Caroline is the mother of Yonas an 8 year old SynGAPian. She recently tacked the challenge of potty training a him and has been kind enough to share her experience in this article. Potty training is a major challenge for all SynGAP parents, and we are so grateful she has done the work of documenting her experiance.
In the beginning, potty training to us seemed like an absolutely intimidating task. In truth, we were not particularly optimistic that he could get there. Our fears were exacerbated by the following definitive question (that consumed me, fearful of this seemingly unimaginable task!): "How can we get him to use the potty when his communication skills are so limited??”
It's not like we could tell him what is going on and he will understand. Not to mention the months at a time it would take to get him to just feel "ok" with sitting... are we to envision spending the next year in the bathroom?
Fear not!! All is possible. We were able to do all that and have a baby in the midst of it. In fact, we were determined to begin the process before the arrival of our fourth child (crazy as we are – we started the formal process of potty training exactly 2 weeks before our baby’s due date). But we will also say – we had help. You end up spending quite some time in the bathroom with your child and splitting that responsibility with a babysitter, a grandparent and a spouse or partner is so helpful – especially in the beginning.
We feel like we have learned tons about this process and I wanted to pass this information along in case any one of you might find it helpful! In fact, when we reflect on the past 8 months (we started about 8 months ago) - we realize that the process of teaching him to use the potty was actually quite technical and systematic. As someone who has worked in Education for quite some time, I cannot help but reflect on the very nature of the learning process and how learning unfolds, especially for him. We have come to find that when we have a better understanding of how he learns (or by which means), we can support him more effectively. The same was true during this phase of potty training.
One of the things that I think is worth mentioning upfront are some guiding principles that truly serve as the foundation for his ability to learn or master a skill - any skill, really (surely all things SynGAP parents are too familiar with):
Potty training him felt like a marathon, not a sprint. I wish someone could have been more clear and concrete about that with us beforehand. While people “warned” us in one way or another, we had no mental model for what that actually meant. More specifically, when I reflect back at our process, I can identify a series of “milestones” or “goals” we had to master or accomplish along the way that ultimately got him to being potty trained. It’s almost like it would have been incredibly helpful to have an IEP-esque kind of document to guide our potty training efforts. And while our ABA therapists created a task analysis for him – I am not totally sure they created smaller targets or the right kind of “milestones” at the right altitude. Based on our experience (and please take it with a grain of salt since everyone’s child and situation is different!), here are the set of goals that we ultimately achieved without spelling it out beforehand (this is based on my reflection, looking back) along with time it took to meet them:
While each of the above goals seem simple enough (maybe?) – it is important to point out that each goal consisted of a sub-set of steps or targets. For example, for Goal #1, we wouldn’t aim to get him to sit for us for 20 minutes from the get-go. Instead, we would start with 2 minutes in week one, 5 minutes in week two, and so forth until we worked up to 20 minutes total.
Below is a breakdown of the more concrete, individual steps we would take while working toward the broader 6 goals listed above.
20 minutes seems like forever – and believe me when I say that it takes a few weeks to work your way to that amount of time. The rationale for 20 minutes is that it was a reasonable enough time to “catch” Yonas voiding, especially in the very early stages. As I mention briefly above, we started with 2 minutes at a time for about a week, then increased the sittings to 5 minutes per sitting for another week or so, then 10 minutes and so forth.
If you are lucky it won’t take your child that long but you never know. Please manage your expectations here – best advice we got. Once Yonas tolerated sitting for about 20 minutes, we would take him to the bathroom every 30 minutes for about 15-20 minutes.
We were told by several people to give Yonas lots to drink but that was a real challenge since he doesn’t actually like drinking. It worked out fine, though, because after about a month or two we started to recognize patterns in his toileting habits (when he had to void) and then we began tailoring Yonas’ potty-going habits to when we thought he would need to go instead of needing to take him every 30 minutes (which, realistically, is just not sustainable even under the best of circumstances).
Very important – NO DIAPERS or PULL-UPS during this time (except at night or during transit). Yes, there will be tons of accidents along the way BUT remember the associations piece? Yonas associated the diaper with voiding in his pants and the only way to remove that association is by removing the diapers! Voiding accidents are inevitable – we kept extra underwear and pants in the bathroom for Yonas to change into and we would collect his dirty clothes into a bucket until there was enough to run a load.
