Baby C (and friends)

Some of you have been asking how Baby C is doing these days. I appreciate your questions and concerns. Many readers here know that Baby C was determined to be autistic back in August. At the time, even though it was the second such diagnosis we had experienced as parents, and even though we are generally at peace with autism and all that goes along with it from a young family's perspective, and even though we were much more 'equipped' with information than the first time around, we still had great concerns about Baby C and his outcome.

I, for one, fully realize that autism is a different experience for different people. Some are more significantly affected by the disabling aspects of autism. Some are in environments that, combined with their autistic characteristics make things difficult. There are rough spots over the lifespan. Some have challenges or discomforts that their communication differences make very difficult to convey and to request help for. Some have co-occurring cognitive or physical disabilities. Some just frankly want to be neurotypical. The list goes on and on. Autism is not "all good", and as parents my wife and I worry all the time about Baby C and what challenges lie ahead for him. That goes for both of his brothers too, as with any parents and kids, but for Baby C and his older brother J, we have the added concerns of autism.

As of now, Colin is just a happy, growing boy. He has strong likes and dislikes, he is kind of obnoxious most of the time due to pretty constant 'loudness', and his happy moments shine brightly. During his first 12-16 months of life, there were precious few happy moments. He was, quite simply, the most challenging child I have ever met, seen, or even heard of. He almost brought us to our knees with his perpetual, um, er, .... discomfort with the world around him. It is a tremendous relief to see the improvement in his demeanor and enjoyment of himself and our family.

So here are a few pictorial updates of little Baby C (who is not really a baby anymore).

Fall comes late in Southern California, and these leaves just fell from our Mulberry tree over the last three weeks. Baby C loves when Mom rakes them into a leaf-pile!

C just had his 2nd birthday this past week! In our family, on the first birthday, the baby gets to "dig in" to their birthday cake with full gusto and no rules. In the case of Baby C, he showed utterly no interest in his cake on that first birthday. So we decided to let him have a chance at Round 2, and he certainly appreciated the offer. Note how our resident canines uderstand the concept of 'positioning' as they hope for some scraps to hit floor. Believe me when I tell you that their patience is rewarded more often than not.

Speaking of the dogs, any mention of Baby C would be incomplete without also caling to attention his best buddy - Marley. Marley is the Rottweiler/Lab mix on your right in this photo. He is still very much a puppy, albeit a 100-lb+ puppy. And he still tips the scales a few pounds lighter than old man Chance, who is often seen lying down as in the photo above. Marley and Baby C play together all day, and are best buddies. For a picture of when they first met, look here.
This photo shows Baby C surrounded by some of the wonderful people at REINS, where he is the youngest rider they have ever had. After a period of adjustment, he seems to have reached a point (on most days) where he genuinely enjoys riding horses. In case you are wondering ... that's a pretty small horse. And this picture was taken while we were still fighting the 'helmet' battle with him.

Buyer Beware - ACAB

Here's a "press release", issued on that highly respected stalwart of news wire services, "ChiroEco.com", that trumpets:

"...a world-class board of advisors that bring extraordinary expertise concerning autism spectrum disorder care and represent the many different facets of recovery. This board oversees “Hope for Autism” the first BioNutritional Care certification program ever designed specifically for chiropractors."

This "board of advisers" is the board of one American Chiropractic Autism Board. Sounds very official! How encouraging!

Or maybe not ...
As a friend recently put it, "Health Care Fraud is a booming business, and the bad guys know all about autism."

Let's begin with a quick trip over to the American Board of Medical Specialties website, which is the "gold standard" for physician certification. If a "board" is not listed there, its not legit. A quick search for 'American Chiropractic Autism Board' and 'ACAB' turns up ...... nothing! So let's understand at the outset that we are dealing with a "...world-class board of advisors..." that has no regard or respect for established accreditation/certification with mainstream medical standards of practice. But that's nothing new for the cottage autism "cure" industry, is it?

