Amy Julia Becker, mom to William (left) and Penny (right) is a writer and recent graduate of Princeton Theological Seminary in New Jersey. At Thin Places she blogs about "theology, disability, children and parenting, education, and the intersection of grief and hope." Here she writes about a developmental stage that stresses many parents, but which can be especially sensitive for parents of children with disabilities: potty training. Thanks for sharing Amy Julia!
Potty training: It's not a race
By Amy Julia Becker
I was all set to write a victorious essay about how we had crossed the final potty-training hurdle. Seven days without an accident, even at night. No more Pull-ups, no more rubber underpants, no more carseat cushions in the washing machine, no more worries about our daughter sitting on the couch without a towel underneath her. Two years after we first started working on it, I thought we were done.
And then, Penny visited my grandmother and when she got up, there was a wet spot on the chair. And then, when we were outside this afternoon she looked at me, eyes wide: “Tinkle accident Mom!”
So we aren’t quite there after all. We’ve made some good progress, and I’m celebrating just the same.
Sometimes I’m asked, “What’s the hardest thing about having a child with Down syndrome?” And I reply, at least half serious, “Potty training.” Sure, the trips to the hospital for her heart procedure and hearing tests and the Emergency Room visits were more immediately stressful. And the question of social stigma when it comes to having a disability looms large as Penny gets older. IEP’s, routine checkups with a host of specialists, routine questions or comments that betray ignorance about who Penny is—all of those are tough. But when it comes to a daily struggle, potty training has been the hardest of all.
I was ambitious when we started. Penny was 2½, and I was convinced that with enough willpower on my part, she could learn to use the potty. I had heard plenty of moms with typically developing children say, “I just chose a week in the summer and put them in underpants, and by the end of the week we were done.” I knew it might take a little longer, but I figured Penny really wasn’t that different from all the other kids.
Then came the moment. Penny was sitting on the wooden stairs in my parent’s house, and she stood up with a puddle underneath her. I almost burst into tears. And I heard the disappointment in my voice as I said, “Oh, Penny!” It was then that I knew that this goal was for me, not for her. We put the underwear away for nearly a year.
The funny thing was, even in her Pull-up, Penny would wander into our room in the middle of the night and say, “I need to go potty.” And she would. Nearly every night. Last June, we were on a long car trip, and she said, “I need to go potty.” She held it for twenty minutes as we looked for a place to exit the highway. These moments helped me to realize that in this area, she really is different from other kids. If she’s on a playground, with her body and brain focused upon climbing a ladder or hanging from a bar, she doesn’t “hear” the signals that she needs to go. If she’s sitting still or sound asleep—if the rest of her body is quiet—then she does. And then there’s her low muscle tone, which makes it harder to hold it in even if she knows she needs to. Not to mention the impulsivity that makes her prefer to keep playing, even with wet underwear. I started to understand Penny’s hurdles, and I started to respect her more with every try.
So we bought training pants—super absorbent white underwear with strong elastic to prevent further leaking. And we did a lot, a lot, of laundry. We stopped paying attention if she had an accident, and started praising her effusively when she succeeded in going on the potty. For a time, we used M&M’s as a reward. Eventually, we got into a rhythm. Every two to two-and-a-half hours, we take a trip to the potty. She’s become more and more compliant the more successful she’s been. And once it was clear that a day without accidents was a distinct possibility—once it was clear that she could succeed—we introduced “star” days. After her first star day, we all got ice cream. Then, two in a row, and more chocolate yumminess dripped down her white shirt. Then, three in a row. Four. We don’t even talk about star days anymore. But we are working on helping Penny tell us before she needs to go, and we may use stars again once she starts to be able to do so.
Potty training has taken a long time. A really long time. It has set us apart from other families. And it has forced me to listen to Penny. In her own way, she asked me to slow down, to get to know her. She asked me to continue to learn how to love her—not for who I thought I wanted her to be, but, acknowledging her needs and her abilities, for who she is. Potty training has been one of the hardest aspects to our life with a child with Down syndrome. It’s also been one of the best.