I keep seeing all these stories posted up online or in the news about people with autism. They are all stories of success and hope. They talk about being diagnosed at the age of two, and not talking or making contact with the outside world at all, but now they’re performing Shakespeare and doing complex algebraic equations at the local university.
What am I supposed to take from those stories?
Because we haven’t had any of those amazing success stories. We’ve had long, slow, and not even steady progress. From what I can tell, when Simon was five, he was on a two-year-old level. Now he’s 12, and he’s maybe at a four-year-old-level.
But will he have any more future movement? Or is this it?
We stopped his outside OT and Speech (he still gets it at school) because he wasn’t getting anywhere. He’d hit a wall.
He still surprises us some days, but other days it’s like there hasn’t been any changes in years. We still don’t have actual conversations. We still have to test him to see if he means what he says by re-asking questions and asking questions in different ways. He still does lots of “TV talk,” and while some of it might be slightly more appropriate, not all of it is, and, in fact, most of it isn’t.
But with his medication to handle his anxiety and aggression, he’s happy.
Shouldn’t we all be happy then?
Is achievement the only way to be happy?
What is happiness when it comes to this?
And who decides all this crap about what is “good” and what is “success”?
I know, this blog asked a lot more questions than it answered. But they’re all important questions. And, honestly, I think the questions are almost more important than the answers. Because the answers aren’t there. Not yet. And they may never be there. We won’t know what he does until he does it. We won’t know what “success” is until we’ve achieved it.
Lately, Simon has been on a Christmas movie kick. He watches “Christmas Eve on Sesame Street” (one of my favorites), “Elmo’s World: Happy Holidays” (not one of my favorites), and “Rudolph the Red-Nosed Reindeer.”
I have nothing against Rudolph, except…well, the message is a bit disturbing. Rudolph is forced to fit in – to literally cover up who he is and what he is (by donning a black cap over his red nose). And when it’s revealed that he’s not “normal,” i.e. not like all the other reindeer, then he’s shunned and kept from participating in society.
Until, of course, Santa needs him.
Then suddenly his difference is worthwhile and acceptable. More than acceptable, really. It’s something to celebrate! Go different people! (But only if that difference it helpful and benefits us!)
How is that any different than what Richard Dawkins said in his tweet when he declared that only some people with disabilities shouldn’t be selectively weeded out through eugenics?
Haven’t heard about it? Here’s a little piece from Huffington Post –
Dawkins tweeted that if someone found out that their fetus had Down Syndrome, they should “abort it and try again. It would be immoral to bring it into the world if you have the choice.”
When someone brought up the Autism spectrum, he said, “People on that spectrum have a great deal to contribute. Maybe even an enhanced ability in some respect. DS not enhanced.”
Seriously? Seriously? We get to decide which disabilities should be allowed and which ones shouldn’t? And what about people on the spectrum who do not have “enhanced” abilities? What about people who are more severe on the spectrum and need help to live?
Dawkins says that he thinks that there’s a “profound moral difference” between deciding to abort a fetus and stating that “this person should have been aborted years ago,” but I struggle to see the difference. Is his position that, once the person is born, then it’s okay to deal with the disability, but if it’s known, we should avoid it? What about physical disabilities? What about being an asshole? When will we get a pre-natal test for assholes?
(Please do not take this blog as any sort of stance on abortion as a whole…this is purely about eugenics and those who believe that we should chose who lives and dies based on their perceived value to society…)
Today a guy walked by me in the parking lot of the grocery store just as Simon got into the car and I was starting to put the groceries in the trunk.
This guy said, all disgusted-sounding, some comment like, “Huh, he’s just getting in the car and getting comfortable and not even helping you load those up.”
His tone made it clear. “Kids these days.” And maybe even “parents these days.” Because he clearly thought I was also doing wrong by not forcing my son to help.
Part of me wanted to correct him, tell him that I was happier with my son sitting in the car – somewhere safe, unlike the parking lot where the birds crying overhead would scare him and where loud noises would bother him.
Tell him that just minutes before, as I was paying for these groceries, my son had turned to one of the male employees at the store – someone we’d never seen before – and asked for a “big hug” while the guy looked all kinds of uncomfortable, and I’d had to ask Simon to come to me (again) which is what I’d been doing for the last fifteen minutes of waiting in line, trying to keep Simon from bothering the guy buying all the sushi and the woman with the shaved head and the monk’s robe (who I somehow thought should look enlightened or at least happy or even tolerant, yet the only way to describe her expression was disgruntled).
Tell him that the cashier had given Simon “Buddy Bucks” so he could go win stickers to save up for a prize, even though he doesn’t care about saving up for the prize; he just likes to put the sticker on his hand and wear it, going around all day with a yellow square that says “2 points” on it.
But I didn’t say anything to the guy because I’d rather let him be smugly satisfied with himself because I don’t owe him an explanation, and he wasn’t asking for an explanation. He was passing judgment on me and my son without knowing anything about us. And that’s his problem, not mine.
