The Challenges of Potty Training & CP
Potty training is an area of development that has been very challenging for us. For the last three years we have had much confusion about the amount of physical control Maya has over her bowel and urinary tract functions. This has caused us a considerable amount of stress and it is certainly an issue that many other parents of children with CP face. We have had to consider so many variables to assess Maya’s readiness or desire to try to use the toilet. In fact, I waited several months before writing this section because there were many questions I had about her potty learning that I wanted to investigate further before commenting here.
One of the materials we read (from Rifton and listed below) offering guidance about toilet training readiness for special needs children suggests that parents don’t start this process until the child is ambulatory. I am not sure if the reasoning relates to the muscles supporting the body appropriately or if it has more to do with the child being able to access the restroom independently. I happened to read this after we had already started this process. Maya had an interest and even excitement about using the toilet at age 2, and we figured there was no harm in seeing how she did with it. She is five now and though we are still working on toileting issues, she has about mastered using the toilet for bowel movements.
Whereas Maya’s father (Blake) has had much anxiety about this subject, I have had fewer concerns. We each attach varying levels of anxiety to different developmental issues so this is familiar territory for us. I figure she will eventually work through this developmental piece to the best of her ability and whatever she cannot manage we will help her cope with in a dignified way. Dad on the other hand worries that other children will tease her if she has accidents or if they see she still uses diapers.
Regardless of our differing points of view, we have shared frustration, disappointment and even anger over Maya’s ebbs and flows in successfully using the bathroom. If it was something beyond her control we did not want to harm her self-esteem further by pressuring her, but the reasons for her difficulty have not always been clear.
I recently had an informal discussion with a few other parents of children with CP about potty training. It was started by a mom whose story captured many of the issues we have faced and that we have wondered about for the last few years. Her son is only three but just as Maya has had days and even a week with almost no accidents (and this has been the case for several years now), so has this child. I think this is exactly what is so confusing to parents: How can a child be so close to mastering this task and then have an accident a few days later with no idea that they have wet themselves?
Another parent said her son demonstrated an interest in using the bathroom at age three but did not master this developmental piece until he was ten. She eventually put him on a regular schedule for using the bathroom but still had him in disposable pull-ups. She said her and her husband made a point not to get upset when he had an accident. This reduced the stress of navigating this process. Over time he was having fewer accidents and they eventually weaned him off of the pull-ups and gave him less protection. Can you imagine fighting rather than embracing this process for that many years?
We have gone through phases of backing off, rewarding, following a schedule with timers, becoming angry (when we thought she may have gone in her pants deliberately), rewarding again, using cloth diapers (to increase the awareness of having an accident), and even allowing her to be naked at home so that she can feel if she starts to go right away.
After three years, I am not sure that any of these techniques have helped, and I now know that (for the most part) motivation is not the issue we are facing. There are times when Maya has gone to the bathroom on the toilet but not even realized she has relieved herself until I have shown her. Other times, she insists she needs to go but doesn’t. Over time I have learned that she wants to succeed and she takes pride in using the toilet successfully for bowel movements. If she wasn’t having any success, or if it was remote, we wouldn’t continue to pursue this process. Even so, I have come to accept that this pattern may continue indefinitely for her.
To understand the challenges children with CP may face when controlling their bladder I think about what it’s like when the dentist gives me Novocain and I can’t always feel when liquid is coming out of my mouth after having something to drink. The shifts in muscle tone that come with CP make it tough for these children to always know and feel what is happening with their urinary tracts and intestines. What may appear to be laziness or a lack of motivation may just be another CP related challenge.
For now we keep Maya on a regular schedule of trying to use the bathroom while she is at school and before and after certain activities (out of convenience since she will often ask to be changed if she has an accident). Her caregiver recently started rewarding her since she has had more days where she has been successful staying dry the entire school day. We know it takes effort on her part to think about using the bathroom in addition to managing all of the other challenges associated with her motor control. We have also learned that punishing her by appearing disappointed or angry, or taking privileges away hurts her and this process more. We tried this approach and primarily increased her anxiety and made her afraid of having an accident. If we gained anything, it was that Maya understood that we were taking this issue very seriously and if any part of her was motivated to please us this gave her the opportunity to do so. Perhaps this approach was a necessary stepping- stone for determining what was going on but it was certainly hard for all of us.
I suggest working with your developmental pediatrician (or regular pediatrician) to determine when it is appropriate to begin to work with your child on using the toilet. Our developmental pediatrician said it is important to make sure there are no issues with her urinary tract and/or kidneys since this can obviously affect the child’s ability to be successful through the process of potty training.
As with other areas of development, bring your patience before embarking on this journey and approach it as an experiment where you are learning more about your child in the most non-judgmental manner possible. We have learned to be consistent when we are trying a particular approach, and we are learning to now remove any personal attachment for accomplishing this process within a certain period of time or accepting that we may move no farther from where we are now.
