So I came across a news story on Yahoo about a special needs kid getting his high school diploma. Proud mama is grinning, and the headline reads Child With Severe Autism Beats Odds To Graduate.
Severe autism my ass. I’ll show ’em severe autism.
I guess we’ll need new terms to describe people like Jonah. Perhaps we could use adjectives from bags of Doritos: Extreme autism. Ultimate autism.
Or natural disasters: Tragic autism. Catastrophic autism. Lately it’s felt pretty catastrophic. Jonah’s gotten worse and worse, with a few glances of happy, like this one on Christmas Day –
One tick of grandma’s kitchen clock – and even as he smiles, you can see him reaching up to pull my hands off his body, ready to take off running-humming-spinning. At the next tick of the clock he’ll turn on you snakestrike quick, hands snatching hunks of hair, scratching skin, head butting, legs kicking, all the while strangely quiet as if silenced by a fear of his own violence. (When I visit him, I’m always half-blind; I don’t dare wear my glasses and I can’t wear contacts).
Thorazine didn’t work, though they tried raising the dosages steadily. And now the Anderson Center for Autism has reported to the Albany School District that Jonah is not meeting his educational goals (which include behavioral benchmarks).
In other words, you’ve got to find somewhere else for this kid.
Andy and I knew this might be happening soon. They’d hinted at it before. The Anderson Center reassures us, at least, that Jonah will not be sent packing on the next train to nowhere. They’ll continue to teach, house, and help him until we find a more suitable placement. In fact, one of his behavioral specialists tells me they’re planning to set up an alternative learning environment for Boo, where he will be the only student. It’s probably almost necessary, in fact, given Jonah’s recent attacking.
I don’t even want to consider what options there were for someone like Jonah a hundred years ago. I’m grateful it’s 2016, and I’m grateful for Anderson’s staff, who have worked so hard to help.
It’s just that I always considered the decision to place Jonah in residential care as the edge of the cliff. You do as much as you know how to do – call on every resource, employ every method you can, persist in every hope – until you face this wall of reality and on the other side your child must eat-sleep-learn-breathe-live away from you. As in, not in your home at all.
It was the end of a geographical era in our lives. It was an atom bomb. A record-breaking earthquake.
But not really. Turns out it’s just another chapter in a book about a kid so behaviorally affected that even the residential school we found for him couldn’t handle him.
An e-mail from this past Wednesday: This email is to notify you that Jonah was in a physical intervention on 1/20/16 at 10:30am, 10:53am, 12:30pm and 1:40pm. They’d called an ambulance to take him to the hospital the day before, because the aggressions were so frequent. The hospital isn’t the place for Jonah when this happens; Andy and I know it. But what is the place when this happens? Where can he go?
If Jonah gets better, he will undoubtedly stay at Anderson, of course. The cogs in this machine turn slowly, and if we can just get a handle on this, Jonah’s life need not be disrupted.
Urgency + desperation + helplessness = how Andy and I feel. We talk about it carefully, if at all. Not a lot needs to be said. “Where Jonah goes, I will go,” Andy tells me. I believe him; he moved to the Rhinebeck area when Jonah did, more than four years ago. He has a life there now – a job and a girlfriend he loves. But we take things one day at a time. We try not to put carts before horses.
Now Jonah has been completely weaned off Thorazine. Beginning tomorrow, he’ll start taking Clozaril – what seems to be a “last-resort” drug, usually used to treat very severe schizophrenia. And nobody even tried to sugarcoat the situation. This drug is risky. The information I look up is scary.
From drugs.com: Clozaril is available only from a certified pharmacy under a special program. You must be registered in the program and agree to undergo frequent blood tests. Jonah’s nurse explained how everything is well monitored – in fact they can only get 7 days of the medication at a time. Andy and I signed a form, as we always do with a medication change, but this prescription also had to go before the board of health as well.
I never thought I’d be okay with a drug that has so many warnings.
