World Down Syndrome Day is celebrated on 21st March and this year the theme is ‘we decide’. This has been chosen to reflect United Nations Convention on the Rights of Persons with Disabilities.
There are eight core principles to the Convention and these are:
- Respect for dignity, for the rights of the individual with a disability to make their make their own choices
- Not to be discriminated against
- To be allowed full inclusion and participation in society
- To be respected and accepted as a human being who is a unique individual
- Equality of opportunity
- Equality between men and women
- Respect for the development of children with disabilities and respect for the right of children with disabilities to preserve their identities
What do Bladder & Bowel UK do?
Bladder & Bowel UK aims to support anyone who is affected by a bladder and/or bowel issue and the professionals who work with them. While bladder and bowel issues can be a problem for people of any age or ability, individuals with Down syndrome and other learning and developmental disabilities are more likely, than those without disabilities, to struggle with toilet training as children and to have ongoing problems with their bladder and bowel throughout their lives.
It should not just be accepted that bladder or bowel conditions are an inevitable part of Down syndrome, or any disability. The core principles above, support the rights of all individuals to be offered an assessment and then treatment based on the outcome of that assessment, to ensure they meet their potential. Furthermore, there should be no expectation that toilet training will inevitably be delayed for children with Down syndrome.
There is increasing evidence that starting toilet training at a younger age does not cause any difficulties, but the children do achieve this skill at a younger age than they would do if it were left until later. This seems to be true for children with developmental disabilities, including those with Down syndrome. With the right support they can be clean and dry to start school and many will be clean and dry at a younger age than this, particularly if reminded to go. Furthermore, those who toilet train at a younger age may be less likely to have bladder problems later in childhood.
Bladder & Bowel UK have produced lots of resources to support families to start working on the set of skills that children need to toilet train from around their first birthday. The leaflets are all available on the Bladder & Bowel UK website at https://www.bbuk.org.uk/toilet-training-resources/
Constipation is one of the most common continence issues experienced by people across the UK. Children and adults with Down syndrome do appear to be more likely to develop constipation. Not fully emptying the bowel can increase the risk of soiling (faecal incontinence), of urinary tract infection, abdominal pain, poor appetite and low mood. Therefore, constipation should be treated. Laxatives are usually the first-line treatment for children. Diet and fluids may be helpful first for some adults, although many will also need laxatives. Everyone with constipation may be helped by sitting on the potty (for smaller children) or toilet (for older children and adults) in the correct position. Sitting with feet flat on a firm surface, knees higher than hips and bottom well supported, can help relax the pelvic floor and achieve complete bowel emptying.
If you or someone you care for with Down syndrome appears to have difficulty with their bowels, then do speak to their healthcare professional. There is more information about constipation in children on the Bladder & Bowel UK website at https://www.bbuk.org.uk/bowel-resources/. There is information on constipation for adults, including easy read information at https://www.bbuk.org.uk/bowel-resources-adults/.
Bedwetting is also a common condition in childhood and can persist into adulthood. Treatment should be available from a child’s fifth birthday, if they have been toilet trained in the day for at least six months. Ask your healthcare professional for support if this is an issue for you or someone you support with Down syndrome. There is information about the causes of bedwetting and its treatment on the Bladder & Bowel UK website at https://www.bbuk.org.uk/bladder-resources/ and also on the website at www.stopbedwetting.org. There is easy read information on bedwetting at https://www.bbuk.org.uk/wp-content/uploads/2019/06/Easy-read-Bedwetting-2.pdf
Having a bladder or bowel issue can have a negative impact on many areas of life. Children, young people and adults with Down syndrome should be encouraged and supported to make decisions that allow them to live in the right way for them. That includes with decisions related to healthcare. Talking about bladder and bowel is not always easy for any of us, which can make it difficult to find support. This is why Bladder & Bowel UK provide information on their website, including for people with Down syndrome so ‘we decide’ can be a reality when it comes to bladder and bowel issues.
Positive About Down Syndrome
Bladder & Bowel UK are proud to work with Positive About Down Syndrome to promote toilet training. For more support and information visit the following closed Facebook pages for families whose children have Down syndrome:
DSUK Going POTTY! Toilet training advice 4 children under 5 with Down syndrome at https://www.facebook.com/groups/219984462212935
DSUK Toileting issues 4 children & young people with Down syndrome aged 5+ at https://www.facebook.com/groups/269642can you direct to web site we are trying4470414491
Bladder & Bowel UK provide information on bladder and bowel conditions for anyone affected by a bladder and/or bowel issue on our website. To receive the Bladder & Bowel UK free quarterly electronic newsletter for the public, which is full of interesting articles, suggestions and information for people affected by bladder and bowel conditions, fill in the form on the ‘contact our helpline’ link on the Bladder & Bowel UK website at https://www.bbuk.org.uk/ and ask to be added to the mailing list.
To contact our confidential helpline, fill in the form at https://www.bbuk.org.uk/. If you do not have access to the internet phone us on 0161 214 4591.
For more information on World Down Syndrome Day, visit: https://www.worlddownsyndromeday.org/