For Our Records; The Bus Come-nee; The Double Life; Home Stretch; Love the Breaks
For Our Records
Sometimes Alex's lunch bag, a cute bat, becomes a mail pouch for him to carry home messages from school. The head flips up and you can easily slide en envelope down the bat's neck. It's a pretty good system. We've never lost a document.
Speaking of which:
"Your child's physical has expired," the latest note read. "Please have your child's doctor complete the attached medical packet...WITHOUT A CURRENT AND COMPLETE MEDICAL PACKET YOUR CHILD WILL BE EXCLUDED FROM SCHOOL."
That kind of boldface gets Jill's attention. "Can you call the nurse?" she says.
The school nurse is a new replacement. The old school nurse left on maternity leave ("...she leaves to be a full time Mommy!" reads another note). The Mommy-to-be nurse claimed she used to give Alex nebs with him on her knee, singing endless choruses of "Wheels on the Bus." She was also oddly steely about Alex seeing an optometrist, but I learned a long time ago that nurses have their own wisdom concerning medical care.
First I heard of her replacement was at the end of December, when a note arrived in the cute bat that Alex's prescription for neb treatments had expired. "I didn't think these things expired for a year," I said to Jill. So my first day back at the office in the new year, I ran the form to Alex's pediatrician. A few days later, I got the completed form back and inserted it into the bat's neck.
A few days later, however, came the boldface note. "Please return the completed packet no later than 2/3/03," that last written in pen in the blank provided.
I called the new nurse. She told me there was a pile of papers left from her predecessor that she hadn't gone through yet, so Alex's physical -- which he had to get last summer in order to return to school in the fall -- might be in there. It crossed my mind that maybe checking that pile would have been considerate before burdening the bat with a note and special-needs parents with the possibility of yet another doctor's appointment. But I just asked, "How long are those physicals usually good for?"
A year, she said.
Well, I explained, Alex had one last summer. He had to have had one, I explained, otherwise he wouldn't have been let back into school.
"Well it isn't here," she replied, in tones I remember well from 1998 and 1999, tones that come down to, Do something about this, parent.
I know the sluice run that is the last few days before a paternity leave. I know that the departing nurse, her mind overflowing with thoughts of becoming a full time Mommy!, failed to cross this T and mention the extra-special nook where she had tucked Alex Stimpson's paperwork last September. She probably also figured that no replacement in their right mind would make an issue of this: Since Alex had obviously been let back into school in the fall, he must have had a physical. Paperwork is only missing if you look for it.
The replacement looked without success in her inherited pile, she informed me in a terse message this afternoon. I returned her call, and got her voicemail. "I will contact Alex's pediatrician and have them fill out the form," I said. "If you can keep looking for it, however, I'd appreciate it, and if it's been lost, I'd like to know."
She's not going to keep looking for it. Even if she finds the paperwork now, she'll probably throw it away. Then I wonder how many choruses of "Wheels on the Bus" she'll sing to Alex with a neb. I wonder if she'll sing any. That's another leftover of 1998: I wonder about people I may have pissed off and then have to leave alone with my son. And I always will.
Tonight, on the way home, I'll detour to the doctor's office -- they seemed familiar with schools losing forms -- and a few days from now I'll flip up the bat's head and slide the form inside, along with a note to the nurse. That note will read, "We are retaining a copy of this form for our records." (January 2003)
The Bus Come-nee
Alex's school bus had been doing pretty well in the mornings. Every morning, Alex and I would wait in the lobby until it pulled in front of our building by 8:05, the warning yellows flashing; I would gather up Alex and trot to the curb as the driver put on his red flashers and the traffic down Fifth Avenue slowed to about 35 miles per hour.
I'd hand Alex over and say good morning. The matron would say good morning, and sometimes hi to Alex. The driver wouldn't say anything. It'd been weeks since we'd had to call the bus company for a problem in Alex's pick-up, weeks since I'd heard them say "bus come-nee" when they answered the phone.
Matrons and drivers aren't paid much and don't last long, generally, on these privately-run school buses in New York City. Nonetheless, for Christmas, we gave the matron a Barnes and Nobel gift certificate. I think we gave the driver cookies.
Everything was fine until last Friday. As the opening credits rolled for "Arthur" on PBS, I trotted to the elevator with Alex, and then down to the lobby. By 8:20, however, still no bus.
I gathered up Alex and went back upstairs and asked Jill if the bus company had called. They have been good about calling since about Halloween. No, Jill replied. So I called the bus company. The lady who answered ("Bus come-nee ... ") said they were running a little late and that I should give it a few more minutes.
