Swimming In Pee

Yes I am, I am swimming in pee. The last few weeks have been mopping up pee, being peed on, and endless loads of laundry. I am sure my house smells like pee (or my biodegradable environmentally friendly cleaning spray).



Kate is soon to be 6 years old, and I am determined (despite any physical limitation such as hypotonia, neuropathy, developmental delay, language delay, spinal syrinx) to potty train her. My reasons are not entirely selfish – yes, I would love to be ‘diaper free’ at some point in my life. It would be wonderful to not have to carry supplies, to avoid accidents, to remove myself from the Easter Seals incontinence supply grant. I would love the freedom, similar to that feeling when Kate stopped using formula (at age 5), and gave up her soother (5 1/2). I would love to not have to worry about packing enough, or forgetting wipes, or carrying an extra change of clothing. (Recognizing that potty training will require all of this for still some time to come). What has really been driving me on the potty training agenda is Kate. She is a little girl, despite her size and her delays, she is growing up and becoming her own little person and I want to help realize this in one of the most fundamental ways. If she can achieve it, I want her to be able to be a ‘big girl’ and to be part of the big kid club of wearing cute little panties and not cumbersome pull ups. I want her to be able to achieve the same right of passage as other children (far younger than her). I want her sense of independence to be built up and for her to recognize there are things she can have control over in her life.

All of those hopes for her, wrapped up in the goal of being potty trained.



The journey so far has been full of false starts, expert opinion from various therapists, teachers, parents, reviewing of the special needs literature out there on potty training, discussions with the medical experts about Kate’s physical ability to potty train. I never would have thought there would be so many methods and explanations about how to get one person to pee into a receptacle.

Jack potty trained at age 15 months and it took 2 attempts.

This has been at least a year and more in the making – from beginning to think about it to planning the how and the logistics of it all. Waiting for the right cues/signals from Kate (you’ll know when she is ready – who made that brilliant statement more than once to me!). I truly believe all of the false starts have led to this moment – these past 4 weeks – of actually seeing some results.

Kate has had more than a few successful pees in the potty. After several years of practice and observing other kiddos at preschool, she understands the toileting routine. In fact, she loves the routine of pulling her pants down, sitting (for 3 seconds), wiping (for a few minutes), washing of hands and stating (via ASL) that she is ‘all done’.  About a month ago, I set the goal of using the month of August to really give intense potty training another shot. This time it was cold turkey for pullups. They were off, accidents or not. I invested heavily in training underwear – you know the cotton waffle kind that weigh 5lbs when they are wet! I rallied my team (Brian,  our new caregiver, even Jack) and we came up with a plan and an agreement that potty training was the focus for Kate. We established a schedule and committed to the no pull-up rule. In fact, it has been bare bum around her for much of the last month (Kate that is).  My hope was to have a well established routine before school started – and hope that school (her EA) could keep the routine and results going. (Heaven help them if they don’t!).

Things did not start smoothly. The accidents were constant – the floor has been washed countless times, and at the end of all this the living room rug will likely get tossed. Kate is also VERY distressed when she has an accident. She spent the first couple of weeks searching for pullups to put on so she could pee, but what that made me realize is that she can hold it in. That was something we were not clear on because of her hypotonia and neurological weakness. Knowing that she could hold it – upwards of 20 minutes if she needed to (way longer than me!), showed us that she did have control. The next step was teaching her how to let go.

I never thought the simple act of peeing would be so upsetting. Kate literally panics when she has to go. She gets upset, cries, and screams. She will start to pee and then we’ll rush her to the potty, where she will cry and need to be consoled. She sticks her little hand underneath her in an attempt to hold it in – which only results in pee spraying everywhere. The whole act seems very distressing, but it is getting better. After many tears (and screaming) and hugging it out on the potty, she has managed a few successful results and now claps for herself when she has managed a pee. She is getting it – and I am so happy for her.

I wish I could tell the other special needs parents out there what the formula is. I looked for it myself for years. The truth is there is none. It is trial and error – readiness – false starts – frustration – tears – defeat – small wins – then regression. My best advice to read up on the information that is out there, but to trust your instinct. You will know when the time is right, and you once you decide to seize the moment, make a commitment to it. It will not be perfect, it will take a long time, it will feel like forever – you may even need to take a break. In the end it will pay off. It will come. It can be done. And it is a celebration.

I know this is only the very beginning of the journey for us – but it is a journey of independence that I never thought Kate would achieve and I am grateful that she is learning to do this for herself. Something as simple as peeing in a potty has made me very happy.



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