On Friday Jonah’s new teacher e-mailed me to tell me about his week at school:
This week in class we learned more about pumpkins and and their life cycles. We also read lots of books about Halloween and October. We had garden a few times this week too! I attached a few pictures that I caught of Jonah picking tomatoes. He loved to pick them not sure he like the way they tasted though! We are super excited for Monday for Halloween! Our class is going to be lumber jacks!!! I’ll be sure to send more photos!
Halloween was never a happy holiday for Jonah before he came to Anderson.
From babyhood he cried if we tried to dress him in a costume, and he had neither the patience nor cognitive skills to go Trick or Treating, even with guidance. And so I learned not to be jealous of other parents and kids with their cute costumes posted to social media and their happy stories of Halloween parties and fun — the same way I learned not to be jealous on the first day of school, Christmas, and every other holiday or event shared by people all around us.
Eventually I learned to find a certain satisfaction & solace in the fact that I didn’t have to deal with whatever negatives come along with all those “normal family” things – like having to shop for a Halloween costume Jonah liked, or hoping to afford the Christmas presents he wanted, or dealing with whatever bullshit comes with the soccer mom territory.
Still, I was looking forward to seeing Boo dressed up as a lumberjack for Halloween, taking part in the activities and fun at his school.
The first year he was there (2011), they sent me a photo of him dressed as Spiderman and I actually cried from the joy/shock of it all — he had fun! He trick or treated (in whatever capacity they manage with kids like him)! He enjoyed a special day in a way that could never happen at home. He was doing better there.
But this morning, a nurse called from the school to tell me that Jonah had been taken to Mid-Hudson Regional Hospital after having repeated uncontrollable violent aggressions. They are going to keep me posted as to his status but now I am distractedly anxious and upset, and angry too. It’s the usual anger – nothing I haven’t talked about before – the anger that springs from the limitation of what they know about autism. Jonah’s kind of autism. The kind where he can’t stay home and even the renowned school we sent him to can’t handle him.
The kind where his Halloween costume is literally that of a mental patient in a hospital.
The kind where, when I research “autism and extreme aggression,” the articles all suggest “consider out-of-home care” as a last possible resort. After that there’s nothing. We’ve taken that last possible resort.
I’m tired of this holding pattern bullshit life for my boy, where even the most extreme drug regimen they can come up with isn’t doing the job. I want to research Kennedy Krieger again and bring their intensive program in Baltimore back to the table.
From the website:
Established in the 1980s, the Neurobehavioral Unit (NBU) is a unique, 16-bed inpatient unit dedicated to the assessment and treatment of children and young adults with developmental disabilities and intellectual disabilities who have severe behavioral problems. Throughout its history the NBU has served patients from across the country and around the world. The NBU is recognized as one of the leading programs in the nation for providing intensive behavioral treatment to individuals with severe and highly treatment-resistant behavioral disorders and developmental disabilities. We offer unique integrated and targeted applications of behavioral and pharmacological intervention using a data-based approach.
Our patients are cared for by professionals specializing in the fields of behavioral psychology, psychiatry, pediatrics, neurology, nursing, social work, and speech and language pathology. And because a child’s progress depends on caregiver involvement and participation in the program, the family is also considered a vital member of the team.
I don’t want Jonah to be away from everything that is a routine or comfort to him, but I think at this point we need to be a lot more forward thinking. Jonah is going on 15 years old and time is running out to manage the behaviors that preclude him from any chance of a life of inclusion and independence.
I am willing to look into taking a leave of absence from work and going down to be near him, maybe stay at a Ronald McDonald House or something. How can we not at least research it as a possible solution when it might be the key to his future? How can I not grasp at this straw when there are no others left in the haystack?
And so I sit and wait to hear from the hospital. I try not to think about him strapped down or given drugs to make him too dopey to attack. Try not to sit and cry and resent all the Happy Halloween going on around me. Try not to hold too big a pity party when I am helpless here and everything feels so out of control.
Try not to lose it altogether.