Toileting Concepts for Children with Disabilities
Lori Potts, PT discusses toileting strategies for children with disabilities and the role of adaptive equipment in toileting.
Introduction
Welcome to today’s presentation on the topic of Toileting Concepts for Children with Disabilities.
Overview
First we’ll discuss the challenges to address when initiating toileting for children with disabilities. Then we’ll look at the importance of positioning for optimal toileting; and finally the importance of a daily scheduled toileting routine. This presentation is just an introduction to this topic. A number of the slides will offer further references and resources for you to learn more.
For many parents and teachers of children with special needs, toilet training seems like an unattainable goal. Here’s an inspirational quote that I first heard from one of my colleagues here at Rifton. “Regardless of your ability or disability, we all face challenges in life. One can see them as barriers or as hurdles. Barriers are made to hold people back, hurdles are made to jump over; the choice is yours.”
So let's look at some common hurdles for toileting, and how these can be overcome. Each child has unique health issues, physical disabilities or problems, such as recurring constipation. Others may display emotional or behavioral challenges, as well as communication barriers or cognitive and learning disabilities. And the parents and teachers may experience frustration in coping with a child’s accidents. This in turn can feed into a cycle of unhappiness surrounding the topic of toileting. Fortunately these common hurdles can be overcome.
Let’s look at these five effective solutions toward successful toileting. Taking each of these steps with guidance from a health professional can positively impact constipation, adverse behaviors or anxieties; and promote learning and communication; and help overcome frustrations.
Medical Advice
Medical advice from a physician or specialist is essential. It’s so important to first rule out or resolve any significant medical problems, such as diarrhea, constipation or urinary tract or bowel infections. Other health conditions include celiac disease or even bowel or bladder defects, so you’d want to address that first. Also fully understanding the possible side effects of the medications that the child is taking can be important. So certainly medications would be reviewed with a child’s doctor or a specialist.
Seeking out the professional guidance of an occupational or physical therapist is also very important. A therapist can offer positioning advice, using an adaptive toilet seat for a child who is unable to sit on the toilet independently. Transfer techniques for getting on and off the toilet seat are important to know as well. An occupational therapist or behavior or speech therapist can offer valuable advice for establishing a consistent routine and give guidance for communication or behavioral challenges.
Constipation
Constipation is known to be a common problem for children and adults with developmental disabilities such as cerebral palsy. Constipation is clinically defined as fewer than three bowel movements in a week. So if your child has not passed stool for three days, he or she is very likely to be constipated. The longer that the stool remains in the intestine, the more moisture is extracted from it by the physiological function; and so the stool itself becomes harder over time, not softer, making passage even more difficult.
Because cerebral palsy is a neurological disorder, the nerves that cause the muscles in the colon and rectum to contract and move stools through the intestines may be affected. Or the child may not have the sensation or the urge to defecate, and then the stool accumulates. Ignoring the urge to go makes it harder to go later. In addition, children with cerebral palsy may have low muscle tone or muscle spasticity, and the bodily function of defecation is controlled by muscles of the abdomen and pelvic floor; so children with muscle disorders may not have this coordinated movement, and may have periodic bouts of constipation or infrequent or difficult bowel movements. As well, medications commonly prescribed to children with cerebral palsy – such as for seizures or anti-spasticity treatment, or medications for drooling – can also contribute to constipation.
So the first step is a full medical evaluation by a specialist in bowel issues. If the condition is related to the motility of the walls of the intestine or due to functioning of the sphincters, then more medical advice is needed beyond a simple change in diet. Functional constipation, which is also known as chronic idiopathic constipation, is constipation that does not have a physical or anatomical or physiologic cause. A child may have lumpy or hard stools or has to necessarily strain to have bowel movements, and this occurring less than three times a week; and constipation is considered chronic if symptoms such as this continue for three months or more.
