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.
Amy, my heart goes out to you, Jonah, and Andy. You are all in my prayers. I don’t know what else to say except that you are a righteous mama bear, and life is extraordinarily unfair.
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I am so sorry 😭
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Hi. Kennedy Krieger is a fantastic place. It’s hard to get into. I tried getting my son in; it took about six weeks of filling out copious forms, bringing backup from the school, videos of aggression, etc, and they had a team meeting and then got back to me. In the meantime my son had improved and I felt it wasnt the right place for him anymore. But ESPECIALLy for kids already living away from home who have been threatened with expulsion from their facility, they will give higher priority.
Some mothers who had their kids there describe the program as difficult to experience, because most of the kids are severely self injurious. The intense program is no picnic; ABA and token economy, rewards, etc. Medication management ends up being the least prioritized of all the other things they do. And they expect the caregivers to follow up afterwards and continue doing their methods, otherwise they feel it’s a waste of time.
however, in your case I really think it’s the perfect thing to do. First of all, you don’t want Jonah to be really expelled and end up in a much worse facility. Secondly, they can definitely try to come to the bottom of his triggers and behaviors. It does not hurt to at least fill out their online application and submit it. You can take it from there. I found them to be wonderful and kind people. They will offer you suggestions if they don’t think Jonah fits the criteria. There are other similar places; I’ve heard of a place called Sheperd Pratt. Jonah definitely doesn’t belong in a typical psychiatric ER. They will have no idea what to do with him.
Can you rejoin the Extreme Parents group? The group is FULL of moms going through all this. Many of them had their kids in Kennedy Krieger. It will give you a wealth of resources.
Please come back to the group.
Your friend, Mindy
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Amy
I’m in tears as I read this blog today. I hope that you can find the help for Jonah that all of you,especially him, deserve. I miss that sweet boy at school when he was little. My thoughts and prayers are with you today.
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I’m sorry Amy. Feeling helpless in these situations is the worst. Sending all of my positive thoughts your way.
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Sending my love, Amy xxx
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My love is with you and Jonah and Andy during this latest torturous episode. Since I’ve never walked in your moccasins, I have nothing but love to give, unlike Mindy. My intuition tells me that her response is exactly what you need to hear. Good luck getting Jonah into the Kennedy Krieger program or one very similar. Please let your friends know the aftermath of Jonah’s hospitalization via another blog post. Love you, Lady!
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This is Deja Vu for me, as I just brought home my girl from UC San Diego Psych ward. She is 23, but I had no choice but to refuse to bring her home. She was in for 4 1/2 weeks. Your son sounds just like her.
Please feel free to call me or private message me on FB
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