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40 is the old age of youth, and 50 is the youth of old age.   ~ Unknown

I’ve always said that raising Jonah through all the violent aggressions broke Andy and me; it was impossible to come out the other end of it whole.  This autumn and winter marks 9 years since the worst of it, when first Andy, then I, went to Four Winds Mental Health Hospital.  Nearly a decade later I stared down the barrel of 50, feeling like I was breaking all over again.

There’s something definitively downhill about 50.  More than likely, I have felt as good as I’m going to feel and I’ve looked as good as I’m going to look.  The days and seasons come at me quickly, cycling faster with each passing year.  They leave me tired, despondent, and coping with fun new things like joint pain and hearing loss (I was a child of the 70s and 80s, and we liked our music LOUD).

But none of that is what broke me again.  Not really.  No single event or circumstance brought on the breakdown.  The truth is always more complicated.  And sometimes the thing that finally breaks you is the one you don’t want to admit…something you suspect wouldn’t have broken a stronger person.

Jonah is a source of joy, as if by magic.   It’s been a full year since he hit anyone.  There have been days of agitation and distress, but no aggression.  None.  The teacher in his new “high school” class sent me this beautiful picture of him just yesterday, loving on his caramel apple and beaming.

Every Friday there is good news from his teacher – these go backward in time…

This week Jonah was his happy, fun, lovable self. Today we made caramel apples and Jonah loved it.  I have this great picture of him. This week we did coin counting, handwriting, pumpkin decoration for a contest, recipe, grocery shopping, and made Halloween slime. 

Jonah was terrific this week. We read an interactive book today called An Old Lady Who Wasn’t Afraid of Anything and Jonah loved it. He was doing all the moves along with the book – I wish I got it on video. This week we did handwriting, recipe, learned about how to conduct a experiments, and read aloud with reading comprehension.

Jonah had another terrific week. This week there was a lot going on for Jonah, including appointments and changes in the schedule. Jonah took them extremely well.  He was a real trooper. This week in class we learned about fire safety, Halloween, did addition and counting, handwriting, and grocery shopping with recipe. 

Jonah had a tremendous week overall.  He was very attentive during the activities and lessons throughout the week, which I love to see. He has also been accepting many of the changes that are happening in the classroom. Words can’t describe how proud I am of him. He also has been listening to new songs at the end of the day like Maroon 5 memories and maps.  This week in school we learned about Halloween safety, handwriting, counting and addition, spiders and insects, and made guacamole for recipe.

And so you see our boy is bright and happy, learning things and having fun.  It’s all either of us ever really wanted.

But this summer I felt depression like a heavy stone I carried every day.  I hadn’t used social media in a few years, but remembered how fun the hashtag games were.  So I logged back into Twitter and stumbled across a group of people, led by a multi-millionaire, all working together to donate to Go Fund Me campaigns.  All trying to spread kindness.  I told the leader of the group I had been feeling suicidal before I found them – that they had done nothing less than restore my faith in humanity.  He even tweeted about it, though he didn’t identify me.  Many, many people came forward to support me on that thread, though no one knew who I was.  Concerned strangers tweeted their concern, love, and kind thoughts.  What an amazing feeling to be a part of this online family!

Every day, more and more people pleaded for help out of desperate situations.  I’m not wealthy, but I have enough – and some of these people clearly didn’t.  I gave what I could. Everyone seemed to want to help; soon we called ourselves a team.  It was fun and exciting for me to participate.  My heart was full of shared selflessness and genuine compassion.

I started to feel a little better.  Finally, I’d found a place were everyone pitched in to help others, no matter what anyone’s politics, religion, or any other label.  The team filled my days with purpose and a way to move forward, bolstered by a new support system of strangers from all over.

Then the group leader started giving away money randomly to everyone who re-tweeted his messages.  I noticed I rarely saw the winners commenting.  Wouldn’t they publicly (and loudly) thank him and the team?   And when the rare person did say that they won, it always seemed they were someone in dire need.  These “random giveaways” started to feel carefully chosen.  While searching his name one day, I noticed a post criticizing him.  I commented that I had been wondering myself if his “random” giveaways were really random.

When I logged on to twitter the next day, I was blocked from the leader’s page.  At first I was confused.  I contacted some other “team members” to ask what was going on.  One told me to be patient, that he was busy with other requests.  No, I responded.  I wasn’t there to ask.  I’d never asked for anything.

