The Same Old Same Old

Looks like Dora and I did it again, both posting about the same (Chicago Tribune) article yesterday. Dora's post focused on precisely the topic that drew me to the article, the notion of "insistence on sameness" and, in particular, on "insistence on sameness" as something as "maladaptive" and in needing of lessening or, even, outright eliminating. Repetitive behaviors can rather be seen as an individual's attempts to self-calm and adapt to a world that's not so readily going to adapt to her or him.

I'd been thinking a lot about sameness with the end of Charlie's regular school year. And, on Thursday and for half of Friday, Jim and I were encouraging Charlie to, indeed, not do "the same old same old" and veer from his routine. Yesterday, I spoke at the 15th Annual Pennsylvania Immunization Conference in Grantville, Pennsylvania, which is near Hershey (as in bar, as in chocolate), Pennsylvania. I spoke on "Autism and Vaccines: A Parent's Perspective"---on why we once (very irrationally) worried (but we did worry) that vaccines could have "contributed" to autism in Charlie; and about how, when he was 8 and everything was set for him to start in a new school district except that he was not up to date on his vaccines, we gave ourselves a good shake and got him up to date, and it was No Big Deal. I talked about the tremendous amount of energy and passion devoted to this issue and how this is, ultimately, a huge distraction from the real issues that real individuals and their families face, the need for education and schools, supports and services.

In other words, I talked about the same things I've been writing about while blogging at Autism Vox (to the point that I sometimes thought I should temporarily rename the blog Autism Vax). I won't be surprised to be referred to as a "paid Pharma shill" or some such and to be supplied (in the comments to this post and elsewhere) with numerous links to numerous articles, websites, studies studies studies pointing to a "link" between autism and vaccines (there is no link), informing me I'm wrong, and so forth.

But that's more of the same---what is it about certain autism topics that they become so perseverated upon?---and, rather than write a post like many I have already written before, here's something about the change in Jim's, Charlie's and my routine from going to Grantville, PA.

The conference was something over two hours away from where we live in New Jersey and I was scheduled to speak at 10.15am on Thusday morning, so we thought it best to leave on Wednesday evening. As of the past year, Charlie has been much more resistant to traveling beyond his usual circle of places, as we realized on our last trip to California, when Charlie made it clear, he wanted to be h-o-m-e and N-O-W. In the past year, he's been generally more insistent (and communicating this to us) about keeping some things----where we eat, what he eats, what order we do things in while at the pool---the same. The past year having been a time of perpetual transitions for Charlie, it makes sense to us that Charlie would be seeking to create some waystations---markers---to rely on in the midst of much turbulence both inside him (physically, certainly) and all around him.

On the other hand, there are times when he and we seem to be stuck in a box, so in need of maintaining the same old same old that it feels impossible to do anything else. What do you do if the one diner he has to eat at is closed for renovations?

Or if he and Jim can't ride their usual route because a large and loud dog came running out and stood (stymied most likely by an electronic fence) barking away? (Charlie remains very wary of dogs, and keeps a safe distance.) Or if we can't swim at the pool because it's been closed due to thunderstorms?

Sometimes, too, after he's been eating the same requested item over and over, Charlie only picks at the food (always odd for him) or, as has occurred in some cases, hurls it across the room. As his parents, looking him to keep him not only learning and progressing but, simply, happy, Jim and I can't help letting our thoughts fly to the future when we are, yes, gone---a huge and ultimate change that will happen to Charlie, and that we won't be around to help him through.

So from Monday on, we talked a little about how, on Wednesday, we'd be driving to Pennsylvania and staying in a hotel. I showed Charlie photos of the Holiday Inn and also of nearby Hershey Park and its water rides and ferris wheel. Charlie's eyes got big and his face serious as he said "Pennsylvania," "stay in a hotel," and "rides," very solemnly.

Wednesday night we packed the black car with his iPod and worry beads and various other familiar items (and, yes, clothes and swimsuits). Charlie sat straight up in the back seat as Jim drove west, occasionally hunkering down into one of his blankets. He went right into the hotel and sat in a chair with a big smile, then got up wanting to eat; we walked into an Italian restaurant just as it was closing and Jim and I got stromboli, Charlie fries. (He never ate pizza for years while on the gluten-free casein-free diet, and now shows no inclination to.) Back in the hotel room, Charlie sat for a long time looking at a pack of ketchup---it wasn't the usual Heinz---and then dug in. He showered and watched YouTube on my laptop, then got under the covers and told us "bedtime."

Ten quiet minutes passed and Charlie leapt out of the bed and into a roller desk chair, and said "no, no, no" about going to sleep in a, yes, strange bed.

Jim and I assured Charlie that we'd be home tomorrow (in less than 24 hours, for sure). After a couple more "no" 's, Charlie got back into the bed and went to sleep, though he twitched and frowned when the fan for the air conditioner came on, so we switched it off.

Thursday morning, I went for a walk around the very large hotel parking lot to meditate on my speech. Charlie was up when I came back and, while I went to the conference, he and Jim checked out and headed for Hershey. They found a diner but it wasn't like the ones in Jersey and Jim, having eaten a rather greasy omelet, found himself obliged (ordered) to eat an equally greasy breakfast-Philly-cheesesteak-sandwich thing he'd gotten for Charlie. (Charlie pushed his plate towards Jim's: "Dad, eat.") They ended up under the familiar Golden Arches and so did the eau de fast food waft at me as I opened the door of the black car when they picked me up in front of the hotel. Charlie requested "home" and had a big no to any amusements (such as they are) at Hershey Park, and back east we went. And spent the rest of the day hanging around the house, shopping at the usual grocery store, roaming in and out of the kitchen while I chopped green onions and ginger and vegetables, and riding bikes.

So we had a little change of scenery in our days before returning to the usual---enough to make us all (well, Jim and me at any rate) appreciate being home and, yes, the "same old same old."

And it's not that Charlie always does the same things or wants things to be always the same. But he does want and need to have a say in when it's time to keep the "same old same old," and when it's time to let go. He used to be very insistent on a certain ghost-face-shaped bucket being in his old blue backpack, and on a ragtag assortment of old photos stored therein. The bucket cracked and splintered some time ago and I spent a lot of time duct-taping it together, per Charlie's requests. At some point, water got into the backpack and many of the photos stuck together and got discolored and misshapen; Charlie insisted on keeping all of them and Jim and I, choosing our battles, said, sure.

About a week and a half ago I found Charlie sitting on the floor of his room. He had dumped out all the photos and was looking them over. Some he tore and handed to me. Then he took the photos and put them in batches into the garbage, and the bucket too.

When Charlie was asleep, I dug through the garbage and salvaged what bits of photos were still intact and identifiable. We have tons of digital photos of Charlie (and my parents have boxes, albums, and many more on their computer too), but many of the photos that Charlie had in the old ghost bucket were of when he was little and I didn't yet have a digital camera. I was glad to keep what I could, to see a much smaller Charlie, pulling at a box of Teletubbies figurines I couldn't open fast enough, or astride his red trike in our living room once upon a time in St. Paul.

Still the same face, the same boy and yet, so very changed.