The Long Way Back Up (#252)
What's the Big Secret to a Great Day in Autismland? (#254)

Missing Channels & Switching Milestones (#253)

We reached a milestone of sorts today: I wore a hand-me-down from Charlie.

It was a blue hooded sweatshirt that my mom had got for him last fall; Charlie has worn it maybe twice. He has always -- as in it showed up on the ultrasound -- had a large head and I could tell he did not like yanking the sweatshirt over his forehead and face. As a kindly member of the Water Aerobics class at the pool noted with a smile to me tonight: "So does he weigh as much as you now?"
It's Spring Break at the college where I teach so I have not had to throw together some combination of sweater and skirt and dust the chalk off my shoes. The sweatshirt still feels new and fits perfectly, except the sleeves are "bracelet length."

When Charlie was a baby--apricot cheeks and smooth-soft black hair--I used to watch him sleep and think, if only he could always stay this little, this sweet babe in my arms. Often when he was a toddler and then preschool age I would stop short and push away a wish that his fifth birthday would take its time--might never--come. "Five" seemed like a magic number--seemed to be synonymous with kindergarten, not the self-contained autism classroom that Charlie was in at the age of five and up. "By the time Charlie is X years old he'll be doing this and I'll be able to get on with my life," was a thought I often thought, and often pushed away, as Charlie got older, bigger, and farther away from each developmental milestone.

But what am I thinking?

"Talking before his 2nd birthday." "Reading at 7." "Mainstreamed with an aide by 2nd grade." "Not age-appropriate on his academic skills at 9 so it's time that his learning is mostly functional." "Done with school at 21."

What do these ages, these numbers, mean?

These might be "milestones" because a lot of people are documented as having done certain things at those certain ages. But, if I might assume that Charlie lives his full span of years, why should his turning 21 mean no more teaching him to work on his reading skills so that he advances from sentences to a novel? Or at least a bit of poetry, or a cookbook, or the sports section of the paper? Why should Charlie, like Jessy Park as her mother, Clara Claiborne Park tells it in Exiting Nirvana: A Daughter's Life With Autism, not look forward to a long life rich in constant learning?

In Autismland, the signs that tell you it's this many miles to New York or Boston or Vancouver or St. Paul have all gotten switched around. It makes for chaotic traveling, but--instead of relying on some sign some government agency posted--you look at where you are, here, now. In Autismland, you're often in channel-surfing mode, skipping around amid the stations, trying to find the one you want.
It is the "switching" among channels that Charlie has had trouble with these past few days. Again this morning he was fine when he woke up, groggily smooshed his face into the couch, cried out and knocked his head when I casually mentioned what we had done last night--then smiled, and got on the bus, and had a nice day at school, on a walk, doing ABA at home after another staticky interlude of switching channels (from "Hanging Out" to "Working on Reading"). After dinner, I mentioned going to the pool and Charlie ran to put on his swimsuit.

On the way to the pool, I put in a new CD, Neko Case's Fox Confessor Brings the Flood. Charlie sat, intent. He has been talking a lot about "turn on Barney" and "we hah' Barney we hah' BJ we hah' Baby Bop turn on I wuvoo!" though never asking to hear the purple dinosaur's renditions of childhood classics.

At the pool, how Charlie's face brightened and stared to see several kids his age splashing with their swim noodles. He swam carefully beside them and even (I think) imitated one boy's technique of standing on a noodle and moving through the water. A young boy with Down's Syndrome was in the water with his siblings and--though his mother said they still had to have dinner (and it was past 7.30pm)--kept swimming. His dad called, cajoled, and finally--when the boy was by the wall in the shallow end--scooped him up. The boy cried and waved his arms but he was far smaller than his dad (and Charlie) and, still yelling, was carried out.

I thought about how Charlie can do a lot more than flailing his arms, can yell ten times louder, and cannot be carried out, at least by me. I thought about hanging onto wailing Charlie on the lawn yesterday and felt that father's struggle.

I thought about how, on our walk, we sighted a young, pony-tailed woman saying "Hi, hi there!" into her cell phone. Charlie stopped and looked at her. "HI!" he called. "HI! Hi Miss Greene." It is true, this young woman kind of resembled one of Charlie's former speech therapists. Under several more Charlie "hi!" 's, the young woman got into her SUV and kept talking into her cell phone. "Well, she looks like Miss Greene, sort of," I said. "But Miss Greene has a red car." Charlie said a few more hi's and we walked on.

So "better times collide with now and better times are coming still."

Another milestone: Charlie and I will both be pressing the keys to switch to our new CD for awhile.



You are absolutely right about letting go of milestones. Isn't the theory of learning that it should be life long? I think that I did most of my emotional development in my late 20's early 30's. Most people seem to get it sooner, later and some never. That's when I finally got "it". "It" referring to what I'm about and how to make it all work in the world we live in.
I like the guide that milestones give, but I have to remember not to chain myself and Gabe to them.


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