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Archive for November, 2015

amazing grace

How sweet the sound of Jonah’s laughter!  What a gift to us this Thanksgiving Day.

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Against all odds Andy was able to drive him up with just a minor incident of aggression – and once at grandma’s house, Jonah was gleeful and good.  I stood behind him and snapped selfies of us…photo after photo because he was allowing it, because he was so happy:

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In this one he's drinking a swallow of black soda right from the 2-liter bottle. We were so thrilled we gave him whatever he wanted this day.

In this one he’s drinking a swallow of black soda right from the 2-liter bottle. We were so thrilled we gave him whatever he wanted to eat and drink this day…

...which included hot dogs, a breakfast sandwich, and cheese cake

…which included hot dogs, a breakfast sandwich, and cheese cake.

Andy and I took him to the railroad crossing in Voorheesville, his favorite place aside from grandma’s house.  Just after we parked, one train came roaring by, speeding fast, while another crossed it going in the other direction on the next track.  The two trains briefly shared the two track space and then the second train continued on, slowly, burdoned by a double stack of cars.  Jonah opened his window halfway and stared, slack-jawed with wonder.

Everything fell into place on Thanksgiving 2015.  We found the day’s missing puzzle piece and placed it, with time to admire the completed picture and be thankful for its beauty.

Whatever lies ahead, I will always be thankful for its beauty.

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Every day since I last posted, I get something from Jonah’s school – maybe a phone call to tell me about an incident report and body check, complete with a listing of where and how bad his bruises are.  Then, most days, an e-mail as well — always phrased exactly the same but for the date and time:

Good Morning,

 This email is to notify you that Jonah was in a physical intervention on xx/xx/15 at x:xxam in the xxxxx and at x:xxpm in the xxxxxx office.  If you have any questions or concerns, please feel free to contact us.  Thanks

 xxxxx

Education Administration

 Anderson Center for Autism

4885 Route 9, PO Box 367
Staatsburg, NY 12580
* Jxxxxx@ACenterforAutism.org

It’s a sickening feeling, waiting for the e-mails, knowing they’re coming, understanding I cannot stop them from coming, trying to accept I am helpless to cease the cycle of Jonah’s aggressions.  And I was just interrupted by a phone call from them now.  They tell me “Jonah is okay” first, which is important, because I’ve panicked from seeing the 845 area code come up on my caller ID.  But I’ve gone from a heart-pounding worry to a dull, almost numb acceptance of whatever it is they’re calling to tell me.

I wish I had something better to report.  Jonah’s psychiatrist spoke to Dr. Ankenman from my last post, and together they determined Jonah was not one of the individuals who could be helped with his adrenaline therapy; his pulse and blood pressure statistics did not indicate an appropriate match.  And so they have been using Thorazine while very slowly titrating down his other meds.  The dosage of Thorazine has been increased, little by little, and now he is taking 50mg 3 times a day.

It’s not working.

I spoke with a childhood friend of mine who has a daughter with autism.  She’s been doing chelation and mega dosing with supplements, and my notes from our conversation include:

Search Robin Goffe – YouTube videos/articles & on FB
Guggenheim and Robin Goffe – video
Autism One Conference – Every May in Chicago
Immune System Deficiency
 BioMed
ATEC test by Autism Research Institute ARI ATEC
Healing the Symptoms Known as Autismby Kerri Rivera, who started a protocol where kids recover entirely from autism

I’m grateful for her input, and I cannot say I’ve thoroughly investigated all of these things yet, but I noticed that the book (last item in the above notes) has a long list of reviewers who’ve rated it a 1 or a 5 (worst or best) and hardly any in between; people seem to regard the author as either a child abuser or a saint, which doesn’t bode well.  Plus I’m just not ready to climb on board with anyone or anything that has only anecdotal evidence.

Then, last week, I lost one of my best friends, DF, very suddenly.  She passed away after a hospital procedure led to complications. Today is her wake, tomorrow her funeral, and the awful finality of it is finally starting to sink in.  I’ve been sick to my stomach over Jonah, and now from my dear friend’s death, and I don’t feel like it’s the beginning of any kind of holiday season in which I’d like to participate.

I’m trying to stay optimistic, and I’m very grateful for the many blessings in my life.

Still, I feel stranded. Choked off.  Tired.  I’ve lost too many people too soon.  I’ve come to accept the deaths.  After all, at least our relationships were not lost, not really.  And I can even hope to accept the one relationship it seems I can’t fix.

But I can’t accept that nothing can help my son.

