Autism Vox

The Fortune Cookies Might Be Right

by Kristina Chew, PhD on May 23rd, 2008

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?

Share This

Related Stories

The Scent of the Cookies
Vaccines and Genes
Special Diet, Charlie Style
Order Restored (for One Tuesday)
Sure, Let’s Blame MSG Too!

POSTED IN: Autism Organizations, Charlisms, Family, Food and Diet, Health, History, Parenting, Psychology, Travel, Treatment, Vaccines, Weblogs