Hard Truths that Demand to be Lived With

Ali Family Autism Truths #10 – April 10, 2016

There was a big group of teenage boys out practicing lacrosse on the field today where I took D for his weekly Open Gym session, better known as The John Maloney Project. Young, strapping 14-17 year olds, from what I could guess, going through sprints and lacrosse formations. Healthy young men, calling out to each other, joking, listening to their coach, sweating and putting in a good practice.

All the while D and his other compatriots walked or jogged laps around the track with their enthusiastic high school partners, while the lacrosse team practiced on the inside field.

The sun was shining, the wind was blowing, and it was altogether a gorgeous day for Open Gym.

Readers of this blog will know that Open Gym is a fall and spring program where high school students are paired up with autistic kids and teens to partake in physical activities. D’s been going for more than a decade, faithfully every fall and every spring, save for the fall when I gave birth to H eight years ago. He has had some phenomenal seasons and partners, and some not so good ones.

My days of comparisons are long done. Those early years when I watched the children of other friends developing on schedule, hitting their pediatrician-approved milestones and saying Ma-Ma and Da-Da on cue – while I worried and fretted over D’s lack of progress and increasingly withdrawn behavior. When he was officially diagnosed with autism and our path dramatically veered away the well-trod road others were travelling.

When I would marvel over the things my own second child, A, was doing and immediately get by a ton of bricks thinking that D not only didn’t do those things at that same age, but still didn’t do those things.

Those days are by and large long gone. Truth.

But what is also true is that ever so often, when you least expect it, when you feel as sure-footed as you ever have felt, it creeps back on you in an insidious way.

Those healthy, full-of-energy lacrosse players. My son, the same age as many of them, spinning his beads and walking the track.

There’s a reason why I have dubbed these posts for the past two years “Ali Family Autism Truths.” These are not just D’s truths. They can never be exclusively his truths, because I cannot speak for him. When and if and how he decides to share what his thoughts and truths are, that will be an entirely different matter.

These are Family Truths. Sometimes, in all honesty, these are my truths.

Like today, when the throat constricted and the unseen tears flooded the back of the eyes, looking at the lacrosse boys and my boy.

When I admittedly briefly think – it shouldn’t be this way. It shouldn’t. It shouldn’t. This shouldn’t be D’s life.

I know admitting this private thought goes against all that makes up the neurodiversity movement and the hard battles autistics are fighting to own their own narratives and turn the perception of autism from one filled with negativity and sorrow to one of pride and self-determination. Yes. Absolutely.

I know D’s story is still being written. That there is no timeline on progress. That there is much still to happen. That anything can happen. Anything usually does.

I also know how many challenges D has faced to this day. I know how profound his autism manifests. I don’t know, even now, nearly enough about what he is thinking, feeling, wanting, needing, hoping and praying for. We are working incessantly towards that knowledge, but it still eludes our grasp.

And so, when I least expect it, moments like the one I had today creep up. Rare as they are, they do. Hard truths that demand to be lived with.

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