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……….

In Collier County, Florida, parents have accused the school district of having a “carefully orchestrated strategy to keep special needs students out of the district.” Yesterday’s WINK news reports that the Federal Department of Education’s Office of Civil Rights has sent a letter to the Collier School District recommending changes as to how the district informs parents of their rights under the Americans with Disabilities Act (here’s a PDF file of that latter). WINK news describes what happened to teenager Derek Hughes, who was diagnosed with autism and who also started to have seizures while a middle school student in the Collier School District. Then:

“His seizure activity resulted in an ER visit because no one in school was trained properly to deal with a seizure,” his dad, Bill Hughes, told CALL FOR ACTION.

After the seizure, his parents took him to a neurologist at the Dan Marino Center in Miami.

Derek’s neurologist recommended the district change Derek’s IEP to include requiring a full-time trained nurse stationed at the school (the school only had a part-time nurse). It also recommended allowing Derek to bring his service dog to school.

Despite letter… after letter… after letter from the Derek’s family attorney to the district - nothing changed.

Bill Hughes told CALL FOR ACTION, “The district refused to change Derek’s IEP. They refused to acknowledge the epilepsy diagnosis. The district even refused to recognize on Derek’s IEP he had a seizure even at school.

In January 2006, Derek’s dad requested an independent hearing under the American’s with Disabilities Act. Federal law requires the district schedule the hearing within 45 days of the request.

“We sit here two and a half years later and not one single element of our sons’ case has ever been evaluated and ruled on,” said Hughes.

Hughes also complained to the Federal Department of Education Office of Civil Rights.

The Hughes family has also filed a federal lawsuit against the school district; other families have also filed complaints against the district. The Hughes family has relocated to Pennsylvania, where Derek is allowed to have a service dog and a sign language interpreter, with his father commuting from Florida on the weekends.

With the current financial crisis in the US other families and I have been talking (worrying) about what this might mean as far as our school district’s budget and how we can ensure that our children receive an appropriate education right here in our own town. We’ve moved several times for the sake of Charlie’s education—-I think this time we’re planning to stay put and make things as good for Charlie and kids like him as we can.

(Preferably without taking legal action.)

Charlie and I went to the playground today.

That probably doesn’t seem to be anything much to report, especially given other things going on this week. Charlie and I haven’t been to the playground in a while—in several months—and there was a time when we went at least twice a day. After school and before dinner. Mid-morning (on a weekend or holiday) and sometime after 3pm. Many posts when I first started blogging recount those hours of Charlie climbing and trying to walk up slides with the summer sun beating down on us.

With the sun just starting to set, Charlie climbed up a rope net. He’s so tall now that he really only had to reach out his hands to grasp the wood edge and pull himself up. He tramped up the slides several times, then went down the rope net. I walked around, trying to guess if the stormclouds would finally leave the sky—-today was a crazy weather day, sunny one moment and a driving downpour the next. Yes, I no longer have to keep constant watch on Charlie, lest he lose his balance or forget to duck so his forehead doesn’t bump a metal bar. Just in the past few weeks, he seems to have gained a inch or so: The playground poses no challenges, not anymore.

Jim was giving a lecture in Manhattan; after the playground, Charlie said “yes” to brown noodles—-shrimp chow fun from a Chinese restaurant that proclaims “NO MSG!” on its menu. We each got a plastic dish of steaming, slightly gooey-sticky noodles with green onions. Charlie opened both fortune cookies. One said,

Success is a journey, not a destination.

Too appropriate—life with Charlie is a journey of faith, love, grit, and hope.

The other fortune said,

Watermelon [and gave the Chinese word, xi gua].

This post tells a bit about Charlie’s longstanding fondness for this particular fruit (we’ve got a half-plus in the fridge right now).

It was a peaceful mom-and-boy kind of evening, with Jim calling to check in. In years past—when Jim was teaching at night and commuting from central New Jersey up to the Bronx daily—-there were a lot of mom-and-boy kind of days. Sure, we’d go out—Charlie did gymnastics class in those days, and some verbal behavior sessions, and there were inevitable trips to Target, grocery stores, malls, and book and toy stores—-but these were interludes in the long stretches of time. Sometimes, it was a tough day and it just seemed better to shut the door to strangers with raised eyebrows.

