Friday was a 7 to 7 kind of day. Charlie woke up at the completely reasonable time of 7am; did well at school (enjoying a trip to the library in the afternoon; doing good with the helmet fading program—he's been going without it for increasingly longer increments of time in the middle of the day); waited patiently while we ran some errands; went on a short walk; used the computer; did a little grocery shopping; asked to use the computer again and then told us "bedtime." And went to bed. And fell asleep by 7.30pm.
I think he's still catching up on his sleep after Thursday's very early wake-up and even Tuesday's not quite as early start to our day. As I reflect on things, it's often the case that it takes a couple of days for Charlie to recoup himself—it takes a couple of days for disruptions in the usual scheme of things to run their course in him. As it is, I've the sense that we're fortunate that Charlie does sleep for at least couple of hours every night. We have friends whose children only sleep for an hour or two at a time on a regular basis, or who wake up at 3 or 4am every single day.
Getting some sleep is a bit more of a concern for Jim and me now as we're both back to work teaching and that fuzzy-headed feeling isn't really what you want when trying to explain the passive voice in Latin to students who don't recognize the passive voice in English. Charlie must detect the little extra sense of rushing around, of us making sure that we have our books and materials and constant checking of the clock to make sure we won't be late for our classes.
There have been times throughout Charlie's life when I've wondered if all the stress of me working wasn't so great that it might be better if I didn't. I'm able to set up my teaching schedule to drop him off and pick him up at school or to meet the bus; I've still had many a hair-raising drive back from Jersey City when there was traffic or I couldn't extricate myself from my office fast enough. There's no one here to stay home with Charlie should he get sick so one of us has to cancel class (I was occasionally able to take Charlie to class with me when he was younger, but that became impossible years ago). Jim teaches in midtown Manhattan now but for some years he taught in the Bronx so he had a much, much longer commute.
But thoughts of not working are always passing ones with me. I like to work and the numerous responsibilities of my job, while at times causing some of the above-noted stress, have ultimately helped me in taking care of Charlie, precisely because my job—teaching Latin, ancient Greek, and classical culture at an urban Jesuit college in Jersey City—requires me to think about something other than autism, IEPs, treatments and therapies. Charlie being an only child, there's so much focus (as in, pretty much total focus) on him, and I more than think it good that he understands, Jim and I both have other things we do.
And, to be quite honest, I'd probably be seriously more strung-out without my job because of the additional financial stresses we'd have without my salary. Yesterday's New York Times had a piece on the "dealing with the financial burden of autism" that reminded me of why I feel so fortunate that, for almost every year since Charlie's diagnosis in 1999, I've been able to work at least part-time (Jim, of course, has been working the entire time, while often enduring some crazy commutes as we've tended to live where the school situation was best for Charlie, but not for a dad who rides the rails to work). We've spent quite a bit in the interests of our boy, from the early days of providing for his in-home 40 hours/week ABA program, to various therapies, to visits to medical professionals most of whom aren't covered by our insurance (I have, though, gotten better at filing claims over the years), to renting an apartment in a certain school district so Charlie could go to school there, to random extras (the plumbing bill, for one thing, from the days when all manner of colorful plastic items went missing on a regular basis).
I still prefer not to think of all this, and of autism, and of Charlie, as a "financial burden." As I wrote when a study was published estimating that it costs $32 million to take of an autistic individual over the span of his or her lifetime:
Every $ my husband Jim and I have spent, are spending, and will spend on Charlie is the best thing we could do with our money, down to the last penny, and not to “recover” Charlie from autism.
Because he’s Charlie. Because he’s worth it.
Frankly, we would have spent quite a bit on Charlie regardless, just as my parents did for my sister and me. One could (rather facetiously) argue that, things being as they are, Charlie saves us a bundle in not demanding the latest electronic gadgets (I'm still setting up the iPod Touch my parents got him for Christmas; he prefers the battered case of CDs); new Nikes or any sort of "in" clothing; tickets for this or that; who knows what kinds of lessons; and on and on.
And ok it's a cliché, but life with Charlie has definitely taught us that it doesn't take much to make you happy. In our case, Charlie not getting all upset when the CD player in the white car is not working. And: A good school day. A good day at home. A string of good days—but let's not gild the lily; one day at a time.