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.

This Moment

When the kids were little, I often used to think about how special the ordinary days were- how just being together - whether doing nothing - or doing some of the simple, seldom noticed, everyday type of things - were moments not to be taken for granted. “Enjoy this moment. It will never come again” would often play out in my head. (It still does.)

I was thinking about this a lot yesterday - even more so than usual.

Yesterday, for the first time in nearly seven months, the entire family was able to be together. The occasion was nothing in particular, other than, after months of each of us taking a lot of precautions, we had the chance to get together, if only for a day.

I picked up Rachael on Friday (after her self-quarantine of a couple of weeks), and Jake drove home yesterday morning (in the midst of his ongoing semi-self, semi-quarantine - at least as best he can while still working), and being Saturday, Helaina, of course, joined us.

With everyone together, we went on a late morning, “socially distant” walk through some of the wooded paths that Sam and I usually walk together in semi-solitude.

The early afternoon was spent having a cookout and, for the first time this year, eating outside on our usually abandoned, sad-looking picnic table - which typically sits buried under junk in the corner of our postage stamp-size backyard.

And after eating, the late afternoon was spent mostly in small talk and then with Jake having to gather up to head back to his so-called “home”.

The brief time we spent together, for this one brief day, was little more than what would have been considered "just an ordinary day", way back when. It would have been a momentary stop on our way to going other places, and doing other things. On our way to being with other people. On our way to living our lives.

Way back when, the moment would have passed, barely noticed by anyone. Except maybe me.

Miscellaneous Walking Updates

It has not been a good week  for going on walks. The temperature's been in the upper eighties to low nineties - which is bad enough, but even that I could deal with. It's the humidity that's the problem. The humidity has been through the roof - the last couple of days, especially. Everything feels damp -  my clothes (even when I'm not dripping in sweat), the bedding (even when I'm not dripping in sweat), the furniture, etc., etc.

I managed to walk Sam to and from work, both Tuesday and Thursday, and we went on walks together both Monday and Tuesday evenings, but they were a chore. We skipped our "regular" walks both Wednesday and Thursday.

When Sam and I manage to go on our walks, we begin (if we remember) by both of us turning on our "Google Fit" apps. This is to keep track of how far we walk. If it does anything more than that, it's news to me.

Anyway, I'm not sure why, but when we're done, the distance reading on Sam's phone is always a little bit different than the reading on mine. It's not off by much - maybe a tenth of a mile or two, but still, I can't figure out why it would be off at all. We have different models of phones, but otherwise, we turn the apps on at the same time, we always walk together, we have the same phone service. Seems like they should read the same.

Also, because we use this app (I'm assuming), at the beginning of every month, I get an email from Google telling me all of the places I went the month before. I got another email just the other day. Last month, I apparently went to a grand total of twenty-eight places. This includes the grocery store (a couple of times), a couple of pizza places (a couple of times), and the comic book store (once). These are the highlights of the exciting places I go. Google is reminding me how boring I am. I'm not insulted by this.

This also means that Sam (who is not boring) went to a total of twenty-eight places last month. Since I was working out of home last month, I don't think I ever left the house without Sam coming along with me (though I do leave him at work- only to walk back later to get him and walk him home). I'm not saying this is good or bad - but this somewhat amazing fact just occurred to me as I was typing this.

Another fact (also thanks to Google keeping an eye on me): Last month, I never traveled further than forty miles away from home. The thing is, even when I'm not working out of home, when I do "more" driving, the furthest away from home I travel is seldom more than maybe triple that amount. More testimony to my boring lifestyle.

Google also tells me that I/we walked a grand total of eighty-three miles last month. This sounds like a lot - but I think it must be right. Our app(s) keeps track of how far we walk every day (assuming we remembered to turn them on) and at the end of the week, I read off the figures to Sam and Sam adds them up. I never remember what the totals are - because I'm usually doing this for the exercise of having Sam add something up - but it seems to me, the past few weeks have been in the mid-twenties or so, mile-wise. This new world's record won't happen this month though, not unless the humidity lets up.

Despite the humidity (did I mention it's been oppressive?) Sam and I squeezed in a walk at the college this afternoon. Supposedly, there's a storm on the way so, in order to miss it, and because we missed out on walking the last couple of days, we figured we better go for now - or forget it. With the weather looking bad for the next few days, it might be a while before we get the chance again. Needless to say, we were drenched (and not by any rain), just getting out of the car. But still, we went. That's how committed (or should be) we are.