Yes, it got lonely, though, of course, we were never alone, me and Charlie together. I started blogging in June of 2005 in part because I just wanted to connect. As Charlie’s behavior problems increased, we could feel ourselves keeping more and more to ourselves, becoming more and more isolated. I blogged and—yes, it’s not the same as meeting people face to face and shaking hands and drinking coffee at the same table—-but when you blog, you don’t have to get a babysitter, and you can do it anytime—when Charlie was sleeping, or when Jim took him on a bike ride. And certainly it’s through the internet and blogging that I’ve “met” more people who have a stake in what gets said about autism.

Still I can’t forget the sense of shared experience and recognition I felt when, some years ago, I was at a conference and, when I asked why I was there, said “I have a child with autism.” “So do I,” both of my breakfast companions said, almost simultaneously.

I try to only go to things now that are nearby, in New York or Philadelphia (Washington D.C. is a bit of stretch, to tell the truth). Charlie seems to miss me more now that he’s older, for the sake of his sense of order (and mine, too).

Right now the Autism One conference is being held in Chicago. “Healing” and “recovery” from autism aren’t things I worry about, as you know if you’ve been reading here for a while (and you’ll also know I’m not world’s biggest fan of the conference’s keynote speaker, Jenny McCarthy). I was interested to see that AutismOne features a whole section on “Health and Happiness,” and specifically on “Mom’s Health and Happiness.” Sessions have topics like “Let Go through Radical Self-Forgiveness” and “The Blame Game” and “Are You Predisposed?”—topics which remind me that, for all that we say that “no one believes in the refrigerator mother theory of autism,” parents (mothers in particular) are still blaming themselves. Not because of being “cold” or “withdrawn” parents, but because of their genes, or of something they ate or didn’t eat during pregnancy, or because they realized they lived too near a power plant. And for sure, parents feel an (invisible) accusatory finger pointed at them when child “misbehaves in public,” or when something tragic like this happens.

So sure I’ve got my views about vaccine court and the ethical lapses of some research about thimerosal and autism. The news that got me excited today was about Pennsylvania allowing Medicaid funds to be used for autistic adults: I think a lot these days about Charlie’s future, about job possibilities and where he’ll live. Already Jim and I have reached another milestone in our life parenting our boy growing up into a teenager: Jim has given Charlie his last piggy back ride (and has a sore back to prove it).

I think a lot about how I hope Charlie will know that we’re always with him, even if we can’t–won’t—always be here beside him. And I hope he can always keep a piece of the peaceful easy-feeling we shared one May evening, on the playground and over chow fun with a taste of watermelon, one more evening on our journey together—who knows the destination?

The Pennsylvania Primary is today, with Hillary Rodham Clinton and Barack Obama battling it out. I’ve noted the candidates’ autism plans in a previous post. Today’s Washington Post hones in on another way to consider the candidates, the alleged link between vaccines and autism. Back in February, Senator John McCain linked the rise in autism cases to thimerosal in vaccines. The Washing ton Post indicates that he’s not the only candidate who has “wandered into an exceptionally emotional medical debate in which they have no known scientific expertise”: According to David Kirby in today’s Huffington Post, Obama was quoted at a Pennsylvania rally yesterday saying that he is “suspicious” that the “skyrocketing” autism rate might connected to vaccines (Mother Jones magazine also refers to this). Says the Washington Post:

The scientific debate will continue, but the body of evidence assembled so far suggests no proven link. Both McCain and Obama are wrong to suggest that the scientific verdict is still hanging in the balance.

Clinton, who has said she believes there is an “autism epidemic” [source], has said that she will “double investments in the National Institutes of Health’s (NIH) efforts to identify the causes of autism, including possible environmental causes.”

Maybe we need to introduce a “scientific knowledge factor” in assessing politicians?