Feeds:
Posts
Comments

Archive for the ‘Anderson School’ Category

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.

Read Full Post »

Back in the day, Jonah adored the movie Willie Wonka and the Chocolate Factory.  That’s not exactly accurate, either, because what he really loved was one scene. You know the one, near the end where Grandpa Joe and Mr. Wonka are screaming at one another…

Mr. Wonka: You STOLE fizzy lifting drinks!  You bumped into the ceiling, which now has to be washed, and sterilized, so you get NOTHING!  You lose! Good day, sir!

Grandpa Joe: You’re a crook!  You’re a cheat, and a swindler – that’s what you are!  How could you do a thing like this?  Build up a little boy’s hopes and then smash all his dreams to pieces?!!  YOU’RE AN INHUMAN MONSTER!

Mr. Wonka: I SAID GOOD DAY!!

For whatever the reason this absolutely smashed Boo’s funny bone.  He’d giggle and laugh and sometimes almost literally shriek with joy.

More this he would ask, and I’d have to rewind back to the beginning of that scene and play it again, usually 10 or 15 times in a row.  We watched it together so often that I began to dream of sterilized ceilings, inhuman monsters, and dreams smashed to pieces.

I’m not sure when it happened (because of this blog I could look back and pinpoint it), but for a long time now his little joys and interests, like the Willie Wonka scene, have waned and all but disappeared – replaced by a devotion to car ride alone:  mama in the front.

But two weeks ago when Andy and I drove to pick him up, he first (as always) greeted us with music on? and then, after just one car ride (an unvaried and specific loop), requested go back to ‘partment?

Surprised but happy, we drove him to Andy’s place, where grandma was waiting with Jonah’s favorite foods.  Once inside, he almost immediately attacked Andy, ripping yet another shirt and biting him on the wrist, drawing blood.  Andy got him down on the floor and tried to keep him still, while I held Boo’s legs so he couldn’t back-kick Andy in the kidneys.  We are strangely quiet during all of this, even Jonah. The only sounds are Jonah kicking and hitting us or the floor.  We’re grown used to it, and we’ve come to believe that if we can just get one attack out of the way, Boo will be okay.  Sometimes even really sweet and especially happy.

Sure enough, Jonah calmed down and after that he was fine.  Better than fine.

Train on computer? he said. I was floored.  He hasn’t asked to watch trains in what feels like years.  So, as small a thing as it sounds, I was thrilled to see a spark of interest in something besides car ride.  So I set him up on YouTube, typed in railfanner, and Presto Change-o, my train-loving Boo is back, staring with rapt interest at the coming and going of the endless speeding cars.

img_20160904_110301842

And after a while, just as amazingly, he looked up at me and asked Oopma Oopma? – which is always how he requested the scene from Willie Wonka.  And so once again I happily obliged, the scene eliciting the same smiles and giggles in which we all once rejoiced.

img_20160904_110817357

The next day at school, Jonah went after a staff member in the residence who did his best to restrain him safely, but Boo ended up hitting his face on his dresser and being brought to the hospital, coming back with a few stitches in his lip and a swollen black eye.  We are grateful to the caregivers who stayed with him, keeping him calm, safe, and occupied, until he could go back to his residence.

By our next visit the swelling had gone down and Jonah was his usual happy self.  He asked for train on computer again and even handed me his Jungle Book Disney movie to play.  So I set it up for him and watched him wait patiently on the floor, where he threw down a little yoga move (they teach the kids simple poses in school but I’d never seen him do one spontaneously)

img_20160911_105826536

…and settled down to watch the movie – nearly 30 minutes of it! – before declaring all done Jungle Book.

img_20160911_110425529

No aggressions that day.  None.  Not sure when the last time that’s happened, either.

I type ad nauseam of hope, and despair, and the tiring, endless cycle of the two, but a constant thread through both is change, always change – and growth, and learning, and steps forward.

There is.  Thank God there is.  Always there is something sweet to savor, and I am evergrateful.

Read Full Post »

So my new friend – we’ll call her Emily – is on the autism spectrum and, after knowing me for a month or so, thinks I am too.

