May | 2015 | The Never Normal

Archive for May, 2015

82 degrees

Posted in Anderson School, autism, behavior, tagged aggressions with autism, California, San Diego, singing, swimming on May 28, 2015| Leave a Comment »

Remember when I said I was going to get through the winter without using lights and my thermostat set as low as I could safely manage it? Well, damnit, I did it. And now, for further fun and self-flagellation, I’m attempting to go all summer without putting the A/C unit in the window. It was 82 degrees in my house yesterday.

It all involves very little clothing, drapes closed, and a big fan.

I have a pleasantly cool, finished basement where my two new kitties and I can escape (Almanzo never returned, and I waited until my heart was ready to take in another animal companion). The cats are 3 years old and had been surrendered at the Mohawk-Hudson Humane Society a week before. I didn’t really want two, but they are sisters and I didn’t want to separate them. I’ve named them Laura Bess and Gracie – after guess who?

They are very nearly identical….white with graffiti-sprayed gray atop their heads. I put a collar on Gracie just to tell them apart, though Gracie’s bigger and usually now I can tell who is who.

Laura Ingalls Wilder was a little thing, after all — just 4’11”.

And what of Boo? He is himself. He is navigating his world the best he can, and we along with him. A sudden, explosive outburst at his father – when Andy told me on the phone, I nearly threw up. Jonah attacking him, causing scratches, bruises, bleeding. Chunks of hair pulled out. I wasn’t there and I don’t even know exactly what happened, but I’ve seen it all enough to imagine…

…and I don’t want to imagine and I never want to have that happen to anyone again and there isn’t a damn thing any of us can do about it.

I spend a lot of time in the woods. A lot of time alone.

I remain afraid of my son. I’d love to watch him swim, watch him sleep again. I never get to watch him sleep. Strange, the pieces of my mama-life I miss the most. Small memories. Momentpieces.

Everything is as it is. I am beginning a meditation practice with Tim, daily, though he is in Indiana and I here. I have lost my practice and need to regain the refreshing supply of mindfulness which comes from sitting in silence and outside of time. Most recently we visited for nearly 2 1/2 weeks together both in Bloomington, Indiana (where he lives) and San Diego, California (where he is from, and where we stayed – where I got to meet his mom and her husband, Chris). Here are some photos, of us — and of course, of Boo.

Love on the Pacific Coast

putting on his socks and shoes

And much silliness:

“The best things in life are silly.”

~ Scott Adams

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the artist

Posted in Uncategorized on May 19, 2015| Leave a Comment »

As is sometimes the case in the Capital District region of New York, it seems this year we’ve lept from winter to summer and are now slipping back to an uneasy spring, tulips & daffodils here and gone already.

Jonah doesn’t seem to mind what temperature the world throws at him, though maybe it would be worth noting if his aggressions happen more on days with certain weather. He was so aggressive one day recently, ripping another child’s shirt during one of his tantrums/attacks/insert phrase of choice. I frantically researched the web like I did when Jonah was first diagnosed with autism. Then I texted an old doctor friend who called me 8 minutes later and listened to me. He listened to me a lot and then he spoke a little and when I hung up, I felt calm.

Doc on the phone reminded me of many things. That I have done the best possible thing for my child: placed him in the hands of the people who are learning the latest empirically tested teaching tools and medications for autism…and for Jonah’s kind of autism. I know I need to stop panicking every time he has a Very Bad Day, and then not doing much of anything at all about it the rest of the time. I ask myself what I should be doing about it. I wonder if there is anything to do, anymore.

I did, however, also find in my research a new expression/phrase/diagnosis for what I believe Jonah has: Explosive Aggressive Autism. Trouble is, everything they postulate about EAA includes suggestions for steps we’ve taken years ago: residential placement and treatment. Risperdal. Prozac.

Jonah has had 3 or 4 good days in a row now, including on Saturday when my mom and I drove down to see him. He was happy, smiley, and about as calm as he gets. Andy as always is the best daddy Jonah could want, always taking Jonah out for a visit, often overnight, any time he can.

The cool news is that I received a letter from the Anderson Center for Autism to announce they’d chosen Jonah’s artwork for an exhibit at the Ulster County Bank in Redhook, NY. Here’s photographic evidence of said accomplishment:

Mooncat by J. Russell Krebs, budding artist

Proud mama comes in from the pouring rain and poses like a drowned purple cat beneath Jonah’s picture, thanking God and little baby Jason that Jonah himself has not been invited to the reception soiree. I enjoyed coffee and cake, thanked the people at the bank, and hung out for a short while.

Jonah will never be in a school spelling bee. He won’t be in the chorus of a high school musical, and he can’t run track, strong and windstorm-fast, to maybe even break a record. Jonah will never have an award because his baseball team came in 2nd place in little league. He won’t graduate from a “high school” – and his own yearbook, when he turns 21, will contain phrases that will make some people cringe. Jonah has worked hard this year to complete his in-residence training and is excited to move into his new room at High Horizons, where he will ride the bus every day and work independently as a bagger at Stop ‘N’ Shop.

That’s best case scenario. More likely it will be a far simpler statement:

Jonah Krebs hopes to rule the world through violent intimidation.

I am laughing so I don’t cry.

I cry anyway.

I want to blog more, here or on the “new” site I never quite set up, but I’m working part time doing social media management, website copy, fundraising, etc. for nonprofits and other businesses, catch as catch can, and I’m busy. Good-busy. Helping others busy. It seems to be something I can do and I’m getting along okay.

Here are some photos of the artist himself: