Toilet Training for Children with Special Needs
Toilet Training for Children with Special Needs
Project Report
By Rachel Muncey, Paediatric Special School Nurse
1
Toilet Training for Children with Special Needs
Abstract
One of the most important skills an individual can learn is how to use the toilet
successfully and independently (Wheeler, 2007). Similarly, elimination,
washing and dressing have been identified by Roper, Logan and Tierney
(2000) as fundamental activities of daily living that increase independence
and quality of life. Typically developing children establish control of their bowel
at age two and control of their bladder at age three. Thus toilet training is
performed by parents or guardians in the home setting, and/or carers in the
nursery setting.
Researchers have reported that children with an autistic spectrum disorder
(ASD) are the most challenging to toilet train and their difficulties often arise
from a problem called Sensory Processing Disorder (SPD) which affects
almost all who have ASD (Wheeler, 2007). In addition, some children with
physical disabilities have limited ability to perform skills such as sitting,
flushing, and washing hands and are therefore unlikely to reach full toileting
independence. Correspondingly Bhupendra, Masey and Morton (2006) state
that a severe impairment in mobility could delay toilet training. Thus children
with ASD and physical disabilities commonly present in school with
incontinence. There are no standardised guidelines that state who is best
qualified to support children with learning difficulties to attain continence
(Harris, 2004) however Education and Resources for Improving Childhood
Continence (ERIC) (1999) state that the approach should be interprofessional.
Therefore this project aims to develop toilet training in Special Needs Schools
for the aforementioned children, using expertise and input from parents and
professionals across different disciplines.
Background - National
The Royal College of Nursing (2006), state that continence support, advice
and information should be available to all children and their families.
Continence should be promoted though the main aim is to ensure bladders
and bowels are healthy. They state that all children should have a trial of toilet
training, however there are a number of children who will not achieve full
continence. There are no national guidelines for toilet training for children with
special needs though there are many accessible resources available that will
be utilised in this project.
Background - Local
In March 2013 there were four Special Needs Schools in the borough of
Islington in which the need for specialist toilet training was becoming
increasingly apparent. This was due to the range and complexity of children
that attend the schools, and the large proportion of them who had not
achieved bladder and bowel continence. A successful bid was made for
funding from the Florence Nightingale Foundation in order to support more
2
Toilet Training for Children with Special Needs
children with special needs to achieve their potential with regard to toileting
independence. A budget of £3,500 was provided.
There are a variety of health professionals who work with children and their
families who provide input towards toilet training. These include School
Nurses, Occupational Therapists (OTs), Speech and Language Therapists
(SLTs) and Teaching staff. Additionally, Support Workers provide toileting
care to some of the children who access specialist respite and after school
clubs. The professionals listed above are employed by a variety of agencies
including the National Health Service, Local Education Authority, Charities
and Government funded schemes. Toilet training had been initiated in the
past by different workers and in a variety of settings, however little progress
was made and the training had been given up on. It was a challenge for the
many service providers to keep to a structured programme, and often there
was not a named lead professional for distributing a plan and problem solving
when new issues presented. As a result, a primary aim for this project was to
designate lead professionals, and empower all who work with and care for
these children to adapt and follow a scheduled plan for toileting, as this
increases the effectiveness of training (Wheeler, 2007).
Current Local Service

Bladder and Bowel Care Team – No Specialist Paediatric Continence
Advisor, however these are present in other NHS Trusts

Nursing assessments performed annually or when conditions change or
when different continence products are required. Referrals are made for
issues such as constipation and overflow diarrhoea.

No specialist training provided for professionals

Continence pads provided up to a maximum of 5 per day (unless special
circumstances). No padded pants/trainer pants/ car seats available.
These must be purchased by parents.

