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and she slept

In the Spring of 1999, Andy and I lived on the 3rd floor of a downtown Albany brownstone apartment building – before marriage, before Jonah, before either of us had turned 30.  One warm day, we opened the window and heard loud howling-meows in the alley below.   When we investigated we found a half-starved alley cat, ribs standing out from her fur, crying a desperate, determined call.  To this day I think she was calling me – the queen sucker for strays.   She ran over to rub herself on and around my legs.    Of course we took her in, Andy and I, and for a week or so she mostly just sat in the middle of our woven living room rug, still and silent, as if in shock.

Soon, she grew to like living with us – having food and care, warmth and safety.  She rounded out into a small but well-fed cat, and seemed so grateful – she never missed an opportunity to show us.    We took her to an awesome vet who guess-timated her to be 2 or 3 years old.  She wasn’t a pretty cat, but oh how she loved.  She was the sweetest thing, climbing in my lap and rubbing her furry face against mine.  Leaning into me, sleeping in Andy’s hair (really), purring at our touch.  We named her Sugar — not for her coloring but for her super-sweet disposition.

I’ve had my share of cat companions in my day, but Sugar’s been the sweetest, paws down.

When Jonah was born, Sugar took to sleeping in his crib.  By the time Jonah actually slept in the crib, he was 5 months old, and Sugar wanted to stay.  So together they slept.  We watched and, at first, worried, but they were just fine.  Jonah could roll over onto Sugar or pull her tail and Sugar stayed calm or got away.

What Sugar wanted more than anything in this world was attention.  She gladly sat in my lap for hours to be brushed or petted, purring loud and occasionally lifting her tiny face to mine for a kiss.   Her ideal companion, really, would have been an 80-year-old woman who’d gladly overindulge a needy cat in exchange for the kind of devotion Sugar loved to give.  I love you I love you Feed Me I love you was Sugar’s purr-mantra.  (She puked more often than we liked, but we  overlooked that stubbornly unfixable flaw).  Jonah and Sugar mostly peacefully co-existed.

But once Jonah started to get behaviorally aggressive, we knew Sugar needed a safer place to live, so my mother took her in, kindly giving her love and care.  Whenever I visited my mother I paid a special visit to Sugar too, holding the cat close in my arms and setting her down gently to pet her and listen to her rolling purr.  She came running at my voice, which I always thought was cool.  She knows her mama.

A month or so ago, though,  Sugar got sores on her belly.  We found out she needed surgery and I gladly paid for it.   After all, my mom and I thought, Sugar still ate well, jumped up on the bed, walked fine, and all her body functions were working.   Neither mom nor I could bring ourselves NOT to do the surgery.  After the operation, Sugar seemed to be doing well and healing okay, but these past few days she grew weaker.  She started limping and then she just sat in the litter box.  My mom tried to hand-feed her but she would only eat a tiny bit.  This morning, when she lifted Sugar into her arms, Sugar peed all over her.

So my mother decided Sugar had been through enough.  I called Andy to tell him, and he said he understood and was sorry.  My mother picked me up at work and I held my 4-pound cat in a blanket on my lap as we drove in silence to the vet.  I closed my eyes and ran my fingertips through her fur, along her sharp spine, my tears falling freely on her tiny head, like a baptism in reverse.  An anointing of the sick.

Sugar purred softly in my arms as we took her to that same compassionate doctor who first examined her 13 years ago.

I pet her as she was laid on a soft blanket and given first an injection to make her groggy.  The doc left the room for a minute as we said goodbye.   I love you, Sugarpuss, I whispered in her ear, kissing her one last time.  I silently asked Gina to come get her, please, and God strike me down if I’m lying just then a Paul Simon song from our favorite album came on the very-low-volume piped-in music in the room, and I knew it was her way of telling me she’d be there to show my cat around heaven.

When the doc came back, she gently asked if we wanted to stay in the room.  I knew my mom didn’t want to, but I did, so mom bravely stood by me; softly we spoke in whispers to our old, sweet, tiny runt of a calico cat.   “It’s okay, baby,” I  told her.  “It’s okay to go.”   The doc took her time to carefully search and find a good vein.  She inserted a needle and slowly injected Sugar with whatever drug will euthanize a cat.

“God’s finger touched her, and she slept.”  ~ Alfred, Lord Tennyson

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There is something almost routine, now, about kissing my son goodbye after a visit or a doctor appointment.  But sometimes I step back unwittingly from that routine and kissing my son goodbye comes with a horror that feels like the day we said goodbye for that first awful time at the school. 

