This is our short story about our long road to night-time continence. For most parents, there’s an expected time frame, but this is often not the case when your child has special needs. Sometimes there are issues to be solved before beginning, but lack of expectation/understanding is a bigger part of the problem.
When Jess was a toddler, she developed urinary tract infections. I’ve never heard of this for a child so young? We learned that one of her kidneys had not developed normally. The urologist prescribed a low dose of Bactrim. If we could keep the kidneys from getting infected, then it was possible for her kidney to recover and grow properly. 18-months later, the ultrasound showed a healthy, fully functioning kidney!
Shortly after resolving this, Jess needed eye surgery and also had developed a seizure disorder. Even with all of this going on, she was sporting big girl panties during the day when she started school. Jess did require supports to help with balance and fastening clothes, but at least she was headed in the right direction.
Again we attempted to help her stay dry at night. She did well initially, but this was not to last. Within six-weeks of her teacher leaving for maternity leave, Jess regressed to the point where she couldn’t stay dry at night and she could no longer make it through the day either. Though we had been discussing this with school, it wasn’t until our parent teacher conference that I was told Jess was not using the bathroom at all. Those idiots! I said “don’t you think this was an important fact to share, her not using the bathroom?”. I was beyond livid. In the meeting I advised the staff to “tell Jess that if she does not use the toilet at school that they will be calling Mom. If that doesn’t get her to comply, then tell her that Mom will be coming to school”. Finally, I said “don’t ever, ever, ever think that she doesn’t understand” and stop letting her take advantage of you! The next day, they did as I asked. Jess used the bathroom at school from that point forward. Thank goodness I knew the importance of teaching consequences. I just wished people would stop treating her ‘special”.
Unfortunately, the damage had been done. Because Jess had been holding all day, she started having UTI’s again and became constipated. This becomes a vicious cycle. To avoid pain, she avoided the bathroom. Once the bowel gets impacted it loses its normal shape and can take at least six-weeks to return to normal. After this ordeal, Jess did manage to return to day time continence, but it wasn’t till she was turning 20 before she’d make it through the night.
The saga continues. When Jess was in her early teens, we did try an alarm system. The flaw to this device was if it got wet, the battery shorted and it would not work? I mean really? At this point, Jess had decided that pull-ups were “the way to go” because they were so convenient. If she became uncomfortable, she’d just take them off. If she had to pee, she could always move to the other side of the bed. What a fricking nightmare! Actually, I get it. I’m not alone in wishing I could get someone to pee for me so I wouldn’t have to get up, or make a pit stop when traveling.
Angelman kids are very strong willed and Jess is no exception. We battled for years. She had a “my way or the highway mentality”, not much different than the astronaut who drove over 950 miles wearing a pull-up. This was on the verge of madness.
Our life changing moment came when we found the Rodgers System. These panties can sense a drop of pee which sets off a highly annoying alarm. This pissed Jess off, pun intended. Just as the technology for Speak for Yourself gave Jess a voice, technology was the answer to this problem too. Initially we purchased two panties, but had to buy another pair to make it through the first stage.
This is one of those times where the adage “it gets harder before it gets better” applies. At the sound of the alarm, the drama began. With anger, she’d bolt out of bed, voicing her displeasure as she walked down the hall. The alarm had stopped her from emptying her bladder and she was to finish voiding when she sat on the toilet. Quietly, we helped her through this process. In the beginning, she set the alarm off several times within minutes of going back to bed (this is why we needed extra panties). The reason was, she didn’t know how to completely empty her bladder, nor did she know what that sensation felt like. The purpose of the alarm was to teach her body to wake up to the signals telling her she had to go. This first week was sheer hell. Eventually, she made it to 3am, then to 6am. By the second week, she was waking up dry! Within months, she had found independence.
I’m writing about this now is because of another family. They asked how we crossed this bridge. I told them our story, shared the pearls I learned, forewarned the difficulty factor and then gave them the football pep talk “you can do this!”. Everyone knows it’s hard on the child, but it is even harder on the parent. Yesterday, the Mom shared they are finding success! As happy as I am for her daughter, I had happy tears for the Mom when I read “we are all sleeping so much better and the morning routine is less stressful for all of us”. No matter the challenge, we are not alone.
I find it amusing when words have multiple meanings. For instance, we all know that continent refers to either 6-7 land masses (depending if you consider Europe and Asia as one). Then there is continent that refers to the ability to hold our bowels. Yes, by some, that could be considered a man-made land mass. Ironic? I think not!