We need to talk about toileting

Orange brushstroke drawing of a leaf.

When your child can’t see or hear, how do you even begin to teach her to use the toilet? Kiera has complex needs but her multisensory impairment is what made toileting really hard for her. Her mum Ashling makes no bones about it: she felt alone and she definitely couldn’t talk to anyone about Kiera’s smearing. But she kept going, believing in Kiera and using her knowledge of Kiera to guide her. Read Ashling and Kiera’s story.

Ashling and Kiera

Kiera was born in Bermuda 16 years ago, and now lives back in the UK with her parents Ashling and Nick. She has no vision and no hearing and communicates using tactile signing. She has a sleep disorder and a cyclical mood disorder that considerably affects her life.

Ashling began to teach Kiera to use the toilet when she was about five, even though it was hard to know where to start as they had no support. But, says Ashling, “I spent every day with Kiera and I knew she had the capability of learning. It was trying to find the right way of doing it.”

Ashling used to spend hours in the bathroom with Kiera, sitting her on the toilet to wait for her to pee or move her bowels. But Keira held on even if she was desperate to go: it was impossible to explain to her what the toilet was for. Their breakthrough was discovering that if Ashling took Keira out to the swings at this point, the moment they got home they could sprint to the toilet, Keira would let go, and she began to understand the connection between needing to pee and the toilet.

Night-time was more difficult because Keira always opened her bowels at night – like many children with complex needs she suffered from severe constipation and took laxatives. “That led to a year of night after night of Keira opening her bowels and smearing, because of course she was interested. She wanted to know what it was. Scrubbing faeces off the floor constantly was enormously difficult. We went through a stage of thinking it was our fault, that we were giving her a mixed signal by putting a nappy on her at night to prevent an accident. We had to take a deep breath and remove the nappy and that probably helped us most, though we had to continue with the scrubbing night after night, and it’s one of the most wearing things.”

“It was a really long haul – but she finally got there”

There were few people Ashling could talk about Keira’s smearing with, she says: “Nobody really wants visions of anybody scrubbing stools off a floor or a wall or a bed. It is soul-destroying and people don’t understand that you’re trying really, really hard, and you’ve got everything else going on. You know it’s coming and that you’ll have to go back in with your gloves and your bleach and clean everything up and stay really patient with the child and try to teach them that this isn’t what we do, that we go to the toilet. It was a really long haul – but she finally got there.

“I want people to know that toilet training is difficult. It’s not a quick fix and it doesn’t happen over-night. And we need to make it ok to talk about smearing, to break down what is actually going on with the child. I’ve only ever had that conversation with people I’m really close to.”

A few hints on toileting

  1. This might take time. It probably won’t be easy but you are not alone and your experience is normal.
  2. Start as early as possible. Putting toileting off won’t make it easier.
  3. Prepare well. Think about how you’ll do this, and what you’ll need.
  4. Be really clear about what you want your child to do. Take it step by step, from knowing it’s time to use the toilet through to washing hands afterwards.
  5. Take advice but know your child and what will help them best.
  6. Be positive: it can be hard to stay patient, but try praise and celebrate, not to blame.
  7. Talk to everyone who works with your child so you are all consistent.
  8. Check there is no medical or health cause for any problems.

Where to find help

Organisations specialising in toileting

UK’s leading child continence charity. Offers training, online resources and a shop for continence products.
Free helpline: 0808 169 9949

Bowel and Bladder UK
National service for all people with bladder and bowel problems, has specialist children’s continence advisors, information and advice.
Helpline: 0161 607 8219

Charity for children with brain conditions offers training and resources on toileting.
Helpline: 01267 244 200

National Autistic Society
Offers training in toileting for professionals and for teams that can be tailored to specific needs. While they are autism experts, they have considerable knowledge of how sensory needs affect toileting.

Read the full article in our magazine Talking Sense.

Find out more toileting tips and read Sue and James’ story.

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