Friday, February 03, 2006

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.


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10 comments:

Kristina Chew said...

I'd say, you're an autism mom, which is to say, you understand the delicate web of arrangements that keeps sweet M running---and you see all too well how one small (or largish) change can tear the whole thing into shreds.

Am much in favor of the honey voice---I call mine me in sweetie-pie mode, with a sparkling ingratiating smile soddered on for good effect.

Drove 4 times over the Skyway today.

Bonnie Ventura said...

This is a very interesting question you have posed, MothersVox, and I'll try to answer it from the perspective of my own autistic family, by which I do mean a family made up of autism spectrum individuals: four of us have been unofficially diagnosed by teachers and psychologists, and those who aren't quite autistic have compatible traits.

I definitely would not describe my family as rigid, inflexible, and unwilling to change routines. Quite the contrary: although we do indeed have our routines, and changing them can be stressful, we put a great deal of thought into how the individual needs and preferences of each family member can most effectively be met, and we "tweak" our routines fairly often. We always talk about changes before we make them, and we consider all the options.

My parents didn't hesitate to change my routine when they thought I needed to be in a different environment. They always stressed the importance of being "well-rounded" and self-reliant. I was never treated like a fragile flower. Indeed, my parents went very far to the opposite extreme, sending me away to college at age 16 and expecting me to figure out the details on my own.

I'm not that extreme with my kids, but I do try to make it clear that they have choices and responsibilities, that new experiences are necessary for learning, and that they have to find constructive ways to deal with change.

On the specific issue of school buses, my kids are now 13 and 15, and they have never ridden a bus in the morning. When my son was about to start kindergarten, I went around to all the district schools and met the teachers and administrators, and then I picked the school that seemed the best match for him. (I didn't know anything about autism then, but because my parents had made great efforts to find schools where I would fit in as a child, I just assumed that was what parents did.)

The school that I chose wasn't near enough to my house for a bus to be available. I thought my son would get a calmer start to his day with a quiet ride in the family car anyway, and driving didn't seem as miserable as waiting out in the dark, cold, rain, etc., for a school bus.

I drove my kids both ways for several years. After we moved to our new house four years ago, they started riding the bus home from school, but we still take them in the morning. My husband's office is very near our son's high school, so it's not far out of his way to take the kids to school.

I don't think we are being too rigid or letting our kids dictate our schedule. Taking them to school just happens to be what works best for us as a family.

Estee Klar-Wolfond said...

I am beginning to think of similar plans as Adam prepares for camp this summer...buses are definitely in his future.

Why or why do we torture ourselves so???

I can relate to your post.

Estee

Mom to Mr. Handsome said...

I think there is being rigid with your schedule and then there's being realistic. Riding a bus for 90 minutes to go 2.5 miles is unacceptable for any child. You handled the situation very well, I think the "honey" voice really helped. I try to use my "honey" voice with the insurance company-it never works for them -I really think that they have unfeeling robots that answer their calls.Oh well. lol
I hope everything works out.

Take care,
Kristin

Debby said...

I agree with Kristin, 90 minutes to go 2 1/2 miles?!!!!! That's just ridiculous for any child anywhere!!

MothersVox said...

UPDATE: M's bus driver adores M, and doesn't want to have this sort of wrench thrown in the works.

When I saw her in the afternoon she said that she was going to try to keep our pickup time at 7:10. She'd driven the new route and clocked it at 68 minutes, so somehow--I don't really understand how--she thinks she can still pickup M at 7:10 and have her to school at 8:00. It sounds like wishful thinking, but I am wishful too.

I realized why M is now the first pickup. I think that all the other parents on this bus route in this neighbor (that has gentrified into one of incredible wealth and privilege since we first moved in nearly two decades ago) have probably already gotten their kids a doctor's note mandating limited time travel.

This is a neighborhood where no one calls the CSE on their own . . . everyone has their attorney call. In other words, there are a lot of squeaky wheels in this neighborhood, and ones that are much squeakier than I am: I'm still waiting for M's doctor to call back about the note!

Reading Bonnie's post I was nostalgic for living in a suburban place, where we might have a car and the option of driving M to school. We don't have a car. They just don't make sense in the city. If we took M to school in a cab, the fare would be $9 each way, morning and afternoon, for a total of $36 a day. And it would take about 1.5 hours per day for us.

If we took her on the subway, it would cost less: $12 per day. But it would take 45 minutes each way from where we are (because there is an awkward crosstown geography), for a total of 3 hours additional commuting.

This is the sort of calculus that working parents-of NT kids and autie kids alike- are all too accustomed to doing.

Thanks to everyone for your good sense and reality checks on this!

Ettina said...

I came across the concept of "autistic families" (the ones with only one autie) awhile ago and remember getting angry about it. They made it sound like it's pathological to accomodate your child's needs. I agree with kristina chew about this.
As for honey-voice, reminds me of the Smile in the article http://www.mouthmag.com/issues/58/contam_smile.htm
I like how she used it for good in the end.
Unfortunately, I have no clue how to do that sort of thing. My tendency is to just go with very logical.

Anonymous said...

I live in Ny. I believe by law, they can not keep a child on the bus for over 60 minutes with special needs.

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