Initially I dismissed her clinical, off-the-cuff diagnosis.  Dude, I am definitely not on the spectrum.  Andy, maybe.  Not me.  But then she stated her case, and I gotta admit it’s pretty good…the idea being that Asperger peeps tend to be hyper-interested in a chosen few topics, accumulating a great heapshit of knowledge and sharing said knowledge at every available opportunity.

Hmmmm let’s see.  Me and Laura Ingalls Wilder (on February 7, 2017 it will be her 150th birthday).  Me and Elfquest (Just today I tweeted my admiration for Wendy Pini’s artwork –and, um, yeah.  Their logo is my tattoo).  Me and Guster (I’ve seen them more times than the Grateful Dead.  Which is a lot).  On and on I can inform you about any of these.  In minute detail.  Joyfully!

And that sometimes people on the spectrum have difficulty applying appropriate filters to the world – both when taking in, and spitting out, information.

My recent freak out over that nasty comment.  The necessity of a code word inside my head to silence myself:  “SUA” (Shut Up, Amy).  All the endless ways I’ve made a verbal ass out of myself, geeked out, and otherwise toe-tasted open mouth, insert foot style.

Then, too, autistics typically love routine and order, lists, details, patterns…and can become micro-focused, lost in thoughts or music or art.   It seemed the more I researched manifestations of high-functioning autism, the more I saw myself..

…and the way I know everyone’s birthday and, for years, carefully noted them all on the calendar during late December for timely card-sending the following year.   Those pattern recognition questions on IQ tests, always way easy for me.  And how the Catholic Mass was a soothing ritual from which, as a child, I damn near astral projected. 

The way I love beaded jewelry, crafting the very beads themselves from paper, compartmentalized containers separating them by size and color.  And how I alphabetize my books by author, happy to simply regard them in rows upon neatly lined-up shelves.  Delighting in dates like pi day or May 6, 1978 at thirty-four minutes past noon:  12345678.  

The way music pulls from me emotion so strong I weep.  How, as a youngster in the 70s, my dad washed the car by hand while streams of water collected at the bottom of the driveway into a single little river – and how I followed that little river’s venture down the street to the fascinating storm drain. 

Hell, the way I’m constructed this very blog post with its carefully inserted links to songs, photography, artwork, and information you don’t care about.

Of course it really doesn’t matter at this point in my life whether I am on the autism spectrum or if I’m just assigning meaning to the random.  I guess I just find it interesting that, though I’m no spring chicken,  there are still these kinds of surprises about myself – and it was an eye-opening experience to hear how Emily came to her conclusions.

Either way, beneath all my rambling is the fifth anniversary of Boo’s life at Anderson.  Five years ago today we packed up Andy’s car and drove him away from the house where I sit and type this.  The house I’ve never, ever, not even once brought him back to see, though we’ve driven on the road two streets down in order to go see train.  I just can’t hear his little voice ask for “home?” again.  And anyway I don’t want him to remember, even though he probably does, clearly enough – hell, the kid remembers babysitters he hasn’t seen in half his life, randomly asking for them by name.   For whatever the reason, this 5-year anniversary bothered me more the other day than it does right now.

In so many ways he’s a wonder, my Jonah Russ.  I’m making him a music mix, in part based on reader recommendations, and will be taking bets when it’s done as to which tracks he settles on and subsequently asks for.

Feel free to continue with song recommendations; Jonah will listen to anything at all for at least a few seconds, anyway.  Based on this information, you’d think the song would need a really catchy intro to spark his interest, but his auditory preferences defy logic in this way as in many others.

I do think Andy’s mother is on to something with her suggestion of Mockingbird by Carly Simon and James Taylor.  And I’m definitely including George Thoroughgood’s I Drink Alone, if only for the ragin’ guitar intro.  I’ve also been introduced to new (to me) songs.  For instance, I’d never even once heard Brother Love’s Traveling Salvation Show.  And though my love of oldies + a penchant for Family Guy introduced me long ago to Surfin’ Bird, when performed by the Ramones it’s a messier, more Jonah-esque song.

This will entertain me for the next few days or weeks – however long it takes.

