There Oughtta be a...

Most people who know me well, know that I am not a fan of government.

Most laws of public policy -- no matter how well intended -- ultimately create more problems than they solve. All one needs to do is to look at how Prohibition, the "War on Drugs", "Three Strikes," No Child Left Behind, the creation of the Federal Reserve, and others, create criminals, crime, and social problems where none existed previously, filling prisons to overflowing with mostly non-violent offenders. Very few laws on the books today actually protect people. Most laws have one (or both) of two purposes: to increase government power and control over ordinary citizens and reinforce their dependence on it, and to enrich and empower those who benefit most from governmental power: namely, the Corporations.  Whose interests do most lobby groups represent but those of the big corporations? Who heads the government agencies supposedly created to protect the public, such as the FDA, Tobacco, Firearms and Alcohol, USDA, and others? Former executives of the corporations they purport to regulate. Who suffers when the FDA won't approve a foreign-made medication because the US pharmaceutical lobby blocks it?

 It doesn't take much imagination to guess whose backs are getting scratched, and it sure isn't ours.

Talk to any currently practicing physician about the long-term ramifications of "Obamacare," and you will learn that it will create a health-care nightmare far worse than the one -- and I do acknowledge it is a nightmare -- that it is intended to fix. Especially for those of us with children on the Autistic Spectrum, who often have to resort to going outside the parameters of what is currently considered "conventional" medicine to find effective treatment for our children. I've gotten more than an earful -- from more than one MD -- on how our kids will get lost in a medical system that won't treat them until they develop lupus, MS, leukemia, diabetes, and other serious autoimmune conditions because doctors will no longer have the freedom to practice medicine as they deem appropriate -- thus making those who think "outside the box," those who partner with parents and patients in their decision-making process, and who ask the deeper questions that challenge "conventional" practices...criminals. As a parent whose child was essentially ignored by "conventional" medicine but helped by "mavericks," that prospect fills me with unabashed terror.

But I digress!  I'm not here to post an anti-Obamacare diatribe. I'm actually going to celebrate one of government's own members, Rep. Bill Posey, who recently spoke with passion and clarity about what we are faced with as the rate of autism diagnoses continues to skyrocket unchecked:

 I must concur with the experts who have been willing to speak out, that the epidemic increase in the rates of autism are not a 'genetic' epidemic. Indeed, you don't have genetic epidemics. While there is likely a genetic component to many who have been diagnosed with Autism, we must seriously consider that there are likely several key factors in autism. 

Also, to some who have suggested that the increase in Autism is due to better diagnosis, you don't go from 1 in 10,000 to 1 in 80 in three decades due to better diagnosis alone. And, if that were the case, where are the tens of thousands of autistic adults in their 40s, 50s and 60s? While better diagnosis may be a factor, common sense says there is a real increase and something is causing it.

And this:

I was pleased to participate in a November 2012 House Oversight and Government Reform hearing on the Federal Response to Autism. That was one of the most attended hearings I have participated in since coming to Washington in 2009. Indeed at this hearing it was standing room only, and overflow rooms had to be used to accommodate the public. This was a much anticipated hearing from many parents of children suffering from Autism who want clear and unbiased answers to questions surrounding the epidemic. 

I, like many in Congress, were frustrated with the lackluster response from the federal witnesses, particularly the CDC witness that was evasive and took more than five months to respond to the Committee's questions. The responses that finally arrived this month were incomplete, often evasive, and showed a complete lack of urgency on the part of the CDC. I was also disappointed that the federal government witnesses did not have the courtesy to remain at the hearing to listen to the testimony of the public panel representing non-profit organizations and academic institutions focused on Autism and Asperger's Syndrome.

I know my fellow voluntaryists may look at me askance as I say this, but since it is highly unlikely that these draconian entities will be abolished in our lifetime, and if we have to live under a system that creates crimes and criminals, let the laws at least make criminals out of those who actually perpetuate harm.

UPDATE! 9/15/13:

The next round of hearings has been scheduled for November, 2013.

The Sweetest Farewell

Last week, we said goodbye to our third beloved pet over the space of one year. This time, it was our tiny, 18-year-old tabby cat, Samantha.

Samantha was with us even before Aaron was born. Rescued about 16 years ago after a hardscrabble life on the streets, she was such a feisty, tough customer, she could scare the fur off our Golden Retriever with little more than a hiss in his direction. Indeed, Romeo would literally back out of any room if she was in it.

From the time we brought Aaron home from the hospital, Samantha was NOT his biggest fan. She took one whiff of the tiny infant in the carrier and slunk off, no doubt huffing to herself. And the non-relationship didn't change until the last year of her life, when she occasionally allowed Aaron to pet her or lie down next to her and talk to her. Even so, though, when it became apparent over the last few days of her life that the time to say goodbye was rapidly approaching, Aaron's reaction was disturbingly indifferent. When I told him we would have to take Samantha to the vet to be "put to sleep" soon, his response was, "Sweet! Now we can get another dog -- and another cat!" Yikes. It's moments like that that make me wonder if the "empathy chip" will ever work properly.

Imagine my surprise, then, last Tuesday when the moment finally came, Aaron came down the stairs, sat down next to her, petted her gently, and with great sincerity and feeling, said the following:

"Goodbye, Samantha. I love you...I'll always love you. I'll never forget you. I hope you have fun in heaven."