So the ABMS search came up empty. How else can we validate the credibility of this seemingly remarkable group that is in a position to " [meet] ... the demand of parents who are desperately searching for a physician to help their child recover;..."
Conveniently, the press release has listed on the bottom a link to their very own website! A quick perusal unveils their "board members", which turns out to be a veritable pantheon of purveyors of quackery. To wit:

• Andrew Moulden, M.D., Ph.D. (watch about 2 minutes of this video - recorded at a 9/11 conspiracy theorist march, no less - for all you need to know about this guy).
• Boyd Haley, Ph.D., the man who has concocted and patented a home-tested chelator to market to parents of autistic children.
• William Shaw, Ph.D, who is director of the Great Plains Laboratory. This is the primary "mail-order" lab that generates deeply misleading and flawed reports on heavy metals contamination among autistic children, primarily by comparing "provoked" urine samples to "standardized" measurements.
• And the "Sisters Tocco" - Mary and Renee. Read on...
  
• Renee is a (surprise!) DAN! doc. Hey, don't they require a medical degree for that? Uh, no.
  
• Mary is an "independent vaccine researcher". She sells a DVD on her website - childhoodshots.com - titled "Are Vaccines Safe?"

Let's review for a minute. What we have here is the ACAB, made up of known hucksters, 9/11 conspiracists, anti-vaccine zealots, DAN! docs and other alt-med-gurus, backed by those who operate the bogus testing labs as well as someone who sells a home-brewed chelating agent masquerading as an FDA-approved "nutritional supplement" (OSR by Boyd Haley). Can the rabbit hole of quackery get any deeper than this? Every single one of these players has something to sell you. Speaking engagements, lab tests, DVD's, online consultations, BioNutritional "Hope for Autism" programs, supplements, chelators, certifications. And, notably, not one single peer-reviewed, documented case of even one single autistic child benefitting in even one single way from anything they sell! Its a grand scheme, and who is falling for it? Look no further than the original press release itself, as it so callously labels its target market:

"The benefits of being a certified “Hope for Autism” doctor include:

• Having the solution to the number 1 healthcare crisis affecting children;

• Meeting the demand of parents who are desperately searching for a physician to help their child recover;

• Being a part of the movement of chiropractors who are dedicated to healing our nation; and

• Increasing patient base complimenting autism care and chiropractic, allowing for the best opportunity of recovery."

Unbelieveable, isn't it? Un-freakin'-believable.

Picking up the pieces here, let's just take a quick look back at the purpose of the press release to begin with (believe it or not, we haven't even discussed that yet).
The purpose is to advertise a 3-day seminar. This seminar does NOT include the words 'autism', 'chiropractic', 'nutritional', or even 'health' in its title. It is actually called "The 2009 International Vaccine Risk Symposium". I'm not making this up - its right there on the press release.
The final two days of the 'symposium' will be spent training chiropractors on the newly minted "Hope for Autism" (HFA - nice pun, eh?) certification that promises to:

"... equip chiropractors to responsibly address autism, ADD, learning disabilities, and other neurological developmental problems using BioNutritional Care."

Just two days, and they are miraculously suited to cure children of autism and other neurological problems!

So the next time you see media reports offering a 'balanced' view of the vaccine controversy, please consider that these are the type of people that populate the anti-vaccine side. This is the sales machine that so actively pursues, to use their own words, parents who are "desperately" searching for solutions. And these are the tactics they use.
It is One Dad's Opinion that this is shameful exploitation and needs to be exposed for what it is.

NIMBY

If anyone doubts the need to expand positive awareness of autism in particular (are you listening, Harold Doherty?), and of disability in general, please read this article from my local newspaper.

It is heart-wrenching to hear quotes from potential neighbors such as:
"We have no guarantee as to who is going to live there and with what degree of mental illness," said Diana Grogan, who lives a few doors down [from a proposed group home in a suburban neighborhood].

Perhaps Diana Grogan should examine precisely what type of guarantee she wants, and what misconceptions about "mental illness" she harbors that make her feel a guarantee is necessary. Perhaps Diana Grogan should consider that her life, too, may be touched by "mental illness", and exercise the same degree of understanding and compassion that she would someday expect others to exercise in her or her loved ones' favor.

There are some encouraging aspects to the article as well. TERI, the organization cited in the article, has been around North County for a long time. I've heard good things about them, and I certainly appreciate the progressive approach they are taking towards promoting independence for those who are involved with their program.

Wii Would Like To Play...

