Happy Autism Awareness Day! And how’s your Autism Awareness Month going?
In our little family, the phrase “autism awareness” has more meanings than we want it to. Of course, there’s the topic of this post – raising your (and general) awareness about my son’s autism. But then there’s also that child’s lack of awareness as caused by autism. He’s 10 years old can’t count to 10. He doesn’t know how to use the toilet or how to say yes and no. He will never know anything about coronavirus. (Win!) He doesn’t recognize his own face in pictures – or we’ll never be sure he does. For his mom, brother, and me, autism awareness includes awareness of our powerlessness to know our own son.
Coronavirus closed Dar’s school as of March 13. So, what has he been up to since? Not sure if it was Plato or Confucius who said “everything defaults to easiest.” I am inventing this quote to describe our home lives; years ago we did all sorts of regular training for Dar. You know how a family with the first child does all the baby-book activities but then by the time of the fourth (or third, or second) child the same family is like “ehhhh, they’ll raise themselves”? In many ways Dar is like that fourth child, because in many ways his “terrible twos” have been going on for nine years now. He often protests work, and we often default to easiest.
That said, one of his teachers came by here on a motorcycle to deliver his programs, so then I started to feel bad that we weren’t pushing him more. Lately I’ve been doing the programs. If I tell you what they are, you may say, wait that’s all he has to do in a day? I sometimes think that too! Of course, this much IS a massive challenge for this one.
A lot of it is matching. He matches colors to colors, shapes to shapes, icons to icons. Easy icons are things he wants anyway, like popcorn or water or a walk. Harder icons are things he uses but doesn’t particularly care about, like a backpack or a chair or legos. Harder still are things that mean nothing to him, like an elephant or a van. I should place his name into this category. It means nothing to him, but after years and years of effort he’s finally matching D, A, R, W, I, and N to icons that say D, A, R, W, I, N. Well, usually. Or he’ll giggle at the whole thing and put any icon wherever he feels like it. Or he’ll get furious for no apparent reason and need a break.
His current school, dedicated to kids like him, differs from his private school in that it focuses on money. Pre-coronavirus, they would take him on walks to a store and try to get him accustomed to paying the store cashier with money. Well, at least, I saw them doing this with other kids. With Dar it’s next to impossible. He is also asked to match icons that closely resemble money – match a fake $1 to another fake $1, a fake $5 to a fake $5, and other bills and coins. He’s not great at it. This is also how they work on his counting to ten. His skill there is atrocious.
His sorting is better. Yesterday I came to him with pennies, legos, little plastic animals, and three Tupperware bowls of different sizes. I dumped everything together. Then I put a penny in the smallest dish, a lego in the medium dish, and a plastic animal in the larger dish. I told Dar “clean up!” (This is one of my favorite commands, period, because it often works. He destroys a tissue or something, then cleans up…most of the remains.) At first Dar put a penny into the lego dish, but I corrected him and then he was fine. He put all the items into the correct bowls. Yay Dar.
The school sent his programs as PDFs, once, but has been sending exercise videos (to all the parents) on the regular. (I think someone working for Dar’s school is sitting at home surfing YouTube thinking, oh hey, I know I sent others, but THIS Zumba class would be great!) Good luck getting Dar to exercise. Good luck getting Dar to clap his hands or slap his knees as an imitation. On the other hand, Dar doesn’t really need all that much exercise, because he seems to have my pre-21st-century metabolism, which is to say, food goes right through him. He’s in great shape. This may also owe something to the fact that he can barely stay seated. He runs around the house, like, often. So I don’t really worry about Dar and Zumba.
That said, quarantine showed us that he gets stir crazy if made to stay indoors all day. We take him to a park at least once a day. Pre-coronavirus I worried that Dar might touch people. Now everyone is worried that Dar might touch people. Especially older people. Well, at least that’s how I perceive it. When we walk close to or pass other hikers, I suddenly hold Dar close to me. And he often doesn’t love that. I try to avoid sheepishly saying “he’s special needs.” But it happens. I notice that the nicest, twinkliest looks often come from dog walkers.
Coronavirus has put focus on pets. Fosterings and adoptions are up just like pets in zoom meetings are up. I don’t think wifey really wants me to compare raising Dar to raising a cat or a dog. What wifey may not realize is that my love for animals teaches me how to love Dar more than I otherwise would. Particularly helpful is my general love for cats, who are not exactly known for reciprocating affection. My love for barking dogs also helps (me) on those days when Dar is shrieking incoherently all day. In quarantine this has come up a LOT.
Speaking of cats, anyone watch Tiger King? Maybe the only redeeming figure on that show was the one woman who had lost most of her left arm to a tiger. I realize I’m projecting, but she seemed genuinely unperturbed to have lost a limb. I admire and try to emulate that sanguinity. Is it also unfair to compare having an autistic child to permanent dismemberment? Sure, it might be.
Living with autism is like a lot of things, but no analogy really suffices. Hence this blog.
If I’m going to admire and emulate someone, it should probably be Dar’s home therapist. She’s young and has a condition that puts her in the vulnerable group for coronavirus. Nonetheless, this week, she valiantly returned to work, coming to our house and educating Dar for three precious hours every day. (We give her a very very wide berth, and everyone washes hands all the time, even though none of us know each other to show any symptoms. Knock on wood.) I know it’s just a job, but I like to think that she must be partly motivated by love for Dar. In this time of crisis tsunamis, she’s a rock-solid port of stability. That’s one analogy I have no intention of questioning.