My protests fell on deaf ears.  In fact, most people didn’t answer me at all.  One told me I sure didn’t “win any points” with my comment asking him if contests were random.   I remember angrily responding that I wasn’t there to win points but to be philanthropic.  I was completely humiliated.   Being blocked felt like a massive betrayal, especially since all I had done was give to his campaigns.  The team that had been holding me afloat was suddenly gone.   I felt stupid and useless. I began to drown again.

I’m embarrassed and ashamed by how profoundly I felt the indifference and how distraught I became at the abandonment.  One day we’re all in the twitter feed professing our love for humanity and each other.  The next day, no one will talk to me and in fact I’m banned from participating in the collective philanthropic efforts and “random” giveaways.  All these people who cared so much when they first heard someone was suicidal…where were they now?

I found some small consolation in learning I wasn’t the only one.  A growing number of others are wondering what the hell is happening.  Many are telling their stories.  As it turns out, this rich guy seems to have a narcissistic personality, cult-leader mentality, and master plan for moneymaking which involves ingratiating behavior designed to gain followers and funnel people through a specific payment service.  And that’s really just the tip of the proverbial iceberg.

The part that really bothers me is all the team members struggling, hoping against hope he will help, worried they’ve been forgotten or that nobody cares.  Many actually deify him, say they would die for him – and now even contribute to an ambiguous legal defense fund, ostensibly against those who seek to “destroy” him.  Some of his followers have vowed to protect him against we “haters” who even, according to a recent post, are trying to attack Christmas itself.

He’s also using several simple, effective psychological techniques to weed out those who question anything.  This is going to sound very familiar to anyone involved in the team.

From online Psychology Degree info: 

Cults are attractive because they promote an illusion of comfort.

Those with low self-esteem are more likely to be persuaded by a cult environment.  New recruits are “love bombed.”

Cults maintain their power by promoting an “us vs. them” mentality.

Cult members often have no idea they’re in a cult.

I could go on and on with this.  There are other issues.  For example, anyone he blocks is ineligible to enter his giveaways (we don’t even see them happening) – and that’s illegal.  I filed a report with my state attorney general about this.  

Please make no mistake – I’m not out for revenge.  Other than psychologically, I wasn’t really hurt.  I don’t need money and can practice philanthropy on my own.  I am telling this story in the hopes that others will read it and come to understand what’s really happening.   There are charity review sites like Charity Navigator with details about vetted and registered 501c3 charities, where your donations are far better spent. 

If you’re on the team and seeking help, understand your chances of getting the help you need are very slim.  I invite you to DM me, or contact me here, and I will do the best I can to research genuine resources to help you. Whether you are trying to help or are looking for assistance, I  recommend Modest Needs, a 4-star registered non-profit where requests for emergency financial help are carefully vetted and then crowdfunded.  

Whatever the reason for his blocking me, some broken thing inside me broke more that day because of it.  My 50th birthday came and went with little fanfare.  I felt just as hopeless as before, only now I also felt deserted.

More sadness.  More disappointment,  More feeling worthless and self-pitying.  I was crying uncontrollably at random times during the day – crying at my desk at work and in my car while driving.  Crying myself to sleep – or, more accurately, laying awake crying at night.  I know this is pathetic.  And I hate that I know how pathetic it is.

I had a yearly physical on September 5th.  When I arrived, I couldn’t even make it through the check-in process without breaking down in tears.  In the exam room I sobbed to the doc and explained how awful I was feeling and why.  Gently, he suggested I go back to the hospital.  A revulsion of feeling washed over me, though I didn’t recognize it as relief until much later.  It’s as if I had been searching for permission to go back to the hospital, and he gave me that permission.  So I spent from September 5-13 in Four Winds Hospital.  Again.  And, just like the first time, it was the best thing I could have done.

People think of the mental hospital as somewhere you end up – a collection container for the insane.  While it is true that the stigma of mental health treatment is less awful than it was 9 years ago, the idea that hospitalization equals the bottom of the barrel is still alive and well.  There’s also still a stigma.  If you go to the loony bin, you must be crazy.  Crazy Amy.

Truth be told, just about everyone I know could use a week at Four Winds.  When you arrive you turn your phone in, bond with others there who are also suffering, and get therapy both one on one and in groups.  You just work on you.  That’s it.  It’s not easy, and God knows I could have better spent the $750 co-pay and precious days I had to take off from work, but I came out the other side with a better sense of how to move forward and a better understanding of myself.  I learned things like assertiveness skills, how to deal with intrusive thoughts, and how to recognize the tools co-dependent people use to control you:  Guilt. Anger. Gaslighting.  I emerged better equipped to live in this crazy-ass world that gets crazier by the day.

