HappyChucks   For Families Navigating the Autism Waters

I had a chance to attend the KEEN (Kids Enjoy Exercise Now) town hall meeting earlier this week, and I came away from the meeting impressed with the people who are running it and with what they're trying to accomplish. They are absolutely dedicated to their mission, and they have a track record of success. They also have some pretty impressive corporate ties, sponsors, and "friends". Just as importantly, or maybe even more so, is that they know what they are and what they are not.

KEEN is not going to replace your current ABA program, or your other therapies, or your summer school/camp programs. They are not going to attempt to implement a full-scale, follow-the-rules game of basketball, baseball, or soccer. They are not imitating Special Olympics (although some of their athletes have gone on to compete in Special Olympics.)

KEEN is going to provide an outlet for your special needs athlete to burn off some steam, in whatever capacity he/she is capable of. They are going to provide one-on-one support in a semi-chaotic and free-flowing environment, where each athlete will be playing sports of his/her own choice and at his/her own pace. They encourage friendships among the athletes, volunteers, and parents. But mostly, they provide something for the athletes (and volunteers) to look forward to each week, and to enjoy. They provide side effects of increased coordination, self-esteem, and confidence. (and a little respite for parents!)

Applications are being accepted for athletes and volunteers. More info:

When? The program is scheduled to start on March 30^th. It's expected to be on Sundays and run for one hour. Exact times have not yet been determined.

Where? The initial location will be the Boys & Girls Club on 23^rd Ave & Missouri.

Cost? Free to both athletes and volunteers.

Commitment? Athletes will be asked to make a commitment to attend each week, as there will be a waiting list to join. Volunteers will have no commitments at all – show up whichever weeks you can.

Sign up form. as an Athlete or a Volunteer.

More Info? Visit http://www.keenphoenix.org/ for all the details.

I hope to see you there!

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I just saw the most powerful video I've seen in a long time.

Amanda Baggs is 27-years old. She is autistic, and is non-verbal. She performs many of the odd, repetitive tasks that we've all grown accustomed to. And she needs help with simple daily tasks (cooking, cleaning, etc).

But Amanda Baggs is NOT unintelligent. Armed with a Dynavox, a Dell Computer (she types 120 words per minute), and a Sony digital camera that can record video, she shot, edited, and uploaded this amazing video.

8:36 video. The first 3 minutes or so show Amanda and some of her "stims". The remaining 5 minutes show her discussing what she's doing and why.

I saw this video on an article at wired.com. The article talks about the video, and Amanda, in much greater detail.

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I read an article this morning from Dr. Ann Milanese, director of Developmental Pediatrics at the Connecticut Children's Medical Center in Hartford, who highlighted some great points with regard to how therapy can be more effective.

1. Children are children first, and they have symptoms of autism second.

Think about that for a minute. We push Calvin to work as hard as he can, and he's made great progress over the years. But we also realize that some of his progress has probably come from simply growing up; all kids can do more at 8 than they could at 4, right?  Also, just because a kid has autism doesn't mean he/she doesn't have fun - kids like having fun, and fun means different things to different kids.

2. Autism is a spectrum disorder with a good deal of variability in the way the symptoms express themselves.

I'm sure most of you already know this... Duh. But I think this point is still lost on the public at large. Autistic kids have different strengths and weaknesses, and are all unique individuals, just like typical kids. There isn't a one size fits all description available.

3. Therapy is more likely to be successful if it's fun. I think Dr. Milanese's point is that, while you need to work to develop weaknesses, no kid is going to prosper if they're not having fun.

We used therapy, especially in Calvin's early days of strict ABA-style, to hammer on his weaknesses. Basically, here's the program – now let's work our way through it (using rewards/motivators and breaks when necessary.) Calvin made a lot of progress under this program, but it's true that his most successful times were when we could figure out how to incorporate something he enjoys into the process of working on something he didn't. Even today, we try to mix hard work with play. Whenever we get greedy and demand a lot of hard work, all in succession, we'll also see lots of avoidance behaviors.

