Here Come the Judgmentals

 judgmental or judgemental  --adj.  of or denoting an attitude in which judgments about the conduct of others are made  -- Dictionary.com

"Opinions are like a--holes; everybody has one." --"Dirty Harry" Callahan, 1971

Full disclosure:  Back when I was single, "child-free," and clueless, I sniffed, tut-tutted, rolled my eyes and spouted my opinions with the best of them.  Opinions about how I would and could do it better, smarter; how easily I could raise perfectly behaved, perfectly coiffed, perfectly smart little ladies and gentlemen. Opinions about how parents today let kids run their lives.  Opinions about a future when I became a parent, how my lifestyle wouldn't change just because of the addition of a child.  Children should be required to adapt and fit into the lives of the adults raising them, my single friends and I said, not the other way around.  After all, that's what life is, right?  Adapting?

Now, I never criticized anyone directly, but I might as well have.  The look on my face probably said it all.

And then Reality came along in the form of a picky-eating, tantrum-throwing, hand-flapping, non-talking, oddly-behaving, runaway train that permanently knocked me and my precious opinions off of our comfortable pedestal.  "Karma" wasn't just a bitch; in my case, "karma" had a name, a face, and the sweetest smile, and promptly kicked my smug, opinionated behind from here into Sunday.

If I had a dollar for every time some stranger shook their head, gave me the stink-eye, and said, "Can't you control your child?" or "SOMEBODY SLAP THAT KID!" when Aaron behaved oddly, inappropriately, or had a meltdown; scolded my son because he wouldn't look them in the eye or answer when spoken to, or "helpfully" informed me that my method for dealing with a particular issue was the wrong one ...well, I wouldn't exactly be a rich woman, but I could easily host a weekend at Disneyland for a family of five.  Meals, souvenir hats and sweatshirts included.

A few examples: Once in a restaurant ladies' room, an elderly lady looked down her nose as I helped four-year-old Aaron wash his hands and said, "If you wash his hands for him, he'll never learn how to do it himself!" (Oh. Really?).  Another time, when I stopped in at Target to pick up some diapers and an antibiotic for one of Aaron's many painful ear infections, the checker (That's right.  The checker. At. Target.) narrowed her eyes at my crying child, and said, "If he was MINE, he'd be in time-out right now."  Um...okay.  I'd love to have seen her try it.

Another woman thought it perfectly appropriate to inform me, loudly, that my child was too old for Pull-Ups. 

But the Grand Prize for Stupidest, Most Ignorant and Most Ridiculous Comment of All Time (I'm calling it the S.M.I.R.C.A.T. Award; the acronym is mine, but feel free to submit nominations) goes to the woman who, after being politely informed that the reason for my child's behavior was autism, announced: "Well, then, if he's autistic, you shouldn't be taking him out in public!"  Seriously?! Seriously???  I almost took the *&@!% out with my bare hands.


I suppose my "karma" would be pointless if I didn't put it to good use.  So I've come up with a list of things for my inner "armchair judge" to remember next time I have the urge to criticize someone's parenting, child, or children:

Things to Remember  

the next time someone else's child makes me want to reach over and slap them

1.  That parent and child are NOT having a good time right now.  Don't add to their stress just because you are annoyed.

 2.  That child could have a disability, or be ill or in pain.  The point is, you don't know why that child is upset, not listening, or misbehaving.  Don't assume anything.

3.  Use this mantra: You don't know them. You don't know them. You. Don't. Know. Them.  Lather. Rinse. Repeat until thoroughly cleansed of all other internal commentary. 

4.   Instead of criticism, offer help and/or sympathy if it seems appropriate.  Leave them alone if not.

5.   Save your judgy self for the next time you do jury duty, where it might actually do some good.

Instead of judgment, compassion and a helping hand can go a long, long way.  I learned that lesson the hard way. 

