Wednesday, January 28, 2009

AS kids and Sports

In-game picture of an informal game of {{w|bro...Image via Wikipedia

Diver is playing broomball.

So what? Big Deal. Kids play all kinds of sports.

Not kids with ASD's. Our kids are prone to clumsiness; "poor motor skills" the occupational therapists call it. They bump into things and fall down. They tend to have poor muscle tone. Motor planning -- knowing where you are in space and how to get where you want to be -- is also a weakness. Even for a kid who may have lucked out physically, the social complexity of a team sport can prove too much of a challenge.

No wonder so many of our kids give up and become sedentary.

Diver failed at basketball, soccer and T-ball, where he famously threw kisses while the other kids threw balls, and then proceeded to lead a mass exodus to the portapotties.

So the fact that he has gone off to play broomball makes me kvell. Granted, the other kids are not average Joes either. They're an ad hoc group organized by an agency that does outreach to troubled teens.

But he is with a group. He's playing a sport.

In my book, that makes him athlete of the year.
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Mercury in HFCS follow up

The FDA has known for years and did.................


Tuesday, January 27, 2009

A ticket to heaven

Kodiak, AlaskaImage via WikipediaAfter weeks of trolling for a free plane ticket using frequent flyer miles, I bagged Diver's ticket to camp.

This will be the third summer Diver spends at Camp Kodiak, his blessed summer home-away-from-home. Blessed for Diver and blessed for me.

Diver's summers at Kodiak have been the most powerful therapy he has ever had. He came home from his first four-week summer in the best shape of his life; so neurotypical that we finally saw what was possible for him. Returning to his ill-fitting school, he soon fell apart (another story for another day.). But he had thrived. And even during the nightmare that was the 07-08 schoolyear, the knowledge that he would be returning to his beloved Kodiak (or "home", as he calls it), kept hope alive.

Last summer, he spent 7 weeks at Camp. To see your previously unhappy, volatile, lonely depressed child with Asperger's blossom; to see him stable, happy, cheerful, normal. That is a blessing. Just to see your solitary child living in a cabin with 8 other children; part of a community; it's like heaven.

And today I bagged a free ticket.

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Monday, January 26, 2009

Mercury Rising

Bar chart of the number (per 1,000 U.S. reside...Image via WikipediaWhile public arguments rage on over whether mercury in vaccines contributed to autism, the jury is in. The best science available indicates that ASD's (autism spectrum disorders) have both genetic and environmental components. Some people have a genetic predisposition toward autism and when that meets an environmental contaminant (i.e., organochlorines, heavy metals including mercury), bang. Autism. Genetics loads the gun. The environment pulls the trigger.

So why have autism rates continued to rise even after mercury was removed from vaccines? Because mercury and other environmental contaminants are everywhere. Today's news includes a new study finding mercury in high fructose corn syrup (HFCS), which is also everywhere. (Check the labels in your kitchen. Everywhere.)

The new study, from the Institute for Agriculture and Trade Policy found mercury in nearly fifty percent of tested samples of HFCS. A separate study by IATP found mercury in nearly a third of 55 popular brand-name food and beverage products where HFCS is the first or second highest labeled ingredient -- including favorites from Quaker, Hershey's, Kraft and Smuckers.

Peanut butter and jelly and mercury, anyone?

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Wednesday, January 21, 2009

Worrying about what others think

Target (Australia)Image via WikipediaThis afternoon, Diver and I broke quarantine to pick up a Lego at Target. As we left the store, I saw a child and her mom we'd known since preschool.

The Mom was pointing at us, giggling and whispering in her daughter's ear.

They knew us before Diver was diagnosed with Asperger's, when no one knew why he was having meltdowns. They knew us after the diagnosis, when he continued struggling because the school wouldn't provide services.

Does it matter? Should I care if they think my child is the weird one? Do I owe them some explanation?

They don't know us now. I don't owe them any explanation.

Parents of kids with autism are harshly judged. So how do you deal with the judgement of others?

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The Blessings of Normal

Day 2 with Diver's strep throat. He is miserable, mostly from the fever that's been so high (103.7) that I got scared. But that fever could happen to any child, with or without Asperger's Syndrome; that fear to any parent. So these, I supposed, are the blessings of normal.

Tuesday, January 20, 2009

New White House Page on Disabilities (AS included)

Change has come to America. Check out the new White House page on disabilities and autism.
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Inauguration Day

Diver is sick.  He woke this morning with fever, sore throat, stomachache.  

Yesterday he was hypersensitive.  Generally I can help him figure out why.  Was something bothering him? Anything on his mind?  Somebody say something nasty?  Worried about school? We do this with our AS kids: help them put a name to their emotions

But no.  He was getting sick.  So I canceled my morning meeting and now we get to witness Obama's inauguration.  That's a good thing.   

Monday, January 19, 2009

On the other hand....

Posting in the shadow of MLK's "I have a dream" speech now showing on CNN....

Interesting morning for Diver.  Weary after his 10 hour bus ride and sleep-deprived weekend, he stumbled out bed at 9:15 to recover in his swing.  He'd forgotten a morning orthodontist appointment, and when I reminded him we were due there in an hour, he was overwhelmed.

"What!?  Why!?  Why didn't you tell me!?  Why did you schedule it today!?   What were you thinking!!?  I'm tired, I'm sore, I'm annoyed, I need to recover."

