The Most Wonderful Time of the Year

Boy, has it been three years already? Apparently, it’s time to reapply for Sam’s ADA bus pass. When Sam was last (and first) granted an ADA bus pass, it was only good for three years. After those three years (which is now), Sam would need to reapply. I guess this is because the bus company figured that after three years, there's a chance that Sam might no longer be autistic.

We’ve been working on it.

The application is ten pages long (not counting the two page cover letter). This means ten pages of questions that either don’t apply or need such nuanced answers, depending on context, that it’s nearly impossible to cover all the potential circumstances. Some questions are of the "Agree/Disagree/Not Sure" variety, some are of the "Always/Sometimes/Never/Not Sure" variety and some are of the "mini-essay" variety. Just like being back in school.

It’s not just that I hate filling out these kinds of things (which I do) but it’s also the fact that the Bus Company People already know him. He’s been taking their bus for three years. He goes into their offices frequently to add more money to his card. They've called him - and he's called them - to confirm or cancel buses. They’ve met him. They’ve talked with him. I guess the paperwork is more important than knowledge and familiarity.

Contrary to what anyone may think, having the ADA bus pass does not mean Sam gets to ride for free. In fact, the fare they charge someone like Sam is much higher than their regular fare - double, I think. All that having this pass means is that Sam can arrange for a bus - which may or may not have to be scheduled around the understandable and unique needs of other disabled passengers - to come and pick him up and bring him to where he needs to be - hopefully on time.

Sometimes, the bus will get him to his destination right on the dot. But often, it will get him there much earlier than he needs to arrive (thank god he can get into the building, especially on those bitterly cold winter mornings). When he gets picked up after work, his wait can be anywhere from ten minutes to sometimes over an hour (see comment about bitterly cold winter mornings above). Still, it's way better than him trying to navigate crossing the busy streets by himself.

Three years ago, this form caused me no end of anguish. First of all, about a third of the application has questions that seem specifically geared towards someone with physical disabilities. Can he walk up and down three steps if there are handrails? Yes. Travel one level block if the weather is good? Yes. Those kinds of questions are no problem.

Where I run into trouble is when it gets to questions like, Wait fifteen minutes at a bus stop that does not have a seat or a shelter? Well, it depends. Physically, yes. But is he going to be - or more importantly - think he's going to be - late to where he needs to go? There needs to be a second part to the question, something like, Will this trigger his anxiety? Answer: Almost certainly. Here's a suggestion for a third part of the question: Will he then try to cross a busy road to go out on his own? Answer: Probably. Under the best of conditions, crossing a busy road is nearly impossible for Sam, let alone when he’s overcome with anxiety and only focused on how to get to where he needs to be - as opposed to, say, the car(s) that are about to hit him.

Then there are questions like, Describe your disability and explain in detail how it prevents you from using the fixed bus route some of the time or all of the time. Okay. How much time do you have? There are four lines for this answer. Sam’s neuropsychological evaluation is eleven pages long. Of these eleven pages, the last three pages consist of the summary and descriptions of his disabilities. It’s hard to distill these three pages down - to distill Sam's life down - to four lines.

Even then, it’s tough to answer these kinds of questions. Like most of us, things are not black and white with Sam. Context matters. Environment hugely matters. We don’t  need to get into all of the minutia - but in the end, that’s what life is. It's minutia. It's moments made up of an infinite amount of nuances and variables, often subtle, sometimes imperceptible. It's changes in our surroundings and in our perceptions and therefore, our reactions. And sometimes, maybe even often, these infinite combinations will trigger profoundly different responses, especially in someone like Sam. 

The other thing that caused me anguish three years ago was the fact that a portion of this application had to be filled out by his physician. This is still the case. But three years ago, his longtime physician, someone who was familiar with Sam's nuances, had just retired, leaving a replacement who was entirely unfamiliar with Sam. In addition to that loss, the physician who had tested Sam and wrote his evaluation, had also retired.

I felt even more adrift and panicky than usual (which is saying a lot). Now, at least, Sam's not quite "new” physician has had three years to get to know Sam. And despite my panic of three years ago, I ultimately found her to be quite accommodating.

I’m hoping this is still true, three years later. Her portion of this thing is two pages long - and none of it is multiple choice.