- Fragile X-associated Disorders
- Treatment & Intervention
- Support the NFXF
Source: Foundation Quarterly, Issue 33, March 2009
Jayne Dixon Weber
This is one more story about children who do not want to go poo…in the toilet. (Sorry, I debated about which term to use):
No. 2, BM, etc., but decided this one was the most fun to say out loud.) It is probably not for the faint of heart, though it does make you realize that you will do anything for your children. For verification on that point, count how many times you say “Eeuww!” when you read this article.
In any case, I do not think you can hear too many of these stories. Now, my daughter would beg to differ, but probably because she has heard us talk about this more than is strictly required for her own education. But I think that issues with toileting and hygiene are the epitome of “socially unacceptable.” And while I do not want to get too carried away with this topic, I am looking to achieve some level of social acceptance for what is clearly an important subject in the Fragile X world.
When my son was 10 and still using a diaper (though only for poo), I decided enough was enough. What follows is the process I used to take him from using a diaper to using the toilet.
Now, I had a couple of things going for me: My son was going No. 1 in the toilet, he would ask for a diaper when he needed to go poo, and when I put it on, he would go, and we would be done. To make the move to using the toilet successful, I knew I had to break it down into steps-steps that were so small he did not even see them as a change.
I also knew that I had to come up with a reward system that worked. That was no small task.
I knew from experience that at least for my son, he did not like it if he knew I bought something and was keeping it until he reached a goal (I had tried this for No. 1 but I think it caused him so much anxiety, he could not stand it.) What I found is that he liked to reach the goal and then immediately go get the item. Sometimes it was O.K. if I had an item that he did not know about, but then I had to make sure I picked the right thing. You know how that goes.
Fortunately for me, my son liked gloves, any and all types, and there are a zillion different types that would not break my budget. So my plan began to take shape. During a calm time I told my son that he was going to learn to go poo in the toilet. I told him we had plenty of time, that we were going to take it slowly, and that he would be rewarded along the way. I told him that I would keep him apprised at each step on what he had to do to earn his next prize.
Sometimes when I set a goal for him, I would quickly realize that it was too ambitious, and then I would have to come up with a compromise goal that still represented progress, just not as much as I would have liked.
(Note: some parents may want to use visuals for any or all of this. I tried the Mr. Rogers video, but once was enough for my son. No family members were willing to pose for action photos of these steps-you will see why. Stick figures do not have the same effect.)
One day, when we were down to about a half-inch wide piece of the diaper around his waist, he said, “I can do it.” And he did.
It took four months, with my son now having acquired a pair of every type of gloves imaginable-and I felt like I wasted a lot of diapers. But we were done…done done done…Well, mostly… As you can imagine (sorry again here) wiping was another issue. It was difficult finding the right balance between an adequate wipe and clogging the toilet with paper. Sometimes we flushed the toilet a lot, and sometimes we used a grocery store plastic bag. The best advice I can give you is to have an arsenal of “stuff” always available: a set of clean clothes, box(es) of wet wipes, and plastic bags. Oh, and learn where all the “family” restrooms are in your city and in every place you visit.
One more point: I have learned that my son’s stool can become loose very easily. A little bit of fiber goes a long way.
Thank goodness he likes bananas-they seem to work well for him. Stress and anxiety can also have an effect on his stools.
When he has an accident, I look at the food he ate; if he has a second accident, I start looking at what else is going on in his life.
Whether you are just now starting toilet training for your child or starting for the umpteenth time, look at as many ideas/strategies as you can find, and develop one or a combination of several. Make sure you start when there is not a lot going on in your life, and try to store up a lot of patience!
We’re in the process of revamping our website message boards at fragilex.org, and when we are done I’d like to start a dialogue where others can write in with what works for them.
Let me know how it goes…so to speak.
Jayne Dixon Weber is the support services coordinator for the NFXF. Send your questions to her at: firstname.lastname@example.org.