Almost all parents have difficulty with toilet training at one time or another, but with our PPP children there are extra challenges to grapple with.
How do we know when our child is ready to start potty training? How will they let us know when they need to go to the bathroom? At what age should we expect the child to be dry?
Some of our children started potty training before they could walk, and many of our children are still not dry at an older age.
In order to be able to go to the toilet independently, the following prerequisites must be present:
- the ability to feel when you need to go to the bathroom,
- the ability to hold the urine with the help of the muscles,
- the ability to communicate this need in any way.
For non-verbal children, parents used a picture or a sign for their child to use when they needed to use the toilet. Parents have mentioned that rewards like small pieces of candy did not work for their child, but watching the color of the toilet water change or putting undies under diapers helped children understand the activity and the feeling of being wet.
Children who are dry during the day typically are not dry overnight until a few years after they have achieved day dryness. On occasion, our children may have accidents in new or stressful situations, even if they have been typically dry for a few years.
Here are some insights from our families. We anonymously took comments from our Facebook page to use as a resource for families with Jordan’s Syndrome. The child’s sex, variation, year of birth (DOB), and other diagnosis are listed for reference.
An example of a communication board that helps explain and communicate to the child the process of using the toilet
First: How did you know your child was ready to begin toilet training?
Families also left a training potty around the house, and would read a book while their child sat. If the child was willing to sit for a period, it seemed they were close to accepting the process. Buying big-kid undies can make the experience fun! Read comments from two of our moms below:
Female, E200k, DOB 2011: “She was asking to use the potty but wasn't walking, and didn't have the core strength to get on to or sit on the toilet. We actually kept it a secret because all her therapists thought we were expecting too much from her and setting her up for failure. She was so motivated and insistent on being a "big girl". We listened to her, not the experts. It didn't make sense to us to make her wear a diaper if she really wanted to be independent (as possible) and use the toilet. We found ways to make it work for her. She was potty trained before she was able to walk. If you think your child is ready, don't let the experts dissuade you. We kept it positive and fun. We did a lot of unorthodox trial and error. She wore little sundresses with no underwear around the house for months because she couldn't manage shorts or undies.”
Female, E197K, DOB 2011: “A was trained around 5 years of age. We started with reading children’s books about potty training and just waiting for her to decide when she wanted to try it. When she was ready to go we let her go pick out big girl undies and we would put a timer on for her just to even go sit on the toilet even if she didn't have to go. Once we put in her in big girl pants, we didn't let her go back to just a diaper. If we went out in public we would put her underwear on and the pull-ups on top so that she could feel when she was wet. We had to always carry around extra sets of underpants for her and had to toss a lot out as well until she got the hang of it.”
For those who have been successful in toilet training, what did your process look like? Read two comprehensive stories below.
Female, E198K, DOB 2013: “We started putting our daughter on the potty when she was 2. She wasn’t walking or standing independently as yet but was using her walker. We didn’t have much expectations at that point other than exposing her to the concept. We would put her on the potty in the morning, after school (she went to a toddler class), and in the evening. That actually got her poop trained. She wouldn’t ask to go but would wait for the opportunity. She was in her pull up otherwise.
As far as communication, we would say it “go potty”, we would sign it, we would use pictures, and we used the push buttons that you would press and it said “potty”. She wasn’t using any of them but we were demonstrating the different methods she could use to let us know.
After her 3rd birthday is when we started training further. She was able to stand and walk by then. We started by having the little potty around wherever she was at home and keeping her butt naked (she wasn’t able to pull her undies down and up so we just took them away)... we had the pictures of potty around the house for visual reminders. We also bought potty books and watched potty videos. We also suggested a potty break started with about 20 min and worked our way up to 45 min.
Once she was able to hold for 45 min we stopped pull ups all together. Instead of packing diapers we would pack lots of change of clothes. We would give her potty breaks every 30-45 wherever we were. It was difficult but was part of her success. On road trips and such we would take the little potty with us and have her pee in the trunk of the car.
Eventually at home we stopped prompting her. We explained that she is in charge and can go whenever she’d like. We kept the little potty and the communication methods available. Whenever we had accidents we would actually let her feel the wet underwear and explain the difference between wet and dry. She liked being in charge and actually did better with this approach.
When we were consistent with no accidents outside of the house, we asked the school if they would try her in undies and they were on board. We also had the pictures and talker available for her to ask to use the potty. We had one accident that first week at school but was okay after.
After about 9 months start to finish (after her 3rd bday and before her 4th bday), we became accidents free. She started signing potty or taking us to the potty. We enabled the bathroom seat to be accessible so she can climb up on it by herself.
She can now use her voice to request to go. She actually says “I have to go potty”. She is now able to do it independently at school and home.”
Male, E420K, DOB 2013 : “We started our son on the potty at 16 months before he could walk. He would go when placed. No one could believe it. Now that he is 4 we have a little potty out in the living room (also for his two year old brother). It's there as a visual reminder and also because he can't get into the big toilet alone. It's a higher one. He can however get onto the lower one but it's within our master bedroom and takes some walking to get to. He will just go without saying anything during the day. He wears underwear or goes naked. He just learned how to pull up and down his pants a few months ago. He really likes when he has blue water in the potty and will say green! once he goes. He also enjoys flushing it and seeing the bubbles it creates when going down. He likes to shout bubbles bubbles bubbles!”
At the moment we have several families who are in the process of training, but haven’t quite been able to avoid accidents and stay dry. One mother stresses the importance of staying consistent while potty training your child:
Female, E198K, DOB 2015: “We put her on the toilet at the same times each day: first thing in the morning, after nap and before bed (and more if she signs). We also got the oxo travel potty which saved our recent vacation and was amazing. I love it because my biggest takeaway is that you have to show consistency that if she signs, you take her. At first, I’d be like oh it’s not going to work here so she’s got a diaper, eh, and she got frustrated and signed less so I always take her which is impossible without that travel potty. I imagine she’s far, far away from true potty training as she won’t sign for anyone else.”
At what age can you anticipate your child will be dry by?
Male, E200K, DOB 2010: “when our son was turning 5 and just before he started school we had a break through …during the day. A big part was thanks to our new pediatrician who reset his guts bacteria by prescribing strong antibiotics to kill all good and bad bacteria in his gut and then probiotics every morning. Within a few weeks he seemed to know when he needed to go. As for the night it was two years later.”
Female, E198K, DOB 1997: “Our daughter was toilet trained around 5 years of age-(she walked at age 4) she wore pull ups at night until she was in her teens. It was very challenging to get her to the point of no accidents during the day. We still wake her about 2 hours after she goes to sleep at night to use the toilet or she will wet the bed (she is 21)”
Female, D251A, DOB 2009 : “Our daughter wasn't potty trained until 5. We did get her relatively dry around 3, but once she went into full time school she had accidents all day and it was decided she was better in pull ups.
Night time we have just got her dry at age 9.”
How did you help your child learn to communicate the need to go?
Male, E198K, DOB 2012 : “You can use a symbol or a photo of the bathroom, the potty etc. Place this picture in the room where the child is acting, living, playing, etc. The picture is best hung on a well visible and easily accessible and attached with Velcro. When the child goes to the bathroom, the adult takes the picture from the wall and shows it to the child and says, "I have to go to the bathroom". He repeats this with every use of the toilet. The aim is to model the behavior to the child under they start doing it independently. Depending on the child's abilities, instead of a picture, you can use a gesture and sign it when you go to the toilet with the child.”
Beit Issie Shapiro - School
Toilet Training Children with Disabilities - Guide book for staff and parents