How many more minutes? I asked. Hang on. Hang on. Back she comes. "Your bus was there at 8:03," she said. "He waited three minutes, and he left.".
It's no big deal for me to run Alex to school on a city bus. It takes a little longer and I'm usually 45 minutes or so late for work, which is fine. Still, I don't think the bus come-nee realizes my post-NICU prickliness at always being the parent at fault.
"What do you mean he left!?" I found myself shouting. "Ma'am, we were down there! Let me speak to your supervisor." Jill gave me a thumb's-up. "I'm Jeff Stimpson and my son is Alex!" I fired. "I want to know why your driver told a lie!?" Probably a little strong. He was pretty nice about it. Hell with'em. I grabbed Alex and headed for a city bus to take him to school, and asked Jill to phone my boss and tell him I'd be late.
Just remember, I kept saying to myself on the ride to Alex's school, PBS isn't likely to run the opening credits for "Arthur" at 8:10 a.m.
At the school lobby, our bus matron came out of the elevator as we went in. She waved a cup of coffee. "We were there," she said. "We were there." Upstairs, Alex's teacher, no less, also told me the bus was there. "They have 16 kids to pick up," she said. "They said they waited three minutes and left." That afternoon, Jill calls to report the matron was frigid to her when she got Alex off the bus.
This morning, I took Alex to the bus. Up it pulled at 8:03. On went the yellows and the reds. I handed Alex over and said good morning. The matron grunted.
She may get friendly again. Jill thinks that gift certificate -- which I think might be profitably spent on How to Win Friends and Influence People -- was given, in part, as thanks in delivering Alex safely day after day, and in part to buy us an extra minute some morning in January or February. "And what about all the times we've waited for the bus over the past year and a half?" Jill says.
This city brims with people looking for a pissing contest, and parents, when they get into such contests, are always considered at fault by their pissing opponents. Well, once upon a time I would've tried harder to remember that the matron and driver aren't paid much, and that maybe people shouldn't spray the word "lie" when somebody's watch is a few minutes off. (In fact, when New York was recently threatened with a strike of school bus drivers and matrons, we learned that our bus company is non-union, and hence probably lower-paying.)
Now, however, I hope the bus company realizes that I had months of handing my son over the care of often-surly strangers, months still as fresh to me as last Friday morning. I hope they buy themselves a new watch. I hope Alex gets into a neighborhood school next fall, eliminating need of one more come-nee in our lives. I hope they enjoyed the Christmas presents. (February 2003)
The Double Life
Last night was parent/teacher night at Alex's school. This collection of everyone who knows Alex best sat in tiny chairs and tried to enter Alex's world by discussing what we all knew about him, and how to take best advantage of what we've seen.
This arrangement, besides being tough on the knees, presupposes that the child isn't living a double life. For example: "You don't feed him breakfast before he comes here, do you?" the teachers asked us.
"What!?" said Jill. "He eats a bowl of cereal, no milk but still a bowl of Cheerios, and sometimes a granola bar too during 'Sesame Street!'
"He's starving when he gets here," the teacher said. "Starving." Later in the day, they added, when the teachers get soup for their lunch, while all the other kids nap, Alex bums crackers.
Listen, your honor, every day I stuff Alex's backpack with what I think he'll eat. I'd send chicken nuggets and fish sticks, but I did that for months and they always came back untouched. Now most days I send yogurt. ("He finger-paints with the yogurt," one teacher reported.) We also learned that at school he eats Rice Krispies, which he never touches at home.
I knew they were thinking that Alex's bus comes at 8 o'clock, and the Stimpsons must get up at quarter of. Nah, teacha, we don't buy Rice Krispies. Cheerios is cheapa! Can I use yer terlet?
At one point, I gestured toward a construction-paper birthday cake on the back wall and, like a shrewd lawyer who already knows the answer, intoned, "Does Alex have any particular fascination with that birthday cake?" He loves pictures of birthday cakes at home.
"No," said the teacher.
Some of Alex's physical stuff we knew about, such as accepting any and all help you'll give him to avoid coming down stairs by himself, which he can do, and running into walls, which the teacher thinks he does for stimulation. When the teachers reported that he names all zoo and farm animals by sight, I had a fleeting thought we were all on the same page: I read a lot of farm and zoo stories to Alex and Ned before bedtime.