I know.  I wish the appointment hadn't been this morning, but I had already rescheduled it twice, and for Diver,  the window for appointments is small.  He can only handle them on late-start days or school holidays, and then, only one per day.  Between the dentist, the doctor, the therapist, the orthodontist, and the prescribing MD, the window is small.

This weekend's journey was added at the last minute, and having rescheduled the ortho appointment so often, I wasn't even sure I had the date right.  

Diver was right.  The timing was bad.  But there it was.  As hard as I try to schedule smart to accommodate Diver's needs, it doesn't always work.  That's real life.

He got to the appointment, a little late, a lot dirty, since there was no time to shower, brush teeth, or wash away his juice mustache.  They'll see him again in six months.  If I'm smart, I'll schedule it for the week between camp and school.   

Sunday, January 18, 2009

He's back

He's home.  As sane as can be.

Diver was 10 hours away at a YMCA Young Leaders Rally and I was nervous as a cat; pacing, worrying, clock-watching, tossing, turning, bellyaching.  And there he was having a fine time.
Not a great time.  But fine.  When I picked him up tonight, he matter-of-factly said the weekend was fine.  Kind of fun.  But they weren't well-organized.
Which to someone with Asperger's is a crime.

Still he did fine.  He coped.  He said there were lots of kids to hang out with, and yes, he did take part in the talent show.

He burped the alphabet, from A to Z.  And he got a standing ovation.

That's my boy.


A reader asked me if I had considered that this blog might be exploiting Diver.

Her question gave me pause.  Raising Diver is the subject I know best.  The blog is about what happens with your significant other is a 12-year-old with autism.  But does it exploit him?  How would he feel about it if he knew?  Isn't writing about family and friends what writers do?  

Good questions.   I have already begun using a pseudonym for my son and removed my own first name from my profile.  To get even more anonymous, I would have to change the url for the blog and remove my picture.  Perhaps that's next.  Perhaps I don't write about Diver.  

Who is anonymous here?  Mom and son?   Mom only?  Or no one at all?

Saturday, January 17, 2009

Letting go

Let him go, let him go, let him go.

Physically, I did.  Mentally, not so much.

Just before midnight, Diver joined a crowd of other teens waiting to board a bus at a satellite YMCA site in the city.  

Bye!  Have fun!

Not even a backward glance.  We'd already had our talk about the right way to behave, not getting drunk on sugar and pop, who to turn to for help. 

I remembered the first time I waved him off alone.  We were on Stone Island in Mexico, and he went horseback riding with a group.  I don't ride.  I grimace and worry, so I waved him off through gritted teeth and angst'd for the next hour.

Which is pretty much what I did last night.  Nine hours have passed and I am so tempted to call the youth leader on her cell.

Then I remember all the things he has successfully navigated.  Snorkeling, scuba diving, diving boards, flying, skiing, customs, bar mitzvah parties; things I could never do, not just alone, but ever.

So he can do this trip.  Even if the phone rings right now, with the cry  "Help.  Come get me!"; calls I used to get a lot, he's already succeeded.  He got on the bus alone last night and journeyed to an unknown world.  He'll come back stronger and more confident.

Maybe I will, too. 

Friday, January 16, 2009


Got an e-mail last night with these figures in the text: 16F

Naturally I thought it was about an F16 fighter jet. What else could it be?

This is another feature/benefit/quirk/fact-of-life about living with Diver. Everything is military. Everything. We don't need to get the Military Channel. We are the Military Channel. Like most kids on the autism spectrum, Diver perseverates. In his case, on the military. His reading, his conversation, his hobbies, his wardrobe: all military.

It's not all bad. It has enabled him to learn history, geography, science, philosophy, even Torah; for while he prefers modern warfare, with its advanced armaments, he was (as a younger boy) quite engaged with the battle tactics of the Maccabees. These days he follows with great interest the hardware and tactics of the Israeli Defense Forces.

He's not really partisan. Earlier this week, he was reading about dushkas (look it up) and explaining why he wished he were Russian, due to the coolness of their military.

And speaking of coolness, -16F is how cool it was in Chicago last night. That was the subject of the e-mail I received. But as Diver will tell you, it doesn't hold a candle to the F16.

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Thursday, January 15, 2009

"In what way is that an insult?"

I'd just told my 12-year-old that his room smelled like "boy".  I did mean it as an insult.  The room stank.  But Diver out-thought me.

Lately I've been reminded that Diver is as smart as I am. And that he is becoming a teenager with all that implies.

Of course that happens to all kids after 12.  But with Diver, who has an ASD (autism spectrum disorder), it is especially loaded.  We are so used to guiding, preparing, managing, micro-managing our kids that the push/pull of adolescence is, like all our parenting, magnified 100X.  

"For all intents and purposes, Mom, you are over-parenting," he told me earlier this week.  I was dropping him at a planning meeting for a YMCA youth rally he'll be attending--10 hours away in St. Louis.  And he has traveled before and gone to camp in Canada.  But to go on a 10 hour bus trip that leaves at midnight to a big event with hundreds of teenagers who will be up all night playing and learning and playing...   Yeah, well, I had some over-parenting to do.  It has taken a lot of over-parenting to get him where he is today.  Stable.  Independent.  Managing his emotions.  This is a kid who dropped out of school last year at the age of 11.  

This week his therapist said, "Its like he's neurotypical.  If I didn't know he had autism, I wouldn't know he had autism."  

It's a wonderful thing.  And its over-parenting that got him here.  So I'll continue my merry over-parenting way and let him complain like any other teenager.