I’ve got time…

Read Full Post »

In five days, on August 16, it will be the fifth anniversary of Jonah’s departure from home.

That’s more than a third of his innocent little life, and I sit here and type this through a stormy mess of emotions.

For some reason that one comment from the other day echoes in my head, over and over.   I can’t be bothered to parent.   I can’t be bothered to parent.   I can say “haters gonna hate” and try to brush it off, but the troll’s words have gotten inside me, wringing my heart, making it pound pound pound in my throat.  I kicked my son out.  I can’t be bothered to parent.  The words are not true and I want to stop hearing them but I don’t know how.  I heavily edited my “about” page to more clearly define why we had to send Jonah away, and even as I wrote the new copy I asked myself why I felt the need to justify our actions.

There are many answers to that but the most important answer, I suppose, is to educate.  The idea of residential care for individuals with autism is repellent, and I get that.  It’s important to know the why of it all, lest they judge not only me but all others in my situation, lest they misunderstand the reality of residential care in the 21st century.  Jonah’s school is not an “institution” – it’s a huge, gated, beautiful campus with individual houses and a school building.  The caregivers and teachers are phenomenal; they are Jonah’s best friends and companions, advocates and educators.  These aren’t justifications.  I do not need to justify what was not our choice.  We didn’t choose this.

Parents who place a child in residential care aren’t throwing their kid away, I assure you.  Because guess what?  Even if there were parents who wanted to “throw a child away,” the openings at these places are so valuable there wouldn’t be availability unless the child’s home school district deemed it absolutely necessary.  The school district pays for it (in New York State, anyway) and moneycoin is, of course, a huge determining factor.

I just wish I wasn’t so hypersensitive. Or maybe it’s not that.  Maybe I’ve slowly developed an invisible shield in order to move forward through life and when trolls knock, the shield is shaken, endangered, a hole poked through, the feelings rushing in, too many too much too painful too real.   All the feelings I usually suppress.  Ignore.  Internalize – until I am, as I’ve described before, bow-string tight with bones gone brittle, shoulders hitched up, breath after breath after breath held…suspended…each new breath a hesitant, unwilling step into more future.

For five years I have lived this bizarre life of mother-not-mothering.  For five years I’ve spent most of my energy running away from how it feels never to watch Jonah sleep…how it feels never to be there when he awakens….never to know what it is to raise him.  It’s the most helpless kind of helpless.  I suppose my mind has created its own protective pathway to enable me to live this way.  I imagine my heart’s new primary purpose is to forget all the days we spent together, and what it was to shape his Self, and how I fell in love with his role in my life as my Boo.

I don’t know anyone who is in my situation, with their only child living in a residential school for autism, except Andy.  But we don’t talk about it, and so that most helpless kind of helpless is a lonely kind as well.  From a singular perspective I attempt to tell our tale, and like as not I speak a language so foreign it’s lost, dismissed, or plain old misunderstood by some people.

And just like that I’m off to find the Animals song, link to it, and look up the lyrics.  Is it schizophrenic thinking to feel how those lyrics apply to me?  To type the words out in paragraph form because I identify?

I only know this diversion serves as vacation from all the other crap I’m always on about.

“Sometimes I feel a little mad.  But don’t you know that no one alive can always be an angel?  When things go wrong I seem to be bad, but I’m just a soul whose intentions are good.  Sometimes I’m so carefree, with a joy that’s hard to hide, and sometimes it seems that all I have to do is worry, then you’re bound to see my other side.  But I’m just a soul whose intentions are good; oh Lord, please don’t let me be misunderstood.”

Why care if I’m misunderstood?  Why react so viscerally to the critic or the cruel?

Either way, I’ve been hibernating and closed off.  My mental energy is always working to stave off thinking things I don’t want to think.  I sleep and I sleep.  One day this week I came home from work and took a nap, only waking to eat before going to bed for the night.  I’m making up for those sleepless nights with Boo, back when I was a mothering-mother.

