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Posts Tagged ‘Autism and aggression’

My mom seeks out comfortable, high-quality shoes for Jonah in an old-school, determined way.  I think it’s her generation (the one that came after the Greatest Generation and before the Baby Boomers).  When I was little, she always took me to Stride Rite and had my feet measured carefully.

Her parents were big on shoes, too.  We did without some things but we never did without good shoes, she tells me.

And so Jonah has always had the finest footwear.  Until he got aggressive, we brought him to the Stride Rite in Stuyvesant Plaza, always planning the time of day so as to be the only ones in the store, if possible.  He paced in circles and we got him to stop briefly in that silver measuring thingee with the slider so they could get his size right.  The salespeople were always kind, and my spoiled Boo had a never-ending supply of fine footwear due to my mother’s diligence and my father’s financial backing.

None of that has changed. Once we couldn’t take him to stores anymore, grandma got creative, tracing his feet on paper, then purchasing her very own silver measuring thingee.  I’ve got to give props to these slip-on sneaker/shoes she found, because he loves them.  They’re easy, and comfortable, and so we keep buying them.

She just ordered him two new pair and instructed me to donate his old ones.  When I collected them at his residence, though, they looked a little too ratty to donate – and yet not destroyed enough to throw away.  Out of curiosity I tried them on, and they fit me perfectly.  So now they’re my house shoes.   I am literally walking in my son’s shoes.  I like it.  But damn. You know you’re getting old when you start telling people these are my house shoes.

When I was pregnant I remember thinking I’ll be 50 when my child is 18, and how perfect it seemed.  My fledgling trying his wings as an adult, me trying my wings as an empty nester.  Now 50 is less than two years away.  18 is too.  And none of what I expected has come to pass.  He’d be a junior in high school now, but he’s trying his wings in a far different way, and my empty nester time came 9 years too early.

Because 18 is coming it means we need to apply for guardianship so we can make medical, educational, housing, and other decisions for Boo.  We have all this paperwork they gave us about what we need to do.  I also had a free consultation with a lawyer about a special needs trust, but it’s a few thousand dollars just to set up.  We might be able to use some of his SSI money to save toward it; I need to look into that.

Jonah’s been doing great.  His teacher sends me notes and the residence tells us stories, and I think he’s down to one takedown a month or so .  Let me type that again.  I want to type it again.  ONE takedown a MONTH.  This from a child who was up to 12 take-downs a DAY (and, really, after that, so many that they were like one continuous aggression with brief interludes of Jonah catching his breath).  I’m very grateful, even though we’ve had to trade away some abilities to mitigate his aggressions.  He definitely is not enunciating like he did when he was much younger, for instance, and I think he’s lost some of the interests he used to have.

Then there’s a voice in my head that says well, he is a teenager, after all.  Don’t all 16-year-olds mumble and nap and listen to rap?  I’ve stopped trying to guess what’s what and why and how.  There’s no map for this path.  We’re bushwhacking through, just as always.

It’s becoming increasingly apparent Jonah won’t be able to live independently as an adult.  At all.  It’s not so much a surprise as a sigh.  It will be another new normal.

Oh, and I have photos to share.  Jonah’s now as tall as Andy and me (we’re all 5’7″ for this short while).  He slouches, though, so I think he might be even taller now.

20180325_101115Wearing his Public Enemy shirt my friend Kristin got him.  His favorite album is  It Takes A Nation of Millions to Hold us Back, particularly the track Bring the Noise.

I’m too black.  Too strong, he says.

Fight the power, white boy.

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Here’s Jonah with my dad on Easter Sunday…and two more from

the same day…

 

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He’s been learning some simple piano chords.  Nothing amazing or even melodic, mind you, but chords nonetheless.

This is grandma’s living room, and yes – that’s a genuine signed and numbered Thomas Kinkade in the background on the wall.  (I’m not what you’d call a fan).  She got #666, and I tease her about that.

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Next to Grandma, Jonah looks like a basketball star.

Easter was good.  As good as it could be, considering our family lost my beloved Aunt Sue to a sudden stroke in late February.  Our family still sits stunned and disbelieving.  In shock.  She may well have been the best of us, and the first of her generation to pass away on my mom’s side of the family.

I hadn’t planned to ask if I could speak at her funeral but I did end up writing something and sharing it – a letter to her, thanking her for being my sweet Aunt Sue.  I’m grateful I got the chance to pay her tribute.   Now my Uncle John breathes in and out and gets through day by day and minute by minute, the long exhausting slog through grief that comes first like flooding water drowning you, then in waves crashing steadily at intervals, then like random jolts.  Sparks.  Sharp pricks of pins. Time softens the blows but never quickly enough.  The pain pulls your very heartbeat out of rhythm – thumping, jumping, scared.  It can rip through your stomach like flu and squeeze your lungs so you’re gasping, fish out of water flopping on the floor.  Everything upside down.  No answer, no solution, no matter what.  The panic and the desperation.

