Toilet Training an Older Child
I am wildly passionate about kids being toilet trained if it is a possibility. I never dreamed I would be a passionate advocate for toilet training. But, here I am. Lack of toileting skills is one functional IEP skill that really carries a serious stigma for our kids. It’s very ostracizing for an older child when they lack independent toilet skills.
It is one of the ways we can help our kids maintain dignity. Nothing makes you the target of bullying faster than a bathroom accident.
And, speaking of dignity, let’s talk about language for a minute. Please use the word “toilet” or “bathroom” when discussing this issue at IEP meetings or any place else. Tweens and teens do not go “potty.” They go to the bathroom. Infantilizing our kids is another example of ableism.
However, making that happen is often a different story. Read further for tips on getting toileting or potty training added to your IEP. Then at the bottom, I have included a sample toilet training schedule or protocol. It’s downloadable so you can print it and adapt it to your disabled child’s needs.
Let’s start at the beginning.
Why Some Older Kids are not Toilet Trained
Before we get into looking at examples of IEP goals, we have to make the assumption that this toilet training issue is not a medical one. Have your child checked by their doctor for any possible kidney or bladder issues, anything related to incontinence.
There are many reasons why some older kids are not toilet trained. And, it’s not as rare as you might think. It’s also not just kids with autism. It’s important for the IEP team to look at the whole issue, because you cannot expect a child to achieve a goal if they do not have the subsets of skills to achieve it. For example:
- Functional Communication: Does the child have a functional way to communicate a desire to use the restroom?
- Motor Planning: Does the child have the motor planning skills to recognize that he/she has to use the restroom, and then either go or ask to go?
- Interoception: Many kids with autism and other disabilities lack interoception. This means having a sense of what is going on inside the body. Such as, knowing when you feel hungry or when you feel the urge to urinate or deficate or vomit. Some kids may truly not recognize these internal feelings.
- Lack of Fine or Gross Motor Skills: Can the child get to the bathroom, open the door, maneuver clothing/pull bottoms down, etc.?
- Cannot sequence/plan events: When you feel a full bladder and can get yourself to the bathroom and go, it’s a skill we take for granted. But if you break down the entire sequence into task analysis, you’ll see that it’s dozens of other skills chained together. You have to have each link before you can make the chain of events.
Quick task analysis: Look at this quick task analysis of going to the bathroom. Remember, a disabled child must be able to do each of these sub-skills before they can put the chain together.
- Feel the sense of urgency
- Be able to label that in your own mind, identify it “I feel like I have to go to the bathroom”
- Self control skills to not go right then and there
- Be able to problem solve that feeling I have “I should ask the teacher to leave”
- Be able to motor plan the appropriate steps to take-raise hand, ask teacher appropriate question, respond appropriate, get up, go to appropriate space…and then a whole new sequence of events.
Use Age-Appropriate Language
Preschoolers use the potty. Teenagers do not. If your 10 year old still needs diapers or your 11 year old still needs pullups, they don’t need to be doing babytalk too. Or condescendingly baby-talked down to.
Avoid: potty, poo, peepee, little boys’ room, little girls’ room, piddle, wee wee, poopie, doo doo, etc.
Use instead: bathroom, restroom, urinate, use the bathroom, go to the bathroom, washroom, private time.
Toileting IEP Goals
IDEA and case law has been very clear that IEPs are not just for academics.
Functional skills are to be included in an IEP if a child lacks the skill(s).
IEP Goals for Independent Toileting
These are just some examples of IEP goals for toileting. As always, when writing an IEP goal, it must meet the SMART goal criteria. And, of course these will vary based upon the child’s skills or lack thereof.
You have to have a good foundation before moving on. As in, you cannot put a goal of “student will remain dry for X hours” if the child is not even communicating the need. I see a lot of IEPs with “staying dry” listed as the goal.
Of course that is the ultimate goal! But with many kids, you can’t just jump right to that.
- Student will sit on the toilet for X seconds every two hours without resistance.
- With X level of prompt, Student will
- Student will use (mode of communication) to request….
- Student will cooperate with specific toileting protocol….
- When Student is told “Let’s go to the bathroom,” he/she will….
- Student will void successfully on the toilet…
- When handed a pullup/key/PECS card/other item, the student will stand up and proceed to the restroom
Those are just some sample tasks that relate to toileting. Think of the basic foundation steps toward toilet training, and put them in the goal formula.
Child Excluded from IEP placement because they are not toilet trained.
This is related but also common to the problem of having an older child who is not yet toilet trained. Many schools and preschools have rules such as “Must be toilet trained to attend.” Can they do that? Well, it depends. Each situation is different.
Private schools and private preschools are generally not bound to IDEA, so they can establish these rules. Public schools that are bound to IDEA cannot. If it is a placement that was decided upon by the IEP team, then no, they cannot.
Think of it this way: Essentially the child is not toilet trained (at a later age than usual) due to their disability. Thus, excluding them from that school would be excluding them based upon their disability. But, some schools are allowed to do this, such as privates and charters.