Good thing, too, for life was about to throw another couple curve balls.  But this post is already long, and I’m tired of bitching.  I’ll tell the tale later.  Mostly everything is better, I am feeling stronger, and my mind and heart are healthier.

I have more to be grateful for than upset about.  And being 50 isn’t so bad.  I feel younger looking than people who are 50 used to look, and I’m still healthy enough.  No more migraines, no aggressions from Boo, nobody trying to guide my giving.  Sometimes the lack of something is as valuable as the presence of something else.

We wish and hope and pray for this or that, but rarely do we glimpse the good in what isn’t happening.

Now I see it.  I see it all the time.

The comeback is always stronger than the setback.

“We circle chairs until the music stops
Until it ends you got to open up your heart…
Everybody’s got it hard
We’re built and then fall apart;
We’re all terrified.”  ~ Guster 

 

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My son is being transformed by time from boy to man, all while remaining uniquely innocent.  And, these days, happy.  He’s swimming a lot this summer and has just been moved to a “high school” class with older kids.  This is only his third classroom since starting school at Anderson in September of 2011.  I like that they transition the kids slowly, as is appropriate for each individual.

His first two teachers were wonderful, and this new teacher has worked as a teacher’s aide with Jonah in the past.  I’m grateful Jonah seems to be coming into his own.  He can stay at Anderson until he is 21, at which point he will graduate; as we move forward, we can all figure out what’s the next best step for his housing and happiness.

I feel more optimistic about my son’s future than I have since he went away.  His charts show only minor behaviors like noncompliance and swatting his hand, and their frequency is lower than ever.

One day earlier this summer, the kids in his class made tye-dye shirts.  Jonah had a blast and was not shy about showing off his creation.

He even has the shadow of a hipster beard and mustache, when his daddy or caregivers don’t shave him.  He doesn’t seem to care about facial hair one way or the other, though he had to have some small bumpy skin tags removed from his cheek and chin.

That’s the other thing — Jonah now has the ability to stay still long enough for the

laser procedure.  Before this, we’d have to put him under general anesthesia for everything – even a dental cleaning.

And at his glaucoma appointments, now they can do a special scanning eye exam because Jonah can keep his head in the machine for a minute or two at a time.

Last time we were at the glaucoma doc and the technician guy was asking Jonah to keep still, I wanted to say “dude, you have no idea you are witnessing a freaking miracle right here.”  This is the kid who has been banned from doc offices because of his out-of-control aggression.

Now he is redirectable.  He waits pretty damn patiently for the doctor, and follows instructions with our prompting.  The doc sometimes forgets Jonah does not know left and right, so I point or use something in the room as a reference.  Boo still tries to cheat when they bother to test his left eye.  He rocks and hums and asks for two hamburgers.  He cooperates with patience he never had before.  He laughs as he waits til he’s set free to walk back to the van.

Life is good for Jonah Russell.  Andy is not as optimistic as I am.  Yes, we’ve been fooled before into the lull of complacency when Boo is good – but he’s never been this good for this long, and I say he is growing and learning and better at processing his emotions.  I say this is a miracle, if only a highly personal one.

People all around me with kids Jonah’s age are dealing with so many parenting problems that I feel a whole new gratitude for what and who my child is – and is becoming.

More than meets the eye.

 

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Jonah April 2019

From Wikipedia: A legal guardian is a person who has the legal authority to care for the personal and property interests of another person, called a ward. Guardians are typically used in three situations: guardianship for an incapacitated senior, guardianship for a minor, and guardianship for developmentally disabled adults.

<– Here is Jonah’s most recent photo  He turned 17 on March 7th
(I can’t believe it either!), and so Andy and I started the process of obtaining legal guardianship of our Boo.  If we don’t do this, we lose the right to make decisions on his behalf once he turns 18.  As an adult in New York State, no other person is allowed to make a personal, medical or financial decision for you. 

You’d think it would be easy for parents to become guardians of their significantly developmentally disabled son.  It’s not like Jonah is on the borderline of normal intelligence or cognitive ability, and it’s not like we are distant relatives.  And yet they require all this paperwork, some notarized – addresses going back 28 freaking years for Andy, me, and anyone over 18 living with us.  No way I remember all the places I’ve lived since 1991, the year I graduated from college.  I had to guesstimate.  Hell, I lived in Thornwood, NY for a year and don’t even remember the name of my street.  

