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Tales of Toilet Training for Kids with Special Needs

Toilet training any child can be frustrating. The number of light-up musical potties, DVDs devoted to the task and sticker charts available for purchase indicate parents’ desperation for success. Toilet training a child with a disability can be a whole new ballgame, and depending on the disability, it requires patience, endurance and creativity. In our case, it even involved a custom toilet specific to my son’s size made with love by Grandpa.

Experts agree that for any child to begin toilet training, they need to appear ready. In the United States, most parents train their child between the ages of 18 months and 3 years of age; for children with disabilities, this can be later.

According to Maria Wheeler, M.Ed., a child might be ready if he or she acts differently when wet or soiled, appears interested in bathroom-related tasks or expresses interest when seeing other people involved in activities related to toileting. There are also physiological factors to consider. These include whether the child can stay dry for periods of time during wakefulness and naps. If your child is unable to stay dry for more than one or two hours, consider restricting drinks and food intake to meals and designated snack times.

Is the child physically capable of sitting on the toilet? If not, an occupational therapist is a great resource. For children with sensory issues, the toilet itself might cause anxiety or fear. Some children don’t like the sensation of sitting on the toilet, whether it’s too high, too hard or for reasons we may never know. Stores carry many options for this problem – as mentioned earlier, the choices of musical light-up potties are almost shocking. You can also place a variety of lids directly onto your home toilet.

For kids who don’t like having their feet off the ground, purchasing a wide step stool for your child’s feet or installing handrails might help. My son has apraxia, which greatly affects his verbal and motor coordination. He has autism as well, though he is very high-functioning. We began potty training when he was about 3, and four years later, we are still working on it. My son was too tall for the light-up potties but was anxious about our home toilet. Luckily, his grandfather is a woodworker, and we took specific measurements to make sure the height, width and depth were perfectly suited for him.

When you, your pediatrician, behavioral therapist, occupational therapist, special and regular education teacher, speech teacher, the Easter Bunny and whoever else you have working with your family determines it is time to begin toilet training, it’s important to remember that every child is unique, and that any program you choose might require tweaking. Sharing the toilet-training plan with the therapy team is a good idea so training can continue in different environments. Some families put toilet-training objectives on the Individualized Education Plan at school. While trial and error is a part of this game, so is consistency. Determine the best path based on your child, and stay with that plan until there is a specific reason for making a change.

Many experts, such as Diana Browning Wright, M.S., L.E.P., encourage parents to begin teaching their child Habit Training, a time-consuming process that can be highly effective in helping a child eliminate on the toilet at specific times of the day. While some parents or therapists have slight variations on Habit Training, it usually follows the same format.

It starts with learning your child’s voiding schedule, including determining the approximate time of their bladder or bowel movements. Marking this data on a chart will help you see patterns you might otherwise not notice. Noting fluid and food intake on this chart may be helpful too. The goal is to determine when they need to use the bathroom and to get them on the toilet before they need to go.

Of course, this is easier said than done. Just ask Dallas mom Bonah Kono, mother of 8-year-old Noah. Noah is a child with autism and Down syndrome, and wasn’t particularly motivated to use the potty. When the time came that Kono and Lindsey Terveen, Noah’s behavioral therapist, believed Noah was ready to train, they began with having a “dry pants check” about every five minutes. While every five minutes might seem extreme, Noah was not holding his urine and voided often in small amounts. All of these checks were documented.

Clearly, the commitment to this part of training is intense. Kono understands this all too well, as she remembers spending the two weeks of Christmas break documenting and checking repeatedly. Part of Noah’s success was involving Noah in the clean-up process when an accident occurred.

“I think this was the toughest part, trying to convince Noah that using the potty was better than going in his diaper, because it really wasn’t better for him,” Kono says. “He knew it was much easier to use the diaper. So we had to create the artificial hardship of having accidents … We had to make the accidents so inconvenient for him that he was then motivated to not have accidents.”

Kono believes this part of the training was vital, as it resulted in either good consequences (like the use of an iPad) or a negative consequence (having to change himself). Over time Noah was able to control his bladder.

