I just found NCSA, the National Council on Severe Autism, last week. From their website: Pursuing recognition, policy, and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.
That’s Jonah! That’s us! I haven’t been this excited to find an organization since never.
Last week I attended their policy summit, which was full of information and included panelists from many different autism organizations. There are other webinars coming up; they’re all free (and recorded if you can’t attend). I’ve signed up for Treating Challenging or Dangerous Behaviors, Part 1: Medical Support, which features 2 doctors from Kennedy Krieger and one from UCSF, discussing everything I want to know – what meds and interventions are working with people like Jonah. I’m drinking up NCSA’s resources like a thirsty camel.
This is excellent timing, too, because Jonah’s blood Clozaril levels have stayed high even though they lowered one of his doses, so they’ve lowered yet another dose. This is tricky territory; of course we don’t want the frequency or severity of the aggressions to go back up, but we want to keep Boo safe too.
The other day he sat in his room and sobbed tearlessly for 15 minutes. Briana texted to tell me he’d refused her offer of a campus walk, and when she returned to the house, he was in the midst of the crying jag. I asked if maybe he wanted to do a video call, but she didn’t think it was a good idea. When he cries like that, she told me, it’s usually because he’s ramping up to attack staff. I feel special kind of helplessness on these occasions. There’s nothing I can do to help him or make it better. At least I didn’t have to hear him cry, for my son’s sobs are long and loud and anguished. They break my heart.
I did get to see him again, on his 19th birthday, March 7th. I brought McDonalds, of course, and a piece of special cake my friend KP made sure to get to me. Jonah was okay until we went inside the Visitor’s Center and up the stairs, at which point he greeted me with a splayed hand to the face. My glasses went flying, just like in the old days, and he grabbed a chunk of my hair. Of course I had a strong companion with me – I daren’t visit alone – and he disengaged Jonah without much trouble. As aggressions go, it was only a 2 or 3 on the Richter scale, and the rest of the visit was fine. Our cinematic entertainment was the familiar Jungle Book. I think Jonah would have watched the whole thing, were our visit not limited to one hour. It was so good to see him. He even let me hug him at the end of the visit.
Even as I type this Jonah is just leaving the ER. Briana came to the house on her day off because staff was concerned about a boil on his neck. She and Caroline, another staff member, took him over to Northern Dutchess Hospital. I knew he had a bump, but I guess it was getting bigger and they were worried. The ER doc was all set to remove it with local anesthesia, but Briana explained Jonah would need to be fully sedated for that. They decided the risk of putting him under wasn’t worth the benefit, and they’re going to continue to tackle it with more meds. I guess Boo was wonderful in the hospital, so they took him through the McDonald’s drive-thru afterward. He probably really dug the car ride, too. I hope he enjoys his yummy food and has a good night.
I’ve strayed into the woods again to hike a few more times since I last wrote, and also went through a bout of angry depression that birthed the last post’s poem and started me to writing again. Since 2002, I’ve had a portfolio on writing.com (where I am winklett, of course) but I haven’t written much in years. Now the words are flowing again, mostly poems and a short story or two. The woods and the writing are positive forces in my life, and I am grateful for them both.
My phone *just* rang – it was Briana, sounding distressed. She said she had bad news. I guess somewhere between McDonald’s and the Anderson campus, Jonah attacked Caroline. It was bad, and it took 20 minutes for the two of them to get Jonah under control. Somehow they managed to drive back to the house, where 6 staff members are ready in case he attacks again.
See, this was almost a positive post. Almost happy. But no. Here we are again. The ever-loving shit show.
I didn’t find NCSA a moment too soon.
The Never Normal 