This type of constipation may be more responsive to a change in diet as part of the overall intervention. So normalization of fiber intake is recommended, even though there is a lack of high quality research on this for our population. High fiber foods include beans, vegetables, fruits, whole grain cereals and bran. And ideally a child would then eat fewer foods with low amounts of fiber such as processed foods or dairy products and meats. Examples are cheeses or white bread, bagels. Drinking plenty of fluids is encouraged.
Although the available research is limited, studies indicate that supported standing and walking may improve the frequency of bowel movements or reduce the necessity of inducing bowel movements. So including upright positioning and activity as part of a comprehensive management plan may help reduce constipation. A feeling of instability may be one of the main reasons that children with disabilities resist sitting on the toilet. Often a simple seat insert and a foot stool are all that is needed to help the child to comfortably maintain balance.
Success
Other children may need an adaptive toilet seat to provide that needed stability and positioning for success. It’s important to set up a quiet bathroom environment without distractions, noises or smells that may cause discomfort or anxiety. Without interruption, the child can give the task their attention and be successful. A child may need music, a storybook or a toy to encourage them to remain sitting for the length of time needed for toileting. And working with an occupational or behavioral therapist can be helpful to incorporate strategies to more gradually introduce the toileting process so that it is perceived as safe and enjoyable for the child.
The more consistent the toilet routine, the better – between parents, between caregivers. This would include the bathroom environment, the sequence of the toileting routine and tasks, the words used or the picture symbols in sequence. You will be amazed at how repetition and familiarity can promote a child’s learning. It’s another form of stability.
Communication
Children with disabilities may have difficulty communicating, and this can lead to adverse behavior. A child may lack receptive communication and may not understand an adult’s instructions about the idea or process of using the toilet; or a child simply may not have the ability to interpret their body sensations to understand the need to use the toilet. They may lack awareness of “I’m wet” and be unable to communicate the need to use the toilet before having the accident. Speech therapists and behavioral specialists can offer methods that help shape toileting behavior and enable communication. These strategies will be unique to each child. When parents and caregivers all use the same simple and clear words or phrases, then the child will be more likely to understand the expectations for the step-by-step toileting process, and pictures or symbols can be effective for many children. For others, hand gestures communicate best.
In some cases, the parent or caregiver will direct the child to the toilet, and through the toileting routine, with gentle physical guidance. And once a child becomes more aware of being wet or soiled, he or she may want to void in the toilet to stay dry. A non-verbal child may eye point in the direction of the toilet or become agitated and pull at their clothing or cry, or even walk or maneuver their wheelchair to the bathroom. And through observation, parents and teachers may learn to interpret this body language and the non-verbal cues that indicate the need to go. And then eventually using specific communication strategies, the child may learn to request to use the toilet.
Provide Praise
Provide praise. Positive reinforcement and praise are great teachers. Think about how best to reward the child’s success in staying dry between toileting episodes, and for voiding in the toilet; and be patient. Look at wetting or soiling accidents as a positive teaching opportunity. Simply move the child to the bathroom and include a toilet sitting time as part of the cleanup routine. Keep the interactions calm, neutral, simple. While there is no praise or reward, it is also not a time for frustration or punishment. It’s another positive teaching opportunity to practice the toileting routine and be ready to persevere.
Importantly, allow time. A child with special needs probably will not perform immediately upon being seated on the toilet, so the child may remain seated for up to ten or fifteen minutes, depending on their comfort level with prolonged sitting. Definitely work with a healthcare professional or behavioral specialist to decide what is best. Realize that it is very unlikely that a child with special needs will fully understand or perform the toileting process in a matter of weeks or months. In many cases, successful toileting or total incontinence may only be achieved after years.
Children with special needs have undeniable developmental challenges, so it’s important for us to keep our expectations realistic. However there are so many success stories with children that it is absolutely worth a try.