Then the lawyer tells me someone will most likely want to interview Jonah about it.  I felt equal parts surprised and amused.  “I highly encourage you to interview my son,” I told him.  I wish I could be there for that one.

Interviewer:  Jonah, do you think your parents should be able to make decisions for you?

Jonah:  Car ride?

Interviewer:  Now, Jonah, can you tell me what you would like to do when you leave the Anderson School for Autism?

Jonah: CAR RIDE!?

Maybe Jonah will kick his ass for good measure.

Just kidding.

Kinda.

The truth is Jonah still hasn’t even tried to kick anyone’s ass since I don’t know when.  Months.  Almost half a year, probably.  No hitting, no kicking, no head butts, no scratching, no hair pulling, no glasses snatching, no biting.

I didn’t know if I’d ever type those words.  I remember when we first brought Jonah to Anderson, a senior staff member told me sometimes these kids grow out of the aggression.  At the time I thought she was just being kind.  Now I think Jonah’s got a chance at more independence – or at least a less restrictive environment.

They even lowered Jonah’s dosage of Clozaril a little.

Of course he’s got a boatload of issues still.  He’s half blind, sluggish, and has warts & skin tags they’re in the process of removing.  He has some anxious days with crying jags punctuated by painful-sounding sobs.  Left to his own devices, he will sleep more often than not.  We can rarely decipher his words, and so we’ve memorized sounds he uses to indicate desires.  If he wants the radio station changed, for example, he used to say “other radio.”  This phrase has degenerated into “uhh-ay-oh.”  And so on.

Sometimes when we pick him up on Sunday he’ll have already gotten up to eat breakfast and gone back to bed again.  On these days, when we arrive we knock on his bedroom door.  Jonah sits up groggily and Andy or one of the house peeps helps him get dressed.   We pack him into the car, our sleepy-eyed Boo – complete with bedhead, all smelling like pancake syrup and body wash.  My heart swells with love for him.  I want to scoop him into my arms and rock him, but he’s no baby.  At 5’8″ he’s officially taller than me – bigger than me – and I don’t think he’s done growing.  I even wear his old sneakers.

I emailed his speech therapist about how we can’t understand him very well anymore.  She answered:

I have noticed that when Jonah is tired or unmotivated, his enunciation/intelligibility does go down. This does make it harder to understand what he is saying. Often times, I will ask him to either repeat what he said, ask him to speak louder, or to show me what he wants/needs. I will also tell him that I cannot understand him and that if he wants something, he needs to speak more clearly. This will often encourage him to speak up a bit. These are just different things that I have tried and that I have seen work with him. However, there are times when he’s not as motivated and does not care to communicate better- perhaps it’s the teenager in him.

Otherwise, Jonah is doing well and again I truly enjoy working with him. I am proud to see how far along he has come these past few years!

“It’s the teenager in him”  I loved that.  

And we’ll try her suggestions.  I know we are guilty of not asking enough of Boo.  We’re working on that.

It was a good Easter.  Andy drove Boo up to grandma’s house, where he sat at the table for a while (eating pizza, a chocolate bunny, and a piece of ham) – I couldn’t watch – and then we drove to the train tracks and saw a train – all successfully and without incident.

Jonah’s hair is the longest it’s ever been in his life.  He’s got thick, wavy brown locks I’d love to have on my own head.  My mom thinks it’s too long (when actually it isn’t much longer than the Beatles in 1964) and says he won’t comb it.  She’s probably right, but I think he looks handsome.

I show people this picture I took of him on Easter and they say I’m a great photographer.  What they don’t know, but I think should be obvious, is that I took 80 million photos of him to get a good one.

Doesn’t everyone do this?

Today when my mom and I drove down for our visit, Jonah was happy and hungry.  He asked for donut so we got him his favorite, sugared jelly, from the Dunkin’ Donuts drive thru.   All the while Andy’s scrolling through Sirius radio station by station and Jonah’s telling us uhh-ay-oh or on (if he wants it louder).  He has a fickle taste in music these days; just when you think you’ve got his preferences nailed, he’ll surprise you.

Today he disdained Public Enemy, his usual favorite, in favor of a funky disco tune.  Andy claims he even was digging some polka one day.  I wish I could find that hard to believe, but I know my son has picked some seriously weird songs for favorites.  I’m happy he likes music without the slightest care whether his choices are in any way cool, socially acceptable, or based on anything but caprice.  He just likes what he likes.