School staff performs toilet training. There is therapy input such as
PECS/communication boards from SLTs and toilet assessments done by
OTs however this is not joined up.
The financial cost of continence products provided for individuals in Islington
borough is approximately £1,000,000 per year.
Project Aims
o To increase children’s independence with toileting
o To empower parents and staff to implement and develop toilet training
plans
Method
o To increase the knowledge of all those in the multidisciplinary and
multiagency teams regarding continence and toilet training
(Timeline)
o Towith
saveexplanation
money by reducing use of continence products
3
Toilet Training for Children with Special Needs
Participants
Children were identified to be participants who were displaying signs of
readiness for toilet training. These included some of the following:
1. Mental age of more than two years
2. Awareness of being wet or dirty
3. Ability to stay clean and dry for 1-2 hours at a time
4. Ability to stay clean and dry during naps
5. Physical ability to sit on the toilet
6. Ability to cooperate and assist with dressing and undressing
7. Not having any medical conditions that may affect toilet training
(Fleming and MacAlister 2013).
The multi-disciplinary team (MDT) identified prospective participants based
on the above criteria. Furthermore, details of the projects were entered into
the school newsletters and some parents expressed an interest and put
their children forward to participate. In total, 28 children were involved in the
project.
Use of Funding
A large proportion of the grant provided was used to host a 3 hour training
session in order to increase the knowledge and skills regarding toilet
training. The session was provided by a Paediatric Continence Nurse,
employed by the leading continence organisation; Education and
Resources for Improving Childhood Continence (ERIC). 45 staff members
from the following disciplines attended:
o School Nurses
o Occupational Therapists
o Speech and Language Therapists
o Teachers
o Teaching Assistants
o Respite Support Workers
o Midday Supervisors
o Nursery Nurse
o Clinical Psychologist
o Therapy Assistant
o Healthcare Assistant
The information was then presented to parents and caregivers at a parent
support group meeting at each school. Providing training to parents is a vital
component to successful continence training (Kroeger and Sorensen 2010).
The presentations were given by the School Nurses, using the resources
provided by the ERIC Nurse. The Lead Nurse for Bladder and Bowel Care
attended and opened the floor to questions and answers. During this time
some of the assessments listed below in the method were conducted with
parents.
4
Toilet Training for Children with Special Needs
The remaining funding was used for:
o Purchase of the highly recommended book: ‘Toilet Training for
Individuals with Autism or other Developmental Issues’, by Maria
Wheeler
o Purchase of continence products including washable pads and seat
covers
o Nursing agency cover for the special schools in order for
assessments and follow up to be conducted by the School Nurses
Method
Once children had been identified they then underwent a formal
assessment of readiness. The method performed coincides with
recommendations from the RCN (2006) on ‘Supply of paediatric continence
products’ (page 6). The vast majority of assessments utilised were already
available, produced by the local Bladder & Bowel care service and in use by
the School Nursing team.
Firstly, a Paediatric Assessment (see Appendix 1) was completed by the
School Nursing Team with parents. This included the following key features:
o Fluid Intake and Diet
o Bowel Habit and the use of medications
o Development Stage
o Communication and Behaviour
o Mobility, Dexterity
o Environment
The assessment enabled any underlying medical conditions affecting
toileting to be identified, such as constipation. Children could then be
referred to the School Doctor or General Practitioner for review and
treatment if required.
Secondly, a Toileting Chart (see Appendix 2) was provided both to school
and to parents in order to track and record when a child opens their bowels
or passes urine. This chart was adapted from the locally produced chart,
and its suitability verified by the Bladder & Bowel Lead Nurse prior to use.
By requesting both school staff and parents to monitor toileting, it promoted
the concept of shared care and joint responsibility, something that had been
identified as lacking in previous attempts at toilet training. Once this was
completed, a Toilet Skills Assessment (see Appendix 3) was completed.
Again, this enabled assessment of readiness for toileting as it helped to
determine:
1. A maturing bladder that can hold urine for 1½ - 2 hours.
2. A healthy bowel that is not constipated
3. The ability to sit on the toilet for sufficient time.
It was at this stage that some children were identified as unsuitable to
commence toilet training as they either could not sit for an adequate length
of time, had constipation that needed treatment or their urinary frequency
was too high. For these children we were still able to create small targets,
5
Toilet Training for Children with Special Needs
such as to work at encouraging the child to sit on the toilet for longer by
using distraction or a favourite toy. This enabled teachers and parents to
contribute to development of toilet training, even if it was small progress in
very early stages. For these children a Reassessment Checklist (see
Appendix 4) was completed whereby current provision of continence
