It's not always easy, but persevering to help your disabled child self-manage in the loo is a lifetime gift.
By Louise Inglis
A holiday wish
Managing one’s own toileting is a life skill most of us take for granted. Our youngest son Kevin, now eight and a half years old, is profoundly affected by autism, intellectual disability and epilepsy. He is completely nonverbal. I desperately want him to have the dignity of caring for his own toileting needs. Join me as I share with you our toilet training journey.
17 December, 2012
The big day has finally arrived. Toilet training is commencing in earnest. For 12 hours a day, from 7am, Kevin will be wearing undies, not nappies.There will be puddles to mop, carpets to clean, clothes to wash, and possibly tears to wipe (his and mine). Two years ago we made a valiant attempt at toilet training. It was the most stressful summer holiday I can remember. Six weeks of puddles and washing later, Kevin returned to school, no further along with toileting than when we started. We reverted to nappies and continued with regular toileting.
As the 2012-2013 summer holidays approached, I decided it was time to try again. This time things would be different, though.
Behaviour Analyst Angela Arnold-Saritepe had been assigned to work with Kevin, his allocation of personal care hours had increased significantly, and we prepared thoroughly for the task ahead.
A start date and time was chosen. Bigger undies were purchased, as was a ‘wee alarm’, a small battery operated device that would fasten to Kevin's t-shirt with a wetness sensor inside his undies. Chocolate was stocked in the pantry as the chosen reinforcer for successes.
Relevant photographic visuals were made. We also collected data about Kevin's current toileting habits so we could track changes during the training period. Numerous activities were planned to occupy Kevin during the extra time he would have at home.
Staying home was pivotal for learning to use the toilet in a familiar environment before Kevin would feel able to try elsewhere.
A detailed staff roster for Kevin’s part-time support workers was put in place. Preparing myself mentally was one of the most challenging aspects of the planning; I knew how hard it had been two years ago.
This time I abandoned plans for an extended family Christmas holiday. For several weeks I felt blue knowing our Christmas would be spent at home, mostly in the toilet, but I also knew that nothing would be more important this summer than helping Kevin learn to be independent in the bathroom.
The first week
Kevin was taken to the toilet every hour, on the hour, and every time the alert beeped. We offered him juice, a treat usually reserved for meal times. Detailed data was recorded in his toileting book specifying drinking times and volumes, toileting times, sitting times, and what, if anything, was produced.
The first day Kevin wet himself 21 times. Each time the alarm beeped he seemed frightened and anxious; he couldn't relax on the toilet. A short while later, still needing to empty his bladder, the pattern was repeated.
I was grateful our older son was in school for a few more days and didn’t need to start his holidays with Kevin’s loud crying, the frequent beeping, and Mum's undivided attention to Kevin’s toileting needs.
Keeping Kevin seated was challenging. Photographs, books and bubbles were placed beside the toilet as distractions. His iPad, which also has a large collection of photos, was kept nearby.
We used an Anzacare Dri Sleeper alarm, which cost $75 from the Peter Menzies Pharmacy in Howick; it specialises in equipment that many pharmacies don't stock. These alarms are also available from www.topbrandsforless.com (formerly known as Pharmacy Express). Keep the box in case you have problems with the batteries, as we did.
10 days later
It was time for the toilet again.
More sitting beside Kevin, flicking through the same books for the umpteenth time.
More ambient sounds of running water from his iPad to spur his bladder.
Listening to his cries was stressful for me. Our precious boy, could he possibly understand what we were trying to achieve?
Intrigued by the new app on his iPad, I discovered that in addition to running water we could have birds, rain, beach and other peaceful sounds all playing simultaneously. Now it seemed we were in a tropical rainforest. He slowly settled and started to urinate in the toilet.
I was so excited that I praised him loudly and thrust his box of Cadbury Favourites into his lap. He was startled and stopped urinating. Lesson learnt. “Stay calm, Louise, until the deed is done.”