He wanted to nap at Andy’s apartment but when I asked if I could lie down with him the answer was no.  He did bestow a kiss and hug on both grandma and me, which was enough to make my day.

For those of you waiting for a boot update:

I found it.

Divinity made my missing boot re-appear, praise little baby Jason!

Actually, by then I’d already bought another pair I liked more, so the whole thing was a little anticlimactic.  The other boot was on my back porch, in the verrrrry bottom of a verrrrry big, tall box stuffed with Styrofoam and packaging paper.  I was breaking boxes down for recycling when I found it.

“Well I’ll be damned,” I said aloud, more to the boot than about it.

The Universe is Puck, playing games with us all.

Happy Sunday.

Spring is here!

 

 

<—  Me, Easter 1973.  Age 3 1/2

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On Thursday the 7th, I took time off work for Jonah’s quarterly glaucoma doc appointment.  Two Med Run Peeps drive him the 90 minutes up to Albany every time in the Anderson van; Jonah rides in the way way back, transported like His Majesty the Prince of Rhinebeck.  I was very much looking forward to seeing him.  It has been a long, long stretch of time since Boo has had an aggression.  Since maybe October.  I was hopeful he’d be glad to see me.

The stars were aligned this day.  It was Laura Ingalls Wilder’s 152nd birthday, the Med Run Peeps were being their awesome, caring, kind selves, and Jonah was cooperative and happy.  Silly and funny.  Amazingly good.

Even more so when you consider that, unlike most visits to this doc, we had to wait a while; they wanted to take a scan of Jonah’s eyes before he saw his regular doctor.  So we moved to an empty area of the waiting room, where geriatrics henceforth feared to tread – though those with vision watched us curiously and not unkindly.  Jonah laughed his brash, loud laugh, pacing up and down the row of empty chairs.  He hugged me and asked for more kiss? again and again.

My son is nearly a man.  In a photo, he sometimes looks like a regular kid who is 16-going-on-17.

In person, though, there is no mistaking him for a “normal” teenager.  His disability is as visible as if he were in a wheelchair, and to be honest I don’t mind that.  In general, people are more compassionate now.  When Jonah was very young – until he was 10 or 12, really, this was rarely the case.

Back then, to some, Andy and I were bad parents of an out-of-control kid.  Once, an autism-denier went so far as to comment that I should give him Jonah for a week and he’d “straighten him out.”  (I think his comment is still on that long-ago post).  I remember how tempting it was to let him try… just to sit back and watch Boo kick his ass.   If there is anything from those darkest days I miss, it’s the secret evil pleasure of watching Jonah attack a smug doctor who’d ignored my earnest warnings of severe aggression.

I talk about the pendulum swinging: aggressions and respite, hope and despair – our cyclic existence with no real patterns upon which to prepare for the next “season.”

Dare I pretend
to hope
to believe
Jonah’s aggressions have disappeared altogether?

Since autumn of 2010, I don’t think he’s ever gone this long without aggressing in some way against someone.  He still gets squirrely, and he’ll swat or “flinch,” as the school calls it, motioning his hand in a warning.  It’s the rattle of the snake, and yet nothing comes of it anymore.  Now it is an end unto itself.

His awesome teacher Sophia wrote me yesterday that he had zero flinches this week.  Not just zero aggressions. Zero flinches.  My hero zero.

I’m proud of my son.  I think he’s worked hard with the wonderful teachers & caregivers to learn how to manage his feelings.  Fred (Mr.) Rogers said he wanted to teach children that feelings are mention-able and manageable.  It may well be one of the most important lessons a person can learn.

The rest of Sophia’s email to me reads:  “This week we learned more about coins and bills, we celebrated the Chinese New Year, the Phases of the Moon, we did an experiment with Oreos to show the phases.  Jonah enjoyed the part where he got to eat the cookies!  We made a banana sushi roll today during Group OT and we also enjoyed a nice walk outside!”

I was so happy to hear about his week and know he spends time learning in ways that are fun and comfortable for him.  When he first arrives at the classroom, he gets under a beanbag chair and blanket for a while.  They recognize he needs to start his day this way and I appreciate that.

And so Jonah is well, and happy.

The rest of this post involves another disappearance – so if you’re here just for Jonah news, all done. 

Every day when I get home and don’t have to go out again, it is my custom to take off my winter ‘office work boots’ I wear nearly every day and place them next to the radiator in my bedroom.  So on that same day – Thursday, February 7, I came home from Jonah’s appointment and put the boots where I always put them.

