On Tuesday, Jonah was taken back to the hospital, this time not only because of severe behaviors but also because he seemed to be struggling to poop and he looked pale and acted really lethargic. When they called me, I decided to drive down. I left work around 11am and when I got to the hospital in Poughkeepsie, Jonah was asleep under the covers with a pillow over his head. All I could see of him were his sneakers, still on his feet, at the bottom of the bed. He has three teachers in his classroom of 5, and one of them was there with him.
They had taken an x-ray of Jonah’s tummy and found impacted poop, so they woke him up and we coaxed him into drinking a seltzer-like laxative. He was all sweaty from lying in his clothing under the covers and he looked at me in amazement. “Car ride,” he croaked, more a statement than a question. His teacher was awesome with him, helping to keep him calm and telling me how loved Jonah was at Anderson. “I’m not just telling you that because you’re his mother,” he assured me. Poor Boo was bored and confused, but after another hour or so he finally pooped and they let him go back to the residence. I drove home in a daze. Before I reached the house my car started to shake. I couldn’t get the hood open to look at it, so I dropped it off at the shop. Turns out they had to break it open to get in the car. It was some crappy icing on my shitty cake.
Yesterday his main classroom teacher e-mailed me and was so kind. She asked what she could do to help and if I had any questions, and she said Jonah had a good morning (and included two pictures to show me). I am appreciative. I am grateful. I love that Jonah has teachers, specialists, therapists, direct care providers, and other workers who watch over him with such compassion and caring. Were it not for all of them I could not do this at all.
Got the car back last night, and this morning Anderson held a meeting about Jonah with his behavioral specialist, his psych doctor, teachers, and nurse. They called me to join the meeting and told me he was on his way back to the hospital for another psych evaluation after 12+ severe aggression incidents this morning. And so this is hospital visit #3 since Monday, and it’s beginning to feel an awful lot like this time last year.
This doctor is a new one, and she asked me if I thought Jonah might be bi-polar. “I tend to think there’s a co-morbidity with something,” I answered, “whether it be mental illness or seizure activity. Something is going on. There is never an antecedent. You’ve charted every possible thing from bowel movements to times he eats and sleeps, for five years straight. There is no discernible pattern. ”
Her answer, as it has been before, is to raise his level of medication (Clozaril) while adding a prn of Klonopin (as needed). She suggested the possibility of adding Lithium, but doesn’t want to do that right away.
I have read (and I really appreciate) all your comments and well wishes. I will try to come back to FB and re-join the Extreme Parents group so I can gather info and exchange ideas with other parents who’ve had experience with Kennedy Krieger and severe autism with aggression. Andy and I are working through disagreements about what to do here. Sending Jonah to KK would be a huge thing. Just the thought of transporting him there is a seemingly insurmountable obstacle. We want to make sure we are doing what is best for Jonah, both in the short and the long run.
I don’t want to go through what we did last year again. But it looks like that’s what’s fucking happening and once again we find ourselves in the frustrating position of having exhausted all ideas and resources.
When I reach out to the “experts” I find and they start asking me things like “What are the specific behaviors and when do they most likely occur?” I want to bang my head against the wall – not because I do not appreciate the attempt to help us but because people never get how far beyond the beyond we are at this point – how we are breaking new ground with this child and his behavioral (and physical) health.
How we’ve already tried that. And yes, we’ve already looked at that. And then there is silence, because nobody can chart us a path through this kind of journey, once they realize we truly are in a territory they have neither seen nor can understand.
We have to do it ourselves, and it’s scaring me to death.
I have been going to work and coming home and going to bed. It’s like I’m a device on low battery that you’ve got to use as little as possible to preserve its life. I am angry and I feel helpless. I’m shaky and sad and frustrated and pissy. I’ve been depressed lately anyway – I usually am this time of year – and I’ve thought that Jonah’s behavioral crises at the same time last year and this year might be something seasonal. But mostly I’m staving off panic, a deep and unwavering fear. There is no afraid of. There is only the being afraid and the trying not to be afraid.
A waking life of fighting the fear, and a grateful yielding to sleep.
The Never Normal 