At home he bites. At school he pinches. At home he wigs out at groups of people singing, such as during birthday celebrations. At school, he wigs out at the sight of a plastic toy guitar. Alex has never owned a guitar. Mom played a little ukulele for him way back in the hospital, but she wasn't that bad. At home, he plays constantly with plastic letters, matching them up in the pages of an ABC book. He never touches letters at school, teacher reports.
"Do you think Alex will soon be ready for an interlocking puzzle?" Jill asked as we headed out.
"Oh, he does interlocking puzzles!" the teacher replied. "Whips right through'em!"
Alex, is learning new words! And not saying them at home! Not long ago, one teacher asked Alex, "When do we eat cake?" and Alex replied, "For birthday." "Everything is 'hard,'" the teacher reported. "We ask him to do something, he says 'It's hard, it's hard!' Also, 'stop.' If he doesn't want to do something, he keeps saying, 'stop.'" Befuddled parents' response: I've been telling him to "stop" at intersections, and wait for traffic. Regarding "hard," "He must have heard me talking about my new job," Jill surmised.
Speaking of new jobs, the subject of Alex's short-circuited attention span soon came up. Next year, Alex enters kindergarten. "Next year, school is going to be a lot more focused and structured than it is here," the teacher said.
We don't doubt it. A few years back, a developmental pediatrician predicted that Alex's attention span would be the number-one obstacle to his education. Nobody needs a long attention span to follow this discussion to the subject of drugs.
"We'd rather begin it while he's here," the teacher pointed out, "with people who know him and who know what he's like normally." I know that normally Alex pinballs, his powers of concentration limited to occasional fixation on toys of the moment. "Once, to focus his attention, I had to hide the plastic farm," one teacher reported. "That worked for a few minutes. There are herbal treatments they can give him, too, you know. And I have a friend who's a sophomore in college, and she still needs her Ritalin to study."
Parent-teacher night ended for us as I always thought one would, with words like "neurologist" and "prescription." I've always been against drugs for Alex. I got out the little chair with few objections, though, as I ran my eyes over the paper cake on the wall. (April 2003)
An office superstore used to run a TV commercial where a dad was skipping his shopping cart gleefully through the aisles, snapping up school supplies while his kids glowered. The backdrop music was the Christmas standard "It's The Most Wonderful Time Of The Year:"
With the kids jingle-belling
And everyone telling you, "Be of good cheer!"
It's The Most Wonderful Time Of The Year!
I had no idea that writers of TV commercials had spent an August break with Alex, who in 72 hours -- finally -- will finish his first day as a kindergartner in the New York City Public School System. This year's break stretched to four weeks, to allow the schools to adjust to a recent overhaul in their bureaucracy. From what I've heard, the overhaul was a good idea.
Three extra days off for Alex, however, wasn't. Alex unravels during school breaks (and he isn't the only one). He grows more confused day by day by what I, before he started school two years ago, termed "the aimlessness of home."
We try to read with him, paint with him, color with him. But his quick attention span yanks him from activity to activity, pinballing from video to video -- "Watcha Elmo!" "Watcha train!" "Watcha Bar-ney!" If Ned happens to pick Underdog, "Bear in the Big Blue House," or some similar piece of tripe, Alex gives the glass door of our entertainment unit a hard swing. And, unluckily, our living room TV unit has drawers with handles like rungs, a good substitute for playground ladders when, on the afternoons toward the end of your endless vacation, it rains.
Which it does. Rain.
Last August, we had a schedule of stuff all laid out. Then our babysitter sprang a break of her own on us, and I got nailed for jury duty. I'll never forget the curl of the judge's mouth when I explained that I should be excused from duty because I had a special needs kid on summer break at home. The judge's reaction, combined with Jill's angst on the phone between deliberations, motivated me to reach an especially quick GUILTY!
This should be the last August that gnaws at us; next year we'll find Alex a day camp. But now, we chip at his tedium by going to the beach and zoo with grandpa and grandma, feeding him videos, and popping playgrounds like a failing med student pops amphetamines. Alex's own tricks for surviving home aimlessness over the past two Augusts have included:
- running around with bowls of dry cereal;
- running around with bowls of pretzels;
- biting Ned (who's devilling him, admittedly); and
- pulling the toy bins off the shelves in his bedroom until our downstairs neighbors want to shoot themselves, or us, at least until September. By which I mean "the school year."
Which it almost is, now. Seventy-one and a half hours to go.