I don't think that's very different from anybody else, either. Our youngest, Jonas, doesn't enjoy work for work's sake. But if you get him playing an educational game he'll soak in every last bit of knowledge. I'd have to say I'm the same way – I'm older and have the discipline to force myself to work on improving my weaknesses, but I get a lot more out of it when it's fun!

People are people. Kids are kids. And autism can make learning and communicating a challenge...

Deal with it. Hit it hard. Make it fun!

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KEEN (Kids Enjoy Exercise Now) is a non-profit organization which offers children of all ages, and with all disabilities (including autism), the chance to participate in various sports in a fun and encouraging environment. And best of all, it's FREE to the participants & their families. KEEN has several programs in the Washington DC area, and have recently added branches in Chicago, Los Angeles, New York, and a few other cities. Beginning next month, they'll add Phoenix to their list.

8:43 KEEN video

If you're interested in learning more about KEEN in Phoenix, you can visit their website, or you can attend a Town Hall meeting next week:

What:	A town hall meeting to learn more about KEEN and how this unique program will soon be available to kids with disabilities in the Phoenix area.
Who:	Parents, volunteers, agencies, organizations, and other interested parties.
Where:	Sonnenshein Nath & Rosenthal, LLP 2398 E Camelback Rd, Suite 1100 Phoenix, AZ 85016
When:	Tuesday, February 26, 2008 6:00 – 7:30 pm
RSVP:	If you plan to attend, or would like more information, please call by Friday, February 22 at 602-508-3939, or email at info@keenphoenix.org

We've had some mixed success with programs like these in the past, but I'm looking forward to meeting the KEEN folks and giving this a try. I'm amazed that they've been able to do all this without charging for services.. We've met a few people and organizations over the years who have great intentions and want very badly to make a difference, but funding, volunteers, and resources often becomes too big an obstacle to overcome, and they eventually either change to a pay-for-service model or their services and energy deteriorate over time. The fact that KEEN has some history and has been successful in other locations is giving me reason to hope.

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This is a very serious question, and I think the answer lies in 2 different parts.

1. What is there to gain (or lose) by testing? If it will make a difference in the services available to your little one, it might be worth your while.

2. How fair is the test? If the test can be administered in a fair manner, then it might be worth considering.

Our local school district wanted to test Calvin a few years ago, and we almost shouted NO! in unison.

First of all, their assessment of his abilities was the lowest of everyone he worked &/or played with.

Secondly, there was nothing to gain by testing – it didn't matter if he did really well, since they had already proven they couldn't teach him. But if he did not score well, they would have the option of moving him into a lower-functioning class where he wouldn't need to be "taught".

Thirdly, they couldn't administer a fair test. They agreed that he had (has) apraxia and is non-verbal, yet they weren't willing to make accommodations for the test. Everyone else who worked with Calvin (ABA, Speech, OT, PT, NMT, and friends and family) would attest that he knew everything that was being spoken to him. He just needed to communicate via alternative communication methods, such as PECS (Picture Exchange Communication System), word cards, or Facilitated Touch.

This is one of those questions that doesn't have a right or wrong answer, per se. Just think about who wants the test, and why, and remember that the results will become part of your little one's permanent record...

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We had some exciting news last week, as the Arizona Autism Insurance Bill (officially known as SB1263, and commonly called Steven's Law) passed through the Health & Appropriations Committee by unanimous vote. This was no due to the large support shown by our local parents, friends and families, who turned up en masse to the candlelight vigil and to the committee hearings at the capitol. My guess is that the large support for the bill helped the committee to realize the long-term benefit of getting more children more therapy, and at an earlier age.

The bill has yet to be passed into law, but the unanimous vote is a good sign.

Here are some additional facts, articles, and opinions (mine), in no particular order..

Highlights – beginning January 1, 2009, insurance companies will be required to cover Speech, OT, PT, ABA (behavioral therapy), Diagnosis, and Psychiatric/Psychological care.

AZCentral.com's coverage. Here's an article describing what went down last week.