That night I woke up at 1am mid-migraine, head pounding hard.  I immediately got out of bed and took the med that stops my migraines about 50% of the time.  Then I stumbled into the bathroom and, without turning on the terrible light which has become my nemesis, found a washcloth and ran very cold water over it.  I returned to bed and nearly started crying in despair for what I knew was likely coming:  the 24-36 hour marathon of puking, even the tiniest sip of water rejected; dehydration and retching causing my head pounding to worsen and the head pounding causing nausea, on and on in a nightmarish underworld where there is only pain and the desperate desire not to be in pain.  In those first minutes lying down with the cool cloth, I prayed.  I prayed the fervent, frantic prayer of one willing and ready to strike a deal with Divinity.  Please, please, let this migraine subside and I’ll do anything.  You can take anything from me. Just make it stop.

And lo, on this day in the year of our Lord twenty nineteen, the migraine stopped, blessedly subsiding into nothing – the pain retreating as if ordered to cease and desist.  I eased into unconsciousness before I could pray or even think my thanks.

The next day I awoke…

…and, as part of my every day morning routine, got dressed, reached for my boots…

And this is what I saw:

One boot.

I looked under the bed.  No boot.  In the closet.  No boot.  After a while I didn’t have time to look anymore so I found my old pair from last year and wore them instead, telling myself I’ll find the other one later.  After all, how hard can it be to find a knee-high boot?  Yes, I lost 3 books of holiday stamps after New Year’s, but those are stamps.  This is a freaking boot.

Only later that day did I realize I’d promised in my prayer the night before to give anything for the migraine to go away.

The only conclusion I can come to is God took my boot.

It is now the next day, Saturday, and my mother’s birthday (Happy Birthday Grandma, says Boo).  I have conducted a thorough search for the missing boot.  I have looked in ridiculous areas and places where no boot could ever hide.   As of this writing I have no explanation, and I’m trying not to think about it all too much, lest it freak me out completely.

If after my death I am deemed so wonderful as to be considered for sainthood, could this missing boot count as my required miracle?

The world may never know…but I’ll keep you posted if I find it.

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Jonah’s 15th birthday was Tuesday, March 7th.  He did really well at school – they had a little party for him, he had a big ice cream cake at his residence, and in general he’s been better behaviorally again.  I’ve been depressed, and off-the-charts anxious, and am figuring out new doctors and medications – hence my infrequent blog posts.  I don’t want to complain and rave about myself but I’ve been isolating from people and sleeping too much, struggling to wait for the springtime, hoping it brings me peace with its sunshine and warmth.  I am grateful I have a good job working for an organization that helps empower disabled people, which is kind of perfect for me.

One thing Andy and I have to do now is begin the process of identifying our hopes and goals for Jonah’s future, including adult placement options.  It’s overwhelming to consider – seems every time I get accustomed to one part of this journey, another comes along and sweeps the rug right from under my already unsteady legs.  I have a name and number to call and get us started.  They recommend beginning the process at age 15, even though individuals at the Anderson Center for Autism do not “age out” until they turn 21.  There’s a lot to it – we need to get things in place with social services, disability, ensuring we have guardianship, setting up a special needs trust, and more.  And under this new administration I feel Jonah is less protected, his services jeopardized.

I hope I’m wrong.

I’ll be back as I can with updates, and photos, and to share more than I am able to lately.

Happy Birthday, Boo!

 

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For a while I was a mother, the way other mothers are.

For nine and a half years.  I remember it.

I remember watching Jonah sleep, changing his diapers, helping him get ready for school, taking him to the park and home for dinner.  There were birthday parties here with family gatherings in our finished basement.  We played in the baby pool and Andy took us sledding.   I also remember how hard it was, how fucking frightening and relentlessly backbreaking our days became toward the end – and I sit here grateful for the stillness in which to type these words, I do.

But at the same time I feel a vicious, raging kind of helpless. When I get home from visiting my son, I’m angry.  I want to scream and moan and rave.  I slam my vacuum around the house, cleaning things just to feel some control over my environment.

There are things to say but I don’t want to say them, so I stay off the blog.  I don’t have any funny or engaging stories.   And when I read over these blog entries I make myself sick with all the whining and the wretchedness.  I wish I had better news, some anecdote to share.  I only have what I have, and I can only feel how it feels.

