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Archive for March, 2012

“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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Zoom Focus: A Kids-Eye View of the Capital District

 Hand Over Hand Photography: DiAnna Marr’s Remarkable Camera-Land

When our son Jonah was a wee baby, Andy and I had a “professional” picture taken of him at a store studio.  We did this again, ritual-like, when Jonah was six months old, and I think we managed another at 13 months or so, Easter-themed.   By then, though, we couldn’t take him to any barber so we had to cut his hair ourselves – and the resulting picture portrayed a half-smiling waif with butchered hair, clutching a yarn-covered plastic egg.  After that, the whole idea became unthinkable.  Before he was two we knew better than to attempt such a feat.

For that matter, what kid, disabled or not, is an angel for this kind of thing?  The whole experience is difficult at best for any family.  By the time the pictures are taken, you’re just hoping for a smile.  “You never look at those photos as REAL memories,” said DiAnna Marr, Hand Over Hand’s photographer.  “The best photos are not forced, with strained smiles, but sincere moments.”

Hand Over Hand Photography embodies what its name implies – an experience of working together to find beauty in everything.  DiAnna is a refreshingly new kind of photographer – the kind who not only travels to you but also listens to you as well.  She wants the families she works with, especially the children, to be themselves, relax, and have fun.  She knows how to capture not only the beauty of a smile but also the radiance in spontaneous emotion.   She’s friendly, laid back, and professional too.

DiAnna’s thoughtful perspective extends beyond the camera to small personal gestures and considerate, thoughtful touches.  “I always bring a junk camera with me,” she told me. “Younger, more curious kids can hold it or play with it so they can connect and feel part of the process.”  And don’t worry about presenting perfection or polite little cherubs.  “I’m comfortable and relaxed with behaviors of all types, and flexible with time, “ she said; ”temper tantrums happen, issues come up.  It’s life.”

Maybe that’s the best part about working with DiAnna:  there isn’t any pressure, and you can be yourself around her. Unperturbed by fussy kids and grumpiness, there’s an especially nice bonus in the fact that she works so well with disabled kids or those with more serious behavioral problems.  She’s got several years’ experience teaching and caring for children with autism, other cognitive, and physical disabilities, and she’s qualified to handle outbursts of aggression.

As much as she enjoys photo sessions with babies and younger kids, DiAnna has a special place in her heart for high school senior photos.  I think maybe she knows that their official school photos so often are disappointing, and it’s a difficult age for self-esteem.    “Showing people how captivating they are is an amazing experience,” she said.    DiAnna welcomes new ways of seeing; she doesn’t limit herself to any particular type of photography.   Her engagement sessions and wedding portfolios are uniquely crafted and truly affordable, and her undivided attention feels like a gift when you’re the subject behind her lens.

Visit Hand Over Hand Photography on Facebook and say hello.  Then check out DiAnna’s website.  It reflects who she is in a uniquely accurate way – from the stunning photos she’s taken to the site’s design and feel.  Make sure to visit her ‘Behind the Lens’ page.  On one side of the page is a photograph of the photographer herself – DiAnna, smiling, eyes lifted almost shyly into the light, framed by hazy flowers.

On the other side, her words:  what she wants you to know about her.  She doesn’t use this space to list credentials or brag about the quality of photography equipment in her collection.  Instead, what she has to say is much more personal.    “I try to use my camera to capture the sense of wonder I still have about the world and the people in it,” she writes.

“You are beautiful.  I will show you.”

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Tuesday, two people from Jonah’s school drove him up to his glaucoma appointment, and I met them there.  This was his first appointment at a glaucoma doc since they determined he had it.  We knew he had a good chance of getting glaucoma.  In February of 2010 they operated on his left eye, placing a Reticert implant inside (which constantly emits a controlled dosage of a steroid, locally) and they replaced the lens of his eye with a fake one.  Too much pressure in his eye.  Glaucoma was likely, eventually, they said.

In photos you can see his left and right eyes look different.

And so now glaucoma.  At the appointment I was given a brochure called Understanding and Living With Glaucoma.  Its clear, clinical language was interrupted in just one place:  the first sentence (under the heading What is Glaucoma?), which somehow managed to sound both dismal and anthropomorphic:

Glaucoma is an eye disease that gradually steals your vision.