For those of you who left e-mail addresses, thank you.  I will write to you as soon as I can.  Thank you to my mother, always at my side visiting the grandson she loves enough to risk/incur injury and heartbreak every week just to spend a few minutes with him.  Thank you to my close friends (you know who you are) and to all of you out there who have expressed your support, left kind comments, assured me I am not alone, sent cards, never judged, and stayed with me through it all, good and bad.

We’re hanging on.

Jonah's daddy, holding him on the grass of the Anderson School campus during a recent aggression. Jonah's got his shirt tight in one hand. Eventually, Jonah calmed down. Once under control, Jonah got into the car and we started our visit.

Jonah’s daddy, holding him on the grass of the Anderson School campus during a recent aggression. Jonah’s got Andy’s shirt tight in one hand. Eventually, Jonah calmed down. Once under control, Jonah got into the car and we started our visit.  Jonah’s daddy is amazing – he keeps his son safe and loves him so very much.

 

Later that same day: Jonah has a calm moment and even, thank God, a smile.

Later that same day: Jonah has a calm moment and even, thank God, a smile.  My sweet, precious Boo.

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IMPORTANT NOTE TO PEOPLE WHO KNOW MY MOTHER:  PLEASE do not call her.  E-mail or call me instead, if you want more information or are concerned about any of us.  Thank you. 

I found this book after reaching a new level of desperation about Jonah, as he has become steadily more and more aggressive over the past several months.   I suppose that’s why I haven’t written much — there’s not a whole lot of good to share, and I needed time to process what’s going on.  The theories regarding his violent aggressions are few and help us none at all ~ puberty hormones, changes in his classroom at the Anderson Center for Autism, God knows what.  As usual there seems to be no reason for the outbursts; no antecedents to chart, no behaviors to indicate the storm is coming.

When we visit with him, we can sometimes see that he is acting what we call “squirrely” – a certain look in his eye or a ramping up of his OCD before an attack.  And on other occasions, even when he exhibits these things, he’s calm. Fine.  Then, like a lightning strike, he’s bolting, upon one of us – a wild, tameless version of a boy.  No empathy, no holds barred, fighting as if to maim an enemy.

A few weeks ago it was me he went for, from behind, grabbing hair at the crown of my head with one hand and my long ponytail in the other, yanking with all his might.  I pulled his hands down onto the top of my head and cried out for Andy, who was outside and came running.  Then two fingernails raked across one cheek, drawing blood.  I fell to my knees, bending my head back into his grasp, begging him to let go.  A sudden bite felt like he’d torn a chunk out of my back through my shirt, just below my shoulder.  Finally Andy got him face down on the floor and I attempted to hold on Jonah’s legs, my butt on his, my hands trying to hold his ankles to the ground, flailing kicks striking me hard, Andy getting head-butted and scratched, Jonah screaming.

The scratches and bite marks are fading as I type this.  I lost a few hunks of hair.  I am okay.  Jonah’s father gets the worst of it and carries marks and scars, both visibly and invisibly, most of the time.

This scenario is a good example of what he does at the Anderson Center when in this state of fury.  There they are required to let us know when there is a “2-person take-down” version of Jonah’s attacks.  I get an e-mail telling me dates and times. I belong to a Facebook group for parents of kids who are “severely autistic” and a lot of them told me about success with Thorazine – something I’d always thought would make you just one step above comatose – a drug we’d never even considered.  After a little research, I learned its effectiveness at controlling aggressions.  Because its half-life is so short, often it is administered a few times a day.  I suggested we try it, and called the school  to say so.  They’d just had a team meeting about Jonah and wanted our permission to try a slightly higher dose of Prozac first.  Andy and I reluctantly agreed.

On October 29th, the school called and told Andy that they were having a hard time controlling him at all.  Andy then called me, no doubt euphemizing whatever they’d said, and told me their new plan:  During these severe aggression occasions, they will call 911 for an ambulance to take Jonah to the Mid-Hudson Regional Hospital in Poughkeepsie.  I knew they were not being hyperbolic when they stated he was exhibiting severe aggression, and yet my heart sank.  Just minutes after this notification, the plan was implemented for the first time.  They called 911. An ambulance came. They restrained him, brought him to the ER.  After a while they let him out of the restraints only to find him as combative as before.  They gave him additional Risperdol.  Atavan.  Clonodine.  Then Thorazine.  After hours of this, poor Boo finally fell asleep.  Andy had left work early to be with him, and a super kind care worker from Jonah’s residence also stayed at the hospital.  By the time they discharged him, he’d spent nearly 12 hours in the ER.  Too many meds.  Too much too much.  There has to be a better solution.

