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I just hung up from a conversation with R, one of Jonah’s awesome behavioral specialists at Anderson. She called to tell me how Jonah’s been doing these past two days (since he’s been on the Clozaril. The dose is very small right now and they monitor his vitals more than once a day).

Then she says she’s about to walk down to the residence and enjoy some chocolate cake with Boo.  And he’s helping make the cake with one of his caregivers.

Then she says (I could actually hear her smiling) Jonah’s been calm and aggression-free for both days.  He was in a couple of managements today, but they were waaaaayyyy easier to handle.  No violence, just the ol’ swat motion.  In his classroom, he was happy.  He was laughing. Dancing.  Able to participate.

[After typing that I paused and read it again, and again, and then another time, allowing the words to be real – things that are actually happening.]

Do I sound too hopeful?

Does it matter?

I bask in this news.  Allow myself to envision what she described.  Drop my shoulders, un-clench my jaw.  Exhale.

Even if it’s all just for these two days — thank you, God.

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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 –

Christmas Day 2015

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, 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.

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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.

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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.

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.

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, but there is one relationship I seem to have lost without Death’s assistance.  I cannot bridge the gap, despite numerous phone calls (I leave messages) and cards (they’re not returned to sender so perhaps they are read), and despite my repeated apologies, attempts at positivity, and prayers.  There is simply no response at all.  I feel like I do with my son –this nagging, helpless feeling turned tingly and numb.  Perhaps I should quit.  My psychiatrist says it would not be a bad idea to quit.  Why chase after someone who does not want me in his life?  Still, I just want him to know I love him.  I’ve stopped calling, but maybe that’s why I keep sending the cards and letters.  It beats a bill, or a kick in the ass, I reckon.

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.

This is all I’ve got to say right now, damn it.

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”

~ Theodore Roosevelt

I want to start a whole new blog, but life gets in the way.  Then again that’s not true either – we have time for what we prioritize, whether we admit it or not.

To be sure, my life has gotten busier.  I’m working a couple different PT gigs now and I just accepted a big writing project from Pearson, which will throw the rest of August into deadline mode.  But that doesn’t excuse me from disappearing; one does hate a dead blog.

So I’ll be writing more here, with all the other work going on, even if the new blog(s) of mine must wait.  Boo does take top priority, after all.

Sigh.  It’s been a summer of disinterest for Jonah.  Against all reason, he seems to have lost his love for the pool, although I’d bet money he’d jump in the new swimming hole/waterfall area I found.

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I mourn the loss of my little boo-fish and hope he’s not gone for good.  I wish I could take Jonah to the ocean again.  He was in his element there, and at places like the waterfall at Hyuck Preserve.  Maybe he just wants a natural water source.

Nowadays, when my mom and I drive down to visit with him at Andy’s apartment, he mostly asks for car ride.  Even wanna take a bath has fallen to the dominant desire for car ride.  I understand; he doesn’t get a lot of car ride at his residential school, unless they’re taking the kids bowling or something – and then he has to share the backseat.  Hell, he won’t even share the backseat of the car with grandma unless we’re on the short ride from his residence to the apartment.  He wants mama in the front and no one in back.  Sometimes when he wants car ride he’ll simply say mama in the front?

We’ve learned his language well.  We know what he wants.

Car ride is a specific loop Andy invented which passes through and around some of Rhinebeck’s historical sites.  Usually at some point during the ride we stop at a gas station where we let Jonah out of the car, walk with him to the mini-mart inside, and allow him to choose a treat (like a bear claw or a donut).  The lady in there knows us now – she’s friendly, and nice to Boo.  He nearly always agonizes between two or more treats before deciding on something.  Then, once in a while, he’ll ask to go back to the apartment.  Most of the time he just wants another loop.

Andy gets Boo out to go for a walk, at least.  We like to take him to the park where daddy pushes him on his favorite swing for a while.  After that we walk down the path to a school’s athletic track, where I try in vain to get him to race me.  He walks and cavorts at his own pace.  Yet all of it is dependent on Boo’s caprice, which he makes perfectly clear each time.  No park!  No park!  he’ll say, and then we don’t even try.  It wouldn’t be worth it to force the issue.

My mom always brings delicious sandwiches on croissants.  Jonah will eat one, after a fashion, by pulling it apart, re-arranging the pieces, and putting it all back together Frankensandwich-style.  Yesterday he wanted a frozen dinner as well – chicken parm.  We indulged him.  He doesn’t eat anywhere near the whole thing, and his choice of “dipping sauce” might gross you out, but I did catch the experience on video.

