Feeds:
Posts
Comments

Posts Tagged ‘poetry’

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!

Read Full Post »

When the principal himself at the residential school for autism
where you bathe live learn eat play please God are loved
calls my cell, I happen to be away from it. He speaks in an even tone.
I am upstairs pouring coffee comfort ritual routine into a blue mug.

A pretty co-worker comes into the kitchen, skirts me silently,
retrieves something from the fridge, and walks away. Invisibility.

My mother has just dropped me off in beginning-of-the-rain grey
after together we’d ushered my suffering sweet Sugar into Sleep.

I return to my cubicle, place the coffee down I am holding my breath
and on the cell phone a red light blinking blinking his area code

I dial into the voice mail it takes me two times, I hear Jonah is okay,
I hear significant incident hear how they tried to redirect him, keep him walking.
He was violently aggressive he needed a two-person takedown;
he likely hurt someone. More than one someone. Surfacing to bite.

Born of me who hated hitting, shrank from violence, submitted every time,
weak and yet I grew a wild white whale inside my womb, Ahab be warned.

Read Full Post »

Well I know I can’t be posting poetry all the time but poetry comes out of me in cycles, and when my mind shapes a poem I must write it.  I know most people don’t like poetry, especially mediocre poetry, so I apologize for placing it, perhaps, where it does not belong.

Jonah had a relatively good day in school yesterday, which was very cool to read in his log book – he’d gone roller skating and loved it.  He loves yoga too, and his scooter they pull him around on with a weighted-vest.  My sensory-craver boy…

Then D came over and Andy and she and I brought Jonah and the clippers outside, to the outlet halfway down the driveway – and between the three of us, we buzz-cut his hair.  D did the actual buzzing while Andy held Jonah and I sat on the driveway holding Jonah’s legs between Andy’s legs so he couldn’t kick or thrash.  He was hopping mad, of course.  It looked like a circus act, with hair flying everywhere and Jonah twisting around.  Good thing the neighbors weren’t out.  Afterward we had a near-bald boy who immediately ran inside to look at himself in his bedroom door mirror and run his little hand through its baby-chick-head softness.  I went outside to the driveway where all boo’s hair was scattered and picked up a lock.  Maybe it is silly, but I want it to hold when he is gone and I can’t be with him.

Of course he gave D and I plenty of trouble on the way to H’s house and pool.  Safe hands? he’d ask D, wanting her to hold both his hands.  She’d turn and hold his hands, then he’d try to pick his nose or swipe stray hairs from his face, so she’d let go, only to have him beg for safe hands again.  Over and over.  He kicked the back of D’s seat and head-rest, hit the windows HARD, flat-palmed, and screamed his loudest, his someone-is-murdering-me screams, laughing and giggling afterward.

What?  D and I would ask each other, unable to talk above the noise.  No wonder I am going for a hearing test this afternoon.  Between Jonah, my concussion, and all those loud 70s/80s/90s concerts I saw (like KISS, Rush, Def Leppard, Jane’s Addiction, and every other band where I’ve sat too close to the speakers on purpose), my ears are suffering.  I always did like my music loud.

Then Jonah started to beg for hot dog.  Hotdogwithmustard?  he asked repeatedly.  Hotdogwithmustard?  My plan was to stop at Stewart’s on the way to H’s, but then I called H and she said she still had some from the last time I brought some over, so she prepared one in her microwave, God bless her, so it would be ready upon King Jonah’s’ arrival.

Finally Jonah got both his naked swim and his hot dog and all was right with the world for a few moments, though the entirety of our visit was maybe 15 minutes, tops.  ADHD?  D and I were half-jokingly recalling the blessed days (which we used to complain about, believe it or not) when he would perseverate on just one thing at a time.  Let’s ride the escalator 75 times!  Let’s stare into the street sewer for a half an hour!  Let’s go on the merry-go-round 8 times in a row!

Going on the assumption that most folk prefer pictures over poetry, I’ll make sure to come back later and post some.  I might even upgrade my account so I can post video.  I’m taking pictures and video of Jonah with ever-increasing frequency, as if I can capture and visit him whenever I want.

“The candlelight flickers
The falcon calls
A lime-green lizard scuttles down the cabin wall
And all of these spirit voices
Sing rainwater, seawater
River water, holy water
Wrap this child in mercy…”

~ Spirit Voices by Paul Simon

Read Full Post »

%d bloggers like this: