First off, this is not a secret guide that has solved all the trials with potty training a special needs child. Sorry, no magic bullet as each of our extraordinary children are beautiful snowflakes. At the same time, we’ve learned a few things for our specific situation which we’re happy to share.
We treasure this article as a place to share the challenges, the moments where we just had to laugh (sometimes only days or weeks later), and provide a little “you can do it” for all of us in the thick of this fight.
Make yourself comfortable…
Secondly, I recognize that potty training isn’t even an option for many of our parents of special needs children out there. As a sibling of a quadrepelegic sister with cerebral palsy, we all knew that Christine would never be potty trained. That idea is completely laughable. She’ll be in diapers her entire life and I recall changing my older sister’s diapers when babysitting as a teenager. But we can go into adult diaper recommendations, frustrations (and clever solutions) to combat the way-too-small changing tables in public bathrooms, & the ranking of wipes brands for another day. Just wanted to state the obvious and recognize that like most special needs topics, this story has limited relevance.
John has been potty training for the past 5 years, and he’s barely 10 years old. He’s made a ton of progress and we are exceedingly grateful for that, but there’s rarely a day that we don’t have an accident of some sort that requires a change of clothes, and perhaps another set of underwear in the outside trash. But we are some of the lucky ones that are able to be out of diapers and have some accident-free days sprinkled in there too. I can only smile to myself when I hear fellow parents share in exasperation that they’ve been trying to potty train a typically developing child for a week or two and it’s just not taking! I feel you, oh, I feel you more than you’ll ever imagine.
We could not do it alone.
Not a chance. We geared up with John’s ABA therapists for battle. The day to start potty training was marked on the calendar months in advance. Schedules were wiped clear and all were committed to seeing it through. The approach may sound quite simple, but it was anything but. And it was this – no clothes from the equator down, and you spend the day in the bathroom. Not near the bathroom, not around the house. In. The. Bathroom. And when duty calls, you jumped to action and tried to land something (anything!) in the porcelain throne. And for the first few weeks, this was life, and anything (even just drops) in the toilet was hailed as a crowning achievement – and it was.
And even after those first few weeks, success was very limited. And like so many things with John, we learned to treasure and find gratitude in each small step of progress. The best way I can describe it is to take the steps of potty training a typically developing child, and break each step into 1,000 tiny pieces. Oh, and then expect that some weeks you’ll move a few steps in the right direction, and some weeks you’ll take some big steps back. All I can say is keep at it. Getting to the point that you’re glad you did it may be years away, but no parent that’s ever made it to that point as regretted the effort. You CAN do it. And you will have MANY stories that I hope you can one day look back and laugh about. Not everyone enjoys potty humor, but I think as special needs parents, we have to. It’s a coping mechanism if nothing else!
Even today, there are environments that give me anxiety just thinking about them. John loves to swim. LOVES to swim. As many parents of extraordinary children know, when our kids love something, it deserves an extra emphasis. The problem with this passion, is that water is somehow the most effective laxative one could imagine for John’s body. Once he hits the water, we know it’s just a matter of time. Sometimes we’ll try and try and try and try to go before hitting the pool, yet somehow 5 minutes into a swim we get what we couldn’t beg to happen just moments before.
Our current approach is to let him jump in the water and swim for about 60 seconds, then we rush him to the nearest bathroom and have had moderate success taking care of things in the right place. We’re not exactly batting all-star game averages, but we’ve found it to be the most effective thing for us.
We’ve also gone back to a swim diaper, and while this creates fears of regression, it’s just a step we’ve had to take and it’s okay. I’m learning to be okay with things that are just right and make sense. It’s not what I want, but that’s really not the point here anyway. The point is to figure out ways to do things as a family that John loves, and make sure we’re not ruining it for everyone else to the best of our ability. And that’s what it comes down to, you do your best, and hope for the rest!
John just turned 10 last month, and I’d be lying if I didn’t feel a sense of satisfaction that we hit this milestone. It was celebrated with a little pool time (unfortunately one that negatively impacted our potty training batting average), followed by some dear friends coming by with cake and a super soft blanket.
Fortunately he was in a good mood to end the day (as early in the day he had some pretty scary aggression) and he was laughing and acting goofy during the little party. Then there was a thunderstorm that night which throws his sleeping for a loop. Needless to say, it feels like we had a microcosm of raising an extraordinary child all in one day – and of course, it was his birthday.
Crazy hard, but you guys are resilient and magnanimous! I love you so much!