Advocacy in Action & Adolescence

So lately it's been kind of interesting in our household as Jim and I find ourselves the parents of an adolescent (though Charlie's yet to reach his twelfth year) who's in middle school and who is well on his way to being as tall as Jim's tallest relatives (Charlie is nearly as tall as my tallest relatives). Everything we've read or heard about this time period has been less than, if I may say so, upbeat, with phrases like "Adolescence And Autism: A Difficult, But Not Hopeless Combination" and Asperger syndrome in adolescence: living with the ups, the downs and things in between pretty much the norm. Regardless of whether or not one is talking about autism, both "adolescence" and "middle school" are two words that seem to evoke more of a shudder or a "thank God that's over" (or, "oh my God, please do not even mention that to me!," depending somewhat on the age of the child in question).

So far, much of 2009 has been devoted to conferring with Charlie's teacher and various therapists, doctors, and school personnel about problems and programs, and what we can do, and what we have done, and what doesn't seem to be helping, and what can we still do---the full-out effort that's been part of advocating for Charlie throughout his life.

Another part of that effort has been time with Charlie, doing things together and, especially, going places together. Something about being on the move always seems to appeal to Charlie and, this weekend, we went into New York city twice, so Charlie more than got his share of rides on the PATH train (which takes us from Jersey City to Manhattan), on the subway (the D and the 1), and (a special treat as we are inclined to hoof it), a taxi. Plus, as it's not possible to park anywhere near Journal Square, we leave the black car at my office and walk the 3/4 of a mile down Kennedy Boulevard.

Friday we walked around Columbus Circle and ate takeout in Jim's office; Saturday we had a belated Chinese New Year's celebration with dinner in (surprise surprise) Chinatown. (Though we had to wait for almost 30 minutes wedged in between the cash register and some diners whose Peking duck looked extremely delicious; Charlie admired the food and stood patiently, with waiters hoisting platters of steamed fish and winter melon soup over their heads and ours.)

Going out into the world has always been a centerpiece of Jim's and my advocacy for Charlie, as it's something we do with Charlie. Going out into public places is often cited as challenging for families with children on the spectrum (there are indeed books on this topic). As I wrote in my primer:

While a parent may have figured out what kind of teaching and therapies their child needs at home and in school, there's still the rest of the world to deal with. Grocery stores, shopping malls, libraries, houses of worship, movie theaters, restaurants: Overwhelmed by anything from sensory overload -- noise, smells, sights -- it may be all that an autistic child can do to keep his head down and get through the labyrinthine aisles of the modern American supermarket. Just in the past year, two instances of autistic children being excluded from public settings -- a church in Minnesota and an airplane getting ready to take off -- highlighted these difficulties.

There's no limit, or should be no limit, to where an autistic child can go. It may be necessary to gradually introduce a child to a new setting and teaching methods and books are available to help a child with this. Regardless, when out in public with a child who others perceive to be "misbehaving," a parent learns a form of advocacy, as they learn to ignore stares or angry looks, respond to rude comments in a reasonable and thoughtful manner, and discover that they too are marked as "different."

For parents of autistic kids, advocacy doesn't have to mean something big and splashy that gets heard about in a national forum. Just going out can be an act of activism. Doing so says to the world that there are autistic persons here, and maybe they act a little (or a lot) "different," but there's a place on earth for all of us.

Charlie and I go to the grocery store every week and he shops, carries around his shopping basket, endures my explanations about why something he wants is out of stock, waits in line, and helps to carry out the groceries. He's not big on malls (guess that makes him like more and more Americans) or clothes shopping. One reason we like taking Charlie to the YMCA---even though swim time in the pool remains limited on weekday nights---is that, when we're there, we're among people in our town and in our community. Most of the people at the front desk recognize Charlie as do the pool supervisors (who were lifeguards when we started going there).

Now that Charlie is older, his being "different" is much more quickly noted than when he was little. Since he's entered puberty, he's had more bouts of anxiety than ever, especially when things don't happen as expected and when there's loud/harsh/shrill noises or voices. His love of going out and being out and about is as strong as ever and we're determined to keep going out---to keep doing our small effort of activism. For me, advocacy needs to be more than about autism---advocacy must be with Charlie.

Run-walking down Kennedy Boulevard with Charlie while a freezing wet wind blows against us on a January Jersey City night----things like this are what it's all about, and even more so when Charlie turns his head back to check that we're there, right behind him.