cover or recognize his disability so we have had many bills for his therapies and medications. I think my son thinks some fairy is going to come by and hand him the tickets as easy as that. Its heart breaking but still nice to know there are people out their who understand what we parents go through. Sometimes I feel I would sell my soul to give this child what he deserves, but that would be to easy.With autistic children, nothing has ever come easy.
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Hi Joanne – I don’t know if this info comes in time or if anything will come of it, but try “Googling” the Elijah Foundation – I’ve been told that they sometimes issue “scholarship” money for autistic people to have experiences they might not otherwise have access to. I’m so sorry about how his Grandmother views him, but know from where you speak – my group of friends has dwindled somewhat since my son’s autism diagnosis at the end of 2004, and some family members refuse to believe there’s anything wrong with him (he’s three and the issues are not entirely apparent just yet, since much of it can be confused with more typical toddler/pre-schooler behavior.) Good luck, and I wish you well.
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