Jonah’s school called me today to join a conference call and approve a proposed increase in his dosage of Clozaril, since the drug is helping lessen the frequency of his aggressions but it’s not taking them away.  We talked about how he’s refusing to go to school (though they always get him there by 10am or so) and then I asked if anyone there had seen Jonah today.  One person had, in the classroom, and she described how he was making a great racket of noise.  He also had a behavior management at his residence this morning.  They didn’t disclose the severity of the behavior and I didn’t ask.

It’s difficult to remember a time when I did not embrace ignorance.

I guess maybe, well, five years ago.

This is another one of those blog entries I nearly almost always type with fingers slamming-hammer-quick on the keys, stream of conscious unthinking – and then delete.  But I think I’ll publish this one.

If I go away for another while, however long, I wanted to tell why.

Read Full Post »

11949356_442952469226268_364236211503973510_n

Got a nasty comment on my last post – the self-righteous Kate.  As much as I would like to defend myself against her, and those who imply (or directly state) that I am a bad and unloving mother, a bigger part of me shrugs – albeit sadly.  Why defend myself against someone who has obviously already made up her mind about me?   When willful ignorance meets judgemental cruelty, the result is almost comical.  If this person had read the entries leading up to our placing Jonah at Anderson, she would hear how it very damn near killed us to do it.  And yeah, I suppose I could just delete those kind of comments before anyone sees them, but that would sugarcoat a blog that’s intended to be “sans sugar. ”

I really appreciate those of you who bristle on my behalf (and on behalf of everyone like me whose life is all too easy to judge).  Your advice is gentle, your kindness is a cushion, and your support means more than you know.   Words can and do wound, but likewise they can heal.  So thank you for writing all those healing things to me.

As for Boo, he had a pretty good week.  He’s ravenous as usual, and his new kick is to put lettuce on grilled cheese sandwiches.  In the grand scheme of possibilities, I suppose it isn’t all that weird.  I wish he’d slow down and chew better, though.  He often eats so fast he ends up gagging.

We did some singing on our last car ride.  Jonah’s into the Chainsmokers and all kinds of other music.  Lately he’s been asking for a CD of electronica my friend Gina made in 2000.  It’s called Oracle of the Silent Mind; she sampled everything from Bugs Bunny to Beetejuice to make this opus.  I love that Boo loves and chooses it on his own accord, without prompting from his biased mama – and I’d love to share it with you, but I need to upload it to YouTube.

Other current Jonah favorites include a host of Top 40 selections (it seems Ryan Seacrest is the new Casey Kasum), some rap, and, on nearly every car ride, he requests the beloved immortal classic by Sonny and Cher, Gypsies, Tramps & Thieves.

Yeah, you read that right.

About a year ago I made a mix for him with lots of poppy dance music, like Groove is in the Heart and Gonna Make You Sweat (Everybody Dance Now).  I added Gypsies, Tramps & Thieves to the mix as a joke – and guess what?  It’s the only song on the whole damn mix he ever wants to hear.  “Mama mix?”  he asks to request this CD.  Then, “Number 12?” he adds, evidently jonesing for some Cher.  At the conclusion of the song, he states abruptly, “All done Mama mix,” and is on to the next request.  If he asks for radio but is displeased with the current offering on that station, he’ll ask “other radio?” and Andy will try another station.

I miss my Boo and am looking forward to tomorrow’s visit.  I’d like to try to make another mix for him, if only to find out which song he’ll enjoy the most.  Knowing his penchant for Gypsies, Tramps & Thieves, I’m tempted to seek out a similarly goofy tune – maybe Escape (The Piña Colada Song) or These Boots Are Made for Walkin.’

Feel free to comment with fun song suggestions.

Will Jonah like Put the Lime in the Coconut? In the Year 2525Lemon Tree?
There’s certainly no shortage of interesting and wacky music to try.

IMG_20160717_224312

Never stop listening to the music, Boo, whatever it may be.   I’ll be there tomorrow to share it with you.

Read Full Post »

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, 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.

peanuts-lucy-charlie-brown-football-2.jpg

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.

IMG_20160117_114931767_TOP

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.

Read Full Post »

h285_hope_violently_aggressive_child
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.

IMG_20151025_101923594

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.

Read Full Post »

« Newer Posts - Older Posts »

%d bloggers like this: