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It’s not often talked about…

I debated for some time when it came to writing this post. While there are many challenges faced by families living with Autism, one challenge that we face (like so many others) is toileting.

Sam is now 7 years old. He learned how to urinate in a toilet (consistently) about a year ago. He has yet to have a successful bowel movement on the toilet.

There are many causes, from Sam’s idiosyncratic relationship with his own body, the cues he simply does not get (the ones we take for granted in our own body / the messages to the brain that signal that it’s time to go)  and his hypotonia (low muscle tone).

This is a work in progress AND it’s a difficult subject to broach. We are constantly trying to assist Sam and are always working, always vigilant in protecting him, trying to teach him the boundaries, to show him what is good and bad. We’ve only just reached an important milestone – where Sam is able to feel his body’s cue when it’s time to go pee. Even better… Recently he has done so by himself! Yay! We still have to routinely take him to the bathroom though and deviating from that routine will often result in him peeing on himself, or somewhere other than a toilet.

We’re on the right path right? I mean, come on… this progress is awesome!

I suppose I’m taking this opportunity to vent a little. Sometimes it’s overwhelming and exhausting. Sometimes it’s embarrassing and challenging for Jen & I and most of all it must be awfully uncomfortable for Sam.

Think about it… 7 years! If you are a parent, take a moment to think of how ready you were to stop changing diapers. I’m not complaining, I’m just telling you, the reader, so that you might have more compassion toward parents who have children with special needs – often, you have no idea what kind of work happens in the day to day.

I’m sparing you all some of the most awkward tales… Things like being at a party, events, restaurants, etc.

So what do we do from this point forward?

We’ll keep trying to help Sam transition from pull-ups to the toilet.

We’ll do what we can using a low-pressure approach. The worst thing I could think of is to create a lifetime of anxiety around bowel movements for our son.

We continue to support Sam the best that we can. We’ll not push him, or force him, shame him or punish him. These tactics seem to be things that may have occurred in my generation when we were young… Instead, we continue to provide Sam with a supportive and encouraging environment.

Perhaps this fall may see big changes? Maybe the beginning of 2013?

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July 21, 2012 - 10:01 pm

Jen D - That’s got to be so hard for so many reasons. Elsa was pretty well trained by 2.5 but then had a major regression before Miles arrived that continued for a long time. And she still has accidents – every day this week, in fact, just when I thought it might be safe to ditch the padded training pants! Potty issues are so hard and there’s not much you can do. I know. I tried. Nothing works until they want to do it. Good for you for hanging with Sam for so long. You are such good parents.

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