The age at which children are toilet trained has risen over the past decades from around the age of 2 years in the 1960s to 3 years currently, with many children even starting pre-school still in nappies. This has obvious implications socially but there is also evidence that starting toilet training after the age of 2 years can have an impact on future bladder health (Joinson et al, 2009).
For children with learning disabilities, it is almost the ‘norm’ for toilet training to start late and yet many of these children are perfectly able to be toilet trained age appropriately. It is often their lack of understanding of social norms and the lack of opportunity to use the potty or toilet that causes delayed toilet training, rather than an inherent problem with the bladder or bowel.
From our own clinical experience, we have found that it is possible to toilet train children with learning difficulties, particularly children with Down syndrome, age appropriately. Toilet training is essentially the development of a set of skills and all children should be proactively supported to develop those skills early in childhood.
To look at how we could enable children to develop the necessary skills to enable them to be toilet trained age appropriately, a 3-year project involving over 1000 children with Down syndrome was undertaken. This looked at various aspects of physical skill development as well as how to enable the children to understand the concept of using a potty and toilet appropriately. The aim was to enable them to develop the necessary skills to be toilet trained, out of nappies and in pants for starting school. Following completion of the project our ‘Step by Step – toilet skill development programme’ was born and is now available on the Down Syndrome UK website (https://downsyndromeuk.co.uk/parents/toilettraining).
This programme has enabled many children with Down syndrome to be toilet trained age appropriately and start school in pants. This then leads to increased expectations regarding the child's ability to achieve, as well as increasing social opportunities. The success of the programme also led us to be contacted by parents of typically developing children, asking for help to get their child toilet trained.
We then realised that there is minimal research regarding when to start toilet training for all children and what literature is available is unclear and divided. There is often the thought that the child must show some form of ‘readiness’ before toilet training can begin. However, there has been no research or consensus regarding what those signs of ‘readiness’ are.
As there are currently no research-based validated guidelines regarding toilet training children for all children, including those with learning disabilities, we looked at developing a consensus-based best-practice, peer-reviewed document. The document is intended to support achievement of potential in this area for all children, including those with any learning disability.
It is important that professionals should appreciate the need to have high expectations to enable children to achieve their potential. They should understand the importance of early intervention to promote development of the skills that are required for maximum possible independence with toileting, and know how to approach this.
A recent study (Eke et al, 2021) highlighted the lack of evidence-based interventions regarding toilet training children with a neurodisability. They recommended better training for health, education and care professionals about toileting, informed by evidence and the lived experiences of children and their families. They concluded that it is vital that children and young people with a neurodisability have early access to regular, integrated assessment of their bladder and bowel health, and are fully supported with appropriate personalised treatment.
It is therefore important that toilet training for all children is proactive and is promoted early. All health professionals should respond to delayed acquisition of bladder and bowel control in the same way as they would for other developmental delays, such as delayed speech or walking. Referral to a speech and language therapist or physiotherapist would not be put off until it was considered a child was ‘ready’ to talk or walk.
Yet for many children with learning difficulties the introduction of support programmes to facilitate toilet training are either never initiated, or are postponed, in the mistaken belief that the child is not ‘ready’ and that toilet training will get easier as the child gets older. This belief that there is a need to wait for ‘readiness’ is unnecessary and not beneficial for children.
The toilet skill development programme
The toilet skill development programme involves four steps. The steps are adaptable, depending on the age and understanding of the child and can be used for any child, including those who are typically developing and struggling with the toilet-training process. Although it is suggested that the potty is introduced once weaning is established, it is never too late to start the programme.
The following is a very brief overview of the steps.
Step 1. Getting started
This involves such things as getting into a new routine of only changing the nappy in the bathroom area and introducing sitting on the potty and/or the toilet at nappy changes.
Step 2. Introducing regular potty/toilet times as a routine part of the child's day
At this stage the child will be sitting on the potty or toilet as a regular part of their day, such as when they get up, after every meal, before a bath and before bed. Communication about toileting and wees and poos is reinforced by the parent verbally, with signs and pictures, and continues through the steps.
Step 3. Timed toileting
At this stage the child is prompted to the potty/toilet at a time interval informed by a baseline assessment. This aims to coincide potty/toilet sits with times when the child has a virtually full bladder. This will hopefully increase the success rate and give more opportunity for positive reinforcement.
Step 4. Removal of the nappy and going into pants
This is when the more formal process of toilet training begins. The timed toileting continues, and the interval is adjusted as necessary. The use of rewards often play a part in this step to provide encouragement and positive reinforcement.
Routine and consistency is the key to success so it is important that the programme is followed at nursery and school. Dreher et al (2022) looked at toilet training children and adolescents with Down syndrome. They identified that the most successful method of toilet training involved a toileting schedule, providing reinforcement, and prompting the child to use the toilet.
Previous studies had shown that routines and consistent expectations reduce behavioural challenges such as defiance and refusal (Bater et al, 2017). The toileting schedule reduced resistance and often resulted in ‘accidental’ voiding into the toilet, further assisting the child's understanding of what they are being asked to do.
Individuals with Down syndrome often display a lack of motivation to complete a task (Fidler et al, 2007). Positive reinforcement and/or tangible rewards play a large part in the toilet-training process, motivating the child and enhancing success.
It is important that any rewards are meaningful and of interest to the child. They should be given straight away after the child has performed the desired behaviour and, importantly, the reward that is given should not be available at any other time, otherwise it would lose its value.
Developing the guideline
A literature review was first carried out to provide as much evidence base as possible. Where there was no evidence then best practice was informed by clinical experience. The guideline was written for all professionals working with all children, including those with learning disabilities, across any setting. (Down Syndrome UK and Bladder and Bowel UK, 2023).
The guideline includes an overview of the toilet skill development programme and provides links to relevant resources. Common myths around toilet training are also addressed.
There were numerous drafts made of the guideline before the final version was completed. Each draft was sent out for peer review to colleagues across the UK and relevant comments and suggestions added.
It is expected that health, education, social care, early learning years staff and any other professionals involved in the care of children and young people, including those with learning disability or developmental differences, will use their professional knowledge, expertise and judgement, in applying the general principles and recommendations contained in this document.