My mind is pretty good at erasing or dumping some memories and then it refuses to get rid of others;  I will never be able to escape the memory of kissing my son goodbye that day.  I don’t think I’ve ever held my breath for longer than when they led him away, out the door, down the hall.  Gone. 

When Andy and Jonah left today it felt like that.  I had a difficult time listening to what the doctor was saying and absorbing it all.  I gave her the direct number of Jonah’s nurse at school and I wrote down a lot of information before I left, though.  The conversation helped to snap me out of longing to run after Jonah and snatch him up into my arms.

For a while I have needed to go out in an empty field somewhere and scream my head off.  Really scream. 

It sits inside me, that scream.

World Autism Day.  Light it up Blue.  Good.  Make them aware.  Research, figure this out.  Please and thank you.

Today the doctor was a pediatric rheumatologist who is only in Albany two times a week.

Remember when we had to drive all the way to Boston Children’s Hospital?

There was a rumor that she had a practice in Red Hook, close to Boo, but no one could confirm this.   So E took matters into her own hands and found out this doctor lives in Rhinebeck (which also is near where Jonah lives).  E tracked her down and called her home phone to ask her does she have a practice in Red Hook or not?  

(E is badass.  I told you so.  She gets shit done).  But the doc’s got no practice in Red Hook.  

So today Jonah, in honor of World Autism Day, got his official diagnosis of JRA (Juvenile Rheumatoid Arthritis).   Now I am becoming acquainted with yet another disorder/disease.  There are several kinds of JRA, and Jonah’s is called Pauciarticular Onset JRA – the most common form of JRA.  Of the three JRA subtypes, (reads the brochure) children with pauciarticular have the highest risk for getting chronic eye inflammation called uveitis.   So it is piecing together, albeit slowly.  Next Tuesday we’re going back to Dr. Simmons again to see what now.  I’m researching Methotrexate, the drug they’re thinking of recommending.

As I typed this CNN e-mailed and asked me if I’d like to write some more, so I said yes of course, in honor of World Autism Month.  My favorite pressure, the pressure to write.  I guess because it doesn’t feel like pressure at all, the writing.  But as before I have no given theme or direction — they’re entrusting that to me — so I’ll kind of be winging it.  I am honored just to be asked.

Here are some pics of Jonah from the doctor’s office today – I love taking pics of Boo!

First he was happy.  “What color are the flowers, Boo?  Let’s count them!  1…2…3…4…”

Then he got antsy and needed to walk the hallways.  Black kitty he said, pointing. (I think it was actually an owl.)

Luckily we were at the end of a hallway with a big window.  He visited here quite a few times.  It makes you wish you had one of those passes you get if you take your kid w/autism to Disney.  They go first.  No waiting.  Seems like implementing this at the doctor’s would be a really good idea.

I have to say though, she was very cool, this doc.  We’ve been fortunate to have caring doctors for Boo.  A doctor even took the time to help me find where to go when I’d gotten lost.  Thank you, Dr. D.

“Grab a hold
Take these melodies with your hands
Write a song to sing
Isn’t such a bad, bad world

And I say these times are strange
I can feel it in the night
I’m standing in the dark
Holding up for the light

And here I’ll remain
‘Til the great sun shines
Standing in the dark
Waiting up for the light…”

~ Guster, Bad Bad World

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This past Saturday was okay for a while and then it really wasn’t okay at all.  Part of it was my mental state, which went all to hell on Friday.  But here are a bunch of cool pictures.

Knockout Ned came along.

Jonah put his harness on to get into the car…

Swinging at the park

Looking at “whiteduck.”

…but then in the car he pulled my hair hard, grabbed and bent my glasses, and kicked me in the head.  My mother kept saying “let me get in the back with him.”

I’m not sure if she thought (A) He wouldn’t attack her or (B) She wouldn’t mind it if he did and (C) She certainly wouldn’t be the melodramatic weakling her daughter turns into, crying and sad because she sees her son for 2 hours a week and wants it to be a good 2 hours, a happy 2 hours…

She actually was extremely angry at me for this and not a word was spoken between us on the ride back.

“All I can say,” she declared disgustedly, once we’d arrived home, “is God help Jonah.”