Main take-away point here?
How many times do I have to shout it from the rooftops?
While we were on vacation last week in Alabama, we took a boat ride. It was a three hour tour (but the weather never got rough, and the tiny boat was not tossed). But there was a woman on the boat that very clearly had autism.
She was older, my guess is in her twenties, maybe late twenties.
And she seemed, to all outward appearances, to be happy.
She rocked, although, to be fair, we all rocked since we were on a boat. She stimmed. She used sign language to communicate, and she seemed to argue with one of the people with her – her father, maybe? – who kept getting frustrated. She was signing something I couldn’t quite figure out (she was superfast as it), but I saw her saying something about little, and he kept saying something big. No idea what it was. But he got frustrated with her because she wouldn’t give.
Otherwise, she sat there, beaming happy. Her hair was blonde; her eyes were blue. She wore a charm bracelet that included all types of charm, including an autism puzzle charm.
And it gave me hope. Hope that in another 10 years, when Simon would be about the same age I’d guessed her to be, he’d be able to communicate that well, argue rationally, stimming in public without judgment.
As it was, Simon filled the boat ride with lots of “tv talk” (a lot of Elmo, for some reason), and paced up and down, back and forth, touching everything he could safely touch, his sea legs fully under him, looking like he barely needed to make any adjustments because of all the rocking and rolling the boat was doing in the waves.
I wanted to talk to the woman and her family, ask questions, know their story.
But that’s not my right. It’s their story, and it’s their life, and I wouldn’t normally go up and talk to random strangers, but, at the same time, I’d love to have random strangers come up to me and ask me about Simon because I’d love to educate them about him and about us and try to show them that autism isn’t some unsurmountable evil, and that as long as we can handle its side effects (anxiety, aggression, lack of communication), then there’s no reason to do anything else. As long as Simon can function and be happy, who are any of us to judge that he needs a “cure”? that he needs to change to fit in? That he has to enjoy things in a certain way? That there’s a right way and a wrong way to live and be happy?
Acceptance can go a long way, and seeing other people being accepting, being happy, being out there – it tells me that acceptance is happening.
All this week, Simon was out of his own form of summer camp – ESY.
For those not in the know, ESY is Extended School Year. School districts are supposed to provide it for students who are either in the process of learning critical skills when a break could prove detrimental, or when the students will regress too much after any extended break. Since Simon does regress, even after a week off school, having a full summer would definitely be too much time off for him.
We’re lucky, though. We have a good school district, and we have a good head of special program who actually cares about following the law. Students get various services and different amounts of time in ESY, based on their own needs. Simon gets his speech therapy all summer in ESY. He also gets bussed back and forth (possibly his favorite part of the day). He gets a teacher. He gets a paraprofessional in the classroom. It’s like school, but smaller. And it’s almost a full day; instead of 7:30 to 2:30, it’s 8:30 to 2:30, Monday through Thursday.
He loves it. Seriously loves it. When it’s the weekend, he will ask us every night when it is next. He will tell us that he will go to ESY tomorrow, as if making the statement will mean that telling us makes it so. He wants it. We want it. Because, honestly, what else would we do all summer?
I don’t want to sound like a bad parent. (Maybe I am? Maybe I’m not?) But, honestly, Simon would, I think, have a serious problem having the full summer off. When he doesn’t have ESY, he wakes up every morning and then tells us that we need to go somewhere. His normal request is the grocery store. I don’t know why the grocery store is so much fun for him, but he wants to go there and wander around. So we go.
But imagine doing that every morning of every day all summer long. Then raise your hand if you would go insane after that. I’m seeing a lot of hands up in the air. Mine included.
These are the times when I get jealous of all the people who send their kids to camp, especially sleep-away camp. I don’t know when, or if, Simon will ever be able to do that. Will he get to go do something without an educational component? Will he get to go spend the night somewhere? Maybe he’ll get to ride horses, shoot arrows at targets, eat at a mess tent with some horrible “bug juice” and bologna sandwiches. Maybe he won’t.
Luckily, tomorrow morning begins our vacation – a vacation Simon has been eagerly awaiting for months. Then it’s just one more week away from school before he goes back, this time into the 6th grade. Let’s see what the new school year brings…
This one happened by accident, but don’t almost all true advances happen that way?
Simon heard me asking our babysitter if she was available to work one evening so Patrick and I could go see a movie. When Simon heard, he latched on to what I said and immediately asked, “Go to a movie?”
Lucky for all of us, today was one of the Cinemark Movie Clubhouse movies. A dollar a head. Lots of screaming kids. It would work. Maybe.
In the past, when Simon has asked to go to a movie, he’s never lasted for more than half the movie. After half an hour, 45 minutes tops, he decides it’s time to “go home.”
Not today. Today we did it. He ate his popcorn. He drank his apple juice. He had one bathroom break. And he watched the whole movie!