Occasionally, very occasionally, when we're on our walks, I'll stop and take a photo of the two of us (some would say, "a selfie", except I hate the word "selfie"). These photos never come out well. Sam, aside from being a handsome guy, has a sensitivity to light. No matter how shady a spot I find, no matter where the sun is, more often than not, he ends up squinting. And me, unfortunately ... it always ends up looking like me - except even older (though that's probably due to my poor eyes). I am loathe to look at myself, whether in photos or reflections, but here, for an extremely limited time, is a sweaty photo (subject-wise) I took of the two of us on this afternoon's walk... 

"Enjoy" it while it lasts. I'll be replacing it shortly.

News Briefs

Here's a screenshot of my phone last night...

What generates this? Why am I getting a news story about the lifespans of chickens.. and why is the article prefaced with, "In cased you missed it"? In case I missed it? Was this a big news story at some point?

And why the calzone story? Plus, it's another "In case you missed it."

Who searches for chicken lifespans? Someone who's waiting to make a calzone? Why is this stuff directed toward me?

Our Morning Stroll

Here, with little or no commentary, are some photos from the walk/stroll/hike that Sam and I went o this morning. This was our first visit here, to Neighboring Town #3, at least, for walking/strolling/hiking. It was kind of a last minute act of desperation.

Sam and I keep a list of various possible destinations for our now-daily walks, but the list is only filled with a dozen or so places. Needless to say, it's been in heavy rotation for quite some time.

I'm not sure how this place jumped to mind this morning- but it did, so off we went.

Some of the photos are fairly blurry, which I think is either due to the profuse amount of sweat pouring out of my still (very) out-of-shape body, or it could be due to my near-constant swatting away at flies and mosquitoes.

Other than my sweat and the flies and mosquitoes (and, oh yeah, my well-known fear of heights), the walk/stroll/hike was a lot of fun.

I don't understand why there are stone walls in some of the wooded places we walk. Here we are in the middle of nowhere, in a deep, thick forest - and for some reason, there's a massively long old stone wall. We see this kind of thing when we go on some of the paths near the tower, as well. They must be at least a hundred years old. Probably older.

Why were these built? I'm assuming they were once for property lines, but really, I have no idea. It must have been a ton of work. This one went on for at least a couple hundred yards.

Here's a closer look (though, I suppose, when you've seen one old stone wall, you've seen them all)...

Since the beginning of the pandemic, painting rocks and placing them along various paths has been "a thing". Like the mystery of the stone walls, I'm not exactly sure why this was done and I'm definitely not sure by whom. Back in the early spring, at the beginning of what's turned into Sam and my months-long walk-a-thon, we used to see them scattered about the sidewalks and the woods, usually with messages like, "Peace" or "Be Yourself" or "You can do it!". Stuff like that. I had kind of forgotten about them because I hadn't seen them for a while - but this morning, I came across this one which, also like the stone walls, was out in the middle of nowhere...

And finally, our destination...

Beautiful view, even if you hate heights. (Just don't get to close to the edge ... or it will pull you over.)

Little Things

It’s been well over three months since I first started working out of home. In that time, a lot of awful stuff has been going on - the pandemic, obviously. The politics, obviously. Our continuing insistence to not view others with any amount of compassion or understanding, unfortunately.

Over these past months, Sam and I have shared a lot of time together, doing a lot of things together. Almost all of these things have been small, seemingly inconsequential things. At least, they would seem to be that way by most measures.

One of the things we've done is go on walks. A lot of walks.

It can be argued, perhaps rightfully, that going on these walks has been pretty useless. After all, we don’t really go anywhere. We walk over familiar town roads. We walk through the quiet woods. We walk across dusty farm fields. Almost always, we're treading paths we’ve walked many times before.

We walk in loops, big and small, always ending up where we began.

Most of our walks are in semi-silence - small conversations, at most. Often, only a stray comment is made as we walk along our path.

Sometimes we talk about some awfulness in the news - often involving something which I struggle to explain.

Sometimes, we talk about little things: about how pretty the clouds look or how green the fields are or how beautiful the air smells after a rainfall on a hot summer's day.

Sometimes we spot small creatures - a toad or a turtle or a snake. And when we do, we stop and watch as it as it climbs or crawls and goes about living it's life - in spite of our unwanted intrusion. We stand together quietly, almost in amazement, remarking about what's in front of us - until  it disappears. Then we, too, move along - fading once again into our thoughtful silence as we continue down our path.

Every day, we walk our big loop. Every day, somewhere different.  Every day, ending up where we started - but still further along than where we were.

Sometimes, with all of the awfulness that surrounds us, it's easy to lose site of how important these little things are. Our lives are made up of these small, seemingly inconsequential moments. But they matter. They give balance to our lives. We carry them with us and they become a part of who we are. And sometimes, they become a part of whom we choose to share these moments with.