Down Syndrome and Constipation
The two go hand in hand if only because of the low muscle tone which so many people with DS deal with. My not so educated but practical guess is that the low muscle tone in the trunk region makes it difficult for them to literally push the feces out. When it doesn’t come out it’s going to get backed up.
What happens when your kid gets impacted?
Hannah had been taking Miralax for 10 years and in the last year or two it didn’t seem like it had been working as well or we had a hard time getting the right dosage. We took a break from it thinking we would be okay with upping her natural fiber and such. Big Mistake. By mid-Sept she started to slow down in her eating and drinking habits, and by October we had her in the hospital, not once but twice.
The first time they said it was a UTI. The second time (yes, you read that right) they realized she was badly impacted. It was not just humiliating for her, but downright painful. Watching her go through a catheter and two enemas, and then a doctor physically removing the feces was heartbreaking. Total hours in the local ER that Sunday: 10.
So, we vowed that we’d rather work at keeping her on the loose side rather than ever let it get hard again. And considering the scripts for the meds the doc sent us home with, it was obvious he felt the same way. And we’ve definitely stayed true to our vow, despite multiple messes as she’s basically been learning how to get to the toilet on time and in the process has messed her pants more times than I can count now.
The Lesson I Learned
And just when I think I can’t possibly learn more about what it means to have a special kid, I learn something amazing. I realized the other night that even my own sense of compassion for her sometimes needs to be refilled. I was grumbling just enough for her to hear me about needing to get to the toilet on time. When I looked up: yeah, I made my kid cry. Wow, what an epic moment in my life. Just when she needed me most to be loving and compassionate and a damn mom, I let her down.
Since then, I’ve really watched myself to make sure I’m not focusing on the wrong, stupid thing. Sure, I get to clean it up, but I’d rather, boy would I rather, be the one cleaning it up. The blow to a person’s dignity when someone has to help them with such a personal and private task is huge.
Breaking your kid’s heart when they need you = parent fail.
Learning from the moment = score!
Life as a parent with a special kid is hard but I have to tell you, I learn more about what it means to give from the heart than I ever could have imagined.