Things were looking pretty good on October 1 – they made Jonah Student of the Month, even, and his name and photo were on display in the front of the school.  I took a picture of the display case when I visited on Open House day, but I can’t find it now.  The school sent a certificate and a letter about how well he had been doing.  It was all really encouraging and cool.

They forgot to knock on wood when they said it, though, because it’s been all downhill from there.

Our visits with Jonah are worse.  I used to complain – recently, even – when he’d come running into Andy’s apartment and then just stand in front of the refrigerator, asking for whatever he felt like eating and scarfing it down before next asking for car ride.  Now car ride is all there is, and by that I mean we pick Jonah up at his residence and he says “no apahmen” and “no lunch” – and while my mom waits behind with whatever food she’s brought us for lunch, we drive the same loop over and over.

The best we can do to facilitate some sort of visit with my mother is to stop back at the apartment after every loop and try to bribe Boo to come inside.  Not bath nor Burger King is temptation enough – and forcing him would mean a huge aggression episode the likes of which none of us are willing to cause or endure.  And so we pause in the driveway and my mother comes out.  Sometimes Jonah will put the window down and we will prompt him to wave or say “Hi, Grandma” or parrot back whatever script we want my mother to hear.  Wish she could hear.  Thank you, grandma.  Thank you for ritually packing us all fresh sandwiches, chips and drinks every week.  Thank you for picking up mama to drive an hour and a half each way to sit in an empty apartment, visiting with me through a car window for a minute or two, because you love me so much you’ll do whatever you have to just to see me, hoping I’ll be happy or will want a kiss.

On Thanksgiving, Andy drove Jonah up to my mom’s house, just like he’s done every year for the past 6 Thanksgivings since Jonah’s been at Anderson.  Always Jonah loves grandma’s house.  He jumps out of the car and runs in, bursting through the door to pace around and survey his surroundings.

But not this year.  Even after that long car ride up here, he wouldn’t get out of the car.  My father arrived just as I was getting into Andy’s car to take Jonah for a ride to see train.  We called out the window that we’d be back, and my dad went inside to wait for us.  Jonah smiled, a big smile, when two trains came by, once we got to the Voorheesville tracks – but when we drove back to the house, Jonah still refused to come inside.  No grandma.  More car ride.  Awkwardly we all stood in the driveway, my father, my mother, and me – speaking to Jonah in turns and making sure Andy had all his Thanksgiving food my mother had prepared in Tupperware containers.

Andy and Jonah drove away, and my parents and I went back inside.  My mother and father tried valiantly to keep some conversation and normalcy in the day,  but I just sat there silent and crying, the tears coming against my will, hot and unchecked.  After just a short while I apologized and told them I couldn’t do it, I had to leave.  I drove home to eat my own portion of yummy Thanksgiving food and then, exhausted and sad, crawled into bed.

My mom and I didn’t drive down to see Boo again until today.  Again, Jonah just wanted car ride – only this time he got really sad and started crying as well – huge, gasping sobs.  I turned in my seat, gave him a clean blue t-shirt rag for his face, and held his hand in mine.  He didn’t resist.  He felt along the length of my hand with both of his, grasping my fingers, crying in earnest.

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I asked him to tell me what was wrong.  I asked him several times, in all different ways, hoping he’d offer a clue.  Was he in pain?  He never tells us when he is hurting, but he’d just had yet another laser operation a few days ago, to alleviate the pressure in his left eye.  It shouldn’t be hurting him today.  And he seemed fine when he first came out of his residence on the campus.

And so he wept, and I just held his hand.  Andy played some of his favorite music, and eventually Jonah calmed down enough to gently push my hand away and request Tom Pah-dee (Tom Petty), Public Enemy, and Prince, in that order.

After three trips and visits back to the apartment where grandma came out and said hello, I finally got out of the car, kissed Boo, and waved goodbye.  My mom and I drove home, mostly in silence, feeling how completely surreal can fill a car like heavy smoke.

What more can be taken away? Even as I ask myself the question I hear the answer. What if, one day, Jonah refuses to leave his residence for our visit?  What then?  They don’t allow visiting in the houses.  There’s a visitor’s center on campus with mock apartment set-ups that seem really nice – but Jonah’s never wanted to go there.  We tried it once and it was a disaster.  And anyway, even when he was going to the park or down to the dock, he still wanted his car ride and to get off campus first.  Can we visit him on one of the campus playgrounds?

Tomorrow I talk to the school district about the possibility of Jonah attending the Kennedy Krieger Institute for their short-term impatient program.  And I probably will call Jonah’s caseworker, too, about how home visits have been deteriorating.