I was pissed at her implication, but I can get behind what she said.  I have never done right by her beloved grandson and I never will.  This I must accept as her perception, one she has a right to, one I mustn’t do much more with than acknowledge.  Thank God I am not so young anymore.  I am learning.  Slowly…but I am learning when silence, forgiveness, and self-examination are best.

Off to another doctor appointment tomorrow, to the rheumatologist again.  Andy’s bringing him up this time.

God help Jonah.

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afraid of the light

We can easily forgive a child who is afraid of the dark; the real tragedy of life is when men are afraid of the light.

Plato

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Monday morning, and it was so early.  6am, which meant E & J  & Jonah had been on the road since 4, up since, what, 2:30am?  3?  J stayed with Jonah, cat-napping in the van.  E & I signed paperwork and I gulped coffee.  When they brought Boo in we went over to the toys in the children’s area.

He played a little…

… but was mostly very tired.  Yawning...

I suited up and held his hand as they wheeled him into the operating room for his exploratory procedure.  His eyes grew big and frightened.  “Just like when you were born,” I whispered, looking around at all the metal instruments, tables, and lights everywhere.  “It’s okay angel.  Mommy’s here,” I said.  The part where they put the gas mask on your child is the hardest.  Jonah struggled, scared, then a little bit of spittle appeared at his lips and he went to sleep.  It’s hard not to panic.  A nurse kindly ushered me out and I joined E in the cafeteria while J napped in the surgical waiting room.

When Jonah was brought into post-op, they called me in first.  Jonah tossed back and forth and I kept repeating “mama’s here, angel.  mama’s here,”  until his eyes focused on me.    I gave him kisses, brushed his damp hair back.  Then I saw he was gonna puke so I got one of those puke dishes, guided him up, and held it under his mouth, not a moment too soon.  He puked and puked and puked again, before laying back, exhausted.  A kind nurse brought him a popsicle, which I assumed was really some flavored electrolyte-replacer, and Jonah ate a few nibbles.  I put balm on his chapped lips.  After a few minutes he asked for J, then repeatedly, so J and E both came in to see us.  J lay right down with Jonah, almost, cradling him.  This big, muscular, scarred, toothpick-chewing boxer turns softie with my little broken boy.

Then Jonah pukes all over himself.  We replace the robe.  I catch the puke in another basin.  The room is full of puke trays and washcloths and tissues.   Suddenly Jonah says “go baffroom?” and tries to get up, quickly.  “K, homie, let’s go,” J said, expertly guiding both Jonah and his IV pole into the  restroom.  Here I am, all proud that Jonah asked when he needed to go to the bathroom,  reveling in that pride, and as I stare at the restroom door I see a red light flash above it, accompanied by an alarm. “They need help,” I called out automatically.  Someone opened the bathroom door and went in, and I caught a quick glimpse of the chaos within.  Puke and pee and poop, all over the place.

When they finally came out and Jonah came back to the room, dressed in a hospital gown, J excused himself to go wash up.  He’d been, um, spray-splattered.  He was exhausted, nearly gagging, and went off to clean and go outside to get some air and Jonah’s change of clothes.

This man is probably paid twelve dollars an hour.   I might be shooting high on that guess.

When he came back in, he was himself again. “Me and homie on a whole new level now,” he joked, putting his arms around my boy as E figured out all the appointments, coordinating it all.

When we loaded Jonah back in the van, a comfy pillow and blanket set up for him, I watched my boy settle into the soft nest, put his thumb in his mouth, and sigh.

I started crying in gratitude and frustration.  It’s not fair that Jonah has to have autism and have operations and other things wrong with him he can’t even understand, and it’s not fair that people like J and E, and all the caregivers — these amazing, wonderful, patient people who literally care for and watch over our children — are paid so little.  Why? I am not pointing a finger at my son’s school.   It’s like this everywhere.  They don’t have the funding?  Who decides who makes what kind of money?

For that matter, why can’t they institute a sliding-scale tuition based on the parents’ income, and put that money toward salary hikes?  I’d gladly get on board and pay my share.  Not all disabled kids are from poor families.  So the rich disabled kid gets exactly the same free services as the poor one?  It doesn’t seem right.  When the kids become adults I can see the equality, but until then I say the parents who are able to should work together to raise the salaries of people we are counting on and grateful for.

Somehow I got on a rant.  I really didn’t mean to.   Basically his eyes looked good.  Jonah’s left eye had high pressure, but that could have been because he didn’t have his eye drops that morning… so they’ll take a measure in the regular office next week, then see what’s what.