Another thing I wanted to mention here is a common corrective procedure that is used as part of a number of different potty training protocol. As part of the corrective procedure, when kids have an accident – they are taken to the toilet with the soiled clothes, asked to void (even if they don’t), then taken back to the “site of the accident” in the same, soiled clothes, and then all of this is repeated twice. I am of course over simplifying here (there probably more nuance). Yonas’ teachers and therapists recommended we use this but it just didn’t work for us. Yonas would get frustrated with the back and forth to the toilet (that was the goal in part, I suppose) but I got the sense that he didn’t really understand cognitively. So we stopped that protocol and did just fine without it, pouring more time into getting Yonas to make that association between potty and voiding.
Another thing to note is that Yonas had a hard time sitting on the toilet without support given his low-muscle tone. We tried a potty seat (with step stool) to support him but we noticed he got way to comfortable and relaxed – which was also not productive. The key really was to not get him too comfortable. So we decided to remove the support seat and instead had to scooch him all the way to the far back of the toilet so that he would not fall in. In the first month or two, we also decided to take off his underwear, pants and shoes while sitting him on the toilet so that he could sit all the way back and spread his legs sideways for support as he got used to sitting on the potty.
Moreover, our ABA therapists recommended we read him books on the toilet or use the I-pad to get him more “comfortable” or acquainted with the notion of sitting on the potty for a while but we realized fairly quickly that those things were way too distracting for him. Yonas would very quickly associate I-pad with potty and while that was not only NOT the association we wanted to achieve, we were also worried we would eventually have to remove the I-pad even if we did get him to void with it on the toilet which felt almost like an extra step. Instead, it was much more effective to just push him through the time we needed him to sit with a firm tone and some limited singing or soothing without any true “distractions”. That is not to say Yonas didn’t tantrum – he did! In those instances we would massage his legs and his arms to calm him. That, coupled with a reward at the end of his “potty time” ended up feeling more effective for us.
When Yonas did happen to void, we would celebrate like crazy, sing songs, make him laugh and of course, reward him with chocolate or gummy bears. After a while (a month or so) he got the hang of this routine and we were able to get him to sit for 15-20 minutes at a time, as was the goal.
We noticed early on that Yonas would void only if he was completely relaxed and it was silent around him. Too many distractions were not conducive to getting him to void. Greater silence and relaxation allowed him to exclusively focus on what was going on in his body.
With time and the constant routine of going to the bathroom and sitting on the potty allowed him to slowly, but steadily (!) associate the potty with voiding. In month 2-3 we were no longer taking him every 30 minutes and instead timing it to when we knew he would typically need to void (also based on when he would drink liquids). It felt way more manageable at this point.
Consequently, in month 3-4 he had finally associated the potty with voiding. We knew because he would void within minutes of sitting on the potty!
This skill actually developed with time as well. Once we were able to get Yonas to know what to do on the potty (meaning, voiding once we put him on), Yonas naturally began holding his voids at around month 4-5. The more time passed, the longer he learned to hold his urine. We are now in month 9 and he can hold his voids up to 3 hours – even if he drank tons of water within that time.
Achieving this goal was a bit surprising, albeit an interesting one for us. We heard from a lot of other families and therapists that bowel movements are often trained last and even take up to 2 years to train. Even before the formal potty training began, Yonas would have his bowel movements at the same time every night. We simply started putting him on the toilet before his bath at that exact time (usually around 7pm) and he began defecating there each night (instead of in the diaper).
I think key was the fact that putting him onto the upstairs toilet right before his bath became a routine – and as we built defecating into this routine, Yonas slowly learned what he needed to do right before his bath. It is almost like the association became bowel movement in the potty=bath (the bath also served as the reinforcer since he loves water!).
Increasing our awareness for Yonas’ bowel movement habits and then setting up of a routine for him to put him on the potty at or around that time.
