Saturday, July 26, 2014

I will read a book all about me.

Last night at bedtime Ryan was nothing like sleepy. Our rule is that after we say goodnight, Ryan can read or play quietly in his room and tuck himself in when he's ready. Usually he chooses to read in bed with a flashlight.

"What book do you want?" I asked him.

He smiled and replied, "I will read a book all about me."

He asked for my book. The book I had written for him when he was five and scared and flying blind and wondering how my baby's future would unfold. It struck me as very important at the time that Ryan should know that he is autistic: that his brain is organized differently than the average brain; that there are lots of people in the world with brains similar to his; and that Different does not mean Less.

I wanted him to grow up hearing - and someday understanding - the word Autism. I wanted to lay the groundwork for a lifetime of pride in himself and his unique strengths and contextualization of his own challenges. I had been appalled by the frequency with which I would find myself in a conversation with another adult while in Ryan's presence and the other person would whisper the word "Autism" the same way they might curse under their breath.

At this point, Ryan's vocabulary does not include the word Autism; it also does not include most contractions or properly-used gender pronouns, so I'm not worried.

Opening my book, Ryan first lingers on the dedication page, which depicts the main character doing a cartwheel and features the words "For Ryan." Then he "reads" aloud, reciting whatever word-sounds he remembers.

Instead of reading "Ben has autism, Ben is awesome," Ryan says "Ben is awesome, Ben is awesome."

Good enough for now. Good enough.

Friday, July 11, 2014

3 minutes of torture

About a year ago I found a therapist I actually like. She's different: she doesn't have a beard, and her office doesn't have a single Persian rug in it. Instead of blandly listening to me babble, she helps me make constructive plans and changes. If she weren't my therapist I think we'd be friends.

The other day she flat out tortured me: she made me sustain eye contact for three whole minutes.

Dear God, I nearly climbed out of my own skin.

I had confessed to her that making eye contact during conversations is something I have to make a conscious effort to do. It makes me uncomfortable, but I know that other people expect me to look them in the eyes when talking and listening. They think if I'm not looking them in the eye it means I'm not paying attention to them, but it's really not true; sometimes eye contact distracts me from what a person is saying, and I have to doodle or focus on something over their shoulder to actually hear their words.

So Dr. Evil sat close to me and told me to maintain eye contact with her while she talked in a non-threatening and supportive way. We locked eyes. After a few seconds, my feet started pedaling. A few more seconds and my right thumbnail was stabbing into my left palm. Stay here, I told myself. My throat closed off. Stay here. Breathe. I vaguely heard the encouraging words she was saying.

"Can I stop?" I begged, swallowing tears.

She moved to a chair across the room.

I felt visceral relief.

But Ryan's eyes, I can look into Ryan's eyes all day and feel nothing but wonder and amazement.

When he lets me.

Which I'd never force him to do.

* I actually have no idea how long it was. It felt like half an hour.

Tuesday, July 1, 2014


Last week I walked 120 miles.

In six days, I walked across Connecticut along Route 1, from New York to Rhode Island. It actually happened. I raised $4,500 and solicited several minutes of tv air time to benefit two charities I adore: The CT RollerGirls, and the New England Ballet Company's adaptive dance program for children with special needs.

I prepared for last week for months: hours of walking to build my physical and mental endurance. I also spent hours plotting my route and drumming up free places to stay each night, and dreaming of six whole days of being responsible for nobody but myself.

I shipped Ryan off to Grandma's house, kissed Stu goodbye, and had a genuine adventure.

And it was bliss.

Our Lady of Perpetual Good Hair. For more pix, see my Instagram.

I'm not going to lie: there were plenty of blisters and lots of chafing, and the back of my right knee started swelling the very first afternoon. There were a handful of moments on Days 2 and 3 when I was tempted to get on a train and go home.

But I felt truly free for the first time in years. Six days without cleaning up after anyone else. Six days without translating autistic communication into my own language. Six days without hearing the goddamn alphabet song at all. Six days of being able to hear myself think.

How does one bathe from a bridge?
I followed my curiosity and my body rhythms, ate when I was hungry, rested when the sun was highest, slept like a rock every night. I shared pictures of the strange things I saw as I walked, and my friends and teammates cheered me on and sometimes even walked along side me to keep me company. I didn't do as much writing as I had thought I would, but I think I gathered lots of ideas to feed my writing over the next few weeks.

Instead of listening to music or my usual NPR shows, I tuned in to my surroundings. I chose to be constantly aware of the world around me. If I had been wearing headphones, I would never have heard two baby deer meowing (did you know that fawns meow?). I heard meowing, looked across the street, and saw the babies. Their mother stepped out from the bushes, stared at me, and started stamping her hooves in what I suppose was an act of intimidation; I did not feel intimidated. Rather, I felt grateful that I had all the time I wanted to take in this scene.

As I crossed the finish line at the Rhode Island border, I felt satisfied, mentally refreshed, and physically not nearly as exhausted as you might have expected. I could have walked another 10 miles that afternoon.

These weirdos drove all the way to RI to cheer for me.

And then I got home.

And I remembered why I had wanted to run away in the first place.

I love Ryan, but I did not miss being a mom last week.

I didn't miss living in the suburbs, four times closer to the nearest cow than the nearest store.

I didn't miss being a grown up.

You know what I missed? My shower. I have a really nice shower.

So now I have to focus on writing this novel about walking away from home so I don't actually do it in real life.