They called me today to tell me Jonah had a one-person takedown (a wrap) to keep him under control.  I was at my doctor’s office when my cell-phone rang, which was weird.  And it’s always a strange conversation, because it’s almost always bad news and so I find myself hoping for news which isn’t that bad.  And there isn’t anything to say – they’re required to call a parent when there is a takedown. Okay then, thanks for calling.  I’m really sorry.  I hope nobody is hurt.  (I know someone is hurt, of course).  Sometimes I don’t even want to know these things.

Sometimes I want to know nothing at all.

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I have been writing back and forth with several mothers, some who found me through the CNN article, others I’ve known a while, through one path or another.

E has a child in a residential educational facility too — her child has been there 3 years now.  We write to one another of how it feels.   We hold one another up.   Recently, I wrote to her:

I am beginning to understand that there are a lot of us.   Who have done this thing.  Who feel this way.   Who struggle with mixed emotions – first one, then the other…feeling the guilt and the freedom together, a strange mix of relief and grief.  This is all just swept under the rug.  No one talks about it, acknowledges it, does anything about it.  I’ve had enough of that.  So many families struggle and are in pain.

I want to try to write a book.

Who wants to read a book when there’s no happy ending?  friend E  e-mailed me when I suggested this.

I thought about all the books I have loved that did not have what most would consider happy endings:  The Heart is a Lonely Hunter.  Of Mice and Men.  The Bridge to Terabithia.  The Awakening.  The Giver  (maybe; that one’s left open to interpretation).  Every Shakespeare tragedy.  Alas Babylon.  And on and on.

So I wrote back to her:  Yes. We can compel them to create one!  And she immediately offered me her support and help. Then I thought of the book, The Help – how Skeeter compiled all the stories of the women into a book.  Should I do it that way?

I think we need to have a voice.  There are a lot of people who need help.    Maybe the local autism society can help me figure out how to go about increasing awareness of the ‘behaviorally dangerous’ end of the spectrum.   The rest of us.

Maybe they could call us the prism of the spectrum of autism.  What should be a clear view through transparent glass,  fractured into bits and pieces of what is really there, all the while shooting beams of incredible color in every direction.  Thrown and shattered, though, the prism’s really fucking sharp.  Sharp like people don’t know.  Sharp that would shock them all.

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“Thanks to Shakespeare’s indelible dramatization, March 15—also called the Ides of March—is forever linked with the 44 B.C. assassination of Julius Caesar, and with prophecies of doom.” ~ Brian Handwerk

I have to admit I don’t particularly like Shakespeare, unless I get to see it as intended, as an audience member watching very good actors on a stage.  Reading Shakespeare for me is like trying to translate something you’ll never quite understand.  And we won’t even talk about Chaucer and his bullshit middle English.

But I love to hear my boo talk, no matter how hard to understand or decipher.  When he is happy he fairly chirps – sometimes screams and screeches – and laughs until his tummy hurts.  My God that child can laugh.

Sometimes he’s just giggling but other times he just cracks himself up, or something strikes him as hilarious, or he just is filled with joy.

Tomorrow please God let it be E and J who come to meet me at Jonah’s appointment with the rheumatologist.  I am excited to see Jonah.  I hope he wants hugs and kisses.  I’ll bring bubbles.  Everything will be fine.

There was a beautiful rainbow this morning, and I went in and dragged M outside to see it.  He came out and we stood at the end of the driveway at 7:20am and looked and looked.

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“The wheel is turning and you can’t slow down,
You can’t let go and you can’t hold on,
You can’t go back and you can’t stand still,
If the thunder don’t get you then the lightning will.”

~ The Wheel by the Grateful Dead

I’ve probably quoted that before in this blog.  A funny fact is that I’ve never read my blog straight through from beginning to end.  I could be repeating quotes, stories, ideas…hell, all kinds of shit.

Well it appears our 15 minutes of fame are over.  Jonah’s been swept off the top ten stories of HLNtv.com by famous people and real news. And here I’d dreamed of some publisher happening upon our story and offering me an advance of $25,000 to edit the blog into a book…but not a one has materialized, thus far.  Heh.  I did, however, connect with all lots of amazing new people. People just like me. And supportive souls. And adults on the spectrum.  We’re all in a magical, leaky, strangely expanding ship – the S.S. Autism.