Andy asked me not to drive down.  I’m here, he said. I’ve got this.  So, feeling both reluctance and relief, I didn’t go.  I was too much of a wreck to drive anyway; I’d fallen apart.  Luckily I was on my way to sit with 90-yer-old G, whom I visit at her daughter’s house several times a week.  The daughter doesn’t want G to be alone; I’m there to give her peace of mind so she can run errands or go out with friends.  An extra benefit for me is that G is like having a grandmother again – she is loving and kind, optimistic and fun.  We’re great friends now – I wept and sobbed that day while she consoled me in the quiet of the house.

I suppose I could be mad at God, but I’m mostly just so tired of having hope and then losing it again, over and over, like a carousel of emotions — inanimate horses cycling up & down ceaselessly.  I’m tired to my bones of despairing, of feeling helpless to save my son from whatever it is that’s making him behave this way.  If there were a person to blame, I’d hunt him down and kill him.  There are no answers, and the questions & medications keep piling up.

The very next day, October 30 and with our permission, they started Jonah on a 25mg dose/day of Thorazine.  At the same time I sprung into frantic action, reaching out to my fellow autism parents, calling our local chapter of the Autism Society of America, researching doctors and therapies and anything I could get my hands on to help my son.  On Halloween afternoon, while countless other parents dressed up their children and snapped happy photos, I sat at my computer and bookmarked anything I could find.

I found the book pictured at the beginning of this post and immediately downloaded it to my phone to read.

Hope for the Violently Aggressive Child by Dr. Ralph Ankenman

This blogger’s post has such a good summary that I will not repeat my own, only to say Dr. Ankenman’s theory seems sound and well researched.  His theory that violently aggressive children suffer from sudden adrenaline spikes usually encountered only in life-threatening situations would explain Jonah’s super-human strength as well as his sudden departure from himSelf to something wild, uncontrollable, and attacking.   It would seem that, of the two categories Dr. Ankenman talks about (Alpha and Beta), Jonah would be an Alpha:

Alpha Type [fight/no remorse]

Alpha adrenaline is tied to the “fight” response — the predator rage of, say, a lion attacking its prey. Children whose wild-eyed violence is triggered by alpha adrenaline seldom show any remorse.  Sometimes, too, the rush of alpha adrenaline erases any memory of their blinding rage.

Then I vetted him online, finding that he is no quack, he’s 81 years old, has been a doctor for 50+ years, and is indeed recommended highly by those who have seen him.  So I called his office in Ohio, (937-766-5683) hoping the receptionist would perhaps take down my information and maybe he’d call me back, even though Jonah wasn’t a patient.

He answered the phone himself (a huge shock to me) and we talked for about 20 minutes.  He wanted to speak to the social worker or doctor at Anderson to determine whether Jonah would be a good candidate for off-label adrenaline blocking therapy.  He said that sometimes simply lowering a child’s blood pressure and/or heart rate could mitigate the aggressions.  And he patiently listened to my story.  He was careful to caution that if Jonah did not have a high heart rate or blood pressure, it could be dangerous to lower it – hence the importance of researching both his resting heart rate/blood pressure and that taken during an aggression.  I thanked him for his kindness and felt hope again for the first time since researching.

Though I have signed a release for the folks at Anderson to speak to Dr. Ankenman, they haven’t met yet to do so, and it doesn’t seem Jonah’s got high blood pressure, nor is his heart rate tachycardic.  I’m not sure what this means in terms of whether or not Jonah’s aggressions could be treated with adrenaline therapy — perhaps his heart rate and blood pressure have been changed by his other medications, thus masking symptoms which would indicate an adrenaline rush.  I don’t know, but I’m still going to investigate.

I’m also finding a lot out there about natural remedies and possible causes, which of course I am on board with — the more innocuous the better.  I hate doing the dance of drugs with Jonah, trying one thing and then the next.  Andy and I never medicated Jonah at all until he was 8 and we absolutely had to – but I have learned never to hold judgement on others for whatever they have done to help their children.  But during my research I found, for example, this article and this video, both of which gave me some hope.

We did have a good visit on November 1st, on day 4 of the very low dose of Thorazine; he was gentle and calm but alert as well. He said two new phrases (“turn music down please” & “mama and daddy”) plus he made many different choices which broke from his routine.  Here he is following daddy’s instructions for what numbers to press on the microwave.

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Since then, though, Jonah has continued to aggress and has been back to the hospital.  His dosage of Thorazine has been raised to 25mg 3 times a day.  My instinct is to wean him off Prozac and Tenex and increase the Thorazine (from what I understand, most patients take 250mg/day). But I need to do more research, talk to other doctors.  Fellow parents.  More people.  Informed pharmacists.

If you are reading this and have any information that could help us, please let me know; I am grateful for any helpful input.  And if you hear your own child in Jonah’s story, please reach out to me so we can share ideas.

I know I am not alone – and neither are you.

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