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Archive for the ‘Anderson School’ Category

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…

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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.

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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.

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

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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, 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.

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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.

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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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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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IMG_20150527_153117207 Remember when I said I was going to get through the winter  without using lights and my thermostat set as low as I could safely manage it?  Well, damnit, I did it.  And now, for further fun and self-flagellation, I’m attempting to go all summer without putting the A/C unit in the window.  It was 82 degrees in my house yesterday.

It all involves very little clothing, drapes closed, and a big fan.

I have a pleasantly cool, finished basement where my two new kitties and I can escape (Almanzo never returned, and I waited until my heart was ready to take in another animal companion).  The cats are 3 years old and had been surrendered at the Mohawk-Hudson Humane Society a week before.  I didn’t really want two, but they are sisters and I didn’t want to separate them.  I’ve named them Laura Bess and Gracie – after guess who?

They are very nearly identical….white with graffiti-sprayed gray atop their heads.  I put a collar on Gracie just to tell them apart, though Gracie’s bigger and usually now I can tell who is who.

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Laura Ingalls Wilder was a little thing, after all — just 4’11”.

And what of Boo?  He is himself.  He is navigating his world the best he can, and we along with him.  A sudden, explosive outburst at his father – when Andy told me on the phone, I nearly threw up.   Jonah attacking him, causing scratches, bruises, bleeding.  Chunks of hair pulled out.   I wasn’t there and I don’t even know exactly what happened, but I’ve seen it all enough to imagine…

…and I don’t want to imagine and I never want to have that happen to anyone again and there isn’t a damn thing any of us can do about it.

I spend a lot of time in the woods.  A lot of time alone.

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I remain afraid of my son.  I’d love to watch him swim, watch him sleep again.  I never get to watch him sleep.  Strange, the pieces of my mama-life I miss the most.  Small memories.  Momentpieces.

Everything is as it is.  I am beginning a meditation practice with Tim, daily, though he is in Indiana and I here.  I have lost my practice and need to regain the refreshing supply of mindfulness which comes from sitting in silence and outside of time.   Most recently we visited for nearly 2 1/2 weeks together both in Bloomington, Indiana (where he lives) and San Diego, California (where he is from, and where we stayed – where I got to meet his mom and her husband, Chris).  Here are some photos, of us — and of course, of Boo.

Love on the Pacific Coast

Love on the Pacific Coast

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putting on his socks and shoes

putting on his socks and shoes

happy on car-ride

And much silliness:

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“The best things in life are silly.”

~ Scott Adams

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