The whole experience, though, was a jolt of affirmation I really needed.  (I thrive on affirmation; it’s damn near Pavlovian).

The thing is someone gave me a chance to tell my story, and I’m grateful for that chance. Thank you, KC.

But the wheel turns, and comes a time for things I don’t want to think about.  Jonah’s first visit to a rheumatologist in this area on Friday, and, on Monday, exploratory eye surgery. I pray to God those same two awesome people who drove him up last time, E and J, will be there.  With them everything will be okay.  It will be okay if Jonah kicks and it will be okay if I burst out sobbing and I don’t have to worry about keeping it together because they will help, they will know what to do and what to say and how to navigate the whole mess.  They have compassion and knowledge and heart, these people.  They love.  Thank God, they love.

Because without them I’d fall apart again. I can’t stand the thought of Jonah scared. In pain.

I remember holding him in my arms  for his first eye surgery, when they implanted the Retisert – how he looked at me with this deep, intense fear in his eyes as I placed him on the operating table…how I watched him go limp-that-looks-like-dead as the anesthesia took effect.  I kept it together long enough to look the surgeon in the eye and whisper “please help my son.”  She held my gaze and promised me, silently, nodding.

I remember closing the door and flattening myself out against the coolness of the wall on the other side.  Telling myself to breathe.  To trust.

Throughout these last ten years I have entrusted my child to so many people.  I am so lucky, so grateful.  I trust and I trust.  To do anything else is to deliberately envision (create?) a worse reality. At least with trust there is hope.

“You must trust and believe in people or life becomes impossible.” ~ Anton Chekhov

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“We read to know we are not alone.” ~ C.S. Lewis

Where do I begin?  I’ve been away and basically “unplugged” since Thursday morning; M & I went on a 2-day mini-trip to see Guster play with the Colorado Symphony Orchestra in Denver, which was amazing.

It was worth every penny I’d saved up to do it.  More about that later, maybe.  First, this very cool piece of news…

Two weeks ago, I got an e-mail from the executive director of Turner, asking me if I’d be interested in writing a piece about Jonah (and why I blog about him) for HLNtv.com and its sister site, CNN.com.  She had been tipped off about my blog by someone I went to high school with who works for CNN.  (Thanks, MM).  So I told her I’d think about it OF COURSE and then I started to panic.  500 words and a two-day deadline.  What to say?  How to encapsulate all we’ve experienced in 500 words?

Here is what I came up with, and I’m humbled and proud (are they mutually exclusive?) to say the story is the #2 top headline on HLNtv.com right now.  I can’t find it on CNN yet, so maybe it’s just going to be on the one site.  Either way

Yesterday at school, with no warning, my son Jonah overturned and threw his desk, attacked his teachers, and was ultimately so aggressive he required a two-person takedown (where his caregivers follow trained physical maneuvers to protect both him and them). My son’s a slender, slight boy, but also wiry and strong. He has autism with severe behavioral problems. He’s been potty trained for five months now, and will sometimes utter a sentence/request: “I want juice please?”

On March 7, Jonah turned ten years old. 

Jonah’s also a cutie, and a charmer. He loves trains, baths, and the beach, tight hugs and Grandma and chases. Though he can only speak in phrases, he can sing entire songs, in tune and with near-perfect rhythm. He taught himself to swim when he was five and dives deep underwater, surging to the surface over and over again, spitting water in a perfect stream. He even invented his own nomenclature (any kind of cola, for instance, is black soda, and whether it’s a dime, penny, or nickel, to Jonah it’s moneycoin). He dances and runs, shouting his jabberwocky to anyone within earshot.  He’s never embarrassed, never ashamed. 

And since August 16, 2011, he’s been living an hour and a half away from me at an educational residential facility for individuals with autism.

I used to judge people like me, people who sent their children away.

I don’t judge anyone anymore. 

Almost two years ago now, Jonah started to say “swat” and whack people on the arm. We and his school tried everything to mitigate this behavior. It grew worse, however, until he eventually became violent without reason – even during a preferred activity. He grabs and breaks eyeglasses. He hits hard and yanks hair. He scratches and bites. He fights dirty, no holds barred. Eventually Jonah calms down, but it is impossible to say for how long. There is no pattern, or if there is a pattern, none of us can see it. 

