Tuesday, March 5, 2013

On My Toes

 I am told that Golf Season is beginning soon and was reminded to post this previous writing...

Tight calf muscles are the norm for this house.  Today is a perfect example of why.

The Master’s Golf Tournament is on and the last hole is being played.
All three of the men in my life are glued to the screen to watch the final putt.
My husband Todd is standing in the middle of the living room, so he can pace and see over my son Dan, who is nose-to-nose with the screen. My son Ethan is bouncing on the couch periodically yelling at Dan to move out of the way. Otherwise they are all transfixed..

Ethan is 10 and has a diagnosis of PDD-NOS, --the sort of hazy diagnosis that says; “Meh, you’re quirky, somewhere on the Spectrum, but we can’t pin it down.”  He is often our mini-professor, lecturing us on Titanic statistics but struggles with subtle jokes and idioms. If you give him a book on a subject he retains it forever in his brain’s file cabinet, but learning by inference and generalization is hard for him. The more experiences he has, the more he compiles the data though, and he’s doing well in this pre-teen period of slowly increasing social complexities.

 Daniel is 8 and has full-on Autism.
Significant Autism, if you will. --I hate the word “Severe”.
See, Dan got hit with the Big Dogs of Autism. He doesn't have what most people think about when they hear the word. He’s not “Sheldon from the Big Bang Theory”,  Dustin Hoffman’s “Rain Man”,  Leonardo Di Caprio in “What’s Eating Gilbert Grape” or Temple Grandin’s style of Autism. Some days, in secret, I feel that those scenarios would be awesome. 

No, Dan has the kind of Autism where you don’t know what’s going on in his head because he’s too busy stimming on his reflection in your eyeball when he’s supposedly making eye contact. The kind where people stare and assume he has low cognition, and you have to convince everyone, even yourself sometimes (although you never say that out loud), that there is a smart kid in there. The kind where your dream as a parent will come true if he can live in a group home and be safe --even happy-- after you’re gone. 

He has yet to communicate beyond 3-word utterances which are few and far between requiring numerous prompts. He relies on physically guiding us, and it’s hard for people outside of close friends and family to understand him. However, he slowly makes headway, showing us what’s in there in small, sometimes surprising ways and using his iPad to communicate more and more fluidly.
I am hopeful that with maturity this will continue to unfold, revealing the person inside that I know is a witty, nice boy with a quick sense of humor.

I am a pediatric occupational therapist who sometimes is “just” the mom, and sometimes like today, the analyst that sees him through my therapist’s lens. After years of working with children who have disabilities I can’t help but clinically note the muscle tone, perseverative thoughts and so many other things to “work on”. Sometimes the mix of roles becomes overwhelming, because there’s never a break from this world of Autism, and sometimes it’s a gift I don’t know how I managed to be blessed with. They are my family, and because of them the kids that I work with now have become my family too, their moms in a sisterhood with me because we know that our child has so much inside to share. 

I’m positive Dan is a sweet, smart kid because when he can’t communicate a thought he is so patient with us, showing this other-worldly wisdom that I want to emulate in my own communication failures; his eyes pools of patience and sometimes heartbreaking resignation. Occasionally he has begun to show frustration and I don’t blame him. I would have been hitting and kicking a lot sooner.

It’s Dan who is the one to teach our family what is important. He reminds us to be present, grateful for beauty, at peace with life more than anyone else I know. He is our hairy little Buddha. He shows us how to feel the breeze in the spaces between spread fingers. He reminds us to slow down and watch the sun shine through the poplar trees or marvel at the bright, creased blades of grass bending under a dimpled white golf ball. Look, our world is wonderful, he tells us in these wordless moments.

I observe the three men in my life as they watch this game with three different brains, so different and yet so similar in this moment. I wonder if each has any idea what the others are thinking. Are they truly enjoying this “together”?
Oblivious to my watching, they stay absorbed as the small, white ball slowly rolls closer to the hole during this crucial, last putt of the day. As the ball moves, Dan bounces on his toes and flaps his hands, acceleration of the flapping and bouncing occurring at the same rate as the ball’s increasing proximity to the hole.
By the time the ball drops in the flapping is frenzied, all three of my “boys” are holding their breath and I can see that all three of them now are on their toes.

With the roar of the TV crowd all three join in and bounce around the living room.  Todd because a favored player has just won the Masters, Ethan because it was an exciting game with  lots of fanfare, and Dan because a ball was rolling, came close to not falling into the hole, then did go in the hole with the satisfying rattle that everyone loves. Golf aside, Dan would give the winner a trophy because he had just created the best visual and auditory stim ever.

As I watch from the kitchen, frozen in my tracks, my therapist brain and mommy heart see the big picture combined for a fleeting moment in a perfectly superimposed image.
I have mixed feelings; pride and appreciation that my guys are all so enjoying something together and a little bit of chagrin, because it is such a clear visual that I truly live in a land of Autism. 
Standing at the sink I suddenly recognize that my own calf muscles are tight with the readiness required to respond at a moment’s notice. Whatever the universe requires, I'm poised and ready to either dodge it or catch it. 
I feel a rush of joy at seeing such a "normal" family moment and am simultaneously hit with the realization that we are so not even close to normal.  Both emotions wash over me and mix like waves in a tide pool.
They are together, they love each other, they are happy. We are happy, something I could not have said a few years ago. Better than normal.

Back from a commercial break, the music swells, the guys in my living room high-five each other and smile as the winner is given his trophy.  I watch him as he puts on his new, stiff green jacket, face shining, and realize that I have the same feeling of pride and accomplishment. Today, I win too.