Since we were staying in a motel on our little mini-vacation in Hershey, PA, we found ourselves eating dinner out a couple of nights, which is something that we rarely attempt in the city. This proved to be the most challenging part of the trip because Sweet M's olfactory sensitivities make so many food odors disgusting for her.
The first night, in an Italian restaurant with overpriced and barely edible food, Sweet M was squirming, grimacing, getting up out of her seat, and demanding, "Ewww, get it away, get it away" when our pastas with a slightly garlicky tomato sauce arrived. The second night, at a different restaurant, M jumped up when my tomato soup arrived and seated herself at an adjacent table — upwind, I suppose, from the offending odor.
Sweet M's father was deeply annoyed by M's restaurant (mis)behavior. It's easier for me to empathize with her olfactory sensitivities as I have the advantage of having had overpowering morning sickness when I was pregnant with her. That is, I have a relatively recent and visceral memory of how affecting olfactory disgust can be. But for M's father this was becoming a quality of life issue. "We have to be able to eat in a restaurant," he said. "She's got to grow up and learn some manners." And, admittedly, the behavior was awfully annoying.
This got me thinking about some of the times in Sweet M's life that I'd decided that something just ought to be a particular way. There are only a couple of examples of this, as I'm not much for imposing my will in the face of overpowering resistance on M's part. Most of the few times that I've taken such a stand, I've lived to regret it.
Take the case of bedwetting. Sweet M has enuresis, the medical word for bedwetting. Sometime in her kindergarten year — with an eye toward the sleepovers that might be on the horizon in elementary school — I decided that the bedwetting had to come to an end. Her longtime babysitter, a woman who's raised five children and an even larger number of grandchildren, agreed that it was time. M's pediatrician thought it was time as well.
And so we had Sweet M start sleeping without "diapies," as she affectionately called them.
About five nights a week she could get through the night without wetting the bed. But the other two nights the bed was soaked, which interrupted her sleep.
Less important, but not insignificant, was the fact that I was saddled with pounds of extra laundry. If we lived in a suburban house with a washer and dryer, it might not have been so bad. But since laundry for us means schlepping out to the laundromat and paying $2.00 a load for washing and up to $4.00 for the dryer (depending on the drying time), this was a costly and time-consuming undertaking.
Also, because M was still greatly in need of sensory stimulation, we'd let her jump on the bed, which would put small tears in the mattress cover, which would then leak and spoil the mattress. It was a mess, all around. I was spraying the mattress with those odor-killing sprays and schlepping to the laundromat, and basically devoting about 6-10 hours a week to this project of nighttime toilet training.
We persisted on this course for nearly a year. We never scolded her about wetting the bed since we didn't want to make a huge deal out of it, but it was tiresome. She wanted the bed to be dry every bit as much as I did, but we just weren't getting there. Every once in a while we'd go a week without a bedwetting incident, but that was the exception, not the rule.
M's psychiatrist suggested a medication for enuresis, but I didn't want her on an additional medication for something as unimportant as bedwetting.
M herself was patient with our experiment in nighttime toilet training, but one day, after she'd wet the bed four nights in a row, I said, "Oh M, what do you think we should do?"
She paused for a moment, put her finger to her head, and said, "I know. Let's get diapies!"
I mumbled something about let's see if you can get through the night since you're getting to be a big girl, no?
Okay, she'd said, resigning herself.
I became a little obsessed with bedwetting, discussing it with many friends. I learned, to my surprise, that two of the most accomplished women I know — one a professor at a major university, the other a prominent psychologist is the city — both wet their beds until puberty. Sometimes the brain — even the most able of brains — just isn't ready to sleep through the night dry.
Nighttime continence requires both a hormonal function and some kind of bladder control during sleep. Apparently in some children a natural anti-diuretic hormone released at sunset condenses the urine at night, making bladder control easier. In other children, this hormone is absent, making dry nights more challenging, if not impossible. Like so many things, this is not a simple matter of willpower.
About a year ago we changed pediatricians. M's first pediatrician had children herself and moved out of the city (which turned out to be a blessing for all of us.)
When we met with our new pediatrician, I brought up the bedwetting problem and she said that there are things you can do . . . there is an alarm system that wakes them up when the bed gets wet, so it trains them, but it's possible that her brain just isn't developed enough yet to manage nighttime continence. Why don't you just get pull-ups for her?
"I thought we should stay the course, and move forward, not backward."
"Look," M's doctor said, "Think of how much easier your life will be. Eventually she'll be dry through the night."
This was one time that I was completely in tune with medical authority. We got the nighttime diapers. While they're by no means inexpensive, the cost is far less than what I was spending on laundry, not to mention in time. Some countries even have programs to subsidize the cost of diapers for kids with developmental differences. Very civilized. (See Sometimes Holland Feels Like Hell, January 7, 2006 if you live in Canada and need incontinence supplies.) But back to our story in New York City, the capital of rugged individualism and self-mastery . . .
The week after we went back to nighttime diapers, I was at school event and M's teacher came up to me and asked, "What have you been doing with M—she's so happy and relaxed and focused this week?"
"Diapies," I said.
"Diapies?" he asked.
"Yes," I said. "We've gone back to having a nighttime diaper and M seems to be sleeping better now."
"Wow," he said. "Well, it's really working."
Why did we struggle for nearly a year, with M never getting a good night's sleep, and me ever schlepping wet bedding to the laundromat, spraying the mattress with Febreze?
I had gotten it into my head that M ought to be able to keep the bed dry. I'd been dreaming about the sleepovers that the little girl of my fantasies would be having with her little friends. She can't be wearing diapers to a sleepover, I'd think. And the people I trusted — her doctor, her babysitter, her father — all agreed that she ought to be able to do this. But the fact was that she couldn't. She just couldn't.
In one of the self-help books that I've read for my other research there is an expression about the word "should." Readers are encouraged to focus on what they want to do, rather than on what they think they should do. One writer tells his readers to stop "shoulding" all over themselves, referencing the very sorts of toileting and self-control issues that we were struggling with.
In the case of this bedwetting problem our "shoulds" and our "oughts" got in our way of seeing what wasn't working for Sweet M. We weren't struggling because of her autism — or whatever it is that goes on for her — we were suffering from "oughtism": the inflexible belief that something oughta be a particular way, all evidence to the contrary notwithstanding.
I hope we will all be delivered from oughtism. And arrive in a place where there are sweet dreams for all of us.
Keywords: autism • Asperger's Syndrome • ADHD • bed wetting • enuresis