Here are some common issues and questions we and other parents have faced:
I asked Susan Demetrides, CRNP of the Phelps Center for Cerebral Palsy & Neurodevelopmental Medicine at The Kennedy Kriger Institute to offer her general input/insight on some of these questions. It is imperative that you consult with your child’s (or your own) local physicians and medical professionals regarding the individual person’s unique medical issues and complexity that may be contributing to his/her potty training challenges. If she has responded to a particular question her answer is in “bold” below the stated question.
How do I know if my child is ready to begin trying to use the toilet?
“First, I assess every child individually. Toilet training is more complex than most people think. As you probably know, the child needs to be emotionally and physically ready.
If a child is acting like a 2 year old they likely aren’t ready. Many children with physical disabilities impacting the nervous system are not ready until after 5 Years. Most children should be at a cognitive level of 3 years (with or without CP before toilet traning should seriously be considered). There are some children who are ready before then, but unless it is the child really initiating, not the parent, then earlier toilet training often fails.
From a physical perspective, the child needs good trunk support and foot support to even feel comfortable sitting on a toilet. If positioning is not adequately addressed, the child will be very uncomfortable. Therapists can be very helpful with input regarding positioning.”
Is there an underlying medical issue besides CP that is preventing my child from being successful in using the bathroom?
Constipation (and related issues such as giving Miralax and/or lots of fiber etc.) often makes Maya less successful in managing her bladder functions and often makes it more difficult for her to control her bowel function as well.
“The most important thing that I have found, has been managing constipation. A child who has consistently soft stools will have an easier time developing bowel control. Many parents stop using Miralax when they see loose stools too early. What they are most likely seeing is overflow constipation. When the Miralax is stopped, the cycle starts again. It is very important that stool says soft, as if a child develops hard stool, they may associate pain with having a bowel movement. This can result in stool withholding. I use a picture guide for parents to show me their child’s stool consistency and I would say at least 80 % of the time there is frank constipation. The rest of the time there is variability. I generally stay away from fiber supplements in young children unless they take adequate fluids. Taking fiber supplements without fluid can lead to constipation. Fruit-eze is a natural fiber (fruit) that some children will accept.”
Apparently (several parents reported this on a CP forum as well) ability to master bowel functions does not always mean that child will be able to master bladder function just as well.
Very often we find that it takes Maya longer to release her bladder. This has been frustrating and difficult for me especially when we are outside of our home and I am balancing her on the toilet while squatting. It’s better now that she is older, but she definitely takes longer to get started then what is typical.
“I believe that the concept of neurogenic bladder is underestimated in children with cerebral palsy. If you have been working with your child on bladder training for 6 months and they are still having trouble initiating, I usually have parents do bladder tracking sheets and get a renal/bladder ultrasound pre and post void. This will tell me that the anatomy is fine, there is no hydronephrosis or swelling of the kidneys, and she is able to empty her bladder. If the child has urinary tract infections, further testing like VCUG and urodynamic studies might be considered. There is a recent study out that I will try to find about neurogenic bladder and CP.
If your pediatrician thinks that your child has voiding dysfunction, biofeedback (with games) can be helpful in learning coordination. Children usually need to be at developmental level of 6 or 7 yrs to be accepted into a biofeedback program. You could check with a local pediatric urologist to see if this is available in your area.
But again make sure constipation is addressed as it will negatively impact bladder functioning.”
Is there a medication she is taking that is making it harder for her to control her bathroom functions?
“Re meds: baclofen can effect bladder functioning. But I have seen many children who have not had problems with bladder functioning with baclofen. I would check with your pharmacist about your child’s medications and side effects.”
If she can hold her urine all night and even ask to go the bathroom, why can’t she do it during the day?
Why is she able to successfully use the toilet for a week and then has difficulty with controlling her bladder and bowels the next week?
Is she properly motivated?
Does she not care about having accidents because we change her right away? What if we didn’t?
Why does she have more difficulty controlling her bladder toward the end of the day?
Most of the time she can tell us right away if she has had an accident in her diaper. Why can’t she tell us at the beginning of the accident and let us take her to the bathroom?
Does her positioning and comfort on the toilet help her successfully relieve herself?
Will peer pressure make her more successful?
Should we become angry with her in order to gain more understanding about whether this is a motivational problem?
“It is normal to have accidents at first. The most important thing is to get the child comfortable with using the toilet and not giving negative attention to accidents. Some kids do ok with a pad in their underwear if they have a little leaking. Because it takes a few months, so start when the home environment is calm and there are no new changes coming up.”
If she can often use the toilet when we put her on there how come she cannot tell us more often when she has to go?
Is she being untruthful when she says she has no idea that she just completely soaked herself?
Why does she have to urinate more often than most children?