A Word About the "A" Word

"At this point we must ask ourselves why the medical establishment persists in standing by powerless while millions of children continue to receive this diagnosis, and parents endure the heartbreak of seeing their child isolated from the world and given no hope—all because we are mistakenly calling this epidemic “Autism”? Why is it that we as physicians are ignoring that what we refer to as the “Autism Spectrum” is often accompanied by a various range of food intolerances/allergies, viral markers, encephalopathy-like symptoms, frequent ear infections, GI issues, eczema or hives, sensory and auditory processing difficulties, and abnormalities with fine and gross motor skills?"  - Dr. Michael J. Goldberg, M.D., F.A.A.P.; President, Neuro-Immune Dysfunction Syndromes (NIDS) Research Institute; author, The Myth of Autism 

When my mother first pointed out that 4-year-old Aaron, who had been extremely healthy at birth, was plagued by unusually frequent bouts of illness, I, as a clueless first-time mother, immediately shrugged off her concerns.  After all, Aaron's pediatrician wasn't particularly concerned; he would "grow out of it," she said.  Already reeling from his recent autism diagnosis, I was desperate to believe there was nothing else truly wrong with my precious baby.  Still, at only 3 months old, he'd had one of the worst cases of thrush his pediatrician (a different one) had ever seen ("This actually isn't the worst case I've seen," she'd remarked; implying, of course, that it was pretty close).  Beginning at about 6 months old until about the age of two, he'd embarked on a cycle of recurrent ear infections (treated with rotating rounds of antibiotics)every 6-8 weeks.  There were upper-respiratory infections; flu; a nasty, scary case of strep throat;  there were mysterious fevers with no other symptoms; there was chronic diarrhea and episodes of vomiting. 

I'd read about various diets, supplements, and various therapies helping some children with autism; that many of them had food allergies and "leaky gut" and so forth.  Most of the information was contradictory and confusing, and the consensus among pediatricians and the medical community in general was that all this stuff was bunk. Autism was a genetic, developmental disorder and there was nothing that you could do besides accept reality, love your child, hope for the best, and prepare for the worst.  The illnesses were just part of the developmental syndrome; you simply had to accept it.

One morning while Aaron was at pre-school I happened to catch a rather cheaply-produced public-television special called Autism: Out of the Darkness.  Mostly it was a rehash of ideas I'd heard before and had even used, with varying degrees of success: ABA, Floortime, music therapy, the Gluten/Casien-free (GFCF) diet.  But the very last segment, an interview with Tarzana-based pediatrician, Dr. Michael Goldberg...you know that feeling you have when something resonates with you so powerfully that time seems to stop?  That feeling you get when you know, you just know, at the deepest, most organic, molecular core of your being that you have finally found the truth? 

A year after having our world turned on it's head, Dr. Goldberg's words virtually turned it over once again.  He dared to challenge conventional wisdom by saying that the condition being diagnosed today in millions of children is not the same as Kanner's autism of 50 or 60 years ago, and in fact, has many observable differences; that an "epidemic" of a purely genetic disorder or condition is scientifically impossible, and that the autistic symptoms that pediatricians are seeing in their practices in unprecedented numbers can only be the explained by an epidemic of an  underlying disease process.  All of the scientific data he presented pointed over and over again to a serious dysfunction of the immune systems of these children.  The immune system.  Oh. My. God.

I called Dr. Goldberg's office the next day.

That was nine years ago. 

Not every parent will agree with the approach we have taken with Aaron, but for us the proof is clearly in the pudding. While behavioral, educational, and physical interventions have been invaluable and quite necessary, I am convinced beyond a doubt that strengthening his immune system and working to keep him as healthy as possible have been the most important components to Aaron's overall improvement.  "Curing autism" is irrelevant and misleading, in my opinion.  It's about restoring health, hope, and the future to an entire generation of children.

They deserve nothing less.

Rockin' with the Ro-Dog

 "Dogs are very different from a lot of other animals...because they are hyper-social and  hypersensitive to everything we do.  Dogs are so tuned in to people that they are the only animals that can follow a person's gaze or pointing finger to figure out where a piece of food is hidden."
-from the book Animals Make Us Human, by Dr. Temple Grandin, Ph.D., autistic, author, lecturer, and advocate

The wonderful book, A Friend Like Henry: The Remarkable True Story of an Autistic Boy and the Dog that Unlocked His World lit an unquenchable fire under me for months.  The story of how a gentle Golden Retriever brought love, friendship, empathy, insight, and joy to the life of Dale Gardner, a Scottish boy with severe autism, and his loving, but physically and emotionally spent, parents, was one of those "aha!" moments that launched me on a new mission with laser-like focus.  With two cats and a chinchilla already sharing our household, and very little interest in any of them on Aaron's part, it had always amazed me when he interacted with a dog.  Silent, aloof Aaron would suddenly light up, approach it, pet it, talk to it. "Hi, there, big guy," he once greeted a huge Great Dane, with a hug.  Wow.