Finding some way of communicating to Yonas when he was sitting on the toilet (at that 7pm time – his usual time for defecating) that we expect him to “push” or remove his bowels. This part might be a bit graphic and apologize upfront…! Bowel movements were, at first, a bit strange and in some ways scary for Yonas. This is not uncommon with all kids who are being potty trained (I am sure you have all heard this) – kids can develop a fear of “letting go” or “losing” something. When Yonas’ bowel movements would hit the water in the toilet bowl, we would pair it with some kind of “funny” sound. I remember early on singing to him: “poop, poop poop – Yonas is doing poopy.” My husband and babysitter followed suit and after about a month or two – we could see him pushing every time we sang this little jingle. He had made the association “potty before bath = push for poop” and this seemed to work.
For a very long time Yonas wanted nothing to do with the communication part of potty training. In the beginning, we added a picture of the potty onto his AAC device but we also prepared a laminated picture for him that we places strategically in 2 different areas (we attached it to the wall with Velcro). When we realized early on that we weren’t being successful with getting him to communicate, we decided that maybe the communication piece was too much in the beginning and we could always layer it into his learning process later on.
Looking back this was the right call. In the first few months, Yonas was busy (and probably using a lot of his mental capacity) focusing on tolerating the potty, and making association between potty and voiding, etc. Once he had mastered the first set of goals, we were able to exclusively focus on the communication piece. That said, he still isn’t using his AAC device but is using the laminated picture. It took us some time – about 1-2 months to get him comfortable with the picture, though.
Before taking him to the toilet, we would take him to where the picture was stuck to the wall, and prompt him to point to the picture. In the first 2-3 weeks it was a full physical prompt. After some time, however, we realized that he was pointing himself when we would take him to the laminated picture card and when he would point himself without a prompt – we also noticed he would void right away. To us, that signaled that he realized he had to “go” and was also becoming more comfortable with the notion of communicating just that.
We will be tackling this goal next – anticipating that we will be here for the next 3-4 months. We anticipate that getting Yonas to spontaneously communicate his needs of using the potty will require a similar strategy as before: A lot of repetition with walking him to the laminated picture card of the potty, getting him to point to the picture independent of our support – hoping that he will begin associating this picture card with “this is how I make my needs known – that I have to go.” With everything that we have put forth to make these set of skills possible for him we are feeling pretty optimistic that Yonas can get there.
There is a lot of information here and quite honestly, I didn’t anticipate writing so much! It may seem intimidating but in truth – it’s all manageable given that the various efforts don’t happen all at once – it’s really more of a one-step-at-a-time kind of a project. That said, I did want to underscore that learning in Yonas’ case feels like it always has to be a very strategic and intentional “build”.
I also want to emphasize that the above was our unique experience with getting Yonas to where he is today with potty training and by no means based on any type of research etc. (although, elements of it may inadvertently be – I am unsure of that, though). I am sure there are tons of potty training resources for our children out there that have been valuable and helpful to others – that just wasn’t the case with us in terms of the resources we were given or able to secure. That said, please take what I have laid out here with a grain of salt – there may be other, “more effective ways” for your own unique situation. Always just be attuned with your child’s needs and the signals they project – and then tailor your ideas to that. Sometimes, trial and error can be your best friend. And always remember – you know your child the best! Feel confident to resist even the best of “professional advice.”
I received a number of follow-up on my potty training post related to the question of when to best potty train. The not-so-surprising response would be "that depends on the child" but for us, the two big signs of readiness were as follows:
Yonas started showing signs of discomfort with the diaper at around age 8 (when we decided to start training him). He would occasionally touch his diaper or tug at it and even though it was unclear whether it was the result of a true discomfort - something shifted in his awareness "down there". That said, he could stay in a soiled diaper for hours on end but bowel movements were more clearly uncomfortable for him. I think some sign of awareness on behalf of the child is key (but like I said, I am not convinced it HAS to be discomfort specifically).
When we started potty training about 8 months ago we felt Yonas was ready from a communications standpoint as well. At this point, Yonas is fairly good at making his needs known - even though cognitively he functions at the age of a 1.5 year-old (in some way even younger given that he is non-verbal). However, he does avidly point to items and objects and uses his AAC device fairly well in terms of being able to "click" through the layers of windows (we use Touch Chat). He is also very skilled at finding Youtube videos of elevators and trains. I think the fact that he is fairly good at communicating his needs in one way or another was also an important prerequisite to being able to effectively potty train him.