Tuesday, July 23, 2013

Presumptions and Consequences

One of my favorite online people passed this video on today. One minute I was idly scrolling through my Facebook feed, the next I sat stunned, with tears rolling down my face, as I watched that story.

Carly Fleischmann isn't just another individual with autism--she's my child, she's your child, your neighbor's or your best friend's sister's boy, or your cousin's niece. She's as brave as any of them, and all of them put together. She's the adult down the street, living alone and never looking up as you drive by and wave. She's the three-year old at your child's daycare who just wants to stack blocks all day, never playing with others.

Also? She's this kid. The kid for whom--deservedly--standing ovations are given. She is Barb Rentenbach, autistic author extraordinaire. She is Temple Grandin--autistic author, professor, activist, and agricultural world-changer.

Carly Fleischmann's father is me. As he speaks of the long hours spent on methods and therapy and skill-sets and motivation, he is me. When he chokes up as he talks of really hearing his daughter for the first time, long outside of what is considered a "typical" time-frame, he is me.

When his voice breaks as he remembers the time he wasted talking *around* his daughter rather than *to* her, he is me. How much time did I waste, doing things for my son, while hiding behind my fear that he wouldn't be able to do it himself? How many times did I assume that because he wasn't looking, he wasn't listening?

Too many times. I'm still guilty of it, if I'm going to be honest. He is sucked into his iPad--intent on reading, or watching videos, or playing games--as I call his name, and he doesn't look up. I hesitate, assuming he did not hear me, or is just ignoring me. He's not. He pulls his eyes away from the screen--slowly, reluctantly--and meets my eyes.

He would not have done so just a year ago, and certainly not two years ago. TWO years ago, he did not know his name. 

 Today, he is a champion, masquerading as a miracle.

We--all of us--have grown a lot in two years. The therapy, the supports, the routines, the methods were as much for us as they were for him.

As I watched that video once, twice, three times tonight, I kept thinking, This is how it should be.

Help, therapy, learning, accommodation, challenging--repeat.

I live in a state, though, where the Carlys are getting left behind. In the past year, I have spoken with more people than I care to count whose young children needed the kind of help Carly benefited from. All of them thus far have been denied it, in one way or another. Late last month, our governor dealt an even bigger blow to services for the Carlys, and the neighbor's kids, and the 3-year olds in daycares. Our legislators couldn't even be bothered to show up to reconsider it.

The Carlys of the world are not just important to their families. Her progress, and the skills she has fought hard for do not just benefit her--they benefit an ever-growing community that is desperate for change, and even more so for understanding. Carly was able to find her voice--in her own way--and as a result we now have the ability to hear her. Therapists have a better idea of strategies that may work, doctors are able learn first-hand what it feels like when your body rebels against you, and parents--Mr. Governor--parents get to hear their child say "I love you."

Budget concerns seems sort of paltry in comparison to that, don't they?

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