This is the last week of classes at the college where I teach; after finals, spring semester does not start till mid-January. It’ll be good not to have to rush around so much and to work more around home, and, certainly, not to have to hurry home on the highway to meet Charlie’s schoolbus.

It does occur to me that, if I didn’t work, I could spare us a certain amount of anxiety: What to do when Charlie is sick? What to do if there’s an early morning meeting to attend or one in the later afternoon? What I do at work—-teaching Latin and ancient Greek and some administrative and advising duties—has little (obvious) relevance to what Charlie is learning and to what he needs.

Some years ago, I thought seriously about becoming an autism teacher, so I’d be able to devote myself full-time to what Charlie needed. As it’s turned out, I’ve stayed with the Latin and Greek. In an article in today’s Buffalo News about working mothers of special needs children, Julie Barrett O’Neill—the executive direcor of Buffalo Niagara Riverkeeper and the mother of three children, one of whom has Down Sydnrome—-says:

“I am really grateful for having children, because it puts all of my [Riverkeeper] work into perspective –what we’re really working to change, and who we’re really serving. Because the work we do takes so long, we’re really working for our children more than ourselves.”

It also keeps her from being a workaholic, she said. “Sometimes when you love your job it can consume your entire life. This helps me have a better balance.”

Laura Marshak, the author of Married With Special-Needs Children: A Couples’ Guide to Keeping Connected and a psychology professor in Pennsylvania, is quoted as saying that O”Neill’s “easy balance” is unusual. Certainly it hasn’t been easy to find a “balance” in taking care of Charlie and doing my job; Jim does a lot, from getting Charlie ready to meet the morning schoolbus to setting up his own schedule with Charlie’s and my needs in mind. My own hours a lot more flexible than in a 9 to 5 job (as are Jim’s) and, thanks to email and the internet in general, I can still get some work done while at home. (And blog, too, but that’s not “work.”)

And, over the years, my own efforts to teach the not-exactly-easy subjects of Latin and ancient Greek to my students—-most of whom are studying to be nurses, teachers, businessman, social workers, and who know they have to go to work straight after college—have taught me a lot about how to teach and help Charlie. As he’s 11 1/2 now, it’s occurred to me that my students (18-22 years old) are closer in age to him than they are to me and more than a few of them have had their share of various struggles, and school isn’t always the easiest for them, either. If I didn’t have Charlie, I’d probably end up volunteering for all kinds of committees and extra projects and while I’d like to, with Julie Barrett O’Neill, I’d say that life raising Charlie helps to keep work from becoming all-consuming.

Though I still am grateful not to have to keep looking at the clock on my cellphone to make sure I make it into the parking lot before the schoolbus does for a few weeks.

A pilot daycare program for special needs children is being launched at the Kalamazoo Autism Center, under Professor Richard Malott, a psychology professor at Western Michigan University, the August 15th MLive reports. It will offer daycare services from 6:30 a.m. to 6:30 p.m. Mondays through Fridays, as well as supplemental behavioral-based instruction will be offered to children from age 18 months to 12 years; tutors and tutor supervisors will be Malott’s WMU students. Standard full-day tuition for day care will be $189 per week for infants and $157 per week for older students, and half-day care is also available.

All I can say is: I think I’ve been needing such a center for the past, oh, 8 or (to tell the truth) 11 years. Charlie was in a daycare when he was 16 months old and this was actually helpful in determining that he “had something” when he was very young, as he was so clearly very different from the other children. Subsequent efforts to place Charlie in daycare and afternoon programs (the latter for special needs kids specifically) have not been successful, mostly because the staff could not provide the level of care that he needed. Hope Malott’s pilot program works out and the idea catches on—-it’s needed, at least by this working mother.

This summer has seen its share of discussion of the challenges of traveling with special needs children (on airplanes, in particular); more recently, there’s been discussion of traveling with autism assistance dogs, too. The August 12th International Herald Tribune describes the difficulties of caring for a special needs child when you, the parent, have to travel for work.

Some special needs children cannot understand that a parent is away. “When you have a child who doesn’t speak, I can’t explain anything,” said Candi Nichols Carter, a television producer in Chicago, and the creator of the children’s entertainment company It’s Hip Hop, Baby! “I had to go to Vegas for four days to work on a show,” she said. “I can’t explain that to him, that ‘Mommy’s going to be gone for four days.’ The next day, he wakes up and his mother is just gone. It’s got to be traumatizing.”

Nichols Carter’s 5-year-old child, Emerson, presents a multitude of challenges. In an e-mail message, Nichols Carter wrote: “Emerson is a child with a mental disability. We found out a year and a half into his life that he was born with a chromosome abnormality. As a result he had many physical problems early on and currently struggles with a severe speech delay.”

Jim or I traveling for work occurs pretty infrequently. We try to only go to conferences that are close enough to travel to and return from within one day. I make visual and picture schedules for Charlie, talk succinctly and straightforwardly about us leaving and returning, and make sure there are lots of activities to keep Charlie occupied. I also try (if we’re gone for a longer period of time, which is a very rare occurrence, as in it hasn’t happened for quite awhile) to have my parents come out from California. Charlie’s medical needs are nothing too unusual—he needs to take his medications at certain times and it’s essential that whoever is taking care of him know how to help him stay calm and allay his anxiety.

Fortunately both of us don’t have to travel much for work, just the regular rigors of the daily car-and-train-and-subway commute.

Daycare. And, afterschool care.

