Rubinstein-Taybi syndrome Readiness for Toilet training Charlotte Mawby Independent Paediatric Continence Nurse May 2016 charlotte.mawby@outlook.com

Key points Assessment : Is your child ready Plan: Toileting program Support: child – family – staff Referral: if required

Skills not disability

What is normal usual age a child gains control Control of bowel asleep ~ 1 yr Control of bowel awake ~ 2 yrs ? Control of bladder awake ~ 3 yrs Control of bladder asleep ~ 5 yrs 4

Habit trained or toilet regulated (Clean and dry when supported by adult) Uses the toilet when taken but does not indicate or request to use it Usually develops later into independent toileting (inline with other developmental milestones)

Why some children struggle 1-2% have an underlying organic cause Limitation due to Physical / Learning abilities Healthy bladder & bowels Equipment Realistic expectations Appropriate teaching resources Offer toilet training support Behaviours & Compliance

Anatomy rectal and anal sphincter Empty

Anatomy rectal and anal sphincter During defecation

Anal sphincter mechanism during defecation

Drinking habits in children Often limited fluid intake at breakfast Little or no fluid taken during school day Fluid intake on return home until going to bed: reduced daytime opportunities to practice toileting skills very wet night nappy

Daily intake 5 years 10 years 15 years 1000 mls 1500 mls 2000 mls Age Quick reference 5 years 10 years 15 years 1000 mls 1500 mls 2000 mls Age Litres 6 drinks a day 5 drinks a day Child 1-3 0.9 150 mls 180 mls 5 1.0 170 mls 200 mls 8 1.3 220 mls 260 mls 10 1.5 250 mls 300 mls 12 1.7 280 mls 340 mls 15 2.0 330 mls 400 mls 13

Healthy Bowels what type how often Size – Diameter  4.5 cm pain, distress toilet, nappy, pants pants: clean ~ soiled medication Normal type 4 ~ 3 3 x a day to 3 x a week

Colon – mega colon ‘diameter of stool’

www.promocon.co.uk in section publications

5 point Toilet training readiness assessment Ability to sit on the potty / toilet appropriately Bladder to hold wee for at least 1 hour Bowel that is not constipated Some awareness of being wet Some awareness of what toilet training is about Ref: Continence promotion for children with learning difficulties. J Rogers. (Shiloh healthcare)

abilities / skills mobility dressing / undressing skills response to basic commands indicates needs ~ favourite dvd, books, foods, soiled, wet any appropriate use of potty / toilet abilities can be hampered by behavioural issues

Equipment

Equipment

Specialist equipment Smirthwaite Rifton: HTS Rifton: Blue wave

Accessible toilets www.radar.org.uk Radar key www.changing-places.org

Complexities of toilet training Carer to understand / predict child’s needs Developing self help skills: door opening removing & replacing clothing getting on / off the toilet toilet sitting (1 minute for each year of age Max. 10) use of toilet paper flushing toilet wash and dry hands Keep the boys sitting until bladder & bowel routine is established

Advice Appropriate fluid intake Routine: take to toilet at regular intervals (5-6 x a day) Sit & relax – bottom on toilet seat, in order to perform Extra sitting time after meals to encourage bowel action Don’t rush, wait until finished

Disposable Nappy: Slip: Form Pants: pull ups Comfort: Flex Tena 4 men

rewards

Teach hand over hand wiping Bottom wiping Teach hand over hand wiping

Washable products Cudri : Abena : Ganmill

Swim wear Incy wincy Ltd In-confidence PHP baby ERIC

Toileting behaviours Constipation  Poos in nappy or pants In the play ground, behind the sofa Smearing in nappy, pants, wall Where are soiled nappies / pants changed Lying down / standing up Regular toilet sitting for boys & girls Early intervention - to change behaviour patterns Child to stay in bathroom until routine is complete, assisting with bottom wiping, flushing, hand washing

Consistency - Behaviours Regular toilet sitting 1 minute for each year maximum 10 minutes Child must understand desired behaviour Reward desired behaviour: sitting > performing Give praise/ reward - desired behaviour Agree a reward system - keep it simple Make it fun

Targets Communication - verbal & pictorial prompt Child to go into toilet area / cubicle Assist with removal of clothes Getting on / off toilet Appropriate toilet sitting Bottom wiping Assist with replacement of clothes Hand washing

Working towards success Include toileting into the Childs Individual Education Plan / Statements Resources to aid communication Aids for safety & comfort when using a toilet Access into and onto the toilet Agreed & written ‘care plan’ – all care settings Agree use of appropriate products: washable ~ disposable 37

Facilitating toileting program Ensure: Healthy bladder & bowels Appropriate equipment. Provision & usage Written information, helps ensure consistency in all care settings Support for training in all care settings On going support, assessment & planning

Toileting Plan - 1 Agree- routine – regular toilet sits getting up arrival at school mid morning before / after lunch before home time before evening meal before bath / bed

Toileting Plan - 2 Agree communication: spoken, signing, PECs, visual timetable, talking photo album Warning time – prior to Visualisation of sitting time – egg timer How sitting time will be increased Reward: verbal – item – object

Gauging success How many wet – soils per day Any reduction/increase in wet or soiled clothes Indicates when wet / soiled Can stop & start - in pants on toilet Change in bowel routine Ability to learn v behavioural issues Won’t sit, won’t wear pants, won’t ………

Any questions ?

Additional support ERIC 0845 370 8008 Help line: Education and resources for improving childhood continence Promocon 0161 834 2001 Promoting Continence and product awareness

Resources Education and Resources for Improving Childhood Continence www.eric.org.uk product catalogue Bedwetting: a guide for parents. ERIC www.wateriscoolinschool.org.uk www.bog-standard.org www.standards.dcsf.gov.uk/eyfs/resources/downloads/including_me.pdf Including me

www.promocon.co.uk/talkaboutpotty.pdf (Rogers.J. 2007) Resources www.promocon.co.uk/talkaboutpotty.pdf (Rogers.J. 2007) www.promocon.co.uk/talkabouttoilet.pdf (Rogers.J. 2004) www.promocon.co.uk/talkaboutdaytime.pdf (Rogers.J. 2005) www.promocon.co.uk/talkaboutconstipation.pdf (Rogers.J. 2004) www.promocon.co.uk/Talkaboutbedwetting.pdf (Rogers.J. 2004) 45

Resources Books My very own potty time –girls / boys Big girls / boys use the potty The potty book for boys Potty time training pack DVD Bear in the big blue house Sesame street: Elmo’s potty time Potty power I gota go!

Name Class Teacher Drinks 9 :00 : 10:40: 12:20 14:40 Arrival at school : Break : after lunch : before home Equipment Targets Communication - verbal & pictorial prompt Child to go into toilet area / cubicle Assist with removal of clothes Getting on / off toilet Appropriate toilet sitting Bottom wiping Assist with replacement of clothes Hand washing Record - toilet activity / progress

Name Class Teacher Drinks Equipment Behaviours in toilet area Behaviours when pads are changed Concerns about introduction of toileting program Record - toilet activity / progress

One step at a time A parents guide to toilet skills for children with special needs Continence Foundation of Australia http://www.continencevictoria.org.au/resources/children/