Wrenches, Squeaky Wheels, and Autistic Families

This morning as I put Sweet M on the school bus at 7:15 it was actually starting to be light outside, even through the torrential rain. It is satisfying to see how the days are lengthening on each end, but particularly so in the morning, when we're usually still so bleary-eyed.

That's why it was especially bad news that M's bus driver Molly delivered: "The route has been changed, and starting Monday M's pickup time will be 6:30."

6:30? M's going to get on a bus at 6:30 in the morning to travel a distance of less than two and a half miles? She's going to sit on a bus for 90 minutes before she even starts her school day?

Cars were lining up behind the bus as I tried to get more information from Molly: Why the change? Who do I call? What's behind this? The waiting cars behind the flashing lights of the bus were patient enough, but if I'd blocked the street much longer they'd have been driven to honking, so I reluctantly released Molly and the bus to continue on their way—and I headed upstairs to call the OPT, the Office of Pupil Transportation.

The first operator I spoke with was no help at all, and insisted that there had been no change to the route or schedule. In fact, she kept trying to convince me that M has been being picked up at 6:30 since September, which might have been amusing if I wasn't so upset about this.

Right now we have finely tuned schedule. I get up at 6:30. Make M's breakfast and pack her lunch. Wake her up at 6:45, get her breakfast, teeth brushed, clothes on, and out the door, to be downstairs in time for the 7:10-7:20 pickup. I let her sleep to the absolute last minute because, like so many kids on or near the spectrum, she has a very difficult time getting to sleep at night. Always has. If she gets to sleep by 10:30–which is fairly typical for her—she's getting a little more than 8 hours of sleep on a good night, and that has been working for her.

Now, if she's supposed to be on the bus on at 6:30, I'll be getting her up at 6. Forty-five minutes earlier, 45 minutes less of deep, restorative REM sleep.

As most of you know, M has been doing pretty well at school this year. Her chronic meltdowns from last year have mostly stopped, and she's learning to read, to do double-column addition, and to play with her peers. Forty-five minutes less sleep could be a serious wrench in the works of this progress.

But operator #1 continued to insist that there had been no change—that M has been the first pickup on the route since September—until I said, "Okay, so let me just repeat what you're telling me because I'll probably have to call our education attorney to sort this out, and I want to make sure that I understand what you're saying."

"Oh," she said, "Oh yes, I see now that she used to be 6th on the route, and she was just changed to the first pickup. Well, there's nothing I can do about that."

"Okay," I said, "So at least we agree on the facts. Thanks, and have a great day."

I hung up, and called back and got a different operator, who was infinitely more helpful. She told me what was up: the school day has been lengthened by 37 minutes for kids in the general education population who need remediation, so they've completely changed all the bus schedules. She told me that I'd have to call the CSE, the Committee on Special Education, and she gave me the name of the person to call and a phone number.

The CSE doesn't open until 8:00, so I waited until then to call. At 8:20 I was still getting the recorded message saying that they open at 8. I have to admit that it seemed more than a little ironic that they expect little kids to get up at 6 a.m. to spend 90 minutes traveling 2.5 miles to school when they can't even get their own offices opened by eight.

The number I was calling was a general number, so I figured I'd better get this CSE official's direct line. This is the moment where we pause and say thank god for the internet. Ten seconds later I had his direct number. A woman answered the phone, and transferred me to someone's voicemail—but not to the voicemail of the CSE official I was calling. So I hung up, and called back, and miraculously got the head of the CSE for my district on the phone. He answered his own phone.

While I was sorely tempted to launch into my screed about how they don't answer their main phone line and have some kind of nerve to have kids riding buses for 90 minutes, this was definitely not the time for that. This was the time for honey-voice.

Honey-voice was born when I was sixteen years old and working at a movie theatre box office, answering the telephone and selling tickets. Long before the days of voicemail recorded schedules for movie times, teenagers like me answered the phone and told people what time the shows started and what the tickets cost. It sounds easy, but actually, it was fairly annoying as jobs go. The reality is that many people are cranky and irritable on the phone with people that they never expect to meet. In fact, they can be downright abusive. Enter honey-voice.

Honey-voice has a sickeningly sweet, deliciously seductive cadence: "Monica Twin Theatres, how can I help you?" I'd murmur into the phone, as if offering any pleasure imaginable rather than tickets to the usually G or PG-rated films.

It was remarkable. While my box office coworker continued to get nasty calls, my rude callers dropped to almost zero. I even had callers ring back, just to "double check the show times and say hi." And this was in the days before phone sex.

When people came to the box office to actually buy their tickets they had no idea that this honey-voiced theatre employee was me because when I was selling tickets I'd just use my regular voice.

Honey-voice, or a rather less suggestive, more maternal version of her, served me well this morning. I explained the problem with the change and how we had worked so hard this year to get M's behavioral issues under control so that she wouldn't have to be placed in a more restrictive, more costly setting, and that we didn't want to throw a wrench in the works by having her be exhausted every day at school.

The CSE official said he'd handle it right away—walk it over to the desk of the person in charge of my child's case immediately. And, amazingly, within 15 minutes I had a return phone call.

You would have to have had other experiences with the New York City Department of Education to know just how exceedingly unusual this is. I guess that in spite of my honey voice, they could tell that I am at heart a squeaky wheel, at least when it comes to getting Sweet M what she needs. Just like me, mindful this morning that the cars waiting behind the bus would eventually start honking, they decided to keep the wheels turning.

The woman who called back even opened the phone call with a joke: "I hear the Department of Education has offered to provide your child with a scenic tour of Manhattan every morning." She told me that I'd have to ask Sweet M's doctor to provide a note stating that for medical reasons she needs "limited time travel of no more than 60 minutes." Then I'd have to fax this to the a particular person at the DOE, and ask for an expedited hearing.

So it sounds as if even though I'll get the doctor's note today, that we'll be putting Sweet M on a bus at 6:30 am for at least a week or so, because an expedited decision could be a month or more from now. And I haven't even begun to figure out how we'll work out the afternoon piece of this: if she gets home at 4:30, how will she be able to make it to her 4:00 afterschool speech therapy two days a week? I am reminded of Kristina Chew, who had to move heaven and earth, and race the Pulaski Skyway, to cover 15 minutes in Charlie's afternoon.

And then there is the problem of changing buses: if we make a fuss about all of this—and get get limited time travel—she could find herself scheduled on a different route, with a different bus driver and different bus matron. We've had this team for two years, and they know M really well, so we'd really prefer to stick with the same people.

And, in all of this, I found myself wondering about something. Last week I went to a conference developed by Valerie Paradiz and the ASPIE School, and hosted by Marymount Manhattan College, on creating schools for aspie teens. One of the presenters talked about "autistic families"—not as families made up completely of autism spectrum individuals, but families where one person's autism shaped the entire family's behavior, rendering the family rigid, inflexible, and unwilling to change routines.

I wondered if I've become an autistic mom: Am I being rigid and inflexible, or is it outrageous to ask a kid to ride a bus for 90 minutes to travel a distance of 2.5 miles?















Bus matron Launa, Sweet M, and, concealed behind the wheel, reliable driver Molly.

Keywords: autism • Asperger's Syndrome • parenting • special education • education