State Senate. Here's a link to the bill's fact sheet from the State Senate's web site.

Loophole – Large Employers Only. This bill will mandate coverage for group plans for employers with more than 50 employees. That's a terrific start, but Arizona's economy is driven by small businesses – there will be a very large number of families who are unaffected by this bill. (mine included. As a self-employed Realtor, I don't currently have a group plan for more than 50 people.)

Restricted Coverage. It's great to see coverage for the basics (speech, ot, pt, aba), but some of Calvin's biggest gains have come from the 'non-traditional' providers: Neurologic Music Therapy Services of Arizona has been our rock – Calvin's most important hour each week since he was 2 years old; dieticians & allergists, biomedical, vitamin supplements, and homeopathic remedies will also not be covered.

Overall this is a gigantic win for both the ASD community and the State of Arizona. I do hope, however, that over time the coverage is expanded to include more families and more treatments. I also think we're going to see a change in the supply & demand equilibrium when this goes into effect next year, with some short term pain but long term benefits, but that's a topic for another post...

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Every parent wonders what their children's future is going to be like. Every parent of a special-needs child wonders about it even more, and often with angst.

Well, here's a story with a good ending. (hat tip to Judith at Autismville for finding this.)

Randy Lewis, a senior executive at Walgreens, has a son with autism, and knows not only that his son is capable of more than most people give him credit for, but that he will have a very hard time finding opportunities to prove it. Randy was able to use his position to tear down barriers, and to give people a chance to do some real work.

Click below to watch this 3:13 video.  (link will open ABC News site.) Good on Randy, and good on Walgreens. That's a company doing the right thing.


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A couple of weeks ago, on January 31^st, ABC aired the pilot episode of Eli Stone – a fictional show featuring an attorney who helps a family fight (and win) a case against a pharmaceutical company, convincing the jury that a mercury-based preservative in a vaccine caused the child's autism. Since that time, the war over vaccines has rekindled its flames.

Many people in mainstream media and medicine dismiss the immunization link out of hand, as if anybody who still believes there's a link in this day and age is either uneducated, anti-establishment, or a parent looking for someone to blame for their problems. Here's an article published yesterday in the Great Falls Tribune (Montana), written by the medical director of a medical center. It's a very typical response from a medical director.

Personally, I don't buy Mr. Mainstream's position. There are too many factors in play which lay seeds of doubt..

Money. The amount of money at stake is almost unfathomable. Not only hundreds of millions of dollars in revenues, but billions of dollars in potential liability. Any change to the status quo could be devastating.

Politics. Big Pharma. Health Insurance. Physicians. The Center for Disease Control. Congress. Any change will have winners and losers, and nobody wants to lose, so they all lobby for the status quo. Not to mention the political gridlock.. Remember how hard it was just to get Casual Dress Friday approved at work?

Control. The CDC wants the general population to be immunized for major diseases – no doubt a good idea. The one time in everybody's life when they are most likely to see a doctor at regularly scheduled intervals is when they are babies. The existing guidelines work very well in this regard.

Perfect Effectiveness? Everyday we read about misreported clinical trial results, or deadly side effects, or ineffective drugs. Yet we're supposed to believe that giving an infant/toddler dozens of vaccines is 100% safe, 100% of the time, for 100% of the children, with no possible side effects or connection to autism?

Timing. Shortly after the vaccinations started containing multiple vaccines in each shot (along with a preservative), the cases of autism began their meteoric rise. Yes, I'm sure there are lots of other things that have changed along the way. But is there anything else that is given to every child, and with such a close correlation in time?

Personal Anecdotes. How is it possible that there are so many people who never knew anything about autism, and were raising a perfectly happy and healthy toddler who regressed significantly, and was ultimately diagnosed with autism, the week after receiving a vaccination? I can't believe that these people all banded together and decided to tell the same lie.

This country's legal system is based entirely on "burden of proof" – if a jury has any doubt whatsoever, the accused is set free. Here is a case where there is LOTS of doubt; why can't we agree that it's not 100% safe, and that it needs to continue to be studied?