Over the past year, in particular, we have been trying to help J - now 7 years old - to find some physical activities he enjoys. J, like many autistic people, has a limited range of foods that he eats. Though we do what we can to enhance the nutritional value of his diet, and we have employed numerous strategies to reduce the gag-reflex that accompanies so many different kinds of food, J simply does not, at this age, have an ideal diet. J's limited diet issues are exacerbated by another tendency, or characteristic, that it seems to me is also quite common amongst autistics, and that is that he prefers cerebral pursuits to physical activities. We recognize the importance of leading a healthful life in terms of impact on physical as well as emotional well-being, and have therefore been "signing up" J for a range of activities.

Over the past year, these activities have included Tee-ball. This was not a big hit (please ignore the obnoxious pun), though it is difficult to determine exactly why J never seemed to get into it. I can say that his younger brother, T, on the same team, also did not derive a lot of pleasure or interest from it. It may be an age thing. In the summer, we enrolled J in Tae Kwan Do. There, we definitely found something to his liking. The more individual nature of it, as well as the rigidity of the routines and the "demanding" nature of the instruction seems to really jibe with J's mentality. In the Fall, J joined a soccer team. This had mixed results - he enjoyed the practices due to some of the practice games we would play (i.e. Sharks and Minnows), but during games it was not uncommon for him to simply lie down in the middle of the action. The ultra-bright mornings were not ideal for him in terms of light sensitivity, and he could often be found during his "breaks" from action reading thick books in the foldup chair on the sideline instead of cheering his teammates on. Aside from these structured activities, J fully enjoys games like "Monster Tag" and wrestling with Daddy. And he loves a day at the beach, something we can do with regularity during the summer now that he is over his aversion to the movement of the waves. Surfing is definitely on the slate for the little grommet this summer (maybe Dad can learn a little too!). He also loves to swim in our pool, and has been involved in a therapeutic horsemanship program for over three years.
So at this point - at age 7 - J's physical activity and nutritional intake is a mixed-bag at best, and certainly could use some "catching up" to his pretty remarkable academic achievements.

Enter Wii Fit.

When I first read about the Wii Fit and its remarkable balance board, I knew it would be a perfect match for J and the way he derives enjoyment from his activities. As I write this blog, J and his two brothers are around the corner engaging with the Wii system and working up a good sweat doing it!

You see, the Wii Fit allows J - and everyone in the family - to create a Mii, which is a little on-screen mini-me of each of us. Once created, you step on the board and the system takes your height and weight and establishes a baseline BMI (body mass index). It also measures your overall balance and body posture. It then allows you to set short or long term fitness goals, specifically addressing the areas you would like.
Once you have completed the setup, it records your time spent in the "time bank", and also regularly re-weighs and tests balance, updating your progress vs. goals.
The player then picks aerobic (running, hula hoops), strength training, balance activities (ski slalom, ski long jump), and yoga for posture. The more you play, the more different games you unlock.
All of these features are precisely conducive to J's unique way of learning. First of all, it is engaging without being overly demanding from a social standpoint (unlike team sports). It is unforgivingly rigid in its repetitive nature - it behaves the same way each time. This avoids J's sometime-anxiety about variable things. It has clear, easy-to-understand goals, which play to J's learning style. It disguises physical activity in what seems more of a cerebral pursuit with the use of points, stars, levels of achievement, and gradual unlocking of new activities. Frankly, it is an ideal method for J to improve his physical fitness. Interestingly, since beginning this (at Christmas), J has expressed a higher level of interest in eating more healthfully (even though this does not overcome his extreme sensitivity to certain foods and the way they elicit his gag reflex).

I realize that not all autistic children or adults have would be able to play Wii Fit. I also realize that not all families or individuals can own or access one. But the bottom line is this: I can't recommend the Wii Fit highly enough for any individual who would like to help them self or a loved one to improve their physical well-being in a fun and positive way!

Simple Greeting Exchange

I have been, as some of you have noticed, quite absent from the online/blogging/autism community as of late. I realize everyone is busy, but my particular version of "busy" has - to paraphrase a classic Mel Brooks line - hit "ludicrous speed". I hope that soon I'll be able to return some focus to this area.

Still, I periodically come across a really meaningful piece of information or postulation that I feel rounds out my understanding of - or appreciation of - the autistic experience. To that end, I'd like to link to an excellent short piece about The Simple Greeting Exchange.

