It's All Part of the Design

Maybe things do get better sometimes.

Much of the news of late (especially given the "current economic climate") hasn't exactly been upbeat. And certainly when it comes to understanding about autism, and the kinds of education, services and supports that would truly help individuals on the spectrum, more than a few of us seem weary of the numerous calls (especially this past "Autism Awareness Month") for "more autism awareness"---what good is "awareness" without real change?

But some things have gotten better, albeit in small and not-so-noticeable ways.

Take shoe-tying. I'd always thought this was one of those milestones of childhood development, independence, etc., etc.. We started trying to teach Charlie when he was 5 and then it was 6 and then we "put that on hold" and then tried again at 8 1/2----around which time I got Jim his first pair of black suede slip-on shoes, and realized that I myself prefer shoes you can just shove your feet into and run out the door with. My parents diligently went to the kids' section of a department store and came back with, voilà, black suede Merrell shoes in size whatever Charlie was wearing then (his feet were still smaller than mine then, but fast gaining). Suddenly getting out the door was rendered a couple-fold easer, as Charlie had only to slip his feet into his shoes and go. And here was his Dad doing it too (ok, I still allow the occasional buckle on one of my shoes but no laces, except on my running shoes).

We've gotten sneaks for Charlie for gym and our various forays into sports (like Special Olympics basketball) but the general consensus has been, the black shoes are fine. Charlie has certainly done his best to pull the shoelaces on a practice shoe straight and he's very patient having his shoes laced and tied onto his feet. But he always got stuck when it was to try to thread one lace through the other to make a knot and it was generally agreed, better to spend time on other things and the black shoes were fine for gym. (They certainly work well for bike riding.)

It's simple things like those black shoes that have made things easier for Charlie and have made it possible for him to be less reliant on us. I've long been thankful for the invention of polar fleece, both for its comforting properties (as blankets, jackets, gloves, hats, you name it) and who says pants have to have buttons and zippers and that you have to wear belts? Charlie's fingers are long and lithe and can move around the piano keys, but grasping pencils and fastening buttons: Not his forte. Sure I wish he could write all of his letters so that they're legible, but being able to type (something that's still on the list of things to learn) can enable him to get his point across, without having to worry about penmanship. Why not embrace and put to good use the innovations that have been created, so that Charlie can have more chances to handle things by himself, than he might have in the past?

Another example is the squishy ball made of mushable, gooey-soft plastic. I first ordered a bunch of colorful inside-out squishy balls for Charlie to busy his fidgety fingers with from a catalogue of products for special needs kids. Next year, those inside-out balls were all the rage in toy stores and, eventually in Walgreens.

Or consider this blue bookbag I got Charlie for use in school this year. It doesn't have all the compartments, zippers, mesh pockets, embellishments, patches, of the typical middle-schooler backpack these days. Maybe those are the right choice for some kids, but Charlie pretty much ignores all the extras and just sticks stuff into the one main pouch (which, in his bag, is nice and roomy). It's happened that he's almost taken home another's chid's lunchbox or backpack (Charlie has an old beat-up blue one, which he still keeps around for security)---no one else has a bag like his, so that's impossible. (I mean, what would we do if Charlie came home with the wrong bag?) (And, his little bag is completely machine washable, has his name imprinted on the cover, and closes with two solid snaps.) (Guess I always have fine motor coordination on my mind.)

I guess I could go on: I'm glad for cotton ripstop pants that are light and loose for Charlie to wear; it's always hit or miss if he'll let us know that he doesn't like the feel of his clothes. I'm ridiculously grateful for the microwave oven and (oh yes) frozen food, as these have provided Charlie with a burgeoning ability to cook food for himself. The list goes on: child safety locks (yes, we still have them on in the black car, resulting in any backseat passengers always having to wait patiently for Jim and me to let them); cell phones (I figure Charlie will have one some day and we'll be able to know where he is and he'll be able, because I've programmed it into his phone, to call us at a button's push).

Dora wrote about accessibility, technology, and universal design:

.... design stuff so everyone can use it. Most of us have experienced the benefits of universal design when we make use of handrails on stair cases, even if we don't have a disability which makes the handrails always necessary......

Charlie, and Jim and me, can accommodate ourselves to walking on ramps and toilets of various heights (hey, accommodations matter, and especially in places that we all frequent). We park the black car in whatever place, and see that there are spaces closer to the stores for those who need them. There are some accommodations that Charlie needs, and some not.

On the April 8th By Design blog in the New York Times, Allison Arieff writes about Designing Through Depress:

Designers can work to improve on existing necessities as well as future ones: why, for example, can’t toothbrushes be designed to last longer? When will we see a lamp that casts a truly flattering glow from compact fluorescents ? (Vu1 is just about there, having created an electron stimulated lightbulb that is as efficient as a CFL but is mercury-free.)

Next quote comes from the last paragraph and yes, I know, mentioning "mercury-free" on an autism blog is like throwing a match into a recycling bin---leave it at that.

At its heart, design is about problem-solving, but it’s also about problem-identifying. Instead of creating a need for things, designers can now focus on responding to things we do need. We may have never been confronted with as many problems as we are today; the blame for them can’t be attributed to designers, but many future solutions can — and will be.

"Things we do need": Where can I start my list of things that Charlie might need to make it just a bit easier, easeful-er, for him to manage day by day? More light and higher ceilings and something besides those d****d fluorescent lights in his classrooms---a desk and a chair that would fit a boy who is still a boy but just keeps growing into adult size and sizes----other changes in the design of things that make "doing it on his own" a phrase about possibility, rather than frustrating failure again and again.........

In our life with Charlie, I'm reminded again and again that the smallest changes, the minutest bits of progress, count as much as gold.

And maybe even velcro.