On second thought, I don’t think “okay with it” is what I am about the drug, or about any of this. But Jonah’s doctor said she’d used it on 10 patients and 9 of them showed significant, life-altering improvement. It gives us all hope, somehow, still.
The cycle of Hope and Despair turns stubbornly. In the midst of despair, you think you’ll never entertain hope again. Hope has let us down, after all. It’s let us down every fucking time. Despair is painful as hell but at least there’s no one holding a football to yank it away at the last second.
What a deliverance of hope it would be if Clozaril was the answer! I allow myself to imagine it this day for a tiny piece of time – a Jonah freed from aggression, from anger, from violence. My happy boy, our sweet Boo, the baby-est angel.
If I indulge in the fantasy, I come running at the football again, trusting Hope to hold it in place. What does it mean to come running again and again, knowing the football will be yanked every time? People have philosophized on this.
I don’t know. I just don’t want Jonah to hurt anymore.
I took this photo last week during a car ride, when Andy pulled over and we got out to avoid being kicked. These pull-overs happen frequently; Jonah’s good at scrunching way down in his car harness to get good leg extension and reach us in the front seat.
You can see Andy’s reflection in the window. Juxtaposed with Jonah’s expression, I think it paints a poignant picture.
Today was better, at least during our visit. Two direct caregivers walked Jonah out to Andy’s car to avoid the recent attack-mama-or-daddy-as-soon-as-they-walk-in-the-residence pattern. One of them told me Jonah’d had a severe aggression about an hour prior to our arriving, so we set forth with trepidation…but despite much kicking and multiple pull-overs, Jonah was better for us than he has been.
In the apartment, I even got him to sing a little as he traced a large figure eight in and out of Andy’s bedroom into the living area. We sang I’ll Be Working on the Railroad, Bye Bye Blackbird, and more than a few Guster songs for good measure. First I sang a line, then I motioned at Jonah, who easily picked up the melody, lyrics, and rhythm.
I thanked God for it.
Evidently they’re expecting Jonah to respond to Clozaril within two weeks, if he’s going to respond at all. Tomorrow’s the first dose.
Hell, I may just run at that football one more time.
You are a good mother.
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You have so much strength and courage even if you don’t really look at it that way anymore. Your words are powerful and evoke the emotions in your readers that you and Andy are feeling so vividly. My stomach is sick, my heart is aching but I feel that hope for you. I see you running at that ball full speed and I’m cheering you on!
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I do not know how you and Andy get out of bed every morning, how you put one foot in front of the other all day with your hearts breaking for this child of yours, this child you thought would grow into happy adulthood at Anderson. My heart aches for all three of you. I pray that Clozaril is the drug that finally calms Jonah’s aggressions and allows him to remain in the familiar environment of Anderson. My love is with you and Andy and Jonah during this heartbreaking stretch of your journey.
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Amy I’m so sorry about how severely Jonah is acting out behaviorally 😦 I’m surprised that the school is responding as if this is out of the ordinary. I know that other kids there have severe aggression and SIB’s. That’s why parents end up putting them in a residential! My son was extreme. Completely out of control. There has never been a time that it was implied that we should look elsewhere for an alternate school. Did you ask them if anything negative is happening in his house? Any changes in routine or staff? Just a suggestion. Kids react strongly to meds sometimes and each one needs to be changed with caution. Is the psychiatrist right on campus? Maybe you should look at other schools as an option if he is truly that unhappy. I’m thinking of you and email me if you ever need to talk. xx
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Hi Linda. To answer your questions: Yes, of course. No. And yes. And we don’t have a choice about looking at other schools – we have to. I’m glad this didn’t happen with your son. Jonah’s situation is out of the ordinary in that they can’t chart it or find ways to assuage or mitigate the aggressions. Thanks for reading, writing, and caring.
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Just sending you my love Amy.
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Right back atcha Caroline! Please shoot me an e-mail with your current address. I have something I’d like to mail to you.
