Potty training can be completely nerve wracking for any parent. This intensifies when your child is differently-abled. Will he/she succeed? Ever? Will he/she have to wear pull ups for the rest of his/her life? Let’s face it: we, as parents, have a deep desire for them to succeed.
In our efforts to find success in potty training for our first born son Karl (who happens to have Down syndrome), my wife and I tried to potty train him too early. We falsely assumed, “the earlier we start, the sooner it will happen, right?” It seemed success in potty skills would never come for Karl. Through the whole process, we learned a few keys to finding success in this and many of his future developmental stages. So here are some gems we gleaned.
Our first recommendation: Take a deep breath and exhale slowly. Learn this quote from a much wiser, seasoned parent of a child with intellectual challenges. “I promise you: he will be out of his pull ups long before he starts his first college class.” Although it took Karl longer than his siblings, this friend was right about both, the pull ups and his college classes. So let's take a minute and look at key things that must be in place for success in this stage of development (Note: This was developed from months of research by others who are much smarter than I. I pulled a lot from American Academy of Pediatrics and other resources.).
Here are the three key things we learned to look for:
● Physical: Is the “plumbing” working properly?
● Cognitive: Does the brain “identify” what is happening?
● Developmental: Can the child understand what is happening and coordinate the two above?
Physical: Is the “plumbing” working?
To explore this, we need to talk about muscle tone and muscles that help us to potty. A child with low muscle tone is like an elastic band that has been overstretched. Not only does it take more effort for Karl, who has low tone, to raise his arm, but it takes a greater amount of brain signaling, “Karl, raise your arm” (2. Cognitive). If your child has a cognitive delay, low muscle tone, an under-developed muscular system or other physical complications, we have to take these challenges into consideration in potty training. So, the first question I have is do we see any physical delays in his/her development ?
For you and I to open our sphincter valve which allows us to pee or poop involves an almost subconscious, non-cognitive physical action. (Unless you have to use the bathroom real badly, you probably never even think about that sphincter valve opening and shutting) This is something all of us have to learn to succeed in potty training. But it will most likely take longer for children who are differently-abled to coordinate their muscles to physically accomplish this action. Good clarifying questions to ask: Are they staying dry for a two-hour period? Are they staying dry through a nap? Or Have they created any routine to their bowel movements?
Another important physical principle is wether they can feel it. Diapers and pull ups are so absorbent today. Wearing one makes it a miracle for any kid to feel wet. They have to get to the point that the pull-up is so full that it causes their legs to separate, and the additional weight causes them to wadle across the floor. With the old cloth diapers, it was possible for even the least “feeling” kid to begin to associate an “open sphincter” with discomfort, wetness leakage and warmth down there. With the creation of highly absorbancy, which we all love, we have also made this developmental stage more difficult.
So, my wife and I improvised: When we determined to to start potty training in earnest, we cut hand towels into 3’ by 6’ stips and laid the towels inside the pull up. This allowed Karl to begin to “feel it” when sphincter was doing his job. (Others who have said that this wasn’t effective with their child have found going to cloth diapers was effective.) A third option is diaper alarms that go off when they sense temperature or wetness. The alarm must be kept close by so the child can hear and identify the sound to the sphincter is openingBack to Karl’s arm illustration: it will not only take more effort for my boy to raise his arm physical, it may also take a greater cognitive effort and understanding for him to cognitively move his arm with skill. In basic terms, we call that cognitive delay. This doesn’t mean they can’t learn it, but we know that it may take longer than their peers to get it.
Cognitive - Does the brain “identify” what is happening?
A few things my wife and I noticed which let us know Karl was “starting to get it” or was cognitively ready to get it were: These are things you must look for as well. He or she . . .
● Is able to follow simple instructions.
● Is uncomfortable in a soiled diaper.
● Is in a season of cooperativeness. By this, I mean: He/She isn't defiant and is in a more “eager to please” phase.
● Can sit down for 3-5 minutes quietly.
● Is in a fairly predictable routine.
● Is telling you when they are about to use the restroom or you can see it in facial expression or mannerisms that it's time.
● Is not experiencing major change (ie. another baby, moving, changing school or daycare).
● Walks to the bathroom.
● Can say or sign simple words like toilet, poop or potty.
● Is proud when they do something to please you.
Developmental: Can they understand what is happening and coordinate the physical and the cognitive?
We can assume that they are “getting it” when they begin to try to imitate what others, family members or other children are doing when using a potty. We can also assume that they understand when they are uncomfortable in a dirty diaper. The next step is for them to grasp that “when sphincter opens, I want to be sitting on a potty.” Again, a cloth against the skin is a great way for them to associate “when I open sphincter or push the consequence is pee or poop. Please know: we want for them to positively associate going pee and poop with going to the bathroom to go pee and poop. If we find ourselves angry or frustrated, we may be starting too soon. We don’t want to associate frustration with the process because then they may begin to negatively associate potty with frustration. Remember: kids typically want your approval and praise.
For us training meant reserving a whole weekend for a crash course. Some have found the same crash course to be effective. This worked the first and second time with Karl.
We took Karl and his younger brother (by 1.5 years) to a home with hardwood floors (grandma’s). We put both in big boy pants with rubber pants on top and started flooding them with juice and water. We had the mop and bucket for accidents. We set an alarm for every hour. When the alarm went off they sat on matching potties, got a snack and had a book of great interest to them read to them. With every success, a happy dance ensued. We used “target practice” in the toilet using Cheerios in the big boy potty. Three days and both were proficient.
Then, a bit later, Karl had a growth spurt in speech, and he lost the reguler success he had achieved. We waited till things leveled out and he had full success in a round 2, crash-course weekend, along with a lot more talking. We also got him a watch with multiple alarms scheduled for his daily routine and when it went off we sat and read.
The one thing you need to hear is that they, in almost all cases, will succeed in this. You will be victorious. However, don’t just take the Hoecke family’s word for it. Please read other information about strategies. The USC School of Medicine Center for Disability Resources Library is an amazing source full of free resources on this topic and many others. They loan resources to you, with a postage-paid return envelope, resources from their huge resource list. These are free resources for any individual with special needs or their families.
Have a positive outlook. Believe they are going to make it. And, as always, don’t try something like potty training or any other major skill acquisition when you are too tired to be kind and patient. Success depends on our outlook and our attitude as parents too.