Oh Muhammed, or Mu, as we like to call him… my sun-shiny 13 year-old autistic boy, with his big smile, bigger hugs, and that mischievous sparkle in his eye. I’m literally kvelling just thinking about him.
But the rest of the world? Its patience seems to be wearing thin. As I explained in a post last year, Inclusion Sucks, Or Why My Son Has Nowhere to Swim this Summer, Mu has the sort of autism that makes him welcome, well, not a whole lotta places. So naturally we’ve had another summer of rejection.
And it’s not just about food. He can use it say, “Fix that!”— “that” being soap dispensers (three of them, yes, there must be three) when not placed at perfect 90-degree angles. Not to mention helping him medically, since he can usually use it to tell me where the “hurt” is. Mu wears the device pretty much all day long. It’s his voice, an essential.
Now, Mu’s autism is really severe. He can be aggressive at times, have tantrums, and massive meltdowns. And when he does, you better believe the device is right there through it all. So our insurance policy includes getting a loaner during repairs. But recently the company that makes the device denied Mu one. Why? He was on the “Do Not Loan List.”
I mean I’m an Arab and a Muslim so I’ve totally heard of the Do Not Fly List. I’ve even heard of the Do Not Call List. But a Do Not Loan List? What’s the heck is that? Like a three-strikes law for autistic people?
Anyway, even without a loaner, Mu managed to ask to go swimming about 100 times. But guess what, we can’t go. Because, wouldn’t you know, we are also on the Do Not Swim List.
We recently took Mu to a nearby community pool, and let’s just say things didn't go so smoothly. We were asked to leave.
I gotta admit… not cool Mu. That was way outta line and I laid it down to him. But believe it or not, that’s not why we were asked to leave. It’s because he was bothering the “moms and their young children” and taking “bites out of the swim noodles.” First off, I’m fairly certain there were chunks missing in the swim noodles when we got there—hey, it’s not like typically developing kids are all well behaved angels. And second, if allowed to return I would bring an armful of new ones as gifts—the Dollar Store is, after all, an autism mom’s best friend. But for now, it’s no AAC and no pool for Mu.
Now, I know what you are thinking—if Mu can’t behave in a way the public expects, at least there's help at home, right?
Well, think again, because our behavioral agency recently put Mu on the Do Not Serve List.
After years of working with us they decided they wanted to drop Mu because they couldn't “appropriately” serve him (code for we don't get paid enough to deal with your kid). So, after much advocating we were able to secure help of another agency.
Then, within a week we faced another walkout.
It started with the toilet. If something has a moving part, Mu will most certainly figure out a way to break it. It’s not that he means to or does it on purpose. He’s just very strong and doesn’t realize his own strength most of the time, some of the time, okay… all of the time.
Anyway he broke the toilet handle and tank so often our handyman finally insisted on installing a commercial version made of one solid piece.
Problem solved? Hardly, because then Mu broke off one of the sink handles, and then the doorknobs to the bathroom. Three strikes, again.
Even the handyman had enough. He quit, too. Yes, the ultimate nightmare for us autism parents—the Do Not Fix List.
[End note. Please read before you send me hate mail. I believe all persons with autism should be accepted as they are anywhere they go, while I’m still holding out for my autism kibbutz or island. Whichever comes first. It’s all about choices. I respect everyone’s choices. Even yours.
And yes I’m a Muslim who likes to speak some Yiddish, okay? Kvell = to gaze upon with love and pride.
And finally, for those who don't like realities of autism discussed in public, I'm not shaming my son. There is no shame in behaviors one cannot control, it's like saying there's shame in a seizure for someone who has epilepsy. If you are ashamed for Mu, well shame on you.]
Feda Almaliti is Vice President of Autism Society San Francisco Bay Area.