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My heart aches with shared trauma, but also with joy to see your love for your precious son. You are an encouragement to me. My son’s autism doesn’t seem to be quite as severe as yours, but still we all live with CTSD (Continuous Traumatic Stress Disorder). I got a black eye for Christmas, and my husband threatened to have my son arrested… We had been slowly weaning him down on Risperdal, and had gone down to 4mg/day. I was in total despair, but I read a post of yours about trying to reduce the adrenaline factor, and ordered the book ‘Hope For The Violently Aggressive Child’. My son’s psychiatric Nurse Practitioner decided to give it a go, even though she is new and we’d only met her once before. So we tried an alpha 2a agonist and it is helping noticeably! I haven’t had a new med help so much, so quickly before. We had even tried Thorazine before, with no effect, along with almost every psych med out there. He still has tantrums/SIBs, but they are so much shorter, and less violent. The scars on my hands are already starting to heal… So, we owe you and Jonah so much, my son has more peace now, and for now he is here at home with us. Thank you! P.S. I like your idea of calling it Catastrophic Autism… if we are going to live through it, might as well have an appropriate name for it. I am ever so tired of people saying ‘oh, your son has autism, so does my nephew, he is so smart and does so well in his mainstream class at school….’ Mine is so bad, I have never tried to take him to school, they don’t even have locks on their doors…
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How amazing! Thank you so much for sharing your story. I have always said that if my blog helps even one person, our tale is worth the telling. Best to you and your son!
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We measure things by what we know as did the mother of the child getting his diploma (or the press more likely). You are still measuring the small things, a smile, a non-aggression – each of which gives hope. Don’t lose that hope (I don’t believe you ever will) as out there, somewhere, lies the answer. Keep on hoping and I will be hoping with you even as far away as I may be. Debbie X
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Thanks, everyone, for the love – especially when I throw a bitchy pity party because I’m tired of it all. xo
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Hi again 😊
Not sure if you remember me (Cathy from Autism Home Rescue) but we are in much the same boat as your family. Have you ever considered Melmark (in Berwyn, PA) for Jonah?
For quite a while, every year someone at some school or agency etc etc would tell me that they “couldn’t handle” my Alex and he would have to go somewhere else. Last year I fought a battle with his current residential placement (Melmark) and miraculously they accepted the challenge and kept him there. What they have discovered since is a completely new way to for psych/medical people and behavior people to work together in a truly interdisciplinary way and Alex’s life– and our family’s life– has greatly improved. In fact, their collaborations are apparently so unusual in the autism treatment world that they presented their work with my kid (they called him “Aiden” I think) at an international conference last year.
I only mention this because I can relate so much to your story and as a mother, I know the heartbreak catastrophic autism can cause. I figured it couldn’t hurt to share a place that we have found actually helps (side note: shouldn’t ALL places and experts actually help??? I mean, really? Why is this even a question?) just in case it would be a resource that could help Jonah too.
Maybe Melmark is located too far or just isn’t at all the right place for your family, but again, as a fellow autism mom I figured better to share than not to share.
All best wishes,
Cathy
Sent from Windows Mail
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Thanks Cathy. I do remember you, and I’m glad you came today to comment and share your own story. It seems Anderson is accepting the challenge too — they really want to help Boo.
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Dearest Amy,
I feel sick to my stomach yet so glad that you were able to vomit up all your grief, anger and hurt. I love you and always will. Please tell me when you are able or willing to out for coffee or a drink. I will gladly let you take my turn and tell me the hollowness you truly must feel when not feeling all of the above. I’m not forgetting you, girl!
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Keep running after that football. Don’t ever give up. One day you’re going to kick that damn ball so hard I may see it flying over my house. This post brought back many memories for me. I am actually wiping tears off my phone as I type this. You have an amazing family and you are beyond amazing. My heart goes out to you guys. Stay strong. Embrace every “good” day you have as a family. I will be wishing you many more to come. Thoughts and prayers going out to you.
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It is heartbreaking. I was only 10 when my brother (low functioning, nonverbal, ‘catastrophically’ autistic) was placed at Willowbrook. I can’t imagine how tough it must be for parents.
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