The story of this day has a really shitty ending, so maybe I’ll just skip right to that part now and make it the middle.

When my mom and I left to go home, Andy and Jonah were having quiet time on the big blue bed.  It was a great image with which to leave them:  Jonah and his daddy lying together… Boo snuggling in for a hug.  Mama leans over for soft kisses, inhaling the top of his head.  Goodbye, precious boy.

Off my mom and I go to our innocent oblivion, arriving back in Albany, continuing on with our days, a warm feeling nestled inside us because Boo was so very happy and good.

Later Andy called me and filled me in on the rest of the afternoon.  When it was time to bring Jonah back to his residence, Andy promised him 2 car ride loops.  Evidently Jonah wasn’t counting because when Andy announced loop 2 was done, Boo insisted this was not the case.  And the manner in which he insisted involved a quick Houdini-esque harness escape followed by climbing toward the front of the car, grabbing Andy’s hair, and yanking it — hard.  I didn’t ask whether Andy at least had time to pull over first.

And I didn’t have to ask what happened next — I’ve seen it go down so many times I can watch it like a film inside my head.  Jonah pulls hair with Herculean strength.  A wrestling bout inevitably ensues – Andy trying to keep Jonah managed and safe while protecting himself.  Andy is still the undefeated champion in these matches, but he comes away bruised, sore, and likely disheartened.  We know Jonah doesn’t always love going back to his residence, and sometimes he cries, but there also have been times when he asks to go back.  It’s a crap shoot what you’re going to get on any given day.

When Andy tells me the story on the phone it’s with a calm voice, relating the facts in a tone that seems almost rehearsed.  Not fake or phony.  Just repeated too often, maybe.  Perhaps a little hardened by the time of it.  Frequency x the passing days/weeks/months = A dull and radical acceptance of a fact.

Like at the airport:  The moving sidewalk is coming to an end. 

On August 16th, Jonah will have been at the Anderson Center for Autism 4 years.  It’s still the best place for him to learn and grow and become as independent as possible.  We still know we did the right thing.

It’s just….well, not speaking for anyone but me, I discern a cognitive plateau in Boo.  I find it hard to stay encouraged that he’s gaining any ground.  His learning happens at a snail’s pace.  But maybe I’m off the mark.  I can write or call his teachers and behavioral management specialists, but I know the answer they’ll provide:  a gently euphemized, politically correct assessment of his progress and its intended path, however slowly, toward gaining skills and learning things sans aggression.  I should contact them anyway, and I will.  But not now.  Not today.

So here’s the middle of my story, now the end.  As you can tell I’m always photojournalizing our visits, with a lot of snapping pictures of Boo from the front seat of the car.  In this 3-photo sequence you get to see:

A.  The light bulb of a “naughty idea” come upon his face, igniting a smile

B.  His delight at this idea and the beginning of its execution:  snatch camera from mama

C.  The resulting photo he took of himself shortly thereafter

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I adore his laughter, his happy, the moments during which he is bright and eager and fun – hatching ideas, trying to pull one over on us.

We’ve learned to accept whatever comes because we love him.  Do I wish there were a “cure” tomorrow, a magic pill we could give Jonah to make him neurotypical?  I don’t know.  Should I wish that?

I’d prefer an à la carte menu.  Leave out the aggressions & add more interests (in anything besides car ride).  A steady, if slow, improvement in skills and cognitive abilities.  Some Calm.  If I want to get greedy (and since this is an imaginary scenario, what the hell), I also want him to be verbal. Conversational verbal.

I hear Iris Holland screaming in the movie Mr. Holland’s Opus, stamping her feet and slamming the table for emphasis:  I want to talk to my son!

But it’s a dumb game, even in pretend land.  I cannot pick and choose my child’s traits, and to do so would be morally questionable at best.  I just want him to be happy.  How many times have I repeated that sentence throughout this blog, I wonder?  How many times have I repeated myself about other things as well?

If I have, I suppose I should apologize — but it fits in well with the whole repetition theme, after all.

Here are extra pics of Boo to make up for lost time.

I’ll be back soon.

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^^^ With Grandma in the waiting room of the JRA doc.  She brings him a breakfast sandwich and a lem-a-made.

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^^^ Daddy helping him out of his harness.  Buzz cut!

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^^^ He loves grandma.  Grandma adores him!

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^^^

“Childhood is measured out by sounds and smells and sights, before the dark hour of reason grows.”

~ John Betjeman

Perhaps Jonah shall never know the dark hour of reason. I think that might be okay.

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Mama in the front.

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