People who have read my blog are aware that I wrote a book on toilet training, The Practical Guide to Toilet Training Your Child With Low Muscle Tone (now available as a paperback on Amazon!).
The issue of kids who “hold it in” didn’t make it into the book, but perhaps it should have. Children that have problems with muscle tone or connective tissue integrity (or both) risk current and future issues with incontinence and UITs if they overstretch their bladder or bowel too far. We teach little girls to wipe front-to-back to prevent UTIs. We need to teach ALL children to avoid “holding it in” in the same manner that we discourage them from w-sitting. But for kids with EDS, this can affect their bodies 30-40 years from now.
I am specifically speaking here about kids with Ehlers Danlos Syndrome, Down Syndrome and all the other conditions that create pelvic weakness and muscle control issues. But even if your child has idiopathic low tone (meaning that there is no identified cause) this can still become a problem. If you have Volume one of The JointSmart Child: Living and Thriving With Hypermobility (if you don’t, scroll to the bottom to learn where to purchase it!), you know that understanding the sensory processing issues that accompany hypermobility are key to managing it correctly.
The effects of low tone and poor tissue integrity on toilet training are legion. Many of them are sensory-based, a situation that gets very little acknowledgment from pediatricians. These children simply don’t feel the pressure of their full bladder or even a full rectum with the same intensity or discomfort that other children experience. This is known as poor interoception, a sensory-based issue that is rarely discussed, even by parents and occupational therapists that are well versed in other sensory processing issues. The NIH has published a report that suggests that there are genes that influence urgency (the sense that your bladder is full and needs to be emptied). Gene damage appears to reduce interception and proprioception in joints, as well as reduce pain perception. This is fascinating, but it doesn’t solve the problem. At all.
For more on how sensory problems affect toilet training in general, see Why Low Muscle Tone Creates More Toilet Training Struggles for Toddlers (and Parents!). Kids that don’t accurately perceive fullness can be “camels” sometimes, holding it in with no urge to go, and have to be reminded to void. It can be more convenient for the busy child to keep playing rather than go to the bathroom, or it can save a shy child from the embarrassment of public bathrooms; she prefers to wait until she returns home to “go”. When they get trapped in a car on a trip, short or long, things get interesting. If this is YOUR child and it happens a lot, read my post Why Your Kid With hEDS Doesn’t Seem to Know They Need the Potty… Right Now! to make a better plan than yelling or crying.
This is not a good plan! The bladder is a muscle that can be overstretched in the same way the hip muscles loosen in children who “W-sit”. Don’t consistently overstretch muscles, and then expect them to work well. In addition, the ligaments that support the bladder are subject to the same sensory-based issues that affect other ligaments in the body: once stretched, they don’t bounce back. Holding urine instead of eliminating just stretches vulnerable ligaments out. A weak pelvic floor is nothing to ignore. Can You Prevent Pelvic Floor Issues in A Hypermobile Child?Sex is more of a challenge with a weak pelvic floor (for both male and female bodies), so don’t think that this is only about elimination. Ask older women who have had a few pregnancies how pelvic floor damage affects their lives every day.
Having difficulties with bowel movements? This can affect pelvic floor health too. Read Is Your Constipated Toddler Also Having Bladder Accidents? Here Are Three Possible Reasons Why to learn why you should be connecting both types of incontinence and taking action sooner rather than later.
For children with connective tissue disorders such as Ehlers-Danlos syndrome, another comorbidity (commonly occurring disorder) is interstitial cystitis (IC). What does that feel like? The pain of a bad urinary tract infection without any bacterial infection. Anything that irritates the walls of the bladder adds stress to fragile tissue. Emptying the bladder cannot prevent IC, but good bladder care can minimize tissue irritation. Not “holding it in” is part of good bladder care.
Overstretched stretch receptors in both the abdominal wall and in the bladder wall that should be telling a child with low tone that it is time to tinkle just don’t get enough stretch stimulation to do so. This is a loss of proprioceptive feedback, for those of you who want the medical terms for things. Every child with hypermobility has some degree of proprioceptive registration and discrimination deficit. It isn’t just joints, folks.