Optimal Positioning
Now we’ll discuss the optimal toileting position in the western world. Sitting on a raised toilet seat is considered normal, but in actual fact, before the middle of the nineteenth century, chair-like toilets were reserved for royalty, for people with disabilities. Everyone else used the squatting posture to perform their bodily functions; and in many areas of the world today, people still use this natural method. Remarkably, in cultures that practice this position, there is significantly less incidence of constipation and bowel diseases in those geographic areas. According to research, sitting as though on a chair or throne is not the best. Instead the squatting posture is recommended, because this relaxes the puborectalis muscle, straightens the rectum, and works with gravity for a faster, easier and more complete elimination.
Without optimal positioning, children with disabilities may not be able to completely empty their bowel and bladder, which puts them at risk for urinary tract infections, constipation and other complications. Good positioning helps the child relax for more complete voiding. We want them comfortably seated in a forward-leaning posture, with good back support, and support in front. This forward position of the trunk will facilitate better head and trunk control and stability, as well as increase the flexion at the hips. The legs are positioned so the knees are slightly higher than the hips, as this most closely mimics the natural squatting position. Then ideally, there is a firm base of support so the feet are planted on the floor or footboard.
For children with extreme extensor tone or poor postural control, some additional tilt-in-space, or seat to back angle adjustments, or other supports can be provided – to accommodate deformities, or adjust for variable muscle tone or a lack of postural control. Optimal positioning ensures that the child is stable, comfortable, and positioned in the best possible way for effective elimination.
Effective Elimination
Children with cerebral palsy may be fearful when placed on a toilet because their balance is unreliable or because they cannot sit comfortably. If children are continuously fighting to maintain an upright position on the toilet, they will be unable to concentrate on the toileting task at hand. Because of their physical disabilities, children simply will take longer to establish their position on the toilet, relax, and then understand what is expected of them.
Therapists working in school-based settings have reported that children with disabilities may sit anywhere from five to forty-five minutes in order to fully empty their bowel and bladder. Obviously with extended sessions like this, comfort is key. This comfort is provided with padding on the weight-bearing surfaces, and with contoured supports. As we see here with the adapted toilet seat, the child can sit securely with appropriate buttock support, foot support, and with hips comfortably flexed and abducted – and then successfully void. Next we’ll watch a pre-recorded five-minute video explaining positioning to achieve the optimal toileting position.
Positioning
Today we want to talk about positioning when toileting. This can be very important for children and young adults with disabilities to help them be successful when they are on the toilet. Here in our western culture, we typically have regular toilets; but research is actually showing that the squatting position is better and more effective for successful toileting. What happens when we squat is that the position of the pelvic floor muscles changes, and our rectum is actually better aligned to allow gravity to help us with that process of the bowel movement. And that’s how we want to set up our children with disabilities, so that they can be more successful in toileting.
So let’s think about positioning children on the toilet in such a way that we mimic that squatting position. For many children, all they need is a toilet seat insert to give them a little bit more stability and security on the toilet. This might sit right on the toilet seat, or you might flip the seat up and set it right on the toilet bowl. But that will allow them to be in a relaxed sitting position and void. By placing a stool in front of the toilet, we can make sure that their knees are raised relative to their hips. The higher their knees, the more hip flexion. We can also encourage the child to lean through their forearms, and that will mimic the squatting position.
Now for a child with more significant disabilities, they may need an adaptive toilet seat for support. And we can look at how we position the product, again to help promote that squat. For one, we can alter the amount of tilt in the seat. Find the position that allows the child to relax while they’re sitting, and then intentionally bring the backrest angle forward. And you can see the little marking on the side where it will click into a forward-leaning position. We can also shorten the seat depth just for the toilet because that will bring their knees a little forward; and then we can raise the footrest, again to jack their knees a little higher than their hips. And we can change the angle of the footboard to find what’s most suitable for that child. Using the anterior tray then gives the child a secure position for leaning forward. So really this then mimics that squatting position. And if you do have the tilt-in-space, you can adjust, that because the hip and knee angle will remain the same regardless of the tilt. So that will find the position that’s going to be comfortable for the child.
