Susan's Blog

Friday, May 25, 2018

Wood that it were clearer

Yesterday I had to pick up Nat from his day program so that he could get to his band rehearsal and voice lesson by 6. His usual routine was unavailable because the group home needed the van for an event, so there was no way to take Nat to his practice.

Nat was ready the moment I showed up, of course. Someone is always hanging around the entrance and everyone knows me there by now, so the grapevine gets to Nat before I do. He walked right past me, to the car. I started up with conversational attempts because I have a problem with no talking. I do this, because I think it’s right, too. Even though — or possibly because of — Nat’s difficulty with talking. Ableist mother, right?

Or is it a caring mother who still believes in educating her son — although he is 28 — in the ways of the world?  I’m sure the autism community will decide.  But Nat needs to be as skilled as possible, he needs to work on his social skills. Just like I work on getting through my times of deep depression, when I just want to cancel everything and go to bed. I work on thinking, “this is only now, it will pass,” even though I just do not believe it at that time, even though I have so much evidence that I will find happiness, beauty, and good things again. That’s (some of) the work I have to do as an adult in the world. So shouldn’t Nat have to work on himself as well? If my insistence that he interact with me in the car for two rounds of conversation — is kind and respectfully done, am I still being ableist?

So we drive home in silence mostly, with me making comments here and there about what is going on around us — the beautiful day, the traffic, the stupid drivers, our upcoming weekend. Nat doesn’t answer, though maybe he is responding inside. It is worth doing. I have done this his entire life — talked to him a lot even without knowing where it was going — and one doctor said, “that is probably why he is as verbal as he is,” meaning, if I had not done that, he might not have developed even to that extent.

To me, avoiding ableism is about respecting the person and treating him as an equal. We can help each other be more skilled, more fluent in the ways of world. Any time you correct someone’s pronunciation, or school them in facts vs fiction, you are educating them as long as you are not disrespectful or superior about it.

I take Nat from where he is, and go with that. During his band rehearsal, I watch him in delight and awe. His passion for singing is just a wonderful sight to see. He has this hobby, this pursuit that fills his soul, and it shows. But yes, during the singing, I saw that his cuffs were flapping around and annoying him and I asked him if he needed help with them. He said, “yes,” and I rolled them up for him. I had tried to teach it to him earlier in the car, but he did not understand. So for the sake of expedience, I did this for him, thinking as always, “am I treating him like a baby?”

Once we were back home, we sat in the living room together silently. He was watching me. I had nothing to say to him at this point, nothing left to ask him. I started dozing, when it occurred to me out of the blue that I could offer to read to him. He could always say “no.” But I asked him, and he said, “yes,” immediately, I asked him to get a book, and he got out an old old favorite, Disney’s Pinocchio. I read it, wondering if this was okay. It is a little kid’s book, not an adult man’s book. But he chose it. He wanted it. He sat for it. He filled in the blank when I said, “A little boy who won’t be good might just as well be made of ____.”


Yay! Either this was because he was reading along, or because he remembered it from childhood! A skill either way. Win-win.

And furthermore, he smiled once in a while while listening. He wanted this. It was not age-appropriate. I know it was the right thing to do, though. It was easy, because I enjoyed it, and he enjoyed it. I met him on his terms. This is how you do it. But still — so happy about the skills he displayed.

I wish it were always this clear. Maybe more Disney would do the trick.


Friday, May 4, 2018

Healthcare Crisis in Autism Adulthood

In early May I wrote another piece for Psychology Today and you can read it here.