When should you teach a child not to hold it in? Right from the start. The time to prevent problems is when a child is developing toileting habits, not when problems have developed. One way to encourage children to use the bathroom is to make it optimally accessible. Being able to sit or stand with ease removes one roadblock to self-care success. Have a child under 5? Read Should You Install a Child-Sized Potty for Your Special Needs Child? and see if this affordable potty will help your child feel confident and independent right away!
So….an essential part of toileting education for children is when to head to the bathroom. If your child has low muscle tone or a connective tissue disorder that creates less sensory-based information for them, the easiest solution is a routine or a schedule. They use the bathroom whether they feel they need to or not. The older ones can notice how much they are voiding, and that tells them that they really did need to “go”. The little ones can be rewarded for good listening.
Understanding that the kidneys will fill up a child’s bladder after a large drink in about 35-45 minutes is helpful. But it can always be the right time to hit the bathroom shortly after a meal, before leaving the house, or when returning home. As long as it is routine and relatively frequent, it may not matter how a toileting schedule is created. Just make sure that as they grow up, they are told why this is important. A continent child may not believe that this is preventing accidents, but a child who has a history of embarrassing accidents in public may be your best student.
Many kids with hypermobility have bedwetting issues long after most kids are continent at night. It helps to explain to them why this may be an issue for them. Without that discussion, kids often assume that there is something inherently wrong with them as people. Don’t let your child’s self-esteem drop because they don’t understand why this is such a hard thing to accomplish. Understanding also makes them more willing to follow a toileting schedule or to focus on developing interoceptive awareness. If you are wondering if your child’s hypermobility has emotional and behavioral impact, read How Hypermobility Affects Self-Image, Behavior and Regulation in Children and Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior .
For little girls who are at a higher risk of UTIs, I tell parents to teach wiping after urination as a “pat-pat” rather than the standard recommendation of front-to-back wiping. Why? Because children aren’t really good at remember that awkward movement, and even if you are standing right their reminding her, she may just wipe back-to-front because that is easier and more natural. “Pat-pat” is an easy movement and reduces her risk of fecal contamination. I cannot tell you I have done hard research on this strategy reducing infections, but then, I have common sense. This is the smarter way for her to wipe. Want more info on wiping? Check out How To Teach Your Toddler To Wipe “Back There”
Maybe you have the opposite problem; a child who doesn’t know that they need to head to the bathroom until the last moment. Read For Kids Who Don’t Know They Need to “Go”? Tell Them to Stand Up for a simple strategy to increase sensory awareness and help them connect the dots in time to make it to the potty!
The good news in all of this? Perceiving sensory feedback can be improved. There are higher-tech solutions like biofeedback, but children can also become more aware of bladder fullness without tech. There are physical therapists that work on pelvic and core control, but some children will also do well with learning how to use Kegels ( contractions of the pelvic floor muscles surrounding the urethra) and other methods of building awareness of the internal sensations of fullness and urgency. Many occupational therapists use the Wilbarger Protocol for general proprioceptive awareness. If your child has Ehlers-Danlos Syndrome, please read Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome? for information on how to use this treatment technique wisely.
Looking for more toilet training information?
I wrote a book for you!
My book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, has readiness checklists that help you decide what skills to work on right away, and detailed strategies for every stage of training. I want children to become independent and confident, and for parents to feel good about their role in guiding kids to develop this important life skill.
If you are interested in purchasing The Practical Guide to Toilet Training Your Child With Low Muscle Tone, please visit my website, tranquil babies and click on “e-book” at the top ribbon. You can also buy it as a paperback on Amazon and as a printable e-book on your therapy source.
Need more than toilet training help?
The JointSmart Child: Living and Thriving With Hypermobility Volume One: The Early Years and Volume Two: The School Years are finally available! These books help parents with all the self-care challenges, helps them figure out the right chairs, bikes, sports and even pencils, and learn the easiest way to teach their child to get dressed and stay safe on the playground. Both books are packed with strategies that help kids and therapists as well, plus checklists to improve communication within the family, with teachers, and even with a child’s doctors.
Both books are unique resources that empower parents and inform therapists! Read more about Volume One here: The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today! and Volume Two here: Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!