A long time ago (definitely “before Charlie,” which is “bC” to Jim and me) “someone” (she writes poetry) wrote this to me:
Poetry is life; it should change everything around it. Do only what changes you.
The lines were written at the end of a letter regarding a topic that was, at that point in time (I was about half as old as I am as I write this), of total everything significance to my life: What should I study in graduate school?
I was a Classics major in college and, finding the sustained study of Latin and ancient Greek intellectually intriguing, albeit …read more

So you know how we made sure to have a very lowkey Thanksgiving and also to keep things real simple and understated for Charlie’s birthday, a holiday involving days off from school and an event that has been known to cause Charlie some serious consternation? In 2008, both of these days passed well and quietly for us, largely because we strove to make them Super No Big Deal in the biggest way.
So you think I’d have applied the same tried and true formula to Christmas and New Year’s.
Granted, since we take a 3000 mile airplane trip from New Jersey …read more

Something Charlie already has in book/video/DVD form………. It was the first present he opened and the one he kept by him when he fell asleep on the couch. (Any guesses?)

The other day I read a review of a play by an Irish playwright, and was reminded of another of his plays and was relieved it was a bright morning of full sunshine and a strong wind pushing away the clouds, or I would have been spooked, as this other play (to me) was thoroughly terrifying in a Kafkaesque kind of way (but keep in mind, I can’t handle seeing horror movie).
I was distracted by other things and then, before I knew it, I was running down the stairs to meet Charlie’s schoolbus, and watching him make his lunch, and …read more

Soon as December started, my students started asking me what we were getting Charlie for Christmas. I fumbled with an answer—what do you get for the child who doesn’t ask for anything?—and they seemed quite incredulous that he’d no desire for any electronic devices or a football jersey with X player’s last name emblazoned on it. I’ve been used to telling people that things are different with Charlie but, on further reflection, the thought occurred to me:
Charlie, at 11 1/2, is getting closer and closer in age to my college-students. Certainly there’s more than a few similarities between him and …read more

When Charlie was first diagnosed and for many years after, sounds loud or soft, low or high, did not seem to bother him. He was certainly drawn to music but didn’t seem particularly bothered by sirens, loud merry-go-round music, shouts, fire drills. Every time we had to fill out a checklist, or talk to a new teacher or OT, we always shrugged “no, no” about “any sound sensitivities.”
Fast forward to about two years ago, when a motorcycle shot past the black car and suddenly I heard a knocking sound: Charlie knocking his head on the back of the seat and …read more

I can’t prove it right now, but I’m more and more thinking that Charlie may well have perfect pitch.
Though without a piano or cello teacher (I’ve followed a few leads, but with no luck, yet), Charlie has still been practicing, and has often asked to “play cello” in the later afternoon, before he and I go on our usual walk. Last week, after I took the cello out of its case, a few strums on the strings revealed that it was really out tune. As in, really, the D way way too low, the G unidentifiable, the C low, and …read more

Ping, ping, ping.
There’s nothing quite like it—those rhythmic twirpings that say, “The food is microwaved.” Charlie having become quite proficient at making his own afterschool snacks thanks to this modern technological innovation (and the phenomenon of frozen food), it’s a sound heard often at out place around 3pm, every weekday.
Imagine the response to hearing 49 microwaves set to play Jingle Bells—-now that’s some holiday cheer.

‘Tis the holiday season and I have pretty much finished shopping for everyone on our list, from relatives to my sister to multiple cousins, office staff, the letter carrier, Charlie’s teacher and aides, Jim—-and I’m down to one last person.
Charlie.
What do you get for the boy who doesn’t seem to want anything?
Today’s Chicago Tribune captures this dilemma:
Parents struggle with whether to oblige the child who desires nothing more than church directories, word puzzles, spinning toys or even cleaning supplies—all real examples from youngsters’ wish lists.
Friends might see the child’s exotic interests as humorous or cute. But the youngster’s family recognizes …read more

I grow old … I grow old …
I shall wear the bottoms of my trousers rolled.
I write fairly frequently here about Charlie growing up. Of course, he’s not the only one around here getting older: It’s my birthday today, and I’m 40.
Fout-ohmygod, as one my mom-blog-friend puts it. Like the narrator in T.S. Eliot’s poem, I grow old, I do grow old, and I actually do roll the bottoms of my trousers (ok, pants), because I’m too lazy to get out a needle and thread and hem them.
My mother did teach me to hem, years ago, and it really is …read more