This life is messy.  Joyful, and sometimes agonizing.  Tiring and boring and too fast and very funny.  Recently another younger cousin happily announced she is pregnant, and so the wheel turns.

I have hope now with consistency, for the pendulum I’ve blogged about so often has slowed to a very slow swing.  I’m resting on it as on a hammock, still and settled, for as long as I can.  I have hope, and it feels just like the spring we’re finally beginning to see here in Upstate NY.

Boo says hello.  And Onward ho…

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h285_hope_violently_aggressive_child
IMPORTANT NOTE TO PEOPLE WHO KNOW MY MOTHER:  PLEASE do not call her.  E-mail or call me instead, if you want more information or are concerned about any of us.  Thank you. 

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

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

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

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

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

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

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

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

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

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

Hope for the Violently Aggressive Child by Dr. Ralph Ankenman

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

Alpha Type [fight/no remorse]

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

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

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

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

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

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

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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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Love numbers.  Hate  math.  All dates this week are palindromes!

First there wasn’t anything to tell you.  One Saturday I went with my mom as usual but felt headache-sick on the way and migraine-sick by the time we arrived.  I walked in the door and went straight to big blue bed, mumbling something to my son and Andy on the way.  So that kind of sucked.

The only good part was when I heard Jonah say want mama? and a few moments later he came into the darkened bedroom, lay down on his side next to me, facing me, and slid his thumb into his mouth, his deep, innocent eyes looking straight into mine.  Then he reached out and ran his fingers through my hair, so gently I didn’t recognize the touch.

Other things happening seem mundane or oft-covered before.  I’m beginning to repeat myself.  My blog posts are no longer always the cathartic necessities they were when Jonah lived with us.

The aggression pendulum still swinging slightly.  Me forgetting my camera.  My mother and I arguing politics during the car rides back and forth.  Tuna fish sandwich week & turkey, ham, and cheese week.  The baths and Jonah’s latest favorite DVD or CD.  Don’t believe the hype.

He’s on school vacation this week.  Here’s hoping for the best and happiest Boo there can be.

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I’ve been sick, finally feeling a little better.  There are major changes in my house.  Almost overnight M decided he’d had enough of being a couch potato.  He joined a gym and goes every day at 5am.  He bought all kinds of vegetables, fruit, wheat germ, seltzer, salmon, low-fat milk, nuts and berries and healthy shit.  So I’m trying to get on board to encourage and support him by exercising, doing weights, and eating well, but I still sneak a coke once a day or two.  Soda…it’s my worst vice.  How funny is that?  I don’t even drink alcohol, or even eat much meat anymore.

I was pretty sick on Saturday when I drove my mom down to first get her car from the transmission shop in Kingston and then to Andy’s.  When we arrived at the shop, her car was all fixed and they told her she has a zero balance.  Evidently someone paid the $1800 bill for her. A stranger?  A rich relative?  She doesn’t know and nobody will tell her.  How’s that for an awesome start to the day?  Needless to say my mom was in a happy state of shock when we got to Andy’s.

I’d seen Jonah two days the week before, for two different doc appointments two days apart…his juvenile arthritis doc and his eye specialist (the one who did his operation).  Both times I met the incredibly awesome caregivers from Anderson School who transport the children to their doc appointments.   Every single one of them is amazing, even when they must be so very tired from getting up at the crack of dawn to gather Jonah and drive him 90 minutes to an 8am doctor appointment.

Not only was Jonah a little angel for both appointments, but we get great news from both doctors too.  His arthritis has mitigated and the pressure in both his eyes is nice and low – 12 in one eye and 17 in the other.  I asked the eye doc if his left eye had any sight at all and she said not really, he can just see shadows, which I knew but couldn’t help asking again.  Now we just protect that right eye with everything we’ve got.

Happy Boo

Happy Boo

When we arrived at Andy’s apartment Jonah was good again…lovey and eager to take my mom’s soft case, unzip it, and put all the sandwiches, bags of chips, and drinks away, opening cabinets and the fridge and systematically putting everything in its place.  He even did the dishes (well, a coffee cup and a plate) with aplomb.

diligently working

diligently working

He has come so far and done so much in the 2 1/2 years he’s been living and learning at the Anderson School for Autism.  He is more and more independent every day, with fewer aggressions, and I couldn’t be happier or prouder or more grateful.   I can’t believe he is almost 12.