The very idea of these have long seemed a luxury to me. There’s basically five people on this planet who’ve provided these for Charlie: My parents, our speech therapist who we’ve known since she was in college, Jim, and me. As my parents live in California (they’re retired and can visit a couple of times a year, for extended periods), and the speech therapist has a full-time job, does Early Intervention, and much else, basically our daycare/afterschool care team has consisted of a total of two people: Jim and me.

This is not for lack of trying to have Charlie in such programs. In fact, it was because Charlie was in daycare (an on-site facility at the St. Paul university I was then teaching at) that his developmental delays were noted when he was a year and a couple months old, and that he was diagnosed with autism just as he was turning 2 years old. Seeing Charlie all day long among other children his age made it very clear: He’s different.

Jim had a sabbatical when Charlie was 2-3 years old and was the parent who was home for the much of the time that Charlie did his first year of intensive ABA. I took a leave from my job the next year (and ended up eventually resigning from the job). After we moved back to New Jersey, we tried Charlie attending a daycare center for a few months; it was a friendly, very lowkey kind of place, everything worn and a bit sticky. Charlie did ok for a few weeks but mostly ended up walking back and forth in a corner of the playground kicking at the dirt and we took him out, rearranged our schedules, got used to rushing home. A few years later, a neighbor met Charlie twice a week at the bus; this again went sort of well amid some really harried moments, one involving the hard surface of our porch.

The one local after-school program for special needs kids that I could find was in a sort of warehouse space, with a bare concrete floor, an aging tv set, and some tables and old couches. The staff were pleasant, but were usually talking to each other when I picked up Charlie, running back and forth in the huge space; all the other kids were sitting quietly at the tables. After a hair-raising phone call from the bus driver when Charlie refused to get off the bus to go into the center (two staff members were unable to get him off; our speech therapist friend was able to get to the center before me and took him home in her own car), we knew that was the end of Charlie at that center.

At this point, for Charlie to be in an after-school program with kids his age, we’d have to find a center that would take a child who needs (at the age of 11) constant 1:1 care, find and hire our own aide. Working out schedules (and driving home really fast) seems to be the better, or the pretty much workable, option. I know we’re hardly alone among parents in struggling to find decent, affordable daycare. Unlike other children, Charlie will always need someone to meet his bus and supervise him—this is one area that he can only so independent in.

An article in the July 5th New York Times about Google’s “fumble” in providing daycare to its employees—-for one thing, a plan to raise the price from around $33,000 to $57,000—reiterated how important, and emotional, an issue care for one’s children can be. Much of the concerns of the Google parents concerning daycare are far from anything I’ve had to worry about for Charlie (such as making sure the “hot kiddie philosophy of the moment,” Reggio Emilia, is used) but talk about waiting lists with hundreds of names in front of your child’s rings a too familiar bell. And the stress and strain of parents wanting to give their kids that good foundation is more than familiar to me,  a long-time veteran of Early Intervention in manifold shapes and therapies.

I’m more than glad I’ve been able to spend so much time with Charlie day in and day out; I’ve been able to teach him lots of things and I’ve learned a lot in the effort. He’s my trusty compantion, my good friend. But it seems something more than funny that something so essential (at least to this working mother)—-a safe and friendly place to leave a child so you can work (to pay for the daycare, for one thing)—is talked about as a “perk” and even a “luxury.”

So Jim drives me into work in a downpour and I go into classrooms with students saying “Dr. Chew, where were you?” (revealing that, despite frequent reminders, they did not check online for my message that class was canceled on Monday). Due to the lingering effects of laryngitis, instruction in the perfect passive system of Latin verbs and in the interrogative pronoun of ancient Greek is short; two students ask to watch a DVD of “Decisive Battles,” the revolt of Spartacus recreated with videogame effects, courtesy of the History Channel. I go to hear the tail end of two guest speakers on autism genetics (why, the one day that the speakers on this topic come to campus, do I have to be sick and on a back-to-back schedule?). Then I go to explain to a colleague why I won’t be able to make a 4 p.m. reception and am told that if I’m not there, we should just cancel the reception—-and there are alumni/ae invited and students have been looking forward to it. So it looks like I’ll be driving home to get Charlie and then driving back to Jersey City with him and hosting the reception, with a rather scratchy voice, and (I hope) a head that’s only somewhat woozy. (And no babysitter—but that’s par for the course today.)

If there’s one thing raising Charlie has taught me, it’s that you gotta be flexible, spontaneous, and ready to bend where the wind blows.

Amid all the interesting developments in the autism world today—the NYU Child Study Center’s ‘town meeting’, David Kirby’s latest interpretation of ‘evidence’ for a link between autism and vaccines or something in vaccines, a little politicking—I’ve been fielding emails from various colleagues from work, regarding the scheduling of student presentations. It has been made very clear that the schedule does not work for one colleague, due to other, very pressing work demands and shouldn’t I have realized this?

In responding, I’ve been a bit tempted to insert this sentence:

I have a son with autism and I am going to great lengths to get him a babysitter so that I can attend the presentations at that time of day, and at the risk of severely disrupting my son’s own schedule and overall well-being—-I have to go back home to meet his bus and then turn right around after briefing the babysitter to go to the presentations; my husband would take care of my son but he has to work (as you note that you do)……..

Stop, I say to myself: Stop the excuses. Sure, I have some complicated circumstances; sure my colleague does, too. Who doesn’t?

I know, deep in my heart, that it helps Charlie to have changes in his usual routine and that the babysitter is glad to spend time with him. I know that flexibility is an asset.

But ah, the excuses I could make!

And don’t need to.