products was reviewed.
The Reassessment Checklist was also completed for children deemed
ready to commence training. Changes to products could be made to support
toilet training, such as changing supply of pads with side tabs, to pull-up
pads.
For some children, the series of assessments were completed over the
summer holidays, as part of a joint School Nurse and OT home visit. This
again promoted the theme of shared care and enabled the OT to assess the
need for specialised adaptive equipment at home and similar equipment in
school, for example foot stools and grab rails. It was possible to ascertain
the methods of communication used and relay this to the child’s allocated
SLT in school in order to create communication aids used during toileting.
For example some children used a makaton sign for toilet, whilst others
pointed to a symbol. It was also useful to discuss a reward system for
correct use of the toilet that could be developed as a fun incentive. During
these visits a good rapport was built with the child and family, and support
was offered by telephone if needs arose in the future.
Following completion of assessments, toileting plans were discussed with
class teachers and then implemented both in the school and home setting to
maintain consistency. Some parents decided to delay beginning toilet
training due to circumstances, for example the birth of a new child in the
family. This coincides with advice from the Trust’s Clinical Psychologist who
recommended delaying training during stressful times. Each plan created
was child specific and some of these are described in Appendix 5.
Parents were encouraged to regularly inform their child’s teacher of
progress using their home-school communication book, and to telephone
the school nurse, OT or SLT with any queries. The school nurse provided up
to three follow-up telephone calls to troubleshoot further problems and adapt
plans as progress was made.
6
Toilet Training for Children with Special Needs
Results
Of the 28 children that were identified to participate….
1
Child became continent of urine in the daytime prior to beginning a formal
plan. (Number 1 on chart)
3 Children became fully continent during the daytime. (Number 2 on chart)
11 Children developed some new toileting skills but are not fully continent of
urine in the daytime. (Number 3 on chart)
8
Children did not have thorough assessments and plans created as
parents decided not to participate. Progress made is unknown. (Number 4 on
chart)
1
Child could not commence training due to changes with medication.
(Number 5 on chart)
3
Children’s parents felt their child was too young or not yet ready. (Number
6 on chart)
1
Child left the borough and therefore we were unable to continue to
monitor. (Number 7 on chart)
0
Child did not make any visible progress. (Number 8 on chart)
Results
12
11
Number of Children
10
8
8
6
4
2
3
3
1
1
1
0
0
1
2
3
4
5
6
7
8
For the three children who have achieved continence, a total of £6,400 per
year will be saved by the NHS in continence pads that are no longer required.
7
Toilet Training for Children with Special Needs
Case Study
Luke (pseudonym used to maintain confidentiality)
When original assessments were performed with Luke and his Mother in
summer 2013 it became apparent that Luke was very fearful of the toilet
environment and would not even enter the toilet in his home. He wore pads
supplied by the continence team and would not use the toilet. He had had a
previous frightening experience where he had locked himself in the toilet and
then was unable to unlock the door. Luke was displaying many signs of
readiness, such as staying dry for up to 2 hours and indicating when he was
wet. A specific toileting plan was created for Luke that included:
 Removal of the bathroom door at home to alleviate fear of becoming
trapped again
 Mum to change Luke’s pad initially just inside the bathroom, and
gradually take him closer to the toilet each time.
 Once Luke felt comfortable enough, Mum encouraged Luke to sit on
the toilet at regular intervals; after snack and meal times. She would
stand in the doorway encouraging and praising him when he urinated
or opened his bowels in the toilet.
 Whilst toilet training Luke would wear trainer pants so that he had the
sensation of being ‘wet’ if he had an accident.
 School staff also took Luke to the toilet at regular intervals and created
a reward chart for him in school. He was able to use a favourite toy
whilst he sat on the toilet and was rewarded each time he used the
toilet to urinate or open his bowels.
Luke’s Mother said that she identified a big change once Luke felt secure
in the bathroom environment. It took approximately 8 months for Luke to
become continent during the daytime and required both school and his
Mum to provide lots of encouragement, use social stories and reward
charts. Mum says he now goes by himself and sometimes will inform her
that he is going by using the word ‘toilet’ Mum commented that it is brilliant
that he can now go independently and she is very happy.
8
Toilet Training for Children with Special Needs
Quotes from Teachers, Health Staff and Parents
Quote from a Mother:
o I think it’s wonderful because I was afraid he would have all his life in a
nappy so it’s amazing that now he doesn’t!
Quotes from Teaching Staff:
o He is now much more independent and we see his confidence (TA)
o He's generalised his understanding and ability to follow instructions in
toilet training to other situations in class, and he's moved from a single
PODD page that he used for the toilet to a PODD book. (TA)