While Aaron's academic intelligence is on par with, and in some ways superior to, his age-group peers, without a typically-developing sibling to model appropriate social skills, and with a decided unwillingness on Aaron's part to interact with peers unless forced to, outside of school there has been very little opportunity to practice and develop "appropriate" social behavior that "neurotypical" children learn instinctively.  I despaired that he would ever learn to understand the subtle cues of body language, personal space, eye contact, voice level, appropriate topics of conversation, and other important skills.  One of my deepest fears for Aaron's future is that he might spend his life without ever experiencing the joy and comfort of a true friendship.    The solution, it seemed to me, was suddenly very simple.  We needed to get a dog.

But the problem was finding the right dog.  The more I researched, the more discouraged I became.  Not every breed of dog has the right temperament or the right set of inbred characteristics to be a successful one-on-one companion for an autistic child.  This could not be any ordinary family pet.  Much as it pained me, the likelihood that just driving over to the local animal shelter and letting Aaron pick out any one of scores of wonderful, lovable dogs would lead to a successful pairing was becoming increasingly remote.

Organizations that provide service dogs to autistic kids were all too happy to provide one for Aaron -- for anywhere between $8,000 to $30,000.  Um...nope.  Not unless we could find a sponsor and were willing to wait for 4-5 years.

Just as I arrived at the point of putting my dog-search efforts on "indefinite back-burner" status, my mother-in-law, Rita, told my husband, Michael, about a small organization she had just read about called The Hairy Angel Foundation, located near her home in Sedona, Arizona.  The Hairy Angel Foundation breeds, trains and places Golden Retriever service dogs with autistic children, at no cost to their families (although donations are accepted).  The Foundation has no website and no organized publicity program, relying strictly on word-of-mouth.  Rita gave us an e-mail address and a phone number...and a little under two years and lots of correspondence later, at the beginning of October, 2009, we traveled to Sedona to meet, train with, and take home...Romeo the Wonder Dog:: 

Hi!  You talkin' about me?

 I would love to say that bonding between Aaron and Romeo was obvious and immediate, and that there were huge changes in Aaron as soon as we got home.  Really, I would...but I would be lying.  Or wishful thinking.  It was clear that Aaron was very pleased with his new dog, but Romeo is big, even for a Golden Retriever, and at only a little over one year old, a very...spirited boy.  Aaron was intimidated and overwhelmed those first months and gave Romeo a wide berth -- sometimes even avoiding him altogether.  Mike and I talked late at night about our disappointment that Romeo's arrival, in spite of the added love and laughter he had brought to our home, hadn't turned out to be the miracle we had hoped for.

Little by little, though, Aaron's reticence with Romeo has faded.  After 18 months of having Romeo with us, the obvious affection between the two of them is palpable.  Aaron pets and plays with him, talks to him, hugs him, feeds him, refers to him as "my best friend" and "my four-legged brother;" and even expresses concern about about Romeo's health and comfort.  Sometimes they lie down quietly together, facing each other side by side, Aaron with his arm across Romeo's torso, and just bask in each other's company.

True friends, indeed.

Romeo (front) with his litter-mate and fellow service dog, Dulce, who was placed with another boy that we referred to Hairy Angels.

Sonic and SuperBoy!

Gotta love autistic kids and their quirks and obsessions, right?   In Aaron's case, characters like Thomas the Tank Engine and Buzz Lightyear, and a fairly precocious aptitude for computers, puzzles, reading and math, made up somewhat for deficits in communicative language, social skills, motor planning, and pragmatic skills.  The fact that Thomas and Buzz entranced him made them excellent teaching and modeling tools when conventional modeling and teaching failed.  But in December of 2004, our family experienced a seismic shift of epic proportions:

Aaron received a GameCube video game platform.

And our lives were never the same.  The the music, dialogue, and characters of Sonic the Hedgehog, and later, Super Mario Brothers, became (and still are) the official soundtrack of our household.  Although Aaron has since added Pokemon, MegaMan, The Legend of Zelda and the Wii and the Nintendo DS to his video-game lexicon, I have a feeling that Sonic and Mario will forever be his first loves.  Annoying and ubiquitous as they can be, a child's obsessions can become invaluable springboards for learning, creativity, social skills, and even discipline, so long as some kind of balance can be maintained.  And therein lies the rub -- finding balance with an uber-obsessed autistic child is a daily challenge.  Man cannot live on Sonic the Hedgehog alone, but Aaron would certainly like to try!

