Faria Arsh’s heartfelt account of her neurodivergent daughter’s toilet training journey.
Why does any parent want to toilet-train their child? In any other circumstances, the answer is simple. Parents usually start toilet training routines around the age of two and above because that’s the “norm”. As soon as neurotypical children start showing signs of readiness to use the toilet, most parents get excited about getting rid of nappies and the extra costs that come with that. Toilet training is a difficult task regardless of the ability of the child. I remember when I toilet trained my eldest (may I specify she is neurotypical), I found it extremely challenging. I decided to borrow a book from a friend and read it thoroughly before I embarked on this journey. I cancelled all my plans for a week, had tons of laundry to do each day and to my surprise, my daughter managed to be fully toilet-trained within a week and a half. To be fair, I started toilet training after my daughter was over 2 years old as I was eager to achieve our results quickly. However, I knew that trying any earlier would be a lengthier process and leave both of us frustrated. After toilet-training her, I felt like I had conquered the world. Perhaps this sounds a little over the top but ask any parent who has successfully toilet-trained their child, it does feel like a huge weight off their shoulders.
Now, let’s come back to the main topic here. We all hear stories about toilet training neurotypical children but is there anyone out there to help us to toilet train our autistic children or those with additional needs? I remember asking Afiyah’s paediatrician and she directed me to the disability nurse. Then we got referred to a continence nurse who simply gave me a leaflet on toilet training. The information on the leaflet was generic and mainly for neurotypical children—nothing that I had not already explored. After months of chasing authorities and reading more leaflets, I finally decided to bite the bullet and take matters into my own hands.
When it comes to getting advice from my friends for Afiyah, I consider myself lucky as I had the privilege to work as a Specialist Teaching Assistant in an outstanding Special School. By the time Afiyah was eight in 2016, I had gained four years of experience at a special school, and I was surrounded by colleagues who had a wealth of knowledge when it came to autism and disabilities, communication, and behaviour. I had a chat with some of my friends at work who have had previous experience of successfully toilet training some of their pupils, I also did some internet research and came up with a plan for Afiyah. One thing I learnt early on in my career is that all children are unique despite having similar disabilities and needs.
With this plan, I felt confident but at the same time, I was dreading what was to come in the next few weeks. There was excitement and fire in my belly but also the fear of not achieving our goal. These mixed emotions and feelings don’t help us, do they? As parents (let me add parents of children with additional needs), we are used to dealing with these emotions on a daily basis.
With my neurotypical daughter Faiza, I had cleared a week of my schedule, but for Afiyah I had cleared all six weeks of the summer holidays. I had a chat with my eldest and explained to her how important this is for Afiyah and her future. Faiza being the understanding soul she was at that time (now she’s just a grumpy teenager, lol), she agreed to cooperate as much as possible. Afiyah’s dad and I were together at that time, and he was happy for me to get on with the toilet training program. I hired carers to help me but that soon stopped because of the inconsistent approach. Any approach for Afiyah must be consistent to enable learning otherwise we are putting pressure on Afiyah without achieving any results.
One question I got frequently asked by continence nurses or other professionals was whether Afiyah was showing any signs of being ‘ready’ for toilet training. Let me give you all a little glimpse of Afiyah’s disability and you will know whether she was ready or not. Afiyah has severe autism, ADHD, severe learning disability and Epilepsy. She only cares about her food and toys. She can’t care less about anything else in the world. Just knowing Afiyah’s formal diagnosis is more than enough to conclude that Afiyah would never be able to show signs of being ready for toilet training. As far as Afiyah was concerned, nappies were the “norm” for her as she didn’t know any other way. To be fair to her, why would she want to know any other way? Going to the toilet will take effort, which meant leaving the toys or stopping eating to go to the toilet and why would Afiyah choose to do that? All parents and carers who have children with autism or other disabilities will know that our children will take the easiest route to do anything. Let me start again, what I meant to say is all parents will know that their children (never mind additional needs) will take the easiest route for everything. Hence, having a nappy on was the best option for Afiyah and sometimes for me as well. Imagine I am out and about at Trafford Center (something girls and I loved doing at that time, but not any more), and Afiyah needed to go to the toilet amid me finding the best bargain of my life. What would be easier for me—having a nappy on Afiyah of course! So, obviously, we all got a little too comfortable having nappies on Afiyah as it was an easier option for us for a while. Saying that I knew at the back of my mind that I couldn’t let this go on any longer for Afiyah’s health and for the other reasons I mentioned earlier.
After toilet training Afiyah successfully, I started getting invited to run toilet training classes for other parents at the special school I worked at. I must say through this, I have had the opportunity to help parents successfully toilet train their children. Once these parents achieved their goals, they went on to pass their experience to their friends and this is how this approach has gone further and further.
Six years on, the benefits from this have been massive and life-changing, not just for Afiyah but all of us. Afiyah doesn’t get recurring urinary infections any more. Afiyah is a healthier young lady, and she drinks more water throughout the day thanks to the toileting program I created. Not to mention the convenience of not having to change her nappies any more. She is fifteen now and nearly taller than me (5ft 5 inches) and the thought of changing her nappy is very daunting but thankfully I don’t have to do that any more. She still needs assistance to clean herself properly because of the complexity of her disability but that is something I am happy to live with. Maybe with time, she may develop an understanding and learn to clean herself properly after a bowel movement.
Faria Arsh has been a Specialist Teaching Assistant at an outstanding Special School with personal experience of toilet training her severely autistic daughter.