His father and I tried hard to see it, to find another way. He got the earliest intervention possible; our family doctor knew something was amiss when Jonah was just 8 weeks old. He wasn’t looking at the doctor; he was looking at the lights. “Infants look at faces,” doc told me, smiling, reassuring me we’d keep an eye on him.  So by the time he was 19 months old, Jonah received early intervention services. Diagnosed with autism at 22 months, before he turned three he was admitted to a fantastic full-time school for kids with neurological impairments, where he stayed until the residential placement.

I blog about my son because I have to write about him. Normal is a Dryer Setting is not a triumph-over-autism story, and it’s not a wise mother’s guide to life with autism. It’s just an honest account of our crazy, messy lives. And if it comforts one other family – if I can help just one person feel they are not alone – then Jonah’s journey will be worth the telling.

The most difficult thing about writing this article was to pinpoint exactly why I’m blogging about Jonah, and I think that’s the point she really wanted me to drive home.  I write about him because I’m a writer.  Because it’s therapeutic.  And, I realized, I wanted to uncover this “dark side” of autism nobody talks about.  Because I know I can’t be the only one.  And, maybe most of all,  because I don’t want the other ones to feel alone.

I will come back soon.  If you have commented or written to me, I promise to get back to you as soon as I can.  There are a lot of responses, and I am indeed humbled.  Honored.  And yes, also proud, because I consider myself a writer above almost all else, and this is so invigoratingly validating.

You must stay drunk on writing so reality cannot destroy you.  ~Ray Bradbury

My beautiful Boo:  How many lives you have touched?  How many people can we help? 

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It is Jonah Russell’s 10th birthday today, and time itself must be bending and twisting and teasing me, because I just can’t wrap my mind around that.  I’m off work from noon today until next week.  I was going to drive down to see Jonah after I got off work, but I’m recovering from an ugly stomach bug (I didn’t go to work at all Monday) and don’t want to bring it to him (if he didn’t bring it to me). Plus, I don’t want to upset his special day with an unexpected visit – he won’t comprehend why I’m there.  They’ll have a pizza and cake party for him tonight — and he even gets a present or two.

We had our own birthday party for him at grandma’s house on Saturday; Andy drove him up and grandma had gotten him balloons, all his favorite foods, and cake with chocolate frosting.

Tomorrow morning M and I are flying to Denver, Colorado to see Guster play with the Colorado Symphony Orchestra.  Then back home for two more acoustic shows before (sob) the tour is over.  There is a reason my son learned to sing one of their most complicated songs.  If you click on –> Keep it Together you can see a You Tube video of him singing it, and in pretty good tune & rhythm, when he was 7 — at a time when his verbal language consisted entirely of two-word phrases. (Sorry to long-time readers who’ve heard me say this a dozen or so times).  I guess I brainwashed the child; he was certainly unresistant.  And so together we live happily ever after in Gusterland.

I just sent their album Keep It Together, in fact, to the awesome nursing staff who drive him to doctor appointments.  It was their idea; they said they’d play it in the van for him.  I’m so grateful for the kindness of those who have my son in their care.  There is no better gift to me than to nurture, teach, play with, care for, and maybe even love my little Boo.

PAUSE

At that moment the nurse at his school called to tell me Jonah required another two-person takedown today, after it happening twice yesterday.  I called his glaucoma doc yesterday to ask if the new meds he’d given him (eye drops) could cause pain or increase aggression but they told me no.

I don’t know if I believe this.

I’m going to ask a good doc I know, though, and look into it some.  I don’t want my boy to be in pain, or feeling this compulsion to aggress anymore.

What is it, bunny?  What can I do to make this world softer, better, more tolerable for you?

Sometimes I get mad.  It’s like that scene from Rainman where Raymond’s younger brother Charlie, played by Tom Cruise, loses it while driving in the desert and Raymond insists on purchasing underwear at a K-Mart 5 or 6 states away.  Charlie screeches the car to a halt, throws himself out onto the empty road, and paces wildly, ranting to the desert before returning to his brother, screaming, “You know what I think, Ray? I think this autism is a bunch of shit!  Because you can’t tell me that you’re not in there somewhere!”

It’s the whole theme of the movie, and sometimes the theme of the frustration I feel when I can’t communicate with Jonah the way I wish I could.  Our bright, amazing, incredible little boy has such violent aggressions – and now juvenile arthritis and glaucoma to boot.  It ain’t fair.  He’s so brave.

Despite everything, little Boo, you are ten today — and I love you more than the earth and sky.

Baby Jonah, 2002

Happy Birthday, Sweetheart…

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