Episode 7 – Helping disabled children achieve continence

This is a 14 minute listen.

Resources signposted in this episode:

Here is a transcript of Alina and Fiona's discussion:

The theme of this podcast is how you can help disabled children achieve continence.

Fiona: I've been working specifically in children's continence for 20 years now and as a child and adult nurse fort 42 years. During a ten year role in a special school, I realised that continence in children with additional needs was poorly resourced, poorly understood and often left unchallenged.

Can all children become toilet trained?

Not necessarily, but apart from a few exceptions-( that is generally children that don't have the correct nerve connections,) then my experience has shown me, we cannot really predict who will and wont, so I believe it is important all children are given the opportunity regardless of their disability.

What are the clues that families need to look for?

I have found that trial and error is a pretty good approach. But first of all a good assessment is important, to exclude constipation. Ensure the child is passing a soft, smooth poo, most days. Hard infrequent poos will cause problems by pushing against the bladder, squashing it and stopping it filling well. Also hard, fat, knobbly poos will usually cause a child to hang on to them, fearing the pain and leading to ‘stool holding’.

Next do a check, to see if they able to hold wee for at least an hour- if they are dribbling wee most of the time, they are not ready yet. But check again in a few weeks and keep re checking.

What else does the child need to be able to do at this stage?

We need them to be able to sit on a toilet or potty- safely! Potty/toilet is a choice for families to think about. They need to feel secure, with their feet supported, so that their knees are nice and high- as high as their belly button is best. If you have access to an Occupational Therapist, they are great at helping with this.

They don’t need to be able to ask for the loo, pull their own clothing up and down or wipe their own bottoms - we can work on that later.

How do we get them used to the idea?

I have found the earlier we start the preparation the better. Sitting every child on the potty- however briefly- maybe at most of their nappy changes, once they are able to sit, prepares them . They are less likely to develop fears and anxieties around sitting on a cold, hard surface with a bare bottom. Also one day they may accidentally do something in the potty, you can respond with great enthusiasm- that is the start of continence.

What else can I do?

Modelling the good behaviours that you want your child to adopt - like drinking plenty are really valuable. Perhaps let them see you on the toilet, look at what you do and then hear you praising yourself for what you have done?
There are some great books available, to start conversations or interest in poo and wee.

Why should I bother if my child will always need carers?

Would you prefer to use a toilet on your own, or have a squashed poo wiped off you by somebody you may not know -Sometimes having to sit in it for a while due to lack of suitable changing facilities. Having to pass it against cloth in a chair with more chance of getting sore, constipated or having a wee infection? Also in hot weather to be wrapped up in plastic and wadding. Would you prefer to be given the chance?

That is without even discussing the financial and environmental considerations.

When do we need to start?

There has been recent research, showing that later toilet training, leads to more difficulties with bladder control and emptying- 21 to 27 months may be the optimal age. By leaving our disabled children even later than their peers, are we not setting them up to fail, making life even more difficult? They have mainly the same bladders and bowels- just different understanding. Lets start all children earlier.

When then?

As I said before, put babies on potties once they can sit, the position is great for emptying. Modern nappies are so comfortable for children- the ultimate portable toilet! The longer we leave them in them, the more they realise it is an easy life for them and they get attached. We are not exerting pressure on the child by introducing the potty, just positivity and a chance to start the process.

What else can we do to help them get it?

Lets make changing happen in the bathroom- helps the child make the link. Once they are able to sit on the potty or toilet, start cleaning them from behind as they will do in the future, get rid of the changing mat. Most of us manage perfectly well that way.
Tip the poos from the nappy down the loo, say ’Bye bye Mr Poo’ and other fun things! Try not to say negative things like ‘poo, that stinks’! more ‘that’s a beautiful poo, well done’.

You may need to make the toilet a place they want to be, with familiar pictures and items, particularly if they have strong sensory preferences.

How do we get them to let go of the poo or wee whilst sitting there?

We need the child to feel stable and secure in order to relax. So don’t be in a hurry and keep calm and positive. Getting them to exhale by tickling them or silly rhymes may help. I find blowing games very beneficial, bubbles, party blowers, mouth organs, windmills ,a feather on a length of cotton and your own blowing ideas, will help the child to release- be ready with an appropriate and instant reward- that may be praise, you doing a silly dance, ‘high 5’, a sticker, chocolate or 20 mins with their favourite toy- it has to be something your child loves to have effect.

The reward will help them to understand they have done something great, making the links between your words, their feelings and how to gain more rewards. It is good to keep those treats just for the continence- so they don’t find easier ways of getting them.

What if families feel they may have left it too late?

Oh it is so worth trying, whatever their age. Some children may not have realised there was an alternative to their nappy. They have used it as a portable toilet, because it was all they were offered. I have sometimes found this when trying to help with leaking nappies. The child is holding a large wee, but releasing it in one go- their pad cant absorb it in time. Using the timing we were able to start timed toilet visits, with success. He had great control.

Some families find it easier to manage their child in nappies - because of limited facilities.

Have you looked for somewhere to change an adult in town? Easier if they can sit on a standard or disabled toilet. A person in continence products will need to be helped, their parents may not always be around to do that. Requiring help with intimate care and needing specific equipment, limits options for social and learning experiences. The more independence we can achieve, the safer we are. Then we free up facilities and staff for those that really need their help.

If there are inadequate toilets anywhere, we all need to join in campaigns like ‘ Changing places’ to improve things for others.

What’s your key bit of advice for anyone listening?

This may be one of the most important things your child can achieve, give them all the help you can.

You won't do any harm by trying, but you may do the child a disservice if you don’t!

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