I was contacted recently by a mom who is in a similar situation we were in, and I promised to help her in any way I can.  The bottom line is there needs to be a place where children who need residential placement can go until there is an opening somewhere.  Without it families are torn apart (the woman who contacted me had to move her two other children to a relative’s house for their safety).  It is not a matter of convenience.  It is a matter of sanity.  Of danger.  Of real risk of injury or even death, especially if the aggressive child is big, strong, or, like Jonah, simply out of control – smashing TVs, windows, and hitting, kicking, biting…

It is a disgusting thing when the most vulnerable population becomes also dangerous, and there is nowhere to turn for help.  Not the police, not the local psych centers, not the ER.  Nowhere. 

I promised long ago (and in this blog) that I would advocate someday, and so here I go.  There is an advocacy day in downtown Albany on the 11th and I will be there along with people from Anderson and other concerned nonprofits, fighting for COLA (cost of living adjustment) which has been denied these important nonprofits for 6 years.  Then I am going to make  appointments with my assemblyman and senator.  Hopefully I can get some other moms and someone from Anderson to come with me, and we can make some change happen.  How, I don’t know.  I need to research.  I need to learn how these things work.   And I need to control my temper, because this REALLY pisses me off.

On a terrible note, I was shocked and saddened to hear of Philip Seymour Hoffman‘s death-by-heroin.  Good God, what a waste of a fantastic actor and father and, evidently, a really cool guy, his rumored temper/testiness notwithstanding.  Heroin is the devil.  The needle and the damage done.  I wish these actors and musicians and everyone could learn from those who have gone before them.  I guess nobody thinks it can happen to them.

But now that Boo is doing better I can focus on this work, on my work with Modest Needs (I am learning to be a Grant Writer), and my work with the Interfaith Partnership for the Homeless.  Not to mention learning to play guitar, and getting healthier and stronger and smarter and happier.

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How’s it going to be
When there’s no one there to talk to
Between you and me?

~ Third Eye Blind

I haven’t been writing much, except for work.  I am a hermit in my house like a winter bear.  It feels cozy-nice.  Plus I do truly good things for my job, and from home where it is easy to hermitize. However, I realize I need to move my limbs and go out and be somewhat social.  Yesterday I went for a mile walk, which is only 20% of what my pedometer app recommends.  But I figure a mile in my own moccasins is better than no miles on the couch.

I shall emerge groundhog-esque tomorrow for a doctor appointment, to have breakfast with my dad, and to visit my Uncle J in the hospital.  Saturday there is always Boo, which forces me out and away from home to see my sweet son.  Last week I played him Meanwhile, Rick James (Jonah calls it “the clapping song” and can do all that clapping in time) — Boo and I danced all around the living room, of course mostly in circles, singing and laughing…I hadn’t played it for him in years but something clicked in his head, and he remembered and requested it.  He requests teachers and babysitters from years ago, too.

He remembers things, my Boo.

He is also clever, and has a fantastic invented communication system to navigate the maze around which his verbal skills cannot puzzle out just yet.  Let’s say he wants a car ride, but he also wants to make sure that it’s not the car ride back to his residence.  What he will say to communicate this is “Wanna take a bath?” which makes no sense to anyone but Andy, me, and my mother.  What he is really saying is can we go for a car ride now and then come back here again after that so I can take a bath or at least not have to go back to the residence just yet?

Andy decoded all this.  I take no credit.

Not an hour after the happy dancing clapping song,  Jonah is screaming in Andy’s bedroom on the Big Blue Bed because he’d hit Andy and is trying his damnedest to attack him.  Hard.  I stay close, ready to help, watching as Jonah’s kicks hit Andy’s kidneys, his face, his torso, wanting to jump in and help but Andy told me not to, he always tells me not to, my mother in the kitchen nervous nervous nervous all the happy dancing energy lost in this new development.

And then it is over, and Boo is requesting Cranberry Guster? (What he calls their Easy Wonderful CD) because I am trying to re-expand his musical choices beyond Prince (sorry, Andy).  Boo remembers the Guster days of course and loved when we put it on.  My mother would like him to listen to The Sound of Music but I’ll settle for Cake or Guster or even Snoop Dog (or it is Wolf now)?  Less Lady Gaga and more They Might Be Giants.  I just want him to listen to and love lots of different music.

These days I feel so much like half a mother, and it’s too hard to explain to people who try to reassure me I am of course a whole mother and blah blah blah.   Facebook doesn’t help.  Everyone has stories, accomplishments, outings to share.  There’s too much silence in my house.  I turn on TV just to hear the noise (instead of embracing the silence as I should) and I feel bad for those who live alone.  I have two pets with me during the day and a partner at night but I do not have my child and I know now he will likely never live with me again.

