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Karen Riley, PhD
Toilet training can be a difficult and challenging experience for children and parents alike, and the challenges can be magnified for families of children with fragile X syndrome (FXS). It is not simply that toilet training is delayed for these individuals, but it often requires specific behavioral techniques that address the physical and behavioral phenotype of children with FXS.
A thorough review of the literature, and subsequent discussions with parents, reveals no perfect approach. It is important to use the available information and adapt it to the individual child. Guidelines for toilet training with typically developing children are appropriate to use as an initial resource. This information can be found in many books and online resources. However, children with FXS face challenges that differ from their typically developing peers, hence general guidelines need to be modified. This article will provide concrete guidelines to determine when and how to initiate the toilet training process. We will discuss why these children may experience difficulties and suggest behavioral strategies to use when things do not go smoothly.
Using age ranges and isolated strategies can create a dead end for parents who begin toilet training a child with FXS. In and of itself, an age range illustrates the variation in when children acquire certain skills. If a child falls outside that range, however, parents often feel anxious and guilty. Similar feelings arise when a list of suggestions is provided and nothing seems to work. A preferred method is to outline behavioral markers that indicate a child’s readiness, as well as a theoretical framework for difficulties children with FXS might experience with toilet training. This method removes the artificial timeline that can create frustration for parents and children, and opens the door to creative and individualized approaches that increase the likelihood of success.
It is crucial to initiate the process at the correct time. Behaviors that indicate a child’s readiness include:
This list illustrates that successful bathroom behavior is a complex task that involves all developmental areas. There are physical, cognitive, language, sensory, psychological and motoric requirements, all of which present difficulties for children with FXS. Given those requirements, it may seem a daunting task, but most children with FXS become successful with toilet training. The key is to provide support to address the child’s specific areas of weakness.
We know we cannot change the skills required for toileting, nor can we eliminate the challenges that face children with FXS. What we can do is recognize areas of concern and provide the child with additional resources to increase the likelihood of success. We should address toilet training in the same way we approach other learning and behavioral tasks of children with FXS. That means a holistic approach that addresses all developmental domains.
A holistic approach requires considering how FXS impacts each developmental domain, and then using adaptations and modifications that meet the individual child’s needs. We will review each developmental domain and consider the difficulties posed by FXS, along with suggestions to address these challenges.
Children with FXS can experience loose stools, constipation or both.
This may be caused by organic factors, limited diet and/or medication side effects. Loose stools can be difficult to control, and constipation can cause pain and discomfort. Both these conditions can inhibit toilet training. It is crucial to begin the process by addressing any physical issues.
Children with FXS have complicated sensory systems: Some are hypersensitive and exhibit sensory defensiveness while others are hyposensitive (low or diminished sensitivity). This can affect toilet training. Some children cannot tolerate the feel of a wet or messy diaper, while others have limited awareness.
It is important to remember that sensory integration issues are not limited to the tactile system. The bathroom itself can create a sensory overload, given its occasionally exotic smells, variety of lights, and sounds bouncing off tile and porcelain. Bathrooms are often small and sounds can echo. Awareness and understanding of your child’s reaction to sensory stimulation is key to creating an environment that is “sensory friendly.” Some points to consider:
We know that children with FXS have delays in language development. It is important to note that delays occur not only with expressive language, but receptive language as well, which includes vocabulary. Typically developing children learn the vocabulary associated with toileting through everyday exposure. Children with FXS need to be taught these concepts using a multimodal approach.
Learning a new skill can be a slow process for children with FXS, but they do learn and make consistent progress. The key is to present the information in a way that is meaningful to the child. Individuals with FXS have strong imitation skills, and they learn by observing and copying. So it is important to provide your child with as many opportunities as possible to learn through watching and imitating. This is an additional opportunity for creativity and individualization. Within this area it is crucial to use high interest items and modalities.
Children with FXS can exhibit delays in both fine and gross motor skills. To ensure success, try to reduce demands on these skills.
This is probably the most difficult aspect of the entire process.
Children with FXS can experience anxiety, but due to their limited language skills, we typically see only the ensuing avoidant behavior. This often leaves parents feeling frustrated and confused. It is best to try to decrease the anxiety, rather than try to guess what is causing it. Anxiety can be decreased by presenting the child with information about the situation in a way that is easily understood and will familiarize him with the new situation and the items that go with it.
Toilet training often comes at a time when the child is exerting his independence, which can result in some defiant behaviors. The best way to avoid oppositional behaviors is to present choices and to allow the child to have control over appropriate aspects of the task.
Many children with FXS have attention deficit hyperactivity disorder (ADHD). As a result they can have a difficult time sitting for even a few minutes.
The foregoing is not meant to be a cookbook solution to potty training. The review of the phenotypic characteristics of FXS is meant to encourage parents to view toilet training as a complicated process that should be approached in a holistic manner. The strategies should be used as examples to guide the development of individualized approaches and adaptations.
Another suggestion: Be patient, and balance persistence with a willingness to pull back for a time if things are not going well. Toilet training is a complicated process, and the child with FXS faces tough challenges. All children have accidents, so treat them gently. Be sure to move at your child’s pace and use encouragement and praise when he is successful.
Children with FXS respond well to social praise, so external reinforcers (food, stickers) are typically unnecessary. If you do use such reinforcers, remember to keep them simple. Creating charts and using token systems are typically too complicated for children at this stage in their development.
Finally, keep in mind that it is normal for any child, including those with fragile X syndrome, to regress or appear at times to lose toileting skills. This is a process that cannot be rushed. Pushing a child who is not developmentally ready for toilet training may slow or disrupt the process. If you are becoming too frustrated, stop and try again in a month or so.
There is nothing wrong with a parent taking a time-out to regroup, and it may well benefit your child so that both of you are better for having taken the break.
Karen Riley is a developmental specialist and assistant professor of education at the University of Denver.Resources and References