Tuesday, January 03, 2017

Reading is Definitely Fundamental

I wanted to write about an episode of QoD where James and Stephen talked about the way we use conversation and say things like, “Hi, how are you” when we don’t really care about the answer, but I can’t remember which episode it is and there are NO TRANSCRIPTS, and so I’m going to have to re-listen to stuff which means I have to walk and it’s cold outside now, so, no.

So instead, I’ll write about Episode 22 of Question of the Day, called Is Reading Fundamental.

When I saw the title of the episode, I had formed a very different idea of what it was going to be about. But because neither James nor Stephen is Adi’s mom, and they do not have the unique experience of being his mom that I have, they took the episode in their direction — discussing why people read (for pleasure, for distraction, to learn, and so on), which was an interesting discussion in its own right. But here’s what I think, which is obviously why you’re here.

I have a son who can’t read.

That’s not fair — Adi can read. He can identify English letters and guess at a few words in English. He can read Hebrew letters. He can sound out words. But mostly he relies on memorization and guessing. If we sit with him, carefully pointing at each letter, at each word, he can make it through a line. Another one. Maybe a third, but at that point, he has no idea what happened back at the beginning of the first line.

This hurts me so much, every day. It hurts me for many reasons. It hurts me because I love reading, and it gives me such joy. I love stories. Adi also loves stories, and I think he would get joy from reading stories if he could. It also hurts me because Adi already faces many limits, and this is just one more. In the coming years, I will have to break my son’s heart again and again, as I tell him about the things he cannot do. Reading fluency would open some of those doors.

Adi has some exceptional skills, and one of them is passing for typical. Adi doesn’t look like a child with a genetic syndrome. He’s ridiculously handsome (objectively speaking), and he doesn’t have the belly that often goes along with low muscle tone.

Heck, most of his low muscle tone is either gone or hidden by his insane coping mechanisms. Anyway, among the things Adi will do to “pass” is to take a magazine or a “grown up book” and hold it, as if he’s reading. When we are in a restaurant, he takes a menu and scans it. He can carry on conversations (this is miraculous to me, and I truly marvel at it daily).

When we worked with him to prepare for his bar mitzvah, he memorized everything, and then he would pretend to read it from the page. We knew he was pretending because he would direct his eyes slightly to the left of the page. It was crazy-making.

At one point,I had many dreams for myself and things I once wanted to do, but lately they seem irrelevant when I think about all the ways I want to change the world to make it more accessible for Adi.  I want to write a siddur (prayer book) for Adi. Something that has large print, and maybe easier Hebrew. The basics. I want to build a center, similar to this one, preferably a 5-minute walk from my home, preferably for religious young men with special needs could live, and where typical religious young men could live for free or reduced rent in exchange for X hours/week of volunteering. I want to create a work/life program so that Adi and his friends can, you know, work and live meaningfully.

There is a concept, cognitive accessibility. To make information accessible to people with cognitive disabilities. In practice, you don’t see this much, but Adi finds it in all kinds of places. He relies on icons and non-written cues. It’s astounding, and more and more, I think that this is where I should focus, this is work that I can do that matters.

So. Yes. Reading is fundamental. And I really wish QoD had transcripts.


isf said...

I am curling up into a little ball. How many times can a heart break and still be whole?
Sending love to you, Abbi. Somewhere along the way you have grown up, my child.
Now I am sobbing and have to go fix my face because a patient just walked in.