1. Toilet Training Children with Moderate-Severe Disability Lisa Samson-Fang MD Lisa Samson-Fang MD University of Utah and Salt Lake City School District University of Utah and Salt Lake City School District

2. Objectives Background/ literature Background/ literature Practical programming Practical programming Supportive equipment Supportive equipment Adolescent issues Adolescent issues

3. Can This Child Be Toilet Trained? Case I 5 year old5 year old autismautism no functional verbalizationsno functional verbalizations assistance for ADLs. finger feeds.assistance for ADLs. finger feeds. Social quotient (Vineland Social Matuirty Scale) 0.36.Social quotient (Vineland Social Matuirty Scale) 0.36. Case II 7 year old total body involved CP cognitive impairments Communication: differential cries and eye gaze.

4. Is this an important goal? Impacts on Impacts on –independence –caregivers

5. Impacts In the institutional setting. Incontinence reducedIncontinence reduced Decreased linen usageDecreased linen usage Work load minimally decreased.Work load minimally decreased. Therapeutic vs. Custodial role Positive impacts in other areas of self carePositive impacts in other areas of self care Not studied in the home or school setting.

6. Important? Removes negative impacts on social interactions Removes negative impacts on social interactions Increased freedom in more environments Increased freedom in more environments Privacy Privacy

7. Who’s Job Is It??

8. The child with disability Not just an adaptation of the process used for “the typical toddler”

9. Cognitive Impairments Understanding goal AttentionInitiation Impulse control Generalization

10. Birth Cohort Follow-up Wendt et al. Information available on 105 of 132 individuals with mental retardation. Information available on 105 of 132 individuals with mental retardation. Bowel continence. Bowel continence. –70% by age 7 and 80% by age 20. Bladder continence. Bladder continence. –63% by age seven, 83% by age 20.

11. Autism Social motivation Social motivation Language Language Sequencing/attendi ng Sequencing/attendi ng Routine changes Routine changes –The diaper is a routine Sensory Sensory –Sensation – function –Sensory overload –Enjoyment of product

12. Survey of Parents Dalrymple et al. Overall results Training required urine 1.6 yrs urine 1.6 yrs bowel 2.1 years bowel 2.1 years Start at 4-5 years 95% successfully trained 78% self initiated Common issues Regression Night incontinence Constipation Behavioral concerns

13. Cerebral Palsy Motor Issues Motor Issues –Mobility –Safety –Upper extremity function Medical issues Medical issues –Chronic constipation –Neurogenic bladder

14. Preschool children with CP Shaw Population n = 27 2.5 - 4 years old Results 6 dry at entry 7 immediately dry 12 achieved 2 wet Factors in success Higher expectations Routine Shared aim w/ peers More appropriate toilets Access to PT/OT advice

15. CP: Neurogenic Bladder McNeal et.al. 30% prevalence of symptoms Enuresis Enuresis Stress incontinence Stress incontinence Urgency Urgency Frequency Frequency Dribbling Dribbling Difficulty urinating Difficulty urinating History of a UTI. History of a UTI.

16. Urologic Findings Decter et al. Referred population for symptoms Referred population for symptoms Significant findings - 86% Significant findings - 86% –Uninhibited contractions –Detrusor-sphincter dyssynergia –Small capacity bladder –Bladder hypertonia –Periodic relaxation of the external sphincter Improved w/ treatment - 78% Improved w/ treatment - 78%

17. Constipation Bowel training Bowel training –difficult – unpleasant. Affects bladder Affects bladder –Lower volume –Uninhibited contractions Optimize treatment Optimize treatment Monitor for recurrence Monitor for recurrence

18. Multi-modal Treatment Nickel and Desch Positioning and seating Positioning and seating Behavioral issues Behavioral issues Dietary changes Dietary changes Cleanout procedure Cleanout procedure Maintenance medications Maintenance medications Emptying program Emptying program

19. Note: The behavioral protocols discussed are not intended for the achievement of continence in individuals who lack bowel and bladder control (e.g., individuals with spinal cord lesions).

20. The Literature Populations: Populations: –Cognitive disability, autism, physical disability Settings: Settings: –Institutional, school, home Designs: Designs: –Case studies/ small cohorts

21. The Literature Methods: Methods: –Timed and Regular –Group vs. Individual Goal: Goal: – Trained vs. Conditioned –Degree of independence –Attainment of “sub-skills” –Generalize to other situations

22. Most Replicated Azrin and Foxx Induce frequency Induce frequency Timed toilet sitting Timed toilet sitting Positive reinforcement Positive reinforcement Dry pants checks Dry pants checks Minimal assistance/prompt for dressing/ faded Minimal assistance/prompt for dressing/ faded Modeling Modeling Pants and potty alarm devices Pants and potty alarm devices Verbal reprimand- cleanliness training Verbal reprimand- cleanliness training

23. Comparing Methods Smith Individualized regular potting –Monitor child’s rhythms –Toilet when high probability –Stimulus to void is full bladder Arbitrary timed potting: –Set schedule –Stimulus to void is toileting routine

25. Comparing Methods Method Nursing Hours (5 Children, 12 weeks) Intensive Regular Potting 2330 Group Regular Potting 1260 Timed Potting 2079

26. Preschool Setting Richmond Frequent potting (q15minutes faded to q 2 hours over 1 month) Frequent potting (q15minutes faded to q 2 hours over 1 month) Praise, liquid rewards Praise, liquid rewards Brief reprimand and simple correction Brief reprimand and simple correction Self initiation not a goal Self initiation not a goal 4 children 4 children 4.5 hours / day 4.5 hours / day No equipment No equipment Otherwise no change in classroom routine Otherwise no change in classroom routine

27. Weekly Accident Rates Child’s Chronologic and Developmental Age School Accident (per wk) BaselinePostq2hrs CA36m, DA12m 62 CA46m, DA13m 61.4 CA 36m, DA12m 5.30.9 CA=32m DA= 8 m 7.30.6

28. Is continuity important Dunlap et.al. 3 children with Autism (5-7 yrs) 3 children with Autism (5-7 yrs) 1 new to toileting, 2 w/ 2 years of no success 1 new to toileting, 2 w/ 2 years of no success Baseline training program in 1 environment vs. training in ALL environments. Baseline training program in 1 environment vs. training in ALL environments.

29. Results

30. Alarms