My daughter often says she has to go right away at difficult times and after she has been asked if she need to go and given the opportunity to try (before a plane takes off, before it lands, when we are in the car etc.). She doesn’t always go when I make arrangements for her during these times. Will it harm her progress if I tell her to go in her diaper if she can’t hold it?
Article on Toilet Training and Multiple Disabilities
Here is a wonderful app called Pepi Play for Iphones, Ipads, and Androids that helps your child learn about using the bathroom along with washing her/himself, cleaning clothes and taking a shower. It is quite graphic (lots of real life noises).
Helpful Related Products
Just for toddlers:
One Step Ahead Wooden Potty Chair *The One Step Ahead website states it will hold up to 100 lbs
More products for children and up:
Rifton Blue Wave Toileting System
Aquanaut-We have not used this but I would like to know if you have. Please tell us what you think: email@example.com.
Leckey Easy Seat Potty Trainer-We haven’t used this one but we have used something similar that is no longer made. It happens to be Maya’s favorite but not mine since I have to clean out the tray. She is most comfortable having her feet on the ground when using the toilet.
Special Tomato Potty Seats (elongated and round available)-great for travel
*A toilet aid that has been designed but not produced that I am very excited about for use outside of the home. The designer will update us with further developments and is currently working on bringing is product to market.
Custom made cloth diaper pull ups with snaps on both sides-Especially helpful when regular diapers and pull-up were not working due to spasticity issues which caused the areas of wetness to be in non-traditional places. Also, cloth diaper pull-ups for helping children feel and look more like they are wearing underwear. All of the people we have purchased our custom diapers from are no longer making them. We do however prefer the Trimsie Trainers so if you know how to sew you may wish to look into them. *We haven’t tried these yet but this company offers an adjustable trainer that can be used up to 50 lbs: Sprout Change Training Pants.
If you wish to purse cloth diapering you may wish to purchase a wet/dry bag. I really like this mom’s products and she has worked with me to custom-make bags that fit the back of Maya’s wheelchair. I find them to be more then the more expensive and popular bags on the market for cloth diapering. I like using it even if we are not using our cloth diapers because I can store extra clothes and diapers in it as well as placing soiled/wet clothing in the “wet” section of the bag: She is on e-bay, facebook, and Hyena Cart.
Here is a small article on cloth diapering and special needs.
Here is a fact vs fiction on cloth diapering.
Cloth 101, and one more cloth 101 resource that discusses types of cloth diapers
Squishy Tushy (love the name) offers inexpensive ($10.oo at the time I wrote this) online cloth diapering 101 class.
If you are using disposable pull-ups I highly encourage you to use the ones with velcro on both sides. It’s much easier to be able to use a pull-up or diaper that allows you to put it on and take it off without having to remove your child’s clothes and shoes if he/she has an accident.
*You may wish to visit another section of our site called “Using a Public Restroom”.
My son is 5 years old and has celebral palsy but his carers can’t seem to agree on the type, some say spastic and some say he may be ataxic so I just call it mixed. He is labelled mild to moderate because he still can’t walk independently but his fine motor skills especially with his hands is impressive. He is very smart and catches on quickly but he is also stubborn not keen to perform on demand, very private and a bit OCD. These issues have made it hard to potty train until now. He absolutely refused to go in the potty and now he has a potty seat on the toilet he will sit there and balance but he squeezes and holds it for hours if he has to. I don’t know if he simply refuses to go or if the concentration from trying to sit still on the toilet makes his muscles tense up. Also, he seems to have his bowel movements when he is alone, when I leave the room, in his diaper so I believe he may feel better if I leave him alone on the toilet. I don’t like to do this though because when I leave he seems to lose focus, he flushes the toilet etc. and I never know if he’s passed urine or not. I also worry he may suddenly get distracted reaching for something and fall off. It’s hard because he goes to a mainstream school where I teach but where the requirement for entry is that he be potty trained. The principal made an exception because I was there and could change his diaper but I am afraid that when the educational officer visits the school and realizes he is not potty trained he may be required to transfer to a special needs school. But he is doing so well at the school he is at now. So, the pressure is on to get him somewhat potty trained in the next few weeks and overcome these little issues. Your article really helped me. Today he was in an underwear for the morning and afternoon time, he had one accident, I took him to the toilet every 30 minutes or so, he didn’t use the toilet (not that I could tell since he flushed it several times before I could check). I changed him back to diapers in the evening for his nap and plan to keep him in them during the night. He takes diazepam to relax his muscles at night so it seems unreasonable to expect him not to have an accident). I have no problem with him wearing diapers after the school day is over, I just want him to learn to regulate himself during the school day.
school can’t send him to another school for that. it is illegal report them to your state agency
search wright’s law.com
Very informative article on toilet training for cp children
This is incredibly helpful. My son is 2 and has cp and I will wait until he is ambulatory to begin training.