Parent Perspective: Thoughts on the New ATN/AIR-P Constipation Guide
This is a post by Scott and Ellen Ambler, the parents of a son with autism who has experienced difficulty with constipation and faced obstacles in their efforts to treat it.
As our son got older, we struggled with toileting. Urination – no sweat! But the pooping was only occurring in a pull up diaper. As we observed over time, he sat on the toilet to pee but did not poop sitting down. He pooped standing up! It was difficult to know when he actually needed to poop and since he did not have a bowel movement (BM) daily, it was impossible to create a routine. He had a terrible diet consisting of mainly carbs and very little fiber, so he was constipated most of the time. Stools were very large, hard to pass, required much pushing and were probably painful. (Diet and sensory issues definitely contributed but that is a whole other story.)
We followed many of the guidelines of the Guide to Managing Constipation in Children. Although we were unable to get more fiber into his diet, we gave him Miralax every evening to assist with the process. He drank plenty of water. We created a schedule of time in the bathroom. We tracked his bowel movements. When he did poop (in his pull up), we would show him that it emptied into the toilet. We even consulted with a specialist.
This toileting problem was not only physically difficult but it was affecting his social opportunities. This saddened us so much that we moved this issue to the top of the list. (You know, the list: the one thousand and one things you want to help your child learn to be ready for the “real” world.) We knew that he would only poop in a pull up while at home. By the spring of 2012, we decided to step up our game. We had a unique opportunity to implement what we had learned from (the tool kit, the spealist). We knew that he would be poised and ready for a BM – after attending camp for 6 days and 5 nights. Knowing full well he would not poop away from home, we picked him up from camp, presented him with new “entertainment” (a new iPad for use only in the bathroom), and brought him, and the new iPad, to the bathroom. Reviewing previous information about how “poop goes in the toilet”, he stayed in the bathroom with his new iPad, naked from the waist down. Our mission: He would not leave the bathroom until there was “product in the bowl” as our specialist called it. It took several hours but when it finally occurred, I’m sure the neighbors heard us celebrating!
We did not stop there, however. We continued with all of the above strategies. We rewarded him with preferred activities as recommended in the Tool Kit. But most of all, we were vigilant. Yes, there were accidents and many days that saw multiple pairs of underpants. But we were definitely not going back! A year later, life does not revolve around the bathroom. He has a routine that works for him. It is by far one of his largest accomplishments and I am proud of all of us for giving it so much effort.