Monday, July 14, 2008

Get Over It

I'm sure that at one point or another, we've all asked the questions "Why me?" and "What did I do to bring autism into my (our) life?"

I can't answer those questions for you.

Sometimes when we're looking for answers, what we really need is motivation.

Dick Hoyt gives me a lot of motivation. Whenever I get a little bit down, I think about Dick Hoyt and his son Rick, and I tell myself to Get Over It. Don't be a sissy, and don't waste time feeling sorry for yourself – just get out there and make Calvin's life better!

Today I stumbled across a copy of Dick Hoyt's story, so I thought I'd share it with you. The story is written by Rick Riley and published in Sports Illustrated – give it a read below. I've also included a video clip, but it's hosted somewhere else, so I can't guaranty how long we'll have access to it. Just make sure you have a tissue handy when you watch the video!

Strongest Dad in the World

by Rick Riley

Sports Illustrated Magazine, Life of Riley, 6/20/2005

I try to be a good father. Give my kids mulligans. Work nights to pay for their text messaging. Take them to swimsuit shoots.

But compared with Dick Hoyt, I suck.

Eighty-five times he's pushed his disabled son, Rick, 26.2 miles in marathons. Eight times he's not only pushed him 26.2 miles in a wheelchair but also towed him 2.4 miles in a dinghy while swimming and pedaled him 112 miles in a seat on the handlebars -- all in the same day.

Dick's also pulled him cross-country skiing, taken him on his back mountain climbing and once hauled him across the U.S. on a bike. Makes taking your son bowling look a little lame, right?

And what has Rick done for his father? Not much -- except save his life.

This love story began in Winchester, Mass., 43 years ago, when Rick was strangled by the umbilical cord during birth, leaving him brain-damaged and unable to control his limbs.

"He'll be a vegetable the rest of his life," Dick says doctors told him and his wife, Judy, when Rick was nine months old. "Put him in an institution."

But the Hoyts weren't buying it. They noticed the way Rick's eyes followed them around the room. When Rick was 11 they took him to the engineering department at Tufts University and asked if there was anything to help the boy communicate. "No way," Dick says he was told. "There's nothing going on in his brain."

"Tell him a joke," Dick countered. They did. Rick laughed. Turns out a lot was going on in his brain.

Rigged up with a computer that allowed him to control the cursor by touching a switch with the side of his head, Rick was finally able to communicate. First words? "Go Bruins!" And after a high school classmate was paralyzed in an accident and the school organized a charity run for him, Rick pecked out, "Dad, I want to do that."

Yeah, right. How was Dick, a self-described "porker" who never ran more than a mile at a time, going to push his son five miles? Still, he tried. "Then it was me who was handicapped," Dick says. "I was sore for two weeks."That day changed Rick's life. "Dad," he typed, "when we were running, it felt like I wasn't disabled anymore!"

And that sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly shape that he and Rick were ready to try the 1979 Boston Marathon.

"No way," Dick was told by a race official. The Hoyts weren't quite a single runner, and they weren't quite a wheelchair competitor. For a few years Dick and Rick just joined the massive field and ran anyway, then they found a way to get into the race officially: In 1983 they ran another marathon so fast they made the qualifying time for Boston the following year.

Then somebody said, "Hey, Dick, why not a triathlon?"

How's a guy who never learned to swim and hadn't ridden a bike since he was six going to haul his 110-pound kid through a triathlon? Still, Dick tried.

Now they've done 212 triathlons, including four grueling 15-hour Ironmans in Hawaii. It must be a buzzkill to be a 25-year-old stud getting passed by an old guy towing a grown man in a dinghy, don't you think?

Hey, Dick, why not see how you'd do on your own? "No way," he says. Dick does it purely for "the awesome feeling" he gets seeing Rick with a cantaloupe smile as they run, swim and ride together.

This year, at ages 65 and 43, Dick and Rick finished their 24th Boston Marathon, in 5,083rd place out of more than 20,000 starters. Their best time? Two hours, 40 minutes in 1992 -- only 35 minutes off the world record, which, in case you don't keep track of these things, happens to be held by a guy who was not pushing another man in a wheelchair at the time.