Behold, Aaron's first original computer animation, conceived, written and executed by the boy himself (with Dad's help) in 2008:

Before...and what came After

When Aaron was younger, I tended to mark time by using what I call the "Before and After" Timeline.  "Before Diagnosis," or "B.D.," if only because I can't pinpoint the exact day or time when my bright, responsive, smiling little boy; the one who met all his first-year milestones right on time (early, in some cases), began to slowly slip away from us; retreating into a strange, silent world where no matter how desperately we tried, we couldn't reach him.  Even though there were a few minor clues very early on that nudged gently at my intuition, the change was so subtle, so gradual that even when the niggling worries at the bottom layer of my consciousness attempted to claw their way to the surface, I still managed to rationalize and banish them back under to their dusty, unexamined little corner of my brain.

 Aaron, Before

I have a clear memory, however, of the day when everything finally came streaming out of Pandora's box and refused go back in.  It was at the park; Aaron was 17 months old.  There were other children about his age, climbing, sliding, squealing, laughing and interacting with each other while Aaron sat, his little body turned away from the other children, his eyes and face nearly expressionless, watching sand sifting over and over through his fingers.  It was a moment of such utter, crystal clarity; the internal confirmation and acceptance that something was simply not right was so stark, so true, and so final that I felt the hair on the back of my neck standing up.  But I was nearly alone in my belief; family members (except for my husband) and friends told me I was being "overprotective" and "over-worried;" doctors and therapists told me to go home, stop worrying and bring Aaron back after he turned three.  So, as long as there was no official reason for Aaron's delays and differences, most of the time I could live in my bubble and pretend everything was normal and fine.

That was Before.

When the diagnosis finally came at the age of three, the bubble permanently burst.  I spent two weeks crying non-stop; then I got up, dried my tears, rolled up my sleeves, and planted myself in front of my computer.  There was no more time for tears.  I had work to do. 

Thus began the A.D., After Diagnosis.

 Aaron, After

After a few years of After; after Floortime, speech therapy, IEP meetings, and especially the help of a brilliant, passionate, cutting-edge pediatrician, I came to understand that the Before/After differentiation is actually meaningless.  I had wanted so desperately to go back to Before; before Aaron slipped away from us; before being slapped with that stigmatizing, isolating, and artificial label.  But gradually it came to me: there is no point in dreaming about before, because there isn't, will never be, any going back.  There is only going *forward* and figuring out the best way to play the hand we've been dealt.

 The more I learn and understand about autism (or rather, the immune dysfunction and inflammation that leads to the disordered neurological symptoms that are called autism) -- the more I see him gradually coming back to us: the dark circles under his eyes gone, the flat affect and dullness replaced with brightness and understanding; his words, his sense of humor, his ability to empathize, his spark, all returning -- the more I understand that ultimately, "Autism" is a word we need to use when it is helpful to Aaron, but never, ever to define him.  Autism is not what Aaron IS; it is something that he HAS.  He is the same child, the same human being he has always been.

If life is made up of choices, then I choose the realm of possibilities: What Is And What Can Be.  And that's a healthier, happier place than the doldrums of Before and After.

 Aaron, 7th grade, 2011

Why Pluto?

Why, indeed. Pluto -- the remotest object in our solar system; the little planet that suddenly wasn't -- Pluto is a perfect metaphor for what our life became when, just after he turned three years old, my son Aaron was diagnosed with Autism Spectrum Disorder. The moment those words were pronounced, our beautiful, affectionate, smart little boy; the one with the big green eyes, curly blond hair, sweet smile, and ostensibly promising future, suddenly...wasn't. It felt that way, anyway. Our hopes; our dreams; our exciting plans...smashed to smithereens and replaced with "experts" who told us there was little they could do to change his prognosis. Prepare to eventually have him institutionalized, one said. We found there were very few easily accessible resources; those we did find often withheld vital information (government agencies seem to have an unwritten "Don't ask, don't tell" policy -- saves on costs if parents don't know everything their children are entitled to), and either couldn't or wouldn't answer most of our questions. Long-time friends retreated from us; family members, while loving, still didn't get it...and we quickly found ourselves relegated to a cold outpost at the end of the societal universe. And there's no restaurant.

Unless you open one yourself.

Which, figuratively speaking, is what we did. Ten years later, Aaron is not yet fully recovered-- and we don't know if he will ever fully recover -- but after years of exhaustive research, knocking on doors, medical treatment, patience, persistence, a wonderful dog and a huge helping of love, he is healthy, bright, talkative, and doing a thousand things the "experts" said he never would.

This is not a "cure" blog; rather, it is a record of our adventures and misadventures on our journey back from the brink of exile.

Cheers.