For a while I think I assumed his placement would be temporary, that he would get better like in a hospital and then come home.  No.  That’s not right.  I don’t think I assumed anything, actually.  I was in a place of desperation and there was no extra time for anything but panic and aggression, emergency and breakdown.

I spoke with his case worker at school and deteriorated into tears.  I am Queen of the Endless Questions.  My prayers are please and thank you.  And it’s so hard for me to talk about Jonah.  Thank God I write.

Has this post deteriorated into rambling?  Ramble on

I do want to communicate with someone who also has placed an only child in residential care.   I can talk to Andy but we almost never talk about that.  I feel like such a tiny demographic.

“I am an island…..”     ~ Paul Simon

No, that won’t work.  In that song an island never cries.

Here’s a picture or two instead of a stereotypical quote:

nothing beats a little daddy love

nothing beats a little daddy love

Jonah invented a new suck-your-thumb-while-giving-a-gang-signal, supercool move

Jonah invented a new suck-your-thumb-while-giving-a-gang-signal

Love you, sweetheart.

Mama see you soon.

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So I allowed myself a break from telling the story of Jonah and our ups and downs…the roller coaster twisting racing in turns of joy and aggression, stopping at the station for deep breaths of still, of peace, but the safety bar won’t raise – it never lets us out – and then after a day a week a month the announcement to keep hands and feet inside the vehicle, and we’re off again and climbing that hill from which comes the fall the fright the feelings, stop the ride I want to get off please.

It’s the same shit I always spout and am tired of spouting.  How about this year I turn my metaphor around, into a river…not round and round but journeying somewhere, rocks and rapids notwithstanding?  Not so much dizziness but the radical acceptance of a fluid situation.  Change not as an event but as a constancy.  Journeying not with a destination but as the destination.

Yeah, like I’m gonna turn all Zen.  Well I can give it a shot, anyway.

First the third wake:  my friend K’s father passed away from the lung cancer that killed him on Friday the 13th of December.  Her bravery and strength, the way she carries this burden like a strong woman of faith with a will of iron and a heart of truth and beauty…she is the only child, like me.  Now she slams the door shut on 2013 and perhaps is still in shock that her father will not be there in this new year.  How strange is grief, and the different ways it works its necessary, surgical-like job inside each one of us when we mourn.  I have tried to be a good friend but still feel helpless.  Through it all she managed to make batches of Christmas cookies and gift them to me along with a Willie Wonka shirt for Jonah with Oompa Loompas on it.  I am proud to call her one of my closest friends.

My real-life-friends have whittled down to a few, but they are gems who have stuck with me no matter what – without judgement or competitive bullshit or cattiness.  That feels right.   In 2013 I have given and forgiven; I have risen to the occasion and I have fallen apart.  I’ve slipped and stayed lying on the ground for a while.  I’ve crawled and danced and risked everything and lost my shit it felt so good to smash that glass all for a better way to get through this life, for better things to do, for more important goals, more impactful work.   I’ve soared higher than ever on the warmest winds of change and beauty.  I’ve cried my eyes out both in sorrow and laughter.  I’ve lived. 

During the month of December I also allowed myself to feel the angry, awful pull in my heart every time I saw kids waiting for Santa, counting days, getting excited, dressed for photos, new babies joining bigger siblings by the fireside as mom bakes cookies, the whole Christmas scene and winter family fun I envy.

Then I take the time to realize half of what we see is illusion anyway, and the other half probably would envy my ability to give my boy bubbles, tangle toys, and a Willie Wonka & The Chocolate Factory DVD for Christmas while they are faced with kids who want iPads and gaming systems – the right sneakers and the cool outfits, hundreds and maybe thousands of dollars of presents.  Of course this is all conjecture and generalization, but you get the idea.

There are no right outfits for Jonah, unless you count the fact that comfort is king.  In fact, Andy drove Jonah up to my mother and me on Christmas in jammie bottoms and an unmatched shirt, because that’s what Boo wanted to wear.

Jonah Boo, playing on my mom's floor with a flashing turnabout radio-controlled car

Jonah Boo, playing for a few minutes on my mom’s floor with a flashing turnabout radio-controlled car

My mother had cooked a ham & pre-prepared it all into containers for us and, just like Thanksgiving, we spent Christmas on car ride seeking a train that once again refused to come because it was a holiday.