For busy families, Habit Training can feel like a monumental task, and though some children may need numerous dry checks throughout the day, Wheeler lets parents know this isn’t always the case. She advises parents to keep toilet training as relaxed as possible. Children may not be able to eliminate at scheduled times if they feel pressure, and it might lead to frustration.

When taking your child to the bathroom, it is important to keep toys and any other distractions out of the room. When we initially started getting my son acquainted with sitting on the potty and becoming comfortable, we brought in his favorite video game or a special book to read. Once he no longer seemed upset about sitting on the potty, I assumed if he just sat there long enough, something would come out. We were quickly told by his therapist to cease that practice, since he needed to know the toilet had a purpose, and it wasn’t an extension of the playroom.

Still, the desperate mom in me was hopeful, and sometimes I feared that this seemingly impossible task would get the better of me. Knowing that he only moved his bowels at night, I’d place my exhausted little boy on the toilet and rub his back. Once he even fell asleep while sitting on the potty – my legs and back ached while I held him up. I was so excited, thinking all that needed to happen was for him to “accidentally” sleep-poop on the toilet, and he’d realize how easy it was! That dream soon vanished when he woke up minutes later, crying about the “needles” he had in his legs from sitting on the toilet for so long.

Instead, experts encourage sitting for moments at a time, allowing the child to get up to stretch and then returning to the potty till voiding occurs. Wheeler has found success with many children during focused toilet training by offering a drink and allowing for 5–10 minutes of active play – including jumping, running and climbing – before placing the child on the toilet.

Another key point Wheeler makes is to use the phrase “It’s time to potty,” or “The clock says it’s time to potty.” By making it about the time, the child does not feel you are trying to control them. And if the child does void in the bathroom, but not on the toilet, this should be considered a success. This will help encourage bathroom behavior.

An added note for boys, Wheeler says, is that if they are not bowel trained, begin with them sitting for both. Not only does it keep boys from getting confused, but it will make it easier when they need to poop.

It’s possible that regression and accidents will occur. In the case of accidents, watch for signs preceding the accident. Does your child “zone out” or grab themselves? It might take time for children to initiate going on their own, so it is important to continue working on communicating the need to go.

In addition to behavioral therapy, children with various disabilities might need extra help and practice with other bathroom-related behaviors, such as undressing, wiping and washing hands. In cases like this, an occupational therapist can offer suggestions such as hand-over-hand guided practice as well as games to develop motor skills.

Once daytime training is successful, nighttime training can begin. For some of us, this might be more challenging, as crossing this hurdle can mean sacrificing precious sleep.

And sleep, Wheeler emphasizes, could be the problem. For a mother who begins each day with at least one load of laundry, this was surprising and exciting to hear. Wheeler suggests that focusing on quality sleep might be a piece to the potty puzzle. Most children who have poor sleep habits become so relaxed when they finally do manage to drift off to sleep that they won’t wake up for voiding. Your child might have more success if you sleep-train first, then resume toilet training.

Wheeler advises that parents cut off fluid intake 2–3 hours before bedtime and avoid caffeine after 2pm. Be sure your child uses the bathroom just before going to bed, and check periodically throughout the night. If, after you turn in for the night, bedwetting continues, it’s time to bring out the alarm for those middle-of-the-night checks.

For children who usually get out of bed regularly or wake up often, use this time to enforce using the bathroom. It is also important to teach your child to use the bathroom immediately upon waking each day.

Wright suggests that if you find your child has wet the bed before you get to him or her, allow them to keep sleeping, or change the sheets calmly without speaking. If the child has success in the bathroom, positive reinforcements are still a good idea, but keep them low-key. Encourage going to bed as quickly and efficiently as possible. While setting alarms and waking up can be difficult, it is necessary to break the nighttime accident pattern.

Kono understands that some things come easily to her son, other things not so much. Toilet training is one of those things that might take a little bit longer, but she’s learned to be patient and celebrate how far Noah has come.

“We will be able to get to our goal soon,” she says. “I know it’ll happen, and me fretting about how long it takes won’t help at all.”

Good advice from a mother who knows!