Whether or not Amanda and I are always sharing the same map I consider myself lucky that our paths have crossed...
Loving Lampposts, curing autism, and the dark
There's an incredible documentary about autism, “Loving Lampposts,” directed by Todd Drezner, the father of an autistic son. The documentary is about the ongoing debate in the autism community: Is autism a sickness that we need to cure? Or is it a variation in the human brain and simply an alternative way to think?
The “recovery movement” is made up of those individuals – doctors, parents, therapists – who believe that there is an “epidemic,” which may have been caused by toxic vaccines, insecticides, or other environmental toxins. They look at autism as a sickness that needs to be cured or healed or from which a victim needs to recover.
The “neurodiversity” movement, by contrast, preaches against focus on cures and treatments, pushing instead for greater acceptance and support. Many autistic adults find themselves in this group, apparently, rejecting the idea that they are sick and need to be cured. That doesn't mean they don't recognize the challenge of living with autism in this world, but they would rather see more attention on embracing people with differences, rather than trying to “fix” them.
On most days now, I'm happy to consider myself a member of this second group. I do believe that autism is a fundamental part of who my son is. While the condition is to blame for many of his challenges in life, such as his communication difficulties and troubles with coordination, it is also, I believe, responsible for many of his remarkable gifts: He can easily memorize complete books, movies, TV shows. He sings pitch-perfectly and has a perfect memory for tune. He has an amazing sense of rhythm. I don't want to cure him of who he is.
But occasionally I experience what St. John of the Cross described as “the dark night of the soul.” These hours seem to last an eternity, and most frequently occur when I wake up in the middle of the night – maybe Willow needs a diaper change or, more often these days, Billy wakes us up over the baby monitor with a startlingly sudden verbatim rendition of the dance party sequence in “Charlie Brown Christmas” – and I find it nigh unto impossible to get back to sleep. During those creeping hours between about two and five a.m., I wonder, “Couldn't we just cure a couple of things? How can I recover his ability to sleep?”
And then I start planning out the next day, thinking about all the ways I can use every single moment to teach him something new. Every single moment. I'm petrified by the sense that time is slipping away from me, that a “teaching moment” might slip through my fingers, and it'll be lost forever. As though he has one moment on a Tuesday afternoon to learn how to spell “cat” and after that, the moment is gone.
It's the middle of the night. I get a little crazy.
Case in point: We had just come off a week of “stay-cation.” That's what it's called apparently when you stay at home and act like a tourist in your hometown.
We had a great week. We went to the Mary Brogan Museum, the park, the movies, the bowling alley. We tried to find “teaching moments” everywhere we went.
At the bowling alley, I showed Billy that his ball had the number 8 on it, and mine had a number 15. Each time the balls came out, he would find the number 8 or help me find my ball or Daddy's ball. It was great.
A couple of nights later, it's 3 a.m. and I'm thinking about the bowling trip. And I'm thinking about ways I could have made it more educational.
“The shoes!” I think. “There were numbers on the shoes!”
I couldn't believe I had missed that. I could have taught him his shoe size. It was printed right there on the back of his shoes. We could have talked about how Daddy's size was bigger because his feet were bigger. We could have learned sizes and “big, bigger, biggest” and which number is larger ... I could have kicked myself for missing it.
Like I said, it's 3 a.m., and things get a little out of perspective.
“I have to remember the sizes next time!” I tell myself. “How will I remember?” And it occurs to me that I have to leave myself a note. Otherwise, I won't remember by the morning, much less by the next time we go bowling.
So I sneak out of bed and downstairs at 3 a.m. to write myself a note.
And that's how I came to find Dave, the next morning, standing in front of the fridge with a puzzled expression on his face, holding a carton of milk in one hand and a Post-it note urging him, “DON'T FORGET: NUMBERS ARE ON SHOES!!!!!!!” in the other.
He doesn't even ask. He just sticks it back to the fridge with a magnetized letter “Q” and takes his milk to the table.
Billy comes to the table looking beautiful and sleepy-eyed and announces, “Cereal! With milk!” After a moment: “Please!”
And I look from Billy to the fridge covered with my crazy notes to myself and I wonder seriously about which one of us is dealing with the bigger issues.
Neurodiversity it is.
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