The Never Normal

So I wrote a poem a day for National Poetry Month (April) – and it was a good re-exploration of creative writing for me. It’s been a while (probably 15 years) since I wrote poetry with any regularity. They say the writing saves the writer, so though people will never be knocking down doors to read my amateur poems, they have value for me – as outlets, if nothing else. Or reminders of who I am, what I enjoy. I love writing.com, where I have a portfolio of stuff (as winklett, of course).

Last week I attended part one of the 3-part National Council on Severe Autism (NCSA)’s free webinar series: Severe Behaviors, medical support. It was a unique experience in one particular aspect; for the first time, I was not the one with the most severe autism scenario. I’m used to people who are shocked and/or outraged that we put our son in a residential school. I’m usually the “horror story” of the bunch.

Not this time.

Most of the webinar was conducted by doctors discussing medical interventions, and they presented different scenarios they’d seen in the autism world. The severity of some of these situations was unimaginable, even to me. There are children who smash their faces into the ground and the walls until they are bloodied and broken. One child gouged his eyes and detached both retinas. The mind boggles. It broke my heart and I’m haunted by their stories. I don’t think I can ever again come here to bitch and complain – at least not the way I used to, ending every post with some stupid sad statement when all the while my son is safe and (relatively) healthy and happy.

Some of the individuals the doctors mentioned have been helped with electroconvulsive therapy (ECT) treatments (what they used to call electric shock therapy). I don’t know a whole lot about it yet, but I just bought the book Each Day I Like it Better, written by Amy Lutz (NCSA’s vice president). Amy’s son had aggressive and self-injurious behaviors which were successfully mitigated using ECT. (Yes, there is another Amy with another Jonah – and her husband, believe it or not, is Andy. You can’t make this stuff up).

I’m looking forward to reading her story, and I’m looking forward to the next two parts of the Severe Behaviors series. NCSA’s got all this information that simply didn’t exist before, and I’m all ears.

This past Saturday I got to visit Boo again. Halfway there, I realized I forgot to bring his assortment of DVDs. He’s never chosen anything but Jungle Book on these visits, but I like to offer him some choices. I decided to avoid a potential problem altogether and try the visit outside, since the day was warm-ish and the forecasted rain never arrived. Of course I brought McDonald’s and a strong companion to help me. We ate on the picnic table just outside his residence while he played music on my phone.

After lunch, I asked Jonah if he wanted to do a campus walk. He jumped up in answer, immediately ready to go. I took the risk and let him keep my phone. He was surprisingly okay with handing it back to me when he needed help, but he also could navigate a lot of it himself. We listened to Twenty-One Pilots and Harry Styles and Sir Sly, and he didn’t walk too fast for me like he sometimes does. At one point, after un-pausing a song for him, I handed the phone back — and he said thank you! For the first time: unprompted, unprovoked, and entirely of his own volition. I know Briana’s been working hard to help teach him but still I was amazed.

Hell, the sun even came out for us.

When we got back to the house, he allowed me a big hug and a kiss before he went inside. I couldn’t have asked for a better visit. The only thing I would have liked was more time with him.

Jonah does well in school these days, too, now that the kids are back in the classroom. Hs teacher says “He willingly does academic work and tasks given to him, with a little reinforcer at the end.  Jonah also expresses very well if he does not want to do something but I can usually tell him, you can have x amount of time then we will do work.  This seems to work well right now.”

Briana sent me his goals at the residence:

· Jonah will use a broom and dustpan to sweep piles of debris.

· Jonah will put clothes in the dryer, add a dryer sheet, clean the lint trap, and follow directions to push buttons/turn dial for correct settings.

· Jonah will put away cups and dishes

She thinks he’s capable of meeting the goals with some environmental cues and staff support. I think so too!

I’ve been trying to talk to him on the phone a few times a week. When the staff person answers, I always ask them to please find out if Jonah wants to talk on the phone. God knows I hate talking the phone, to anyone but him anyway. Most times Boo comes right over to talk.

Last night he sounded happy. Our conversation is of course limited, but Jonah does say “good” if I ask him how his day went, and he’ll tell me miss you, love you, and bye, if I say it first. He hangs up abruptly, all done.

Since I last wrote I’ve been on 2 or 3 more hikes. But I hurt my Achilles heel on my left foot and gave myself a break for a bit. Then I went out again this past Saturday. I’m so used to winter hiking that 50 degrees felt like summertime. It seems my limit is about 3 1/2 miles. Anything past that and my left knee hurts something awful, especially going downhill. Either that or the whole leg goes kind of dead – not sure how else to explain it. The trekking poles become crutches. I ain’t no spring chicken, but the woods sure do feel like home. I’d love to live in the middle of the forest someday. Maybe when I retire.

Of course it all depends on where Boo ends up, and we won’t know that for another year or so, I think. I want to be closer to him eventually. In my hoped-for future he is aggression free and I can visit often.

We’re working on it!

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