Toileting and Aides/Paraprofessionals
If the (public school’s) reason is merely that they are not staffed to do it, that is not a valid reason. I understand that many union contracts prohibit teachers from entering restrooms with students, or assisting them with toileting. However, then the child needs a PCA or 1:1 to assist them with this. If the child otherwise belongs in gen ed for most of their day in order to obtain LRE, the school cannot choose a more restrictive placement based on one issue (toileting).
It can get complicated, so feel free to join our Facebook group if you have specific questions.
Adding Toilet Training to an IEP.
I was told that’s not an IEP item. It is. Case law has supported adaptive living skills on an IEP over and over and over. So, just handle it like you would any other concern. Ask them to show you where it says in IDEA or the state regs that potty training should not be part of an IEP. (They’ll be looking for a really long time) Remember, there is no “We don’t do that here.”
Toileting or Potty Training on your IEP.
- Write a letter to your child’s IEP team. Describe the problem. Include the consequences and repercussions of what is happening as a result of your child not being toilet trained.
- Ask the team to meet. State that you wish to discuss toilet training goals and protocols.
- Include success stories! What has worked at home? Are there signs of readiness that you see in your child? Be solution-oriented in your request.
- All along the way, document, document, document.
- After the meeting, write a short note that summarizes what the team agreed to do. Add in that you expect to see this information on a PWN and proceed accordingly.
Toilet Training in Public School
Just a few things to keep in mind as you proceed.
- Use age-appropriate language. “Potty” is the word when you’re 3 or 4, not 13 or 14.
- Be consistent. Make sure protocol is being followed at home and at school.
- Use literal language if your child needs it. There are a zillion euphemisms for all things toileting, right? Don’t use them if it will further confuse your child. Pick one word and be consistent.
- Think outside the box. Maybe your child needs a photograph of your actual bathroom, not a PECS diagram. Maybe they need a 3D object such as a pull-up.
- Don’t get discouraged. Our kids take a long time to learn things. If you get frustrated, take a break and revisit it in a few months.
- Be aware of signs of readiness.
- Some kids just aren’t going to be toilet trained for a really long time. I have a friend whose son was finally trained at age 20. But it happened, and that’s what matters.
Toileting Protocol for School
Don’t overthink it. I often think that a lot of an IEP team’s trepidation about doing something like this is that they think it’s going to be a ton of work. It doesn’t have to be. This particular protocol was intense because that is what the child needed. But you can also just use natural breaks in the day like snack times, lunch and moving to different areas.
And, here is a social story about toileting. Pretty basic, but all I could find.
I have another whole post with dozens of Visual Schedules for Daily Routines. You may find something in there since toileting is a part of our daily routine!
As with anything in the IEP, follow the process: Request in writing, meet, follow up with PWN.
Diapers and Pullups for an Older Child
Once your child grows out of the size 5T or 6 or XL for most diapers and pullups, things can get tricky.
But, the good news is that lately, nighttime incontinence and older kids is an issue that is talked about much more than it was 10-15 years ago. As such, you can usually find packs of pullups in bigger sizes at your grocery store or pharmacy. Even though they are designed for nighttime, you can wear them anytime. The bad news is, that they are terribly expensive.
Also, if you haven’t noticed, incontinence products at your local pharmacy are much more popular and numerous than they used to be. Things like Depends and Poise now take up entire sections, instead of just 1-2 packs shoved some place.
For women, these do come in XS, so that might just work for an older child. But again, these things are not cheap! Try a small pack of store brand to see if they meet your needs. Store brand is usually much cheaper.
Your next step is to ask your pediatrician for names of medical supply companies. And, call your insurance company.
Financial Aid for Diapers and Pullups
Ask your insurance company what is covered. In some cases, you will have to go through a certain supplier. If that is your situation, call that supplier and ask them to send you a sampler pack. They’ll ask you for your child’s height and weight, and send you out a few samples of each product that they have that fits your child.
If your insurance does not cover it, consider doing an appeal with your insurance company. Can’t hurt to try.
Or, ask your employer (whoever provides the health insurance) about tax-free medical spending accounts. Do the math on what you’ll spend on these in a year, and have that deducted from the paycheck so at least you won’t pay taxes on that money. Every little bit helps!
Lastly, while not available in every state, in some (mine!) Medicaid expansion covers all kids with disabilities. As such, our diapers and pullups are covered. One more reason why it is so important to be involved in lobbying and advocacy for our kids. These issues matter!
How can I protect our mattress and bedding?
I get it, this is the bane of my existence some weeks. When you have an older child who is incontinent, they often wet the bed. Here’s how I manage it in our household and remain sane.
- Have enough sheets so that I can go several days without laundry if I have to.
- But, I don’t like urine setting in on bedding for several days, so I’ve pretty much resigned myself to doing laundry every day.
- Use a mattress pad over sheet, so it’s just one small pad to wash instead of entire sheets.
- These come in disposable too, but I only use those for when we go on vacation. Pullups makes them, I forget what they’re called.
- Plastic protective cover on mattress.
- Good quality laundry soap, vinegar, borax.
- Dry in the sun when I have the opportunity. It takes out yellowing and smell.
Good luck and keep us posted!