"No question about it," Rick types. "My dad is the Father of the Century."

And Dick got something else out of all this too. Two years ago he had a mild heart attack during a race. Doctors found that one of his arteries was 95% clogged. "If you hadn't been in such great shape," one doctor told him, "you probably would've died 15 years ago."

So, in a way, Dick and Rick saved each other's life.

Rick, who has his own apartment (he gets home care) and works in Boston, and Dick, retired from the military and living in Holland, Mass., always find ways to be together. They give speeches around the country and compete in some backbreaking race every weekend, including this Father's Day.

That night, Rick will buy his dad dinner, but the thing he really wants to give him is a gift he can never buy.

"The thing I'd most like," Rick types, "is that my dad sit in the chair and I push him once."

So the question is: How many marathons did you run for your child today?

Wednesday, July 9, 2008

Why Science doesn't work

There are hundreds of alternative treatments available for parents of autistic children to try.

Researchers, scientists, and the medical community at large have made a lot of noise about the validity of most, if not all, of these alternative treatments, saying things like, "They haven't been scientifically proven to work" and "They're treating something which has been scientifically proven to be inaccurate".

They would prefer to test these various treatments using two different methods, either of which would be scientifically valid.

Double Blind Studies. Take 200 similar kids, give 50% the treatment and the other 50% a placebo, and study the effects. If the results are different between the two groups then the treatment works.

Identify a Single Variable. Keep everything else in your child's environment exactly the same, and introduce one new variable. Then see what happens. If you see improvement then the variable made a difference.

Both of these methods are great, but both of them have major problems for parents trying to help their little ones.

Problem 1. There is no such thing as 200 autistic kids who are otherwise similar - autism affects each child differently, all the way down to their brain and central nervous system's ability to process information. There are many cases where a treatment/supplement helps one child and has no effect on another child, or even makes him worse.

Problem 2. In many cases, a child will make improvements based on multiple variables working together. In these cases, it would be impossible to isolate the one variable which caused the improvement.

Problem 3. Time. If we wanted to try 200 different remedies, treatments, therapies, supplements, diets, etc., and we kept everything else constant, and we tried each "variable" for one month, it would take 17 YEARS to get through all the possibilities. And that's just doing them one at a time!

Personally, we didn't want to wait 17 years. We believed we had a small window of opportunity, a few years at the most, to make the biggest impact on Calvin's life.
We listened to the scientists for the first year or two, but then we realized they didn't really have an answer - they were guessing as much as us, but would only try one thing at a time.

After that, we tried a lot of different things, often times in combination. If we threw 6 new things at him, and if/when he improved, we were happy with the improvement. Then, over time, we could try to reduce or eliminate some of the new things to figure out what wasn't necessary and/or helpful. If we introduced new things and he had a bad reaction, we could pull the plug on some/all of them quickly.

One of the keys is to keep a detailed record of what you're doing, which I've written about before. Another key is to be patient, yet impatient, at the same time. But listening to the doctors and scientists and taking their words as gospel - that's not the key. Maybe if they had an answer or a solution I would think differently. But so far they've proven that their methods aren't helping each individual family out there.

Wednesday, July 2, 2008

Heavy Lifting - an insprirng story

We all have a lot of time & energy invested in our kids, especially our kids on the ASD spectrum. And I'm sure that anyone reading this, myself included, would do/buy/give anything to gain a cure for their child. I also believe that many parents out there have put aside their own hobbies, interests, and even dreams, in order to provide a better life for their "baby."

Enter Melanie Roach.

Here's the story of an Olympic athlete who will be competing this summer in Beijing, who is also a mom to 3 kids - one who has autism. There's no doubt who I'll be rooting for!

Take a few minutes to watch this heartwarming (and powerful) story. ( Then get ready to take on the world!

Thanks to my friend and colleague, Dru Bloomfield, for sending me this story. (Dru has more drive and energy than most of us - I'm a little bit surprised she's never shown me a gold medal of her own!)