I closed the brochure.  Not now.

During the whole time, Jonah was the bravest little boy ever.  I’m so very proud of him.  The doc was almost an hour late, so we had to entertain him, and the two people who drove him up from school turned out to be incredibly awesome, operating like a well oiled machine.  I don’t mean to say they were in any way cold, either.  E was a short giant of a woman.  She knew her shit.  She was friendly and efficient, and perceived exactly how to handle everyone, from me to the doc to the receptionist.   E put everyone at ease, and kept everything at Def-Con 1.  A compassionate magician of a woman.

She understands the system and works well within it, but she also demands respect and damn well gets it.   I loved her.

With her was J, a muscular young-looking man with a strong-yet-softie look about him.  He and Jonah were like brothers.  (I kept thinking of Rainman:  V-E-R-N.  My main man Vern).  J is definitely Jonah’s main man.  He knew how to re-direct Jonah and did so with a deceptively casual brilliance.  He’d look over at Jonah and say give me the punch and they’d bump fists, Jonah giggling.  J too was friendly and comforting; when I sang with Jonah he said “you got pipes” – and we chatted easily.  He told me he was an amateur boxer, and he was about 10 years older than I’d pegged him for – all the while engaging with Jonah as necessary and wise.  I loved him.

I tell you these people were awesome.  I was so grateful I was nearly in tears.  When other people are in charge of your child, people who are not relatives or even friends, you want to kneel before them as you would royalty, for they have the most important job in the world, to parents like Andy and me.  They care for our little boy.  He will be ten on March 7th,  sharing a birthday with, of all people, Tammy Fay Baker.

Wait!  Wow.  I just searched for “Who was born on March 7th” out of curiosity, and found out Elizabeth Moon shares his birthday!  She wrote one of my favorite books, The Speed of Dark– set slightly in the future, about a man who has high-functioning autism and must decide whether or not to undergo a new procedure to make him normal.  The book is where I got the title for this blog, Normal is a Dryer Setting.  In The Speed of Dark, one character with autism says it during a conversation.  I love that.  Who else was born on March 7th?  Ravel, the composer.  Wanda Sykes, the comedienne.  And even Pam Carter – Wonder Woman’s sister.

But I digress.

Doc was good.  A little cool and clinical, but 99% of doctors are, after all.  (Not you, Jacob.  Or you, Neil. You’re the 1%.  HA!)  Here’s where it gets weird, though.  With both E and J holding Jonah, the doc put numbing drops into Jonah’s eyes (Jonah’s used to eye drops so that wasn’t the big deal you’d think it might be) and then looked through his fancy machine and said “this suture is broken.” He turned to the nurse, asked her for an instrument, and proceeded to (I have no idea how) remove the broken suture from the back of my son’s eye.  Um, okay.  Wow.

Turns out it had been scratching his retina, the suture, and as a result the retina was red and irritated.  “How long do you think it’s been broken?” I asked.  “Months,” he replied coolly.  “At least.”  I looked at the suture he’d set on a tray.  “Could he have been in pain all this time?” I asked.  He paused.  “Yes,” he answered.

But Jonah’s to the point where he can say if something hurts, I was thinking.  After his eye operation, he cried in misery and very clearly stated “eye hurts!”  I don’t understand and I don’t know what to think.

But in a few weeks they’re going to put him under anesthesia so two specialists can take a closer look at his retina.

Then the doctor set me up with the name of a rheumatologist who sees children – something we were told a year ago did not exist in this area…which is why we traveled to Boston Children’s Hospital to get him diagnosed with juvenile arthritis, something all the doctors here suspected he had.  Now, finally, he can be hooked up with a rheumatologist.

There is more but I am tired.  It has been a very exciting day, and I’ll tell you all more about that later.  I have to go watch Tora Tora Tora; my dad said it was the most historically accurate portrayal of the events leading to the attack on Pearl Harbor, and I’m interested in that.

Good night all.  Good night, little Boo.  Sweet dreams.  If there’s any mistakes in this I’ll come back and fix ’em tomorrow.  I don’t have it in me to edit.

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