The Never Normal

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:

…getting away with clapping his hands on a treat.

Happy on a car ride…

Sweet nature kid, wearing his purple peace shirt I made him.

…and one of my paintings on a rock near a stream
where the artist dives in, swimming
and his mama comes to dream…