Caring for kids with disabilities and difficult toileting behaviours

There is plenty of research telling us what most of us already suspected; that parents of children with disabilities are much more prone to stress, anxiety, depression and relationship strain than other parents.

We also know that the level of social and community supports these parents receive is a major determinant in how well they fare.

The most recent Australian Bureau of Statistics (ABS) census reported that one in 11 children aged between five and 14 had some form of disability – more than half with severe or profound limitations.  That equates to about one in 20 children.

The parents of these children make up a sizeable portion of the 2.7 million unpaid carers across Australia who look after our most vulnerable citizens, including the 140,000 who need help with bladder and bowel control.

To draw attention to the plight of carers of children and adults with incontinence, the Continence Foundation of Australia has this year turned its focus on carers. The Foundation is about to launch a national campaign, Tell someone who cares: phone 1800 33 00 66, during World Continence Week (June 22-28).

Parents are often overlooked when the term ‘carer’ is used in this context. Yet the majority (63 per cent) of children’s disorders are mental or behavioural.  This includes conditions such as autism, ADHD, intellectual disability and delayed development– all of which can have serious implications for bladder and bowel control.

Children’s continence nurse Janine Armocida, who is also a consultant on the National Continence Helpline, said parents were often exasperated and desperate by the time they phoned the Helpline.

Some of the more challenging behaviours parents sought help for, she said, were when children held on (avoidance) for unreasonably long periods, handled their faeces, soiled or wet themselves well beyond toilet training age , or were afraid to use the  toilet.

“We can help parents identify possible causes for some of these problems so they have a starting point from which to take some new approaches,” Ms Armocida said.

For example, the precursor to toilet avoidance was often found to be a painful bowel motion resulting from constipation, she said.

“If you suspect constipation, have your child’s bowels checked out by your doctor or continence nurse.”

Fear of the toilet may be a sensory issue for children with autism, she said. ”They may not like the sound of the flushing toilet, or feel that the toilet seat is too cold, too hot or too hard. By trying to identify the cause of their fear, parents may be able to make a few alterations to the toilet environment,” Ms Armocida said.

Explaining to parents why some children might handle their faeces was a significant first step towards modifying their behaviour, she said.

“Some children handle their faeces because they can feel it coming out, or because it feels uncomfortable in their rectum. This too, can often be associated with constipation. Other children play with their faeces because they like the tactile sensation, in which case products like playdo or kids’ slime might be introduced to their play.”

Ms Armocida reassured parents that there was much that could be done to support parents trying to cope with challenging toileting behaviours.

“We can also put parents in contact with a specialist continence service in their area when they phone us at the Helpline,” she added.

“As with all children, it’s important to observe your child so you know what may be holding them back; sometimes recording their bladder and bowel habits helps to give us a pictorial of what is happening. And remember, stay calm, be positive, reward good behaviour and ignore other behaviours.”

The Tell someone who cares; phone 1800 33 00 66 campaign is supported by Carers Australia and includes the launch of new resources, dedicated web pages and short videos on the Continence Foundation website that  outline the available support services, including the National Continence Helpline (1800 33 00 66).

Ms Armocida recommended a number of excellent resources already available for parents of children with disabilities:

• One Step at a Time; a parent’s guide to toilet skills for children with special needs available from the Victorian Continence Resource Centre (03 9816 8266),
• Tom’s Toilet DVD available from the South Australian Government (13 23 24),
• Toilet Training for children with special needs app from iTunes, and
• One Step at a time Toilet Tips from Google Play

For advice about your child’s toileting behaviours, information about financial assistance for the purchase of products and referrals to health and support services, phone the free National Continence Helpline on 1800 33 00 66.

References

1. Reichman N.E., Corman H., Noonan K., 2008, Impact of child disability on the family, Maternal and Child Health Journal, 12(6):679-683.
2. Isa SN et. al., The impact of children with disabilities on parent health-related quality of life and family functioning in Kelantan and its associated factors. J Dev Behav Pediatr. 2013 May;34(4):262-8.
3. ABS 2003 and 2009 Survey of Disability, Ageing and Carers (SDAC).
4. Carers Australia.
5. Incontinence in Australia, Australian Institute of Health and Welfare, 2009

(Source: Continence Foundation of Australia)