The only parenting stage I have ever hated is potty training. I have loved it once our kids are independent in the bathroom, but every. single. step. before that is painful. Sometimes I joke that the best part of adopting older kids is that we skipped that stage with three of our six children.
I’ve been afraid to say this out loud but I think we’re at that stage for Zoe.
She’s interested. She asks to go. She’s had success a few times. She feels like a big girl. She is 3.5 years old, so a lot of her friends are either trained or training.
But there’s one difference between her and her friends: She doesn’t have the physical skills to be independent in toileting. (Doesn’t yet? Won’t ever? We simply don’t know.)
Her kind of cerebral palsy is spastic triplegia. That means both legs and one arm are significant affected by tight muscles and limited mobility. She busts her tail in physical therapy four or five times a week, as well as occupational therapy twice a week, all toward the end of improving or maintaining her physical abilities.
But if you read through the “is your child ready to potty train?” lists, she doesn’t meet most of the suggested criteria, like walking or climbing or pulling up/down pants or sitting without assistance. The end goal of this stage for her won’t be independence, at least not any time soon. We might say goodbye to diapers, but my involvement isn’t going away.
I’ve been nervous about what that will be like. Even though I’m rarely at a loss for words, I tend to be quiet on any anxiety-ridden topic. I don’t have words yet for those. But then a few weeks ago, I was at a special needs ministry conference in DC, and God provided a precious meeting. My friends and I sat down at a table with just enough spots for us, joining a couple already sitting there. As we began chatting, they mentioned their preschool daughter with cerebral palsy. I shared about Zoe, and as the conversation continued, we began to realize how much our girls had in common. Similar skills, similar challenges, similar cognitive abilities in the typical or near typical range, and…?
Their daughter was newly potty trained.
Being able to talk to them about a real yet unique parenting situation was a blessing I didn’t know I needed. Since then, God has allowed me to cross paths with another mom in a similar place. The spectrum of kids with CP includes those who will never be potty trained to those who have enough physical mobility to be completely independent in the bathroom. Kids who are both able to use the toilet but not able to physically get there aren’t very common.
As we embark on this next developmental step for our girl, I’m feeling less alone, though. My anxiety was swept away by the solidarity of two moms who could fully relate.
Do I still feel a bit of dread? Sure. Remember, I hate potty training. But now I’m not feeling alone, and that’s a precious gift.
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Is there a group somewhere for families with this diagnosis? I don’t know anyone personally with a similarly diagnosed child either. I am part of one of the Not Alone fb groups but wish they had organized some groups based on specific diagnosis for this very reason. I do feel alone sometimes because I can’t discuss the nitty gritty how-to’s, been-there-done-that’s, etc. specific to our diagnosis (also triplegic cp).
Hi, Shannon! I was the mom you sat next to in D.C.! I’m glad this came across my Newsfeed today, because I was just thinking of you and our conversation. Now that I’m wanting my daughter to feel more comfortable using a real toilet instead of a potty training potty, I’ve been looking for something that would work, and we came across a Rifton HTS. I’m hoping our insurance will cover it, because it’s pricey, but it’s just what will make this whole transition better! Happy Potty Training. You can do it! It was great talking to you at the Summit.
This article so reminded me of the journey with our son. He has the same diagnosis as your daughter. He will be sixteen this year and finally was able to be totally independent in the restroom just last year. So never give up hope for independence in this area. Our son worked diligently to accomplish this. We are very proud of him. The challenge for me at times was always feeling like I was taking someone to the restroom, be it myself, our son, or our daughter when she potty trained. At some point our kids want that independence for themselves even more than we do.