In some cases, the toilet seat is used directly on the toilet itself or rolled over an actual toilet. So besides getting the toilet seat itself in the optimal toilet position, you would also want to consider the accessories that you use to make sure that the child is secure, stable and comfortable. For example we have the hip guides that attach right on the armrests, and those can achieve the right seat width for the child. We have lower extremity supports, including an abductor to separate the knees, and then a deflector that can be used in conjunction with the abductor, as well as the splash guard option. For the trunk and the head, there is the butterfly harness that secures across the seat belt, and the adjustable headrest as well. There are more accessories besides this. Please check out the website www.rifton.com for the Hygiene & Toileting System and learn about the positioning options. Our customer service is ready to help you, and all the best as you toilet your child with special needs.
Teacher Story
I’d like to share a story that was sent to Rifton by a special education teacher.
“We love the HTS in our classroom. I have been using it with a student who has spastic cerebral palsy, and for whom other toileting systems just weren’t working. We had heavily modified a more basic adaptive toilet and were considering our efforts to be the best it could get for this student. She was voiding in the toilet about 25% of the time and rarely having a bowel movement at school, but we were so wrong.
On the very first day the new Rifton HTS arrived in our classroom, we were able to set it up to suit this student. Setup was so quick that we were ready to use it for our morning toileting routine. We transferred the student to the HTS using the tilt-in-space feature, and it was much easier to get her onto the seat and comfortably situated. She sat up straighter and was happier on this adapted toilet than on any of the other ones we had tried. But more impressive than how she looked when using the HTS, this student actually voided in the toilet, number one and number two, on that first day. During the next two weeks, she continued to have bowel movements at every scheduled bathroom break; and because of this, her parents and all of us teachers are happy to report that she has been more comfortable and happier throughout the day.
In addition, after a couple of weeks of success using the HTS, this student’s bathroom-related communication skills have also improved. She is mostly non-verbal but has a clear yes-no response, and can say some words when her body is optimally positioned. After two weeks of using the HTS, she started asking for more bathroom breaks when staff members would prompt her with a question; and she voids 100% of the time when she has been asked if she needs to go and answers yes. Also, because her body is so well supported in the HTS, she has been able to let us know that she is finished going to the bathroom. She does this by clearly yelling “I’m finished!” The strides she has made in a very short time are almost unbelievable.”
Scheduled Opportunities
So this brings us to our next discussion, scheduled opportunities. Linda Bidabe is the founder of the non-profit organization, MOVE™ (Mobility Opportunities Via Education). She was a special education teacher who held high expectations for children with significant physical disabilities. She passed away in October of 2017, but her legacy lives on. She said, “Children who cannot communicate the need to be taken to the bathroom can still participate in the toileting routine, and may achieve continence.”
If we think about toileting, successful continence demands both voiding into the toilet, but also remaining dry in between the toileting episodes. And there are two methods that we’ll discuss today that work toward achieving continence. One method we’ll call “scheduled sitting” and the other, “high probability schedule.” Of course there are any number of resources available in the area of toileting with children with special needs. And while they may not use these exact names for the methods, you will notice that almost any approach will choose to achieve continence training in one of these two ways.
Scheduled sitting is the opportunity to void, and this is MOVE’s approach. Linda Bidabe believed that it is an inherent dignity for each individual to be provided the opportunity to void. Whether they do or not, we want to give them that chance; and it is also sitting practice. So we plan a toileting schedule that is very sustainable and manageable by the school staff or by the parents, and then we adhere to those times and keep a record.
Sample Record Keeping Forms
The next slides will show sample record-keeping forms. This is the record-keeping form from MOVE. You’ll see medical terms here – “no void,” “urine” or “stool.” And that would be documented as “before the toilet,” meaning in the pamper; or “into the toilet,” which may be into the pan of an adapted toileting system. The space for notes makes the valid point that whether or not the individual successfully voids into the toilet, this scheduled opportunity still provides a chance for hygiene care – to check for skin breakdown, give them a chance to air out – plus to build on the motor skills of the child and their participation in the steps of toileting. Notes on any bladder or bowel health issues or on their skills learning progress can be documented here as well.
