The launch of a new campaign to enable children with Down syndrome to be toilet-ready for school and reach their full potential.
For some time, I’d been aware that many parents appeared unsupported, unprepared and indeed unaware of how best to help their child with Down syndrome to become toilet-trained. Many felt and were often told by healthcare/education professionals that their child of 3 or 4 ‘wasn’t ready’. As a result, I would often hear of parents waiting until the summer before their child was due to start school, then announcing they were starting toilet-training, removing the child’s nappy and wondering why at the end of the summer they’d not succeeded. Both parent and child endured a somewhat protracted and painful experience, with many children still starting school in nappies, or in pants but far from being successfully toilet-trained. Not only was this demoralising for parents but for those children starting at mainstream schools, it set them apart from most of their peers, in the eyes and perceptions of other children, their parents and teaching professionals. I suspect that this possibly resulted in teaching staff subconsciously lowering their expectations of what the child can achieve, teachers and indeed other pupils ‘babying’ the pupil with Down syndrome and perhaps creating a social barrier as well, as parents may be reluctant for the child with Down syndrome to be invited for a play date in case of a nappy needing to be changed.
In December 2018, the local group I run, The Ups of Downs in Warwickshire, held a training day on toilet-training, delivered by the very knowledgeable and wonderful June Rogers MBE of Bladder & Bowel UK. During the 15-minute car journey from the station to the training venue, June and I chatted non-stop, and I discovered that June not only shared the same concerns but most importantly had the answers as to how the majority of our children can be toilet-trained. I knew through social media I could reach parents but needed June’s experience and expertise to support and advise our community, and so was delighted when she kindly agreed to be our resident online expert. In January 2019 we launched DSUK Going Potty?!, a closed page on Facebook that is open to both parents & professionals to ask advice, share experiences and support each other through the joys of potty-training.
June & I are both passionate about promoting to parents to start young, from circa 9 months and we have already seen many parents embarking on the step-by-step approach with great success! We’ve created a very supportive community of almost 1,800 UK-based members. We are presently collaborating with the Institute of Health Visitors to welcome more healthcare professionals to share their expertise and also perhaps be inspired and enlightened by how well the majority of our little ones can do with high expectations, the right knowledge and support.
June’s step-by-step programme originates from the fact that constipation is a very common problem in children with DS. In order to help overcome constipation, June had discovered that by encouraging parents to sit their child on a potty after meals, from around 6-9 months of age, had really helped reduce the incidence of this problem.
Interestingly, the parents then reported that after a while these little ones started to only open their bowels on the potty. The children were becoming clean and appeared to wait to open their bowels until they were on the potty! This gave June the idea of the early intervention toilet training programme to encourage all children with DS, not just those with constipation, to start sitting on the potty early on as part of their daily routine.This approach formed part of the step-by-step programme when children are taught the appropriate skills and develop the awareness that enables them to be toilet-trained age-appropriately. We know that for most children with Down syndrome, they need to be taught new skills that perhaps typically-developing children may assimilate through everyday living. For the child with Down syndrome, it is unrealistic to remove their nappy one day and expect them to have acquired the knowledge, language and understanding around all that toilet-training involves.
In brief, June’s step-by-step approach encourages parents to:
Step 1: Set the scene
Always change the nappy in the bathroom to create association, tipping solid poos down the loo and flush away
Talk about and promote understanding of the concepts clean/dirty and wet/dry
When the child can sit, introduce them to the potty – perhaps each evening before bath time
Step 2: Develop the skills
Make sure the child is comfortable sitting on the potty and progress to the loo – using toilet inserts/steps as necessary
Take the child to the loo/potty first thing in the morning and after each meal/drinks. You want this to become part of the child’s routine, as it is for us all.
It is important to ensure the child drinks plenty and has a healthy diet
Step 3: Identify patterns
Before you can remove the child’s nappy you need to establish how frequently the child wees/poos. For a couple of days, using paper towel in the nappy, check the nappy every hour that your child is awake to find out when they wee/poo. Also record times of meals and drinks to establish how long after a drink your child wees…
Step 4: Use the toilet
Once you’ve completed steps 1 and 2, and you know the child’s toileting habits from step 3, the time has come to remove the nappy all the time they are awake. This includes when you are not at home.
Be confident in the knowledge that you will succeed!
Having started the Facebook page at the beginning of the year, many parents started working on the first couple of steps so that by the time the good weather arrived, they were confident to go for it and we were thrilled with how many parents succeeded in getting their children out of nappies.
I conducted a small survey on the page to collect some data and it corroborated my thoughts that many people were being advised/had felt their child wasn’t yet ready for toilet-training. As June advises, she’s worked in this field for more than 30 years and is yet to meet a child who has advised that they are ready! Indeed, her experience shows that the longer one leaves toilet-training, the harder it generally is for children with Down syndrome to come out of nappies.
The survey showed that less than a third of children were starting schools out of nappies, with 28% being completely toilet-trained, 9% almost fully trained and 63% starting school in nappies. Given we have the knowledge and expertise, I thought we needed to address this and came up with the idea of a campaign – I love a slogan and went for Pants4School.
There are of course some children who have more complex needs/additional health issues that delay toilet-training, but we believe that the majority of children with Down syndrome can be out of nappies before they start school and in March 2020, at Bladder & Bowel UKs annual conference, launched Pants4School.
We were recently thrilled to be advised that the Pants4School initiative was a finalist at the British Journal of Nursing Awards. Unfortunately, the gala event had to be cancelled due to Covid19, however, what a tremendous achievement to be selected and shortlisted as finalists!
We welcome all UK-based parents/carers and professionals to our Facebook pages.
For those children aged under 5 years, please join: DSUK Going Potty?! Toilet-training advice & tips 4 children with Down syndrome here.
For children over the age of 5 years who are still struggling with the toilet-training or have more complex issues, please join: DSUK Toileting issues 4 children & young people w Down syndrome aged 5+ Join here.
The Pants4School information leaflet can be downloaded here.
Written by Nicola Enoch
For more information or support – firstname.lastname@example.org
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