**Originally posted New Year’s Day 2016. The last 2 years have been harbingers of change, both good and not so good both as special needs families and also as citizens of the US. Every few months, I come up for air to advocate, teach and discuss some uncomfortable truths only to slip quietly under the water again to peacefully watch my children’s lives pass before my eyes. The future looks a bit bleak for those of us who can see retirement years on the horizon at the exact same time our disabled children “age out” of the system and also our parents are elderly enough to run out whatever savings they might have. It is too hard to dance freely on the rails without worrying about the oncoming future barreling down like a freight train. Perspective is always an odd thing, especially in retrospect. I wish all of you the freedom of worry and the ability for mindfulness in the coming year.
A few weeks ago I was stuck in traffic. Albeit Midwest traffic, but a standstill is a standstill. A1 was incensed in the same way any curmudgeonly old man dealing with road lock might with a loud “C’Mon!!!” and a quivering fist in the air. Except he is a 6th grader who was going to be late for religious school. And he has never personally navigated traffic of any kind. I calmly explained to him that sometimes life is quirky. Had we left 15 minutes earlier we might be part of the accident slowing everything down. Or maybe by showing up 15 minutes late he might miss the most boring part of class. For all we know inconvenience is a blessing in disguise.
For all we know.
Netflix is showing the movie Sliding Doors this month (and serendipitously also showing Serendipity, a way more palatable existential rom-com). Gwenneth Paltrow’s life splits off into parallel simultaneous existences based on minor differences in circumstance that alter the outcome of her immediate future.
Ultimately, three things are revealed:
#1 The event that changed everything was out of her control, seemingly extraneous and unnoticed by her
#2. Everything that happens happens in parallels whether she is part of it or not
#3. The outcome somehow is going to be the same regardless of the path.
I showed this movie to A1 to drive a concrete point home in the spirit of control and lack there of. I have this funny thing with the idea of omnipotence and omniscience at the same time–a notion that seems cruel to those of us whose minds cannot conform in that manner no matter how much salvation sounds like a cozy deity-down comforter everyone else can snuggle in. It means people like A1 and me are damned from the start because we just CAN’T …and it was planned it that way. Like being forced as a child to hug and kiss a relative even when that relative knows it makes you uncomfortable to do so. All in the name of making that relative feel warm and special. Except what kind of weirdo feels all the good feels by making a child squish their body against theirs against their will? That is why I show Netflix movies to my kid instead of reading parables. I’d rather he believe that people just think he has bad taste in movies than that his life and choices are meaningless and filled with anxiety because his synapses don’t fire in a way that will ultimately please an all knowing being who made him that way. We cannot help thinking about how our moments might be affecting an unknown future.
A2 operates differently. These things do not need to be explained to him because he is only in the present. I am happy because Daddy is here NOW. I am not happy because I want Daddy here NOW. NOW I am happy and screw Daddy because we are on our way to Chuck E. Cheeses. If all is no worse than status quo, then optimism and hope are not necessary if you are only worried about right now. It really isn’t until someone introduces you to unrealized expectations or well conditioned responses that you develop a sense of disappointment, dashed hopes and anxiety of an unknown future.
In recent years A2 has also taken to obsessively asking “what is the time?” and watching any clock either as if it is a piece of art to be analyzed and admired or else as if at any time it might fly off the wall and attack him like the starlings from The Birds. His authenticity and ability for stopping and acknowledging the moment in the the moment, realizing there will be a new moment soon is a gift.
As we stand on these tracks together I think about how Autism has robbed A2 of a regular childhood but probably not because he views it that way but because I do. There is a lot of track already behind him but there is much more ahead and I strain to see the horizon in case a train comes barreling down the tracks…because at some point there will be a train. And there is nothing I can do to stop that. However, A2 only looks at the rails beneath his feet being careful not to trip and he only looks back to look at me. If he were to hear the distant whistle, I am sure he would simply step off the track in that moment so he could watch the train go by. Because my focus is on the horizons while stumbling down the rails, I run the risk of getting my foot stuck between the slats and then panicking thinking about the possibility of the oncoming engine. I am hoping that in 2016 I can continue learning from A2 as I struggle with the concept of mindfulness, especially when the moment seems bleak. I hope for the ability to recognize each moment as unique and not as good or bad and that I can cherish the people and things that are important to me regardless of how time seems to be treating us in the moment.
I just need to remember to point to my wrist and ask “what is the time?” and know that it will be different soon.