Then he kissed her sweetly on the head, and as I stealthily wiped my tears away and proceeded to put Samantha in a padded box for the ride to the vet, he headed back upstairs to his waiting video game.

I have to accept that Aaron may never be the type of boy who wears his feelings on his sleeve. But when the chip works...it works.

Samantha 

1995-2013

They're Still In There

No, your eyes do not deceive you. After a nearly two year hiatus, I am updating my blog.

I have no real excuses other than to say that I have been badly blocked. Not for lack of things to say, but for lack of desire to say them...here. In this venue. For some reason, the moment I log on to Coming Home from Pluto and pull up the "New Post" template, my mind goes blank and my fingers won't cooperate.

Until today.

My friend Marcia Hinds has been one of my personal heroes since Aaron was four years old. Her son, Ryan, is now 24 years old. He has a Masters' degree from Santa Clara University in Engineering Management. He now works for Boeing. He lives on his own. Drives a car. Has friends.

When Ryan was four, no one thought he would ever be able to hold a conversation, let alone the high-powered job he holds today. Except for Marcia. She knew then, as everyone can see now, that the happy, bright, responsive child; the one who met every milestone in his first year or so; then gradually regressed, his eyes losing their sparkle and drifting off into the middle distance as he lost all his words and skills and eye contact...was still in there. Marcia knew her boy wasn't born with "it." Something happened to him. She was going to find out what, defeat it, find him, and get him back.

And she did.

Marcia Hinds is my go-to inspiration on those days -- and I do have them -- when I feel like throwing in the towel.

The world needs to know: Our kids are not defective. They're still in there, intact, loving, creative, smart and beautiful. Fight for them. Don't give up. Never give up...even if sometimes it feels like a great idea. They're depending on us.

Marcia has written a book telling Ryan's story, I Know You're in There: Winning Our War on Autism, to be published soon. She's also graciously given me permission to post the following article:

AUTISM: THE REAL STORY NEEDS TO BE TOLD

By Marcia Hinds

Imagine a world...Where children with recurring fevers, unexplained seizures and chronic rashes are denied medical treatment.Imagine a world… Where increasing numbers of children show up in our schools without speech, lost in their own worlds and have no hope for the future.Imagine a world...Where children with severe sleep disorders, limited speech, nutritional deficiencies, stomach problems and severe allergies are sent to psychologists and psychiatrists.  

When you have a child with autism, you don’t have to imagine anything. If your child is one of the 1 in 50 diagnosed with autism, this is the world you live in! How can we just stand by and let this happen?

Some say the increase in autism is because of better diagnostic tools and awareness. Don’t believe it! The increase in autism is REAL!!! No one can MISS a child with autism. They have epic meltdowns in the grocery store and throw award-winning tantrums in restaurants. They do and say strange things. And some never say anything at all, including “I love you.” 

And yet there is hope… The solution to the autism crisis seems complicated, but in reality is simple if you know the truth about autism.  Autism is a complex medical condition caused (in most part) by an immune system that is not working properly. 

My son, Ryan, was diagnosed with autism at age four. I was told there was nothing I could do. The psychiatrist who was a “leading authority” on autism said my son would probably need to be institutionalized. 

But she was wrong.

Ryan’s recovery helped me realize autism is a treatable and changeable condition.  Treating him medically took time and the road was long and difficult. It felt like forever and our family made many sacrifices as well as mistakes along the way.  But the only institution Ryan ever ended up in was the university where he graduated Magna Cum Laude.  NASA paid for most of his master’s degree after he completed a paid internship with them.  Today at age 24, he works as an engineer at Boeing, when he is not surfing or going out with friends. 

We need to stop looking at this backwards. Autism is not the cause of the many medical conditions our children suffer from. In reality, it is the other way around. The problem in the function of our children’s immune systems results in autistic symptoms. Autism needs to be taken out the psychiatric journals and put in the medical books where it belongs.  Doctors who know how to treat autism medically understand that once the body works, the brain follows.

Unfortunately, there is no easy fix or magic bullet to heal our children.  It takes time to repair a child’s compromised immune system. Once the body has healed, they still need focused educational and behavioral interventions to catch up on what they missed when they were too sick to develop typically. 

Autism awareness is no longer enough! We need a doctor on every corner who says I know what this is and I know how to treat it. The world needs to realize our children are not broken. They are sick. And they can get better. With proper medical treatment combined with focused rehabilitation, many children have already made the long, difficult journey to recovery. If these children can be healed, more can be helped. We no longer have to sit and watch helplessly while our children slip away. 

Don’t believe all you've been told. You know that your child is ill. You've caught a glimpse, however brief, of the loving, vibrant child who is hidden behind the veil of autism. You know they are in there. We must join together to give our children a future. We can agree that this is a medical and treatable condition. This must be our message; unwavering, unapologetic and most of all, unified. The infighting among different groups about what causes autism and how to fix it must stop. This is the only way we will win the war on autism. We must never give up until we find the answers for our children!

 Please share this article with anyone who might bring attention to the issue that children with Autism are not getting proper medical treatment. You have my permission to reprint this article.

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: