Redesigning the World (while waiting in the waiting room)

So Monday we went down to South Jersey (vs. "North Central Jersey" where we live and "Hudson County" where I work---there's a lot of distinctiveness here in a small area) so Charlie could get a dense array EEG (involved him wearing what looked to me like a shower cap adorned with 128 electrodes over his entire head and forehead too). This was a double-header doctor visit, with the EEG scheduled in the morning at the neurology clinic and an appointment with the neurologist at 2pm.

As related, Charlie, overcome with the not-being-on-the-usual-Monday-schedule (that is, school bus + school) and anxious about the impending test and appointment, got really extremely upset in the parking lot. We got him--still crying and scared, but calming---inside and then it all got better. As in, Charlie was able to sit for 40 minutes with the dense array EEG net. After that, we went out for lunch at the Golden Arches (ok, Jim and I got sandwiches at what we still call the St. Louis Bread Company, aka..........????!???) and sat, conveniently, across from the counter with sodas, straws, ketchup pumps, and napkins. A couple of cups of ketchup later, Charlie asked for his black fleece and walked into the PlayPlace area.

It'd been years since we'd been to one. At one point, Charlie had started to find crawling up the tube slide a great deal more interesting than sliding down it and, after a few "meetings" (=near crashes) with toddlers going down, Charlie's PlayPlace days came to an end. Monday, I instinctually checked the "PlayPlace rules" and noted that Charlie was still met the age limit (something to 12; not that anyone was asking) and up the bright-colored platforms he went. He went up and down several times, each time stopping and turning towards Jim and me, sitting on a bench and reminiscing (of when we'd last sat on benches and watched Charlie "run off and play"---not too often, let's say). When Charlie said "black car," we left and drove back to the neurologist's office or rather to the waiting room, because that's where we sat for some 90 minutes.

Which brings me to the point of this post (aside from an account of Success at the Neurologist after a supertough start). One reason Charlie did so well during the EEG was that, soon as we walked into the room with the EEG tech, we saw a huge (big enough for at least two people) and hugely cushy recliner chair (sort of like this, but plushier and cushier). There was no need to urge Charlie to sit in that chair and, once he was in it, he kind of sunk in further and was quite comfortable (understatement). Frankly, I felt pretty confident about how the EEG was going to go on seeing that chair, which showed that (as further revealed in talking to the EEG tech) that the doctor's office was quite aware of the challenges for kids on the spectrum in getting something like an EEG done.

The technician noted that he'd done EEGs on a couple hundred children and only two had not been able to go through with it. One of those two had been a young woman who refused to get out of the car in the parking lot and I noted that Charlie had indeed had a huge anxiety burst on getting out of the car, prior to entering the building.

Dora and I have both written about the importance of design in creating environments that are accessible and have appropriate accommodations for individuals with disabilities. In response to Jim and me singing the praises of the big comfy chair, the EEG tech commented that the doctors who run the clinic have been talking about finding a different space. The clinic is currently located on the first floor of a rather non-descript office complex. You walk across an exposed parking lot----no trees but short ones at the edges: It's a wide open space with mostly.....concrete.

Next comes a large lobby with a high ceiling, some random spaces on both sides, and some not-so-bad-looking fake leather armchairs. The neurologist's office requires walking across this anomalous divide and looking for a non-existent sign. The only indication that you're where you need to be is white letters stenciled on the glass doors. The waiting room itself is dark. [Please note that the photo used to illustrate this post is not the actual waiting room of Charlie's doctor; the photo is from here.] The chairs have stiff seats and backs with brownish-burgundy carpet-like upholstery; the lighting is harsh but spotty; there's a few small tables and a shelf with not very crisp magazines. Off to the left side is a narrow room with a few chairs and V-tech sort of toys (i.e., they have lots of buttons that make annoying, chimey sounds) and some bead-coaster things.

It's a waiting room of angles and edges, neither of which are the best thing for a clinic that a lot of children with neurological conditions and who may be prone to falling, or throwing themselves, upon the floor, or who are just are not that coordinated. The staff at the clinic are very helpful and really give Charlie individualized attention so the wait (90 minutes last Monday) is worth it. And certainly we've waited with Charlie for equally long periods of time in far more cramped and far more unpleasant surroundings.

Since this clinic really focuses on seeing kids on the spectrum and with neurological disorders, it seems that it would be important for them to make the whole visit less, well, uncomfortable. The clinic is aware of this, as revealed to us by the EEG technician; they are thinking about finding a space that would---like that big cushy recliner---take the needs of kids like Charlie best into account. The EEG technician spoke again and again about how the dense array EEG net made it possible not only to get a more complete reading and a better one, but how it just makes the whole EEG experience easier. For Charlie's first EEG when he was about 3 1/2, each electrode had to be pasted onto his head individually and the EEG technician noted how exhausting, and traumatizing, it was for both the child and the parents or whoever was accompanying him, and how they'd have to restrain kids, and how it was Not Good.

It's Charlie's 12th birthday today. The past several months haven't been at all easy for him. For one thing, Charlie hit puberty a couple months back and he's the size of an........adult. Guess you could say that, we were thinking he'd be 14 years old or a teenager before he was looking Jim in the eye---last year on the beach, Charlie was still a boy, though tall. And he is still a boy, but it's just that he's grown about six inches (at least) in the past year and is still trying to figure out what happened to him, and what to do about his very changed body, and the changed responses of other people to him. And I think, more and more, of how the world around him can be changed to help him in a time of what seems like constant, unending transition---of how the world might be redesigned to make waiting, and testing, and learning, and being a little more peaceful-easy-feeling for my boy and those like him.

Happy birthday to my lovely boy who we love forever, forever, and ever, and who's shown us how to change ourselves, and where to go.