Another 10 minutes passed before he relaxed sufficiently to complete the job. This time the warm urine fountained all over my legs and into a pool on the floor.
He pushed the chocolate box away. It seemed chocolate was no longer an adequate reinforcer, that no progress had been made, that we were wasting our time.
Kevin continued to resist toileting. He peed frequently in his undies. He seldom urinated in the toilet, and on the rare occasions that he did, it always made a mess on the floor and over his books because he still required the small toilet seat to sit up properly.
Feeling utterly deflated and ready to quit, I cried myself to sleep, fearful that our son would still be in nappies as an adult.
Just when I most needed it, two friends shouted me coffee and urged me to continue. There was too much at stake to give up so soon. They felt I needed a way to take Kevin on outings, as we were both stressed by our home confinement.
I assumed no potty would be big enough for a child of Kevin's age and visited our local home health care rooms searching for a commode. These were far too cumbersome, so in desperation I visited the local Baby Factory store and was pleasantly surprised to find a deluxe potty big enough for Kevin.
On arriving home I immediately took Kevin for his first walk in two weeks, potty and supplies in hand. I felt liberated by our newfound freedom, as did Kevin, who ran gleefully along the path.
The next day, at our team meeting, Angela analysed the data and proudly announced that Kevin had indeed made significant progress. Although still not peeing in the toilet often, Kevin was regularly holding his bladder for more than three hours (compared to 60-90 minutes prior to when we began toilet training). This, she assured us, was a fine start.
My spirits buoyed, I vowed to persevere. Toileting frequency was stretched to one and a half hourly intervals, and every 30 minutes after three hours of no voiding. The reinforcer was changed to a drive in the car.
Kevin responded well to this reward. After a week, fed up with the inconvenience of frequent drives and reasonably confident that a routine of voiding in the toilet was establishing, I decided that outings would continue at times that suited me.
This was important because Kevin would be staying with my parents the following week and attending a school holiday program during the day. I was taking our eldest son camping for a few days. Kevin needed to pee in the toilet without expecting an outing.
The first two days at my parents' home were similar to our early days of toilet training at our place. Kevin cried loudly and seldom produced in the toilet, but as the days passed he began to resist less and to void regularly. He also gradually adjusted to the alarm. Instead of clenching in fright or flooding all over the floor, he began to hold his bladder while he was quickly and quietly taken to the toilet to urinate.
This was a major breakthrough.
It didn’t (and still doesn’t) happen every time Kevin needs to go to the toilet, but is becoming much more common.
Over time, I stopped using the kiddie toilet seat. Kevin learned to sit right back on the adult toilet seat to avoid falling in, and finally the floor remained clean when he voided. Two weeks ago Kevin took himself to the bathroom completely unaided and urinated into the toilet without encouragement. I still don’t know whether this happened because Kevin recognised his need to urinate, or whether he simply wanted to look at his special photo album. Either way, I was delighted at the outcome!
There are still many challenges. Just last week, for example, I sat patiently with Kevin for about 15 minutes on two separate occasions, looking through photo albums with him, hoping he would urinate before I took him out. Then, relaxed in his car seat minutes later, he wet himself.
Such times are particularly frustrating, and I need to remind myself why I am doing this. I want Kevin to have the dignity of caring for his own toileting needs as an adult. It is a legacy I want to leave him. I press on.
As I look back over the weeks of training, I am excited by our progress.
Yesterday, on three successive trips to the toilet, including one on his potty at a picnic, Kevin urinated within a few minutes of sitting rather than first needing to sit for 10 to 20 minutes.
I am meeting with his teacher to ensure continuity at school and feel a growing sense of hope that, with ongoing vigilance and regular toileting, Kevin will indeed be wearing undies as an adult!
Read Louise’s book, Happiness In His Eyes, about her experiences raising Kevin. The book is available from most Whitcoulls stores, independent bookstores, and as an e-book through Amazon and Smashwords. It can also be ordered directly through her website, www.louiseinglis.com