Toilet training continues to be an important issue for families who have children with Fragile X syndrome (FXS). The NFXF website has several articles on the topic of toilet training. They are mostly focused on introducing toilet training activities to younger children. It has been assumed that children of all ages would benefit from the same strategies, and if they were not initially successful with them, they may never make progress in toilet training. Experience has shown these assumptions to be inaccurate. There is hope for older children (from about age eight and up), but they require a different approach to toilet training. This article addresses strategies found to be most successful in this population.
It is important to recognize that your child is not “lazy” or “bad” for not being toilet trained. If he has never used the toilet consistently, there are reasons. Perhaps it is an attention issue, or he has not been able to attend to physical sensations at the same time as intellectual activities. Perhaps he retains negative associations with toilet training from past attempts. Perhaps he had to sit too long without feeling successful. This approach is a “do over” for you and your child. It is designed to be less stressful for all involved, to teach that trips to the bathroom can be pleasant and that they occur regularly.
Before you begin to employ this “do over” strategy, you should note any medical conditions in your child that may affect toileting behavior. Medication can affect bowels, as well as fluid consumption and appetite. By completing a log that we will detail below, you will better understand whether you should consult with your child’s doctor to address loose bowels, constipation or both.
It is also important to note your child’s fluid intake pattern. Whenever children drink a large quantity, they typically need to use the bathroom within about 15-30 minutes. Some children appear to be continuously wet. Review of intake patterns for these children often reveal a “grazing” pattern, in which they drink small amounts frequently through the day, rather than large amounts in a more consolidated drinking pattern. The latter leads to more predictable elimination. If your child is habitually thirsty and/or cannot remain dry for at least 60 to 90 minutes at a time, make an appointment to discuss the matter with his doctor.
Once you have come to terms with the past and addressed any medical concerns that may affect toilet training, you’ll be ready to begin your “do over.”
Older children have often developed maladaptive toileting patterns, including but not limited to, dependency on diapers or pull-ups to cue elimination. This is particularly applicable to bowel training. Older children with FXS who are not toilet trained are often not bothered by wet or soiled clothing. They have practiced a pattern of eliminating in diapers or pull-ups for many years, and this pattern can be hard to disrupt. They, and perhaps more importantly, their parents, have often become discouraged, based on lack of progress with traditional approaches, and thus settle into a routine that does not include regular trips to the bathroom.
There is no need to accept this status quo. Older children can benefit from an approach that takes these patterns into consideration and turns them around. It begins by embedding a routine of “practicing” using the bathroom, before there is any emphasis on successful elimination. During the “practice,” the child is exposed to every step in the toileting sequence, without specific pressure to perform. This desensitizes the child to use of the bathroom and decreases performance anxiety. It also teaches compliance and allows an opportunity for praise. Families choose a practice time that has a natural flow for family life, perhaps first thing in the morning or right before a bath.
Previous articles have outlined pre-readiness skills such as the abilities to: perceive wetness, communicate the need to use the bathroom, recognize a full bladder, get to the bathroom and sit on the toilet independently, pull pants up/down and sit in the same spot for several minutes. Waiting for these skills to emerge for older children does not appear practical or necessary.
Please check child every hour if they are in pull-ups or diapers. Note every incident of toileting on this log. If you check but diaper is dry, just record the time. Please list time of food (F) or drinks (D) as well. Collect data for two weeks before starting toiling program.
For older children, the emphasis should be on scheduled visits to the bathroom rather than insisting on their independence and initiation. As a parent, rather than waiting patiently for your child to initiate the process, you instead get her to respond to a cue. This behavioral approach will, however, require you to do some data collection to promote success.
Collecting Your Data
Before embarking upon toilet training, you’ll need to keep a log for at least one week. (See above for example.) This will show you the pattern and frequency of your child’s urination and defecation. It also establishes how long she is able to “hold” urine before needing to void. A sample log cues you to check for wet/ dry every hour so that a clear pattern is established. The log includes the date and time a child urinates or defecates (and whether it is in diaper or toilet). It also tracks times of snacks and quantity of drinks. As parents check the child for “wet/dry,” they also begin to reinforce success in avoiding elimination in the diaper – “Good, you’re dry.” At this point, however, there should be no negative messages for a soiled or wet diaper. Rather, simply note, “Oh, you are wet/ soiled; let’s change your diaper.”
After reviewing the data, parents or other caregivers initiate the following steps.
- Make sure the bathroom is accessible and that the child is able to place feet flat on the floor while on the toilet.
- Stock the bathroom with “special” toys and books that “live” only in the bathroom. A shelf of toys and treats that can be seen, but not accessed, unless a child is on the potty is very powerful and helps maintain motivation for sitting.
- Dress the child in easy on/off clothing. Sweats, leggings or shorts help make toileting fast and easy. Underwear is not necessary to experience “wet.” Use of pull-ups allows a parent to remain more patient with this process. Try to decrease “pressure” to perform. Anxiety can hinder toilet training in this population.
- Create a picture schedule.
- Encourage the child to visit the toilet when the data shows this is a likely time for success.
- Encourage the child to sit on the toilet for two to five minutes. This is typically long enough to relax. If this seems too long, initially keep the trip shorter and then build in materials or activities over time that help extend the child’s time on the toilet (if required).
- If the child properly voids, provide specific reinforcement! Food treats, praise, a special story time…use whatever you feel will encourage compliance and motivation.
- Record your information on the toileting chart. Document both successes and accidents.
- If the child has not eliminated in the toilet or pull-up, you may wish to encourage a trip again in 30 minutes (if he is still dry).
- Continue to check for wet or dry once per hour, and record the information on the log. The data that quickly accumulates should begin to reveal a pattern that directs the timing of subsequent trips to the bathroom.
Anxiety or sensory sensitivities to smell, sounds or touch may affect a child’s ability to participate in this process. First, determine which if any of these factors may be causing an issue. Behavioral approaches for desensitization to fears of the bathroom can help in this regard.
A potty book social story that includes pictures of various toilets and the toileting sequence can help a child learn and grow comfortable with the sequence of necessary skills. Caregivers can help the child practice parts of the sequence with a doll or stuffed animal.
Watching videos can also be helpful. It may also be useful to practice sitting on the toilet (seat down, clothes on) so that the child is gradually introduced to the toilet in a way that feels safe.
Finally, extended sitting on the toilet can cause frustration and be counterproductive so get a feel for the child’s tolerance and limit the time spent on the toilet accordingly.
These specific strategies have been useful in teaching successful toileting skills to older children with FXS. For some children this schedule-based approach will generalize into a self-initiated pattern that no longer requires parental oversight or adherence to a specific schedule. For others, successful elimination will continue to require a scheduled routine. In either case, the important point is that a highly functional skill has been mastered, with countless benefits that will pay off greatly for your child and everyone involved in his or her care. It’s a skill worthy of celebration.