Maybe they will have some ideas.  Me, I’m fresh out.  And done writing about it, for now.  If I do not post again before Christmas, I wish you all happy and blessed holidays, filled with joy and hope.

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On Tuesday, Jonah was taken back to the hospital, this time not only because of severe behaviors but also because he seemed to be struggling to poop and he looked pale and acted really lethargic.  When they called me, I decided to drive down.  I left work around 11am and when I got to the hospital in Poughkeepsie, Jonah was asleep under the covers with a pillow over his head.  All I could see of him were his sneakers, still on his feet, at the bottom of the bed.  He has three teachers in his classroom of 5, and one of them was there with him.

They had taken an x-ray of Jonah’s tummy and found impacted poop, so they woke him up and we coaxed him into drinking a seltzer-like laxative.  He was all sweaty from lying in his clothing under the covers and he looked at me in amazement.  “Car ride,” he croaked, more a statement than a question.  His teacher was awesome with him, helping to keep him calm and telling me how loved Jonah was at Anderson.  “I’m not just telling you that because you’re his mother,” he assured me.  Poor Boo was bored and confused, but after another hour or so he finally pooped and they let him go back to the residence.  I drove home in a daze.  Before I reached the house my car started to shake.  I couldn’t get the hood open to look at it, so I dropped it off at the shop.  Turns out they had to break it open to get in the car.  It was some crappy icing on my shitty cake.

Yesterday his main classroom teacher e-mailed me and was so kind.  She asked what she could do to help and if I had any questions, and she said Jonah had a good morning (and included two pictures to show me).  I am appreciative.  I am grateful.  I love that Jonah has teachers, specialists, therapists, direct care providers, and other workers who watch over him with such compassion and caring.  Were it not for all of them I could not do this at all.

Got the car back last night, and this morning Anderson held a meeting about Jonah with his behavioral specialist, his psych doctor, teachers, and nurse.  They called me to join the meeting and told me he was on his way back to the hospital for another psych evaluation after 12+ severe aggression incidents this morning.  And so this is hospital visit #3 since Monday, and it’s beginning to feel an awful lot like this time last year.

This doctor is a new one, and she asked me if I thought Jonah might be bi-polar.  “I tend to think there’s a co-morbidity with something,” I answered, “whether it be mental illness or seizure activity.  Something is going on.  There is never an antecedent.  You’ve charted every possible thing from bowel movements to times he eats and sleeps, for five years straight. There is no discernible pattern. ”

Her answer, as it has been before, is to raise his level of medication (Clozaril) while adding a prn of Klonopin  (as needed).  She suggested the possibility of adding Lithium, but doesn’t want to do that right away.

I have read (and I really appreciate) all your comments and well wishes.  I will try to come back to FB and re-join the Extreme Parents group so I can gather info and exchange ideas with other parents who’ve had experience with Kennedy Krieger and severe autism with aggression.  Andy and I are working through disagreements about what to do here.  Sending Jonah to KK would be a huge thing.  Just the thought of transporting him there is a seemingly insurmountable obstacle.  We want to make sure we are doing what is best for Jonah, both in the short and the long run.

I don’t want to go through what we did last year again. But it looks like that’s what’s fucking happening and once again we find ourselves in the frustrating position of having exhausted all ideas and resources.

When I reach out to the “experts” I find and they start asking me things like “What are the specific behaviors and when do they most likely occur?” I want to bang my head against the wall – not because I do not appreciate the attempt to help us but because people never get how far beyond the beyond we are at this point – how we are breaking new ground with this child and his behavioral (and physical) health.

How we’ve already tried that.  And yes, we’ve already looked at that.  And then there is silence, because nobody can chart us a path through this kind of journey, once they realize we truly are in a territory they have neither seen nor can understand.

We have to do it ourselves, and it’s scaring me to death.

I have been going to work and coming home and going to bed.  It’s like I’m a device on low battery that you’ve got to use as little as possible to preserve its life.  I am angry and I feel helpless.  I’m shaky and sad and frustrated and pissy.  I’ve been depressed lately anyway – I usually am this time of year – and I’ve thought that Jonah’s behavioral crises at the same time last year and this year might be something seasonal.  But mostly I’m staving off panic, a deep and unwavering fear.  There is no afraid of.  There is only the being afraid and the trying not to be afraid.

A waking life of fighting the fear, and a grateful yielding to sleep.

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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.

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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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