On one of the first days of sacred Sept., in fact, toward the end of his vacation, we visit his new school. While I fill out paperwork, Jill takes him to romp in what will be his new classroom. In a few minutes she returns and nods once, firmly. "It's going to be all right," she says. Alex was at home. ("Hasn't he learned yet that he's supposed to hate school?" my boss asks.) Puzzles, story time, a real gym in which he and Ned play a pre-school round of "Open Field Tackle." Hardly algebra: What's to hate?
When we get home later that morning, Alex cries. Jill reads his mind: "'Why do I have to come back to this boring old place?' Now we're in the home stretch, at least."
This is when I have to watch it. When the crashes get a little louder, the screeches more piercing, when my teeth grind out the hours. Seventy and three-quarters hours to go.
There'll be much mistletoeing
And hearts will be glowing
When love ones are ...
Back in school. (September 2003)
Love the Breaks
"Hate the breaks," one special-needs mom said to us right after Christmas. I used to, too. Wandering through days with Alex, numbing him with Elmo or running ourselves breathless by manhandling the double stroller (can't leave Ned home) all over upper Central Park, pausing in the playgrounds if the weather was nice. Wanting to shoot ourselves on the couch if the weather was rainy or cold. "What These Parents Did On Spring Vacation," next time on "Frontline".
Through both his years of pre-school, Alex unraveled during school breaks, lost in the aimlessness of home. Jill and I were dense in realizing how no school affects an autistic child, and only when we couldn't scream anymore did we make sure that on the next vacation, boy, we were going to fill his days with painting and reading and trips to the museum and aquarium, playgrounds and zoos and anyplace that could help move the clock from dawn toward bedtime.
Not anymore. I ducked into a special-needs summer camp fair a few months ago, and the first booth I hit revealed to me that Alex, now 5, has aged into a variety of ways to get him out of the house. "We operate during school breaks, and during the last two weeks of August," the woman at the booth told me, "typically when summer school has ended and just before the new school year begins. It's like school, only more fun." I wanted to buy her dinner. Alex is finally getting old enough to move into systems that were built for people like him. And his family. We ignited the forms with the speed of our signatures.
February break breezed by: The respite bus even arrived at quarter to nine, allowing us to sleep in. April break breezed along similarly until Friday, which was Good Friday, and which was the morning my phone rang at 9:30. It was Jill. I asked if Alex got off all right. "His bus hasn't come," she said. "Getting kind of nervous here."
I called the agency. After listening to a few minutes of shuffled and fumbled papers on the other end of the line, I was told that in fact respite camp was closed on Good Friday. Plus which, Alex had the following Monday and Tuesday off before school started on Wednesday.
Five days home, out of nowhere. He goes wild. He dashes every few minutes into our bedroom to root in the drawers. He bolts into the kitchen, where we soon hear him scraping the footstool ladder across the tiles and digging in the pantry for pretzels. He laughs loud and without stop, seemingly with the joy of just not having so many rules. He gets on his back and pitches side to side, then sprawls on the couch and kicks the wall, which we share with neighbors. Toward the end of the break, he stops kicking if I threaten to put him in his room. Hate the breaks.
Tuesday night bedtime is the worst. It rains all day, which means he's stuck inside with videos, leftover homework, Ned, and a babysitter who deserves a bunch of orange tulips at the end of the day, which she gets. After dinner and toothbrushing, I try both the boys together in their room for reading and bedtime. Alex shrieks, climbs on Ned's bed, and kicks the wall, laughing. I yell at him, which only elicits a chiding from Ned. Jill takes over while I banish myself to our bedroom to cool down.
Jill takes Ned into the living room to watch "Queer Eye for the Straight Guy," and I take Alex into his bedroom. I exhaust Tom and Pippo, Mud Is Cake, and all the rest. Alex is semi-supine, so I try to sneak out. A few minutes later, he rattles the doorknob and bolts out. I escort him back; out he comes; I escort him back; out he comes. It's pushing 10 o'clock when Model Dad barks "GO TO BED!" hard enough to make the windows rattle.
Not a word from him. There never is in moments like this: It's like those wee-hour scampers for which we've tried to teach him to say, "Can't sleep." Finally I crack a Beck's and settle directly outside his door in a chair and wait for him to peer out again. He does. Go to bed! I pull the door to and hold the knob; I feel him twist at it from the other side, and start to screech. I let go. He opens the door. 10:05. Go to bed!
Five minutes later, and the knit of his little brow when he opens the door again tells me that he wants me to come sit with him until he falls asleep. "Alex, say, 'Come with me.'" Say, Can't sleep. Say, Excited about going back to school. He leads me to the bed. I sit beside it; I finish my beer. Pretty soon, he's asleep. I need a vacation. (May 2004)
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