Q&A: CHARGE Syndrome Potty Training?

Question:

I work with a  6-year-old boy with CHARGE Syndrome who is deaf and has a cochlear implant. He presents with a significantly impaired vestibular system and developmental delays in gross and fine-motor skills. He is a very bright, active, engaged child and communicates with SEE sign language. His sensory needs are pretty great and his mom has done a good job implementing several strategies for everyday things. He demonstrates many prop seeking behaviors (e.g., hitting, teeth grinding, unawareness of excessive force in his general movements).

When it comes to potty training he is very under-responsive. The biggest problem area is at bedtime. He will have a BM and be completely unaware of it, not being disturbed at all for the duration of the night. This is quite fatiguing and overwhelming for his parents on a nightly basis as you can imagine, having to continually change a 6-year-old’s diaper. He is fairly regular with the schedule as to when he goes in his pull-ups, but when sat on the toilet at any of those times he will not go, no matter how long he sits there. He does not indicate to his parents when he needs to go. The great thing is that he has twin 3-year-old brothers, so he has several opportunities to learn through observation and modeling of behaviors. However, we haven’t seen much progress.

He has decreased core strength and we’ve discussed that one contributing factor could be that he is most relaxed and comfortable while his body is not having to work as hard to stay upright. We’ve also discussed the importance of making the connection and association between the sensation, the action, and the results. We’ve come up with a few ideas but none that have really made an impact yet.

Do you have any insight on a sensory-based approach to this?

Answer:

I personally have not had the opportunity to work with any children with CHARGE but, interestingly, I’ve been in touch with a therapist on the west coast who has worked with several kids with this diagnosis. Sounds like this child you are describing is pretty typical of this diagnosis.

Potty training is a HUGE issue—actually it and masturbation make up the vast majority of emails I receive! I really think we need much more research on potty training methods for kids with special needs, including sensory issues. As it is, I’m not sure I have much to offer that you haven’t already thought of. I think you are absolutely right about his ability to “go” while laying down versus when he is upright and having to work so hard to sustain his posture. Here are some thoughts:

1. Since he is already in the routine of pooping at night, let’s use that for now.
2. About an hour before bed, read a social story about pooping. You might even want to make a custom one about the steps I’m suggesting below.
3. If parents are okay with this, I would recommend having him wear only a long T-shirt in that hour before bed so he will get more sensory feedback if he starts to poop.
4. After the social story, roll him on his belly over a large therapy ball. This will relax his core muscles. There is something about vestibular input that activates the involuntary muscles. Try to gently roll him on the ball for 10 or 15 minutes. Tell him this will help him poop. You want him to be thinking about pooping.
5. After rolling, have him lay on the floor to watch a TV show or listen to books. Take frequent breaks to ask him to try to poop. I know it sounds gross, but I think I would encourage him to try to poop in the laying down position (have a bed pad or disposable cloth under him). My thought is that once he learns to control those muscles without having to simultaneously work to stay upright, the skill might become easier for him so that eventually he could do both at once (poop while remaining upright).
6. If parents can take turns or take a few days off of work, I would even recommend one of them staying with him all night until he poops. If he is asleep when he starts to poop, wake him up and make him aware of what is happening. If he is able to poop while laying down, give lots of praise. Even though it’s not the toilet, it’s still progress if he is aware of it and can control it in this position.
7. If he learns to poop in the laying down position and is able to identify the sensation of needing to go, you might want to look into positioning equipment for the toilet that would handle his posture for him, so he is free to relax and focus only on pooping.
8. When he does poop in his pull-up or in his bed, I would require him to be an active participant in the cleanup process. This isn’t meant to be a punishment, rather just a natural consequence to make him aware of the need to learn to control this bodily function. For all humans, change only occurs when the pain of staying the same is greater that than the pain involved in changing! We want to make sure he is motivated to change! Use positive motivators as well.

It sounds like you are already well aware of his other sensory needs. Encourage the parents to make sure those needs are met throughout the day.

I truly believe this child will be able to acquire this skill. It will mean some long and frustrating nights for the parents, but hopefully in the long run, it will be worth it!

Please keep me posted on whether these ideas work or if you find something else that does the magic. I’m always needing more tips and tricks for this skill!

Best Wishes,
Gwen