Charlie playing flag football?

In Pennsylvania, Bob Wargo runs a flag football program for special needs kids, each of whom is paired with a high school football player, as noted in today’s Phillyburbs.

Well, Charlie is getting a strong set of shoulders and earlier today we went for a walk up a long and steep hill; he ran in front (yes, ran), bent over horizontal and going full speed ahead……….

A study underway at the University of Michigan seeks to get 60% of kids with disabilities (Down syndrome, autism) riding a bike in five days. Afterwards, the children are  tracked for a year to chart the effects on their emotions and intelligence. Kinesiology division professor Dale Ulrich is overseeing the study; he started to work with a program called Lose the Training Wheels under retired engineer and professor Richard Klein several years ago.

The June 20th Detroit Free Press quotes Laura Bailey of the University of Michigan News Service as saying that “just 10% of kids with Down Syndrome can ride a bike, and autistic children have similar issues.” Just 10%—-I don’t know the source for this figure, and I don’t know the percentage of autistic children who can ride bikes. But more than a few parents have noted their efforts and struggles to teach their children to ride bikes.

Bike riding is one activity in which Charlie not only excels. He’s exponentially better at it than I was when I was his age, and than I’ll ever be (it’s the same with swimming). This is Jim’s doing, not mine. Soon as Charlie could pedal his tricycle, Jim was taking him on dad-and-son jaunts to the playground, and before I knew it Jim was off buying himself a bike to lead Charlie (still with his training wheels) on rides on trails and in parks. Jim took off the training wheels when Charlie was 7 and before I knew it, they’d given up on the trails and headed for……..the streets. They’ve had some hair-raising adventures, destroyed a few bushes, and Jim’s occasionally had to engage in what he calls “bike rodeo” in the process of teaching Charlie to use the hand brakes at an intersection.

Charlie clearly loves getting on his bike and self-motoring himself to different place.: It’s very unlikely that Charlie will be able to drive a car, so the bike will perhaps be his means of self-transporting, one day, and I can just see Charlie grinning ear to ear as he rides off down the street on his red mountain bike.

I’ve asked Jim to write something up before the summer’s over about how he taught Charlie to ride a bike, but it may take a bit—Jim is finishing up several projects and recently (long story; big sigh) injured his back pretty seriously. (He is in a lot of pain; I am worried; I don’t want to say more than that now.) Bike-riding is one of the few activities that helps to lessen the pain and Jim wouldn’t miss out on dad-and-Charlie-time for anything. Somehow, being in motion always seems to help.

10-year-old Johnny Jackson died last week while taking a nap in his house from “asphyxiation due to drowning”—-according to today’s ABC News, Johnny may have died from secondary drowning. Johnny, who had attention deficit disorder and autism, had been playing in the neighborhood pool for about 45 minutes. He was wearing flotation devices on his arms and was being monitored by his mother, Cassandra Jackson, and other adults. She noted that he was “taking a little bit of water in and coughing and then calming down” but that everything seemed fine. But then:

But less than two hours after getting out of the pool, Johnny had defecated in his pants twice and was complaining of being tired.

After being bathed and dressing himself, Johnny walked to his bed unaided, leading his mother to believe that he was simply tired from playing in the water.

But shortly after leaving him to nap, Jackson discovered her son unconscious and his face covered in a foam-like substance.

“My friend went back into the room where Johnny was sleeping and noticed what appeared to be cotton balls stuffed in his nose,” Jackson said of what turned out to be the foam from his nose and mouth. “She asked if I put them there and I said no — I went in and saw him and screamed for help.

“I rolled him over and his body was very limp and I realized he’d soiled himself again and was very purplish-blue looking,” said Jackson, who then called 9-1-1. “His tongue was really swollen, too.”

Johnny suffered from cardiac arrest on the way to the hospital, his mother said, and was pronounced dead upon arrival.

Berkeley County Coroner Glenn Rhoad examined Johnny’s body after the incident and told ABCNEWS.com that the preliminary autopsy showed the cause of death was asphyxiation due to drowning. Rhoad added that the boy had a lot of water in his lungs.

The ABC News story notes that, in secondary drowning, a secondary injury is caused to the lung when only a small amount of water—-only four ounces or about six teaspoons—-gets into the lungs.

My son’s a good swimmer but I never sit around and read magazines when we’re at the pool; while I don’t always get in the water anymore, I’m always watching him and following him around. Many years ago, an autism consultant told us about a family whose son was also a great swimmer. They had a pool in their backyard and one day—with both parents eating breakfast beside the pool—-their son drowned. The consultant emphasized that “this kid was a fabulous swimmer,” and that you never can be too careful in the water. Never.

I think I’ll be contacting my YMCA to ask about instructing their lifeguards in assisting autistic and special needs kids in the pool. Spending time in the water is so important for my son and we’ve got too take every precaution.

Last year I more than once expressed my frustration about getting Charlie time to swim in the pool at our YMCA. For reasons that you can read about here, Charlie has not been able to swim in the “big pool” at the hours when we can go (late afternoon/early evening). Our YMCA does have a quite elaborate “family pool” with two waterslides, a wading pool, and 3-4 foot pool, but it’s not the same as swimming laps. Somedays Charlie goes up the stairs and down the slides 20 times; other days (like yesterday) he puts his hands over his ears and just seems to like looking at the foaming water coming out of the slides). Recently, we’ve found a good solution by taking Charlie to swim in the pool of the college that I teach at and Charlie had a good time jumping in the 12-foot deep end on Monday.

And then today, I noticed a single piece of paper on the floor after Charlie had emptied out his backpack and was having his after school snack. It was a request from the YMCA’s Autism Advisory Committee to “discuss how to better serve individuals with autism and their families………..The Autism Advisory Committee is asking parents of children with autism to provide feedback on current programs and to share ideas for future programs.” Have I got an idea for you, I thought……

Yes, my feedback has been sent.

Charlie was turning backwards somersaults in the pool the other day but imagine what he can do in more than four foot of water.

Researchers from the Perth’s Telethon Institute for Child Health Research in Australia have found that girls and young women with Rett’s Syndrome are four times more likely to suffer a fracture. From Science Daily:

Dr [Helen’ Leonard said the study had found that girls with epilepsy and more severe forms of Rett syndrome were more likely to suffer fractures. “Our next step will be to try to identify the mechanism that is making the girls more susceptible to fractures which will include looking at the effect of the specific gene that’s responsible for the syndrome and also the impact of the drug therapies used for epilepsy,” Dr Leonard said.

“The high incidence of fracture impacts on the quality of life, care needs and outcomes for this group and their families. We have shown previously that having a child with a fracture impacts in a negative way on the mother’s mental health status.”

Rett’s Syndrome occurs mostly in girls and occurs in approximately 1 of every 10,000 to 23,000 female births.; mutations of the MECP2 gene on the X chromosome have been identified as a cause of Rett’s syndrome. The new study is published in Pediatrics.

As for the “high incidence of fractures”: Here’s my friend Kassiane Alexandra Sibley (who has Rett’s) doing some power tumbling.