This is a screenshot showing the top half of another form. This one can be downloaded from the Rifton blog article on toileting. The toilet time, along with the parent or caregiver initials, is in the first column. And because you can view the full week as a set of columns, this particular form allows you to see the day-by-day voiding patterns that may emerge with the daily scheduled time. With scheduled sits, we are surprised to see how many children, even with physical and cognitive delay, will get into the rhythm of the schedule and will actually voluntarily hold their urine. And they will prefer to do it in the toilet rather than in the pamper because it is more comfortable for them that way.
Now we’ll compare this to a high probability schedule, where we focus on remaining dry in between toileting episodes. This approach may be more appropriate for ambulatory children who are more mildly delayed, such as children with down syndrome or children with autism. And what we do here is we simply check them every half hour to find out if they are wet or dry. We do this before we even begin to sit them on a potty or toilet at all. The purpose is to find out the most likely times when the child voids; and then we can set up a schedule based on these predictions.
This form shows an example of doing this data collection during school hours over the five days of the school week. We’re checking every half hour and documenting – are they dry are they wet or are they soiled? And we’ll do this for a week or two or more until we can establish a pattern. And we’ll specifically look for trends or patterns of dry diapers and trends in the times of urination or defecation. And when patterns are identified, we can see how they correlate with the food or fluid intake, because voiding may relate with when their mealtime is and when their fluid intake is. So this data collection is important for determining those high probability times of voiding. And using this information, we will then create a schedule.
So here’s an example of a high probability toilet schedule. And the scheduled times are put in the first column, and we can see these more user-friendly terms of “wet,” “dry” or “soiled” for the pamper. And then we want to document toilet success, and that may be on a potty or toilet depending on the age or the ability of the child – or using an adaptive toileting system. And the terms here for the toilet success are “urination” and “bowel movement,” or “no elimination” in the case of no success. So this offers a clear, simple chart that the team can review after an interval of time and consider whether or not the schedule times might need adjusting, either to reduce the number of accidents or to adjust as the child is able to hold their urine for longer.
This is a screenshot showing the top half of another form, and this one can be downloaded from the Rifton blog article on toileting. And here the toilet time along with the parent or caregiver initials is in the first column. And when used as an initial data collection form, the times can be written in at every half hour. And notice how this form allows you to be specific in terms of the child’s food and drink intake to see whether or not that has any impact on their voiding patterns.
So the value of this record chart is that we can see how long the child usually stays dry, or at what times he or she typically urinates or performs a bowel movement. For example, perhaps he always does number two about half an hour after lunch. Or the record chart may indicate that a little girl consistently is dry at 9:30 am but consistently wet at 10:00 am; so a good time to have her sit on the toilet is right before 10:00 am.
So this initial record chart is also a chance to assess for the child’s toileting readiness. Does he or she stay dry for thirty minutes up to two hours, and does the child seem aware of being wet or soiled, or show any particular fears or interests related to the bathroom? And that comments column allows you to document this. So by observing and assessing the child’s beginning understanding of the toileting process, we can then decide on an appropriate schedule as a goal to work toward as a starting point. And we can then use this same blank form to schedule those high probability times, and now put those specific, specified, scheduled times in the first column – of course realizing that complete continence and independence in toileting may be many, many steps down the road.
Each of the steps toward independent toileting is a goal and achievement in itself. Eating is a natural stimulant for the bowels, so having meals at regular times can be very helpful in supporting a toileting schedule, as the child may even develop routine bowel habits. So besides scheduled opportunities to toilet, keeping regular meal mealtimes will help your child’s stomach, bowels and bladder to be empty and full at regular intervals. So having a child sit on the toilet for about ten minutes at about the same time each day, and ideally after a meal, can make a big difference. Over time it may be possible to predict a child’s bowel performance based on the timing after mealtime.
So hopefully this presentation has given you a good starting point and further resources to explore. All the best and thank you for your interest and attention on this topic of toileting concepts for children with disabilities.