The writer is one Alan Griswold. Am I the only one who would like to offer this guy an invitation to join the Autism Hub? Dig into the archives of his blog for some excellent reading.

Analogy Works Both Ways

Well ... hello again everyone. Long time, no blog. On with it, then.

In the hubbub of daily life in the D household (and believe me when I tell you that a term that adequately describes our level of chaos has not yet been coined), it is exceedingly and unfortunately rare that focused, direct, one-on-one communication is able to take place.
It is very fortunate, therefore, that my 7-year-old, highly verbal, autism-spectrum son and I have established a new bedtime routine that provides that well-needed time. T, my middle son, is also welcome to join in, but this is a routine that J thinks about now all day long, and simply will not do without. This routine is well known in many households around the world, and is certainly not unique to us. It is ... Bedtime Stories.

To understand why this simple topic justifies a blog entry of its own, one must understand the stage of interest/learning/discovery/passion/focus that J is at right now. I think of him as an intellectual tuning fork in a lot of ways; interacting with him is rewarding (and enjoyable and fun) on so many levels (especially - as many "autism" parents can relate to - being previously told that his likelihood of developing valid communication aptitude is very low) and yet also rigorous by virtue of needing to resonate with his particular and fairly demanding communication style.

Anyway, a few weeks ago I settled into a certain genre of storytelling that is based on modifying fables ("the moral of this story is...") to fit the theme of a young Indian Brave named Redwing. Actually, it began as Redwing - largely due to my ignorance of Native American nomenclature and resulting cliched approach to inventing a name (let alone the Detroit NHL franchise of the same name) - but very quickly changed to a new name.

Me: "This is a story about a little Indian Brave named Redwing. One day Redwing..."
J (interrupting): "But my favorite color is Blue"
Me: "Okay, blue is a great color. I like orange, myself. But this is a story about Redwing and the big archery contest..."
J: "Awww. But my favorite color is blue. Why is Redwing Red?"
Me: "Redwing is his name, but the important thing is that he needs to get ready for the big archery contest! So Red wing decided one day..."
J (interrupting): "If he was blue, then he would be my favorite color, you know."

*pause, as I consider...*

Me: "Once, there was a little Indian Brave named Bluewing..."
and off we went - a tradition was born.

Now we have run into another unexpected issue. J now recognizes when I am using an analogy to his own life to try to create a teachable moment.
Example: We recently took a trip to Hawaii. My wife and Baby C were unable to go, depsite the existing travel plans, due to Baby C's own issues (he was diagnosed with autism in August). J had very significant homesickness issues due to, in his own words, Mommy and Baby C not being with us. After we returned, I adapted a Bluewing story to mimic this set of circumstances. I very cleverly wove a tale about how Bluewing was going "whale-watching" on an island, and how he would be honored to travel with his father and all the fun adventures they would have, etc, etc. At the end of the story, to which he listened with his characterstic stoic intensity, he immediately asked, "Why did you tell a story about me being homesick in Hawaii?"
Hmph.
I explained the value of analogy and how it helps us to understand difficult situations in our own lives, and I think that resonated with him. Because, ever since, he will certainly point out when I am inferring an analogy but he has no real objection to it. In fact, he may have warmed to the idea that maybe the Ol' Man has something relevant to offer his little 7-year old body of wisdom. And I can't help but think of this bedtime story routine as a reasonable extension of Social Stories, which seemed to help J so much from ages 3-5. Social stories presented J with digestible information in the form of a simple storyline accompanied by little pictures (i.e. "going to school" or "visiting Grandma and Poppa"), whereas Bedtime Stories seem to be fulfilling a more advanced set of needs in terms of a budding sense of ethics and morals (Bluewing is a pretty upstanding little Indian Brave) in a format that is easily digestible due to the routine and mutually-agreed-upon format.
All of which serves as yet another reminder that, in many ways, raising a child (or two) on the autism spectrum is not wholly different from raising a typically developing child. A little understanding and acomodation does go a long way...


Tonight, I told J that he needs to tell me a Bedtime Story. That from now on, Tuesday night is the night that he has to 'reciprocate'. Do you doubt his grasp of the nature of the analogy?
J: "There once was an Indian Brave named Orangewing. (big smile; "because that's your favorite color, Dad"). He knew he had to go to work. But he was sick. So he went to work sick, because he always goes to work. "