There are eight core principles to the Convention and these are:

1. Respect for dignity, for the rights of the individual with a disability to make their make their own choices
2. Not to be discriminated against
3. To be allowed full inclusion and participation in society
4. To be respected and accepted as a human being who is a unique individual
5. Equality of opportunity
6. Accessibility
7. Equality between men and women
8. 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

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

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

Contact us

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/

The post World Down Syndrome Day 2021 appeared first on Bladder & Bowel UK.

These have been written in conjunction with PADS (Positive About Down Syndrome) to help future families and professionals have a better understanding of children with Down syndrome. Our very own June Rogers MBE, Children’s Specialist Nurse at Bladder & Bowel UK has written a piece called ‘Dear Future Heath Visitor’. June has 35 years’ worth of experience toilet training children with Down syndrome.

Dear Future Health Visitor…

Dear Future Health Visitor and Children’s Continence Nurse,

You have booked a number of home visits for today and I am number three of the children on your list. I understand you are new in post and have not had a child with Down syndrome on your caseload before, so you are not sure what I can achieve or what advice to give my mummy.  You’re probably nervous as to what to expect of me, how my mummy will be and worried about not saying the wrong thing.  Don’t worry – you’re not the first and won’t be the last!!  When you arrive at my house you are indeed a little anxious about what you are going to say to my mummy and knock on the door with trepidation, not knowing what to expect.

My mummy opens the door and invites you in. She is happy to see you and is keen to introduce you to me, her beautiful clever boy. She goes off to make you a cup of tea while you take a seat and have a quick look at me, while I play in the corner of the room. What you see is a child who is not yet talking and not really walking, so immediately your thoughts are that I have learning, and physical disabilities, so am going to struggle to learn new skills. That is what you see.

What you don’t see is what my mummy sees – a child who is keen and eager to learn. Who maybe sometimes struggles and takes a little longer to learn new skills but is enthusiastic about life and loves to engage with adults. You have already labelled me in your head as having ‘special needs’ and therefore limited me by making assumptions and decisions as to what I will and won’t be able achieve or do.

You have come to carry out a routine assessment and have pages of questions that need to be asked and boxes that need to be ticked, so I know you are keen to get started. You go through the pages and ask the standard questions. As I had not been saying a lot of words you see that I had been referred to the speech and language therapist. However, even though I don’t say a lot, I understand everything my family say to me and I love looking at books and pointing to different pictures. I already have great empathy for people, and I know if anyone is happy or sad. Mummy asks me to show you my favourite book and you are surprised when I pick it up and show it to you.

“That’s clever” you say, and I give you a big smile and then you smile back. You start to relax.

I was late sitting and am just starting to walk so you check with mummy that I’m seeing the physiotherapist. What you haven’t seen is my determination to succeed and how I keep practicing my walking by holding on to the furniture. However, you watch as I try to stand up and give you the book – it takes several attempts, but I eventually succeed. ‘He is a determined little fellow’ you say to mummy with some surprise. “Oh, he knows what he wants” says mummy “and works hard to try and get it”.

You tick some more boxes on the form. The assessment is nearly complete, and you get ready to leave. Then Mummy asks you about potty training, and I can see you’re quite shocked – because you clearly think that I am “not ready” and you tell my mummy that. It is not on your checklist list and you had presumed that potty training would be something that would be tackled ‘later’.  After all, I can see you’ve assumed that a child who can’t talk or walk can’t possibly be ready to be toilet trained.

What you don’t know is that many children with Down syndrome, can be toilet trained at the same age as their typically developing peers. Toilet training involves a lot of skills, which can be broken into simple steps. It can take me some time to learn new skills, but with lots of practice I can usually manage to achieve them. However, unless people give me the opportunity to learn new skills how can I achieve anything? Lots of children (especially boys!) can struggle with potty training and will need some help, so helping me will be no different than any other child who is not yet reliably clean and dry.

Mummy is keen for me to be toilet trained for when I start school. She tells you that I already sit on the potty after meals and now mostly do all my poos there (and the occasional wee!) and have very few ‘dirty’ nappies. I can see you’re surprised – Gosh, you think – this regular potty sitting is something you don’t even suggest to parents of ‘typically developing’ children. This makes you think that gradually introducing regular potty sitting is perhaps something you should be advising all parents to do.

Mummy points out to you that I have been referred on to other professionals for help with walking and talking so wonders if there is anyone who can help with toilet training. This gets you thinking that perhaps you can give mummy the same advice that you give to other mummies about potty training. Something that you didn’t even think about before now. You tell mummy that you will also speak with the children’s continence nurse, who can provide some extra advice and information, as necessary.

At the end of the visit you come to realise that I am not really unlike any child on your caseload. After all, all children are individuals with differing needs and abilities. As you leave through the front door and say goodbye, you now don’t see a ‘special needs’ child, you now see me!

The third little boy on your list who needs you to have high expectations.

There is a closed potty training Facebook group for parents of and professionals working with children with Down syndrome in the UK aged 5 and under. If you are looking for further advice and support this Down Syndrome Awareness Month, please visit: https://www.facebook.com/groups/219984462212935

The post ‘Dear Future…’ – Letters for Down Syndrome Awareness Month appeared first on Bladder & Bowel UK.

Things that help with toilet training are:

• Trying to encourage your child to drink plenty of water-based drinks (about a litre a day for children aged 2-3 years old) and try to make sure they have a healthy diet, including fruit and vegetables
• Changing children in the bathroom encourages them to associate wees and poos with toileting, particularly if any poos are tipped into the toilet.
• When children can stand up on their own, it is a good idea to change them in a standing position. This way they can be more involved in pulling their clothes up and down and with checking their nappy to see if it is wet or dry, soiled or clean.
• Making sure that everyone uses the same words for wee and poo, helps prevent confusion
• When children are able to sit independently, then they can start to sit on the potty or toilet. They should sit for a very short time to start with (maybe just a few seconds), but should be praised for doing so and can be involved in checking to see if there is any wee or poo there. To start with the children are learning to sit and any success is a bonus!  As they learn to sit, they can be encouraged to sit for a bit longer and then the number of episodes of sitting in a day can be gradually increased.

It is important to remember that any child can have a problem with their bladder and or bowels.

The most common problems are delayed toilet training, constipation, day time wetting and night time wetting.  If any of these occur in a child who has Down Syndrome they should be assessed and appropriate advice or treatment offered. If you have any concerns about these problems in a child with Down Syndrome, then talk to their GP or health visitor.

There is information and resources about children’s continence, including toilet training on the Bladder & Bowel UK website.

Bladder & Bowel UK also have a confidential helpline for parents, carers and professionals. You can send an email to: bladderandboweluk@disabledliving.co.uk or contact us by telephone on: 0161 214 4591.

The post Top tips for toilet training children with Down Syndrome appeared first on Bladder & Bowel UK.