I caught the little bugger for a Christmas pic with mama

I caught the little bugger for a Christmas pic with his mama

My mama and me

And one of MY mama and me

When Jonah loves a particular scene in a movie or show, he'll run up to the TV with a happy screech

When Jonah loves a scene on TV or in a movie he will run to the screen with a happy screech.  Here’s another example, taken a few days later:

Still Willie Wonka on the screen

Still Willie Wonka on the screen

And the coolest pic of all, methinks, because Jonah is watching on one side and a kid IN the movie is watching on another:

I love this pic

Here comes the falling somersault

So I may not have a lot of details to share, some because I chose to forget and some because I am too lazy to type out a month’s worth of details….but there are many moments of Jonah being his repititious-yet-never-boring self.

I have to give a shout-out to Jonah’s dad, Andy, who as usual has come through in his amazing father way.  Since he lives so close to Jonah he sees him more than I do — but that doesn’t mean he has to pick him up for visits as much as he does, or withstand the aggressions, the emotional strain, and the exhaustion which nearly almost follows a visit — he has picked Jonah up for a visit whenever he can, whenever he is not working.  Always he is patient and takes Jonah on all the car rides our boy so loves, playing Prince CDs for Jonah (which is kind of like me playing Guster CDs for him, because Andy loves Prince like I love Guster).

Always he is a wonderful father.  The best parent with the strongest constitution and all the love in the world for his precious son, his only child.

Here is Jonah crying because we forgot to bring his favorite Prince CD on the car ride.  Luckily we were not far away and were able to return to the apartment to retrieve the longed-for CD.

"Diamonds and Pearls?!"

“Diamonds and Pearls?!”

This is not a boy with autism having an aggression.  This is a kid who wants his Prince and ain’t afraid to cry about it.

Oh the humanity

Oh the humanity

Poor Boo.  The aggressions I thought might be gone for good have returned.  I have no idea how many times the pendulum has to swing before I get it through my head:  pendulums swing – it’s what they do.  Perhaps I can incorporate this into my head as well this year. Or, better yet, find a way to blow up the pendulum.  Smash it all to hell.

I’m gonna learn play my new acoustic guitar (thank you Richie, who came to visit from Japan, for teaching me the 1-4-5 progression, which means I can play about 10,000 songs very poorly so far)…and maybe try a song or two for Jonah…

yes I asked for this specific one because I am a DUMMY with an acoustic guitar

Yes I asked for this specific one because I am a DUMMY with an acoustic guitar

So here is a 2013 pictorial to usher in what I pray will be a better year – for everyone!

The Year of The Eye: January 2013

The Year of The Eye:
January 2013

March:  more eye doctor

March: more eye doctor

April:  thumb-sucking contemplative Boo

April: thumb-sucking contemplative Boo

May:  waking up from the eye operation to try & save the sight in his left eye

May: waking up from the eye operation to try & save the sight in his left eye

June: The endless wearing of the eye shield

June: The endless wearing of the eye shield

July:  a smile through the eye shield

July: a smile through the eye shield

More daddy-love in August

More daddy-love in August

No more eye shield.  The operation didn't save his sight.  Thank God for Boo's healthy right eye!

September:  Happy Boo, rocking back and forth to a tune in the car. The operation didn’t save his left eye’s sight, though. Thank God for Boo’s healthy right eye!

October:  visit to the juvenile arthritis doc - everything looks great!

October: visit to the juvenile arthritis doc – everything looks great!

November:  Boo asks if the nonexistent "Thanksgiving train" is coming, and points to where he thinks it'll come from.

November: Boo asks if the nonexistent “Thanksgiving train” is coming & points to where he thinks it’ll come from.  He looks hopeful.  Sorry Boo!

Rockin' his Almanzo Wilder Homestead shirt & eating some chips and dip...

December: Rockin’ his Almanzo Wilder Homestead shirt & eating some chips and dip…

Boo’s ready for 2014.  We’re three days in already and “Snowstorm Hercules” (I guess they’re naming all the snowstorms now) has dropped maybe 7 or 8 inches here in Albany.  Hercules my ass.  They should have named it Deep Freeze — it’s about negative 4 outside and even opening a curtain feels like I’m subjecting myself to snow-blindness from all the white-bright.

P.S.  My biological family does not want anything to do with me.  Surprise surprise.  It was a bee sting, really – for a short while it hurt, burned, stank of rejection and things not right or fair.  I cried.  Then I got up off my ass and put some calamine lotion on the whole mess and flicked the bee off my arm.  That bee died stinging me, just as this biological-relative bullshit is dead to me now.  I am blood-related to Boo, and that’s all I need.  That, and the family I already have and love – including those outside my adoptive family whom I have chosen to adopt as sisters or brothers or cousins, DNA be damned.

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