“What about potty training?” I asked the doctor.
What I was really asking was, “But what does it mean to have a child with Down syndrome?”
Lyra was less than 36 hours old when we met with the geneticist to determine if, as it appeared, Lyra had Down syndrome.
In the years since Lyra’s birth, I have learned many in the national Down syndrome community view geneticists as “often not our friends.” Nothing could have been further from the truth with the geneticist we met at Akron Children’s Hospital.
“Yes, she has the adorable facial features common in Down syndrome,” were the doctor’s first words after she’d placed Lyra on the exam table.
When my first child, Claude, was born, I read babies require somewhere between 5,000 and 7,000 diaper changes before they are fully potty trained. With the 18-year spread of my five children, I’m a seasoned diaper changer.
For months after Claude’s birth, a diaper-service truck would come to our house once a week, pick up a bag of dirty diapers from our porch and leave a bag of clean ones. All cloth.
Later I bought my own diapers, washed them myself and hung them outside to dry. One of the most satisfying things I’ve observed is the sun bleaching of cloth diapers. No matter how many detergent commercials refer to “sun clean” or “sun fresh,” it means little until you experience the real thing.
I continued this with my second and third sons, though with Jules I gave up on fancy Velcro diaper wraps (they inevitably leaked) and went old-school, pinning his cloth diapers and popping him into a pair of rubber pants (now made of plastic, but still called rubber pants).
I didn’t use cloth 100 percent of the time. Day care providers require disposable diapers, and disposables are easier when traveling. But beyond being better for the environment, I had read that wearing cloth diapers aids potty training.
Like the ads say, babies always feel dry in modern single-use diapers. Newborns void without any recognition of the event. But if they feel the wetness, babies begin to connect the acts of voiding with the physical sensations that occur just prior. Eventually, they know they have to go and make it to the potty.
Sounds so easy.
There are at least two methods of potty training. Some parents pick an age, commonly 2, and switch from diapers to underpants. My first day care provider, Edna Young, followed whatever type of potty training the parents of her charges chose, but she despised this first method.
“It’s just the adults who are trained to take the child to the bathroom,” she said. And also, “Parents who start too soon end up potty training much longer. Start when they are ready, and it happens very quickly, with little frustration for both the parents and the child.”
Edna taught me much.
My big boys potty-trained with few accidents by the time they were 3½. In preparation, potty seats appeared several months before needed.
When they were ready to try the potty seats, I had my boys pick out candy rewards. Gummy peach rings for number one and big chocolates for number two.
Each time we ran out, I replaced them with smaller candies until it was jelly beans and M&Ms. And then, I would only give them the reward when they asked for it. Eventually they’d stop asking.
This worked great with the first three children. Success was predictable, albeit with occasional accidents, and not an emotional ordeal that would scar the psyches of my boys. I believed I was a potty-training Supermom.
Then I had Leif. Whip-smart, I figured he’d be even easier to train than his brothers. Once again, I let a son pick out candy rewards not long after his third birthday. I stored them in glass jars on a shelf out of his reach in the bathroom — visual incentives.
Leif would ask for the candy, I’d remind him what he needed to do first and he’d give me the toddler equivalent of “meh.” Good hygiene need not accompany intelligence, or so I learned. Leif decided it was easier to let the rest of us change his diapers than be bothered toileting.
By his fourth birthday, we’d made little progress.
I complained to a much younger friend, who gave me this tip: Stop telling Leif he’ll get the candy rewards for using the potty. In fact, stop potty training altogether. Instead, whenever anyone else goes to the bathroom, make a big deal out of it.
Starting the next day, Max and my teen sons yelled out whenever they went to the bathroom and I showered candy upon them with excessive enthusiasm. In less than a week, Leif wanted in on the action.
Try, try again
That brings us to Lyra, my only baby who never wore cloth diapers. The first months of her life were spent visiting myriad health care professionals and preparing for eye surgeries at 6 and 7 weeks postpartum. We took every easy option available when so many important decisions were required of us.
When things settled down a few months later, we realized Lyra was regularly constipated. And while she’s not my first baby to suffer constipation, this was different.
People with Down syndrome, with few exceptions, have low muscle tone. Low muscle tone will delay when babies sit up, crawl, walk, run, hold a spoon or pencil. Low muscle tone in the mouth, and not poor cognitive functioning, is why many people with DS must work hard to speak crisply.
Human intestines, both small and large, have smooth muscles, and are also affected by low muscle tone.
Shortly before Lyra’s first birthday, we learned about Fruit-Eze. A jam-like blend of prunes, dates, raisins and prune juice, Fruit-Eze is a natural alternative to laxatives. Two tablespoons mixed into her breakfast each morning got Lyra going for about three years.
When she was 3, Lyra stayed dry every night for six months. But then she soaked her diaper every night for another six months. Too big for the Fruit-Eze to do its job without giving her more than she’d eat, Lyra was so constipated, her bowels were compressing her bladder.
A specialist told us to give Lyra Miralax, a product widely used by people with DS. At the same time, we learned it is not a true laxative, but works by pulling more fluid into the intestines. Determining the correct dosage took months.
Today, Lyra congratulates herself every time she uses the toilet. She also gives an enthusiastic, “Good job, Mama!” whenever she’s with me in the bathroom. (Do all young children follow their moms to the bathroom, or is it just mine?)
So, yes, potty training has taken longer with Lyra, but not for any of the reasons I might have imagined in the first days of her life.
Like so many things, people with Down syndrome just need more time to reach the same milestones as their typical peers.
The reward is well worth the wait.