|Posted on June 19, 2015 at 9:10 AM|
My blogging today is courtesy the Easter Seals blog, where it is titled: Fatherhood with autism in the mix. Thank You so much to Easter Seals for asking for it, and continuing to help spread the word about autism.
This posting looks a lot prettier at the Easter Seals blog, which also includes a couple of pics, so I recommend you read it there. But if for some reason you can't get there (like if their website's down), I've included it here too.
And Happy Fathers Day to all of my fellow dads, whatever you're dealing with!
Fathers Days and Nights
(Fatherhood with autism in the mix)
Easter Seals guest blogger
June 19, 2015
Fact 1: Nothing changes a guy’s life like fatherhood.
Fact 2: Nothing changes fatherhood like autism.
To be clear from the outset, when I refer to autism, I mean the classic, severe disorder that negatively and profoundly impacts the person for their entire lifespan. That is our son Ben's reality. I am not referring, necessarily, to higher-functioning and Aspergers individuals. Many, unlike Ben, can speak eloquently – or otherwise communicate – about autism and what it is for them, often not seen as a disorder at all, but a difference. I am writing only about what it has meant for Ben and for us.
Rocking newborn Ben or his twin Jake as they fussed at 3:00am, almost 22 years ago, I was sleepless, sweaty (it was a hot summer), exhausted, and getting to know the local cop's overnight schedule patrolling the neighborhood.
Late night feedings are just one of countless little and big parental tasks and challenges - arduous, annoying, mundane, stressful, surprising, and required. They're ploughed through with eyes (and ears and nostrils) focused beyond. A potentially wonderful, or at least decent and reasonably happy future awaits, we hope -- for them and, unconsciously at least, for us too, Mom and Dad, with dreams for them and joy from sharing them for the rest of our lives.
One of those long nights, a favorite symphony of mine came on the radio as I held Ben, and in my drowsy, half-dreamy state, I pictured him growing into a conductor, the top spot in the classical music world, except for being a composer. So I envisioned him as the composer and the conductor. Then I imagined him simply getting to know and love this symphony, of my sharing this with him, discussing it with him, attending concerts with him.
OK, time for some of those changes.
Forget about Ben being a conductor. Or composer.
Forget about Ben talking about music beyond a word or two.
And forget about sitting with Ben in Orchestra Hall with the Mahler 3rd blazing.
But there's good stuff.
Ben is a musically perceptive guy, and he has strong preferences and loves. Even buried under his autism, with only little geysers of musical awareness bubbling up, we know for example, based on requests, he likes horns and brass, mandolins, violins, Schubert piano music, and Rafi (oh well). Overall, the guy has fine taste.
Our listening is done in the car, where he reads the stereo panel's display to see what's being played. Sometimes it's clear, but he often comes up with his own "interpretations" of what he reads.
Like "Freight Car." We figured out this means Nickel Creek's bootleg Freight and Salvage disc, because the display's limited length only gets as far as "Freight and Sa".
Then there's "Monkey's Music," which was Thelonious Monk's "Monk's Music." It wasn't obvious since Ben also loves monkeys, but it does suggest how strongly he feels about one of Monk's greatest albums.
And when he spontaneously belts out a chorus of something-or-other at the top of his lungs while loping through Target, it's always in tune.
So Ben's definitely musical. And I am deeply thankful for that.
The parental task and challenge for me - arduous, and required, maybe especially on Fathers Day, is to avoid thinking about what his musicality would mean without the shackles of autism.
But if I have a philosophy of life, it's that life is a re-frame. If the glass is half-empty, find a different glass.
Ben's aptitude for appreciating and loving music will never put him on a podium in front of an orchestra or behind a drum set driving a band (like his dad's younger days). Or even sitting at a gig, listening.
Those are "what if"s.
What IS, for Ben, is the pure joy he gets from music. The grin that appears when a favorite tune begins on the stereo, or a request for a certain disc is fulfilled, or a favorite ditty is sung to him, or a favorite ditty is sung BY him in McDonald's at fortissimo...
There has never been a composer, conductor, drummer or songbird who loves music more than Ben.
That makes my own heart sing. And even without the card, there is no better gift on Fathers Day.
Ben loves to sing bits of songs he likes, as well as his own ditties (such as "A la la la Bubbe; A la la la Big Bird; Hef! Hef!"), often at the top of his lungs, and anywhere he feels like it when inspiration strikes, from a walk in the woods to a jammed McDonald's line of startled customers. Or, like here, sitting on his bed, June 21, 2015.