Toileting: Sue and James’ story

A hand on wood. Toileting: Sue and James' story.

James is 13 and loves life but really doesn’t care about using the toilet. Sound familiar? So many families say the same. If their child has complex needs and a multisensory impairment, how should they teach them the skills of toileting? With very little help, James’s mum Sue kept on going even when professionals told her to give up. It hasn’t been easy, but this summer, James made a breakthrough. Read Sue and James’ story and get some tips on toileting.

Sue and James

Sue’s son James was 13 in July and she says, “He’s a really happy, cheery little boy.”

James is registered blind although he has some useful vision, and he uses hearing aids. He has physical disabilities that make it hard for him to stand, and severe learning difficulties.

Sue has had no practical guidance about toileting for James. The workshops she was offered didn’t feel relevant, “so we’ve been doing our own thing, really”. One challenge is James’s physical disability, but just as difficult was the fact that as Sue says, “He didn’t give a monkey’s if he was sitting in a pile of poo, he just didn’t care.”

But Sue felt that toileting was worth pursuing. “It would be more dignified,” she says. She fought for James to have a specialist toilet seat that he can be strapped in and comfortable on, and after many years James now does about seven or eight out of ten poos in the toilet. He usually wees at the same time but isn’t dry in his pads.

“The pads are so absorbent now he doesn’t feel the wetness and discomfort. We did get advice several years ago to just take off the pads but that’s an awful lot of washing. That’s not practical. And he doesn’t mind being wet, even if his gastrostomy feed leaks and he’s soaked.

“He is very delayed in his learning but he does learn eventually. If he does a pee we have this little toy trumpet, it has red, yellow and green, and so we have great hilarity – he presses the end of the trumpet if he has a success and he has a lovely musical sound as a reward.”

The occupational therapist working with James said that they should give up on toileting and let him be incontinent in his pad. But Sue is determined, “we’re doing it for his dignity and respect.” And – after a long period of multiple urine infections and explosive diarrhoea that not only filled his pads but also covered him – using the toilet regularly has finally meant that James empties his bowel properly and simultaneously also empties his bladder properly, and that has ended the cycle of urine infections.

James has also made unexpected progress during the COVID-19 lockdown. “We were able to get James a more comfortable seat for the toilet,” says Sue, “and he has been able to spend more time on the loo, around 20 minutes, than is practical at school. As a result he has only been soiled twice in 12 weeks, which is a huge step forward for him.”

To other parents, Sue says, “Just be positive, give your child realistic goals and know it’s not going to happen overnight. Talk to other parents – they’ve been the best source of advice – and get the school on board.”

Stages of toileting

When to start

  • Your child may not give you any hints that they are ready to learn to use the toilet, so you may need to take the initiative. Watch out, though, to see if they seem distracted or fidgety when their nappy is wet or dirty. Do they know they have started weeing or pooing? Can they hold their wee or poo for a couple of hours? These are all good signs that your child is ready, but ultimately you may need to simply decide to start as many children are happy to use a nappy indefinitely.

Teach the skills early

  • There are lots of skills involved in using the toilet independently, from knowing it is time to go, to pulling down your pants, sitting on the toilet, wiping, through to washing hands at the end, with many stages in between.
  • You can start to teach some of these skills very young and build on them to create a whole routine.

Routine is important

  • Try always to change a nappy in the bathroom so your child knows this is where toileting happens.
  • Use the same routine and equipment everywhere, including school.
  • Try to find your child’s natural pattern: when do they usually wee and poo? If you can take them to the toilet at these times you’re under way. (Not all children have a pattern.)
  • If they wet themselves, get to the toilet as fast as possible. Celebrate if they manage a little wee in the toilet then finish the normal toileting routine.

Habit training

  • If your child lacks awareness of their need to wee or poo, or doesn’t understand what the sensations mean, or has limited sensations, you can try habit training.
  • By taking your child to the toilet at set times their body learns to go at these times.
  • Watch your child to see if you can identify the best times.
  • Help your child to feel relaxed on the toilet so they can open their bladder or bowel. Running a tap, or dripping warm water on your child’s leg can help start a wee and blowing up a balloon can start a poo. Holding a special toy can be reassuring.
  • You can use a timer to help your child know when they might have finished if they have little sensation.
  • A vibrating watch or something similar can remind your child to go when they are older.

Step by step

  • If your child has some vision, visual stories and sequences can show every stage of the routine. Make sure they are clear and show exactly what you want your child to do.
  • Always use the same, clear language around toileting and make sure everyone else does too.
  • Don’t try to do it all at once: learn one stage at a time.
  • Try backward chaining: break each skill into smaller steps and start from the last step in the sequence. For example, if you are teaching your child to pull their trousers up, you can pull the trousers to the knees and your child can pull them to their hips. This is great for self-esteem because they are the one who completed the task.
  • You can help your child with physical prompts, gradually withdrawing as they learn the skill.

The bathroom

  • Your child will find it easier if the bathroom is calm and relaxing. Take away any distractions.
  • Make toileting comfortable: use supports, rails, straps, a smaller toilet seat if your child needs them. They need to sit with knees at right angles and feet flat.
  • Make sure everything is at the right height for your child. Can they sit easily? Reach the soap?
  • How does your child feel about the bathroom? Is the soap too scented? The fan loud? The flush noisy? The light too bright or dim? Is the water a good temperature? Your child’s sensory experience of the bathroom can make a big difference to how keen they are to use the toilet.

These tips are based on the National Autistic Society’s Toilet training guide, and tips from Bladder & Bowel UK. There is much more information on their websites, and on ERIC’s website, the UK’s leading child continence charity.

Read the full article in our magazine Talking Sense.

Find out more toileting tips and read Ashling and Kiera’s story.

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