Kim Stagliano, managing editor of www.ageofautism.com, wrote the best article I've seen so far offering the opposite opinion of our Montana medical director. I recommend reading her post What if Autism Were Contagious? It's a great question – how do you think the CDC would react, and how aggressively, to a new epidemic which was as debilitating and wide-spread as autism? (if you have any doubt, think about what happened when HIV hit the US in the late 1980's...)

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Last fall Cheryl & I made a resolution to find ways to conserve energy around the house; our goal was a 10% reduction in usage, and if we could combine that with some time-shifting, a 20% reduction in our electricity bill.

One of the first things we did was to change the highest-use light bulbs to Compact Flourescent Bulbs. I was nervous about this at first, because I remembered fluorescent bulbs from 20 years ago being noisy and having a weird glow. But that's not the case anymore; I actually like the CFL lighting better than our regular bulbs.

Now we have other concerns – these bulbs contain mercury.. What do we do if a CFL light bulb breaks? And, how do we dispose of them when they burn out without filling the landfills with mercury?

I normally don't write about the same topic on two different blogs, but today I discussed these 2 questions in detail on my real estate blog, and rather than repeating everything, I thought I'd link to it here.

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Does the apple fall far from the tree?

I recently read an article on nytimes.com which talked about families using a child's ASD diagnosis to make sense of family traits – idiosyncrasies the parents or grandparents had or have. (read the article online or as a pdf document).

I think every family does this to some extent, even families without any diagnoses. "He's independent, like his mother," or "She's very social, just like her dad." But it's probably done in more detail with families dealing with ASD, partly because we're looking so hard for answers, and partly because we've been trained to analyze behaviors.

Personally, I didn't know anything about varying degrees of sensitivity, until Sensory Integration was part of Calvin's OT diet. Now it's easier to explain why Cheryl likes deep-pressure massages, and doesn't seem to mind if her socks are bunched up, yet I can't stand massages at all, and get annoyed when my clothes twist or bunch.

It turns out that Cheryl & I are both "normal", but she falls near the Hypo end of the spectrum and I'm closer to the Hyper end. And now that we have 2 kids, it's obvious to see that both of them border on the edge of normal – Calvin used to be Hypo-sensitive but has made great progress, and Jonas can get upset over something seemingly very small, not quite hyper-sensitive, but close.

It's interesting to think about.

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Life can be a grind sometimes, and it's easy to get stuck in the day-to-day minutiae. This can be even more true for families with kids on the autism spectrum – sometimes just getting through a day is all you can hope for! It's those days in particular when I like to take a step back and look at the bigger picture of how much progress Calvin has made.

When you get caught up in the mindset of looking at each day as a success or failure, the failures can outweigh the successes, and it can drive you crazy. "He had a good day today. He had a bad day today – meltdown. He had an ok day. He had a bad day – wouldn't work. He had a good day. He had a bad day – no sleep." Etc. Etc. It becomes very hard to see any progress, and the bad days can wear you out.

I plotted "Relative Happiness" against "Each Day". Notice the highs and lows from day to day. ps – this is a hypothetical graph (I haven't been charting happiness every day!)

As time passes, you might find that he has more good days in a row before a bad day, or that the bad days aren't quite as bad as they used to be. But if you're still looking at daily results, you might not see it. You'll be too stressed out from yesterday's bad day, fretting over when it's going to happen again.

Notice we're higher up on the "Relative Happiness" scale, and we're having more good days than bad days. But it's still hard to see any kind of trend.

It's when you can take a step back and look at the bigger picture that you really see the positive results of all your (and your child's) hard work. How is he doing today compared with 3-6 months ago? How about compared with a year ago? Pull out your pictures from last year (or your video or journal) to remind yourself of what the struggles were. You'll probably find that today's bad days are better than yester-year's good days. And today's good days were unimaginable – a dream – not too long ago.

This is the full chart that the previous two were excerpted from. Now, looking at a 2-year block of time, it's pretty easy to see the forward progress.

Keeping things in perspective is something that I find helps a great deal.

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