o The toilet training made him more determined to communicate his
needs. (Teacher)
o We would never be able to do it unless we worked as a team with
parents. (TA)
o It's been such a lovely experience working together with parents to see
what their child can achieve. (Teacher)
o The experience has shown us all never to underestimate what a child
can achieve. (TA and Teacher)
o Unless you give the opportunity, you will never know what a child can
achieve independently. (Teacher and TA)
o I never expected that he would be completely out of pads (day and
night) after 3 months. (Teacher)
o I found the training really helpful and have passed on information to
family and friends too. It’s useful to know correct positioning and for
boys to aim at something floating in the toilet like a ping pong ball. (TA)
o Having training meant that an informed discussion could be had
between staff and parents. There were different expectations between
a parent and staff regarding a child’s readiness and we were able to
explain this to parents based on knowledge gained. (TA)
o It would have been helpful for parents to attend the same training
session to enable an open discussion. (TA)
9
Toilet Training for Children with Special Needs
Results of Training Sessions
A questionnaire was compiled to assess parents’ views on the usefulness of
the information session (See Appendix 6). The results are displayed in
graphs:
Number of parents
Was this session relevant to you and you
child?
4.5
4
3.5
3
2.5
2
1.5
1
0.5
0
1
2
3
4
5
1 - Not very relevant
6
7
8
9
10 - Very relvant
10
Number of parent
Did the presentation have the right amount on
information for you?
3.5
3
2.5
2
1.5
1
0.5
0
1
2
3
4
1 - to little
5
6
7
5 - just right
8
9
10
10 - too much
Number of Parents
Did the session help with your understand of
toilet training
3.5
3
2.5
2
1.5
1
0.5
0
1
2
3
4
5
1 - No
6
7
8
9
10
10 - Yes
10
Toilet Training for Children with Special Needs
Number of parents
Did you find the questions and answer
session with the continence nurse
useful?
8
6
4
2
0
1
2
3
4
5
1 - No
6
7
8
9
10
2 - Yes
Number of parents
Would you recommend this session to
other parents?
10
8
6
4
2
0
1
2
3
4
5
6
7
1 - No
8
9
10
10 - Yes
A different questionnaire was also created to assess staff members’ response
to the training (see appendix 7). The results are:
Can think of children and families in class or on
caseload who are ready for developing toilet
training
1
1 or 2 children – 47%
3 or more children – 53%
0
1 or 2
3 or more
11
Toilet Training for Children with Special Needs
Feel that prioritising toilet training as a functional skill is an
appropriate focus during school time
No
Not Sure
Yes
Feel we have sufficient toilet seats/equipment at school to support
children with toilet training
Yes – 27%
No – 40%
Not Sure – 33%
Yes
No
Not Sure
Understand w hat m y role is as part of the MDT supporting children w ith
toilet training
Yes – 73%
No – 0%
Not Sure – 27%
Yes
No
Not Sure
12
Toilet Training for Children with Special Needs
Have appropriate communication tools and rewards
to support childrn with toilet training
Yes – 50%
No – 25%
Not Sure - 25%
Yes
No
Not Sure
Limitations
There were numerous factors that limited the ability of children to develop
continence and toileting skills. These include:
 Not enough time for the School Nurse, SLT and OT to perform joint
home visits for all children
 Some follow up phone calls for parents were not performed due to
parents missing calls and calling back when School Nurse was
unavailable
 School holidays disrupted routines causing some children delays in
their progress.
 There were differing levels of parent motivation. Some parents were
enthusiastically implementing plans and following recommendations
whereas some parents struggled to implement plans as they felt that
their child was unable to achieve continence or develop skills in this
area.
 Differing levels of teachers’ motivation. Some teachers placed high
importance on developing toileting skills, especially if it was one of the
child’s targets. Some teachers did not see this as a priority.
 Some family circumstances meant that it was not appropriate to begin
toilet training at that time, for example a new baby or a brereavement.
 Staff shortages affected ability to implement plan in school setting.
 Teachers who did not attend training did not feel as confident to
implement plans.
Recommendations

To provide adequate training for both staff and parents regarding toilet
training for children with special needs. If there is a paediatric continence
advisor in the borough then they could provide this. If not, then funding
should be allocated for this to be delivered by an external company such
as ERIC.
13
Toilet Training for Children with Special Needs



To perform initial assessments jointly ideally with parents, School Nurse,
OT, SLT and Teacher.
To create a toileting plan that everybody working with the child is aware of
and can be delivered both at home, school and at respite/play centres.
To provide regular telephone follow up, support and advice.
All recommendations fit within the proposed model of care that has been
developed and is displayed below.
Proposed Model of care for use in Special Needs Schools London wide
14
Toilet Training for Children with Special Needs
Future Plans
The proposed model will continue to be used within the current setting. It can
be developed as services develop and include new assessments as these are
continually updated by the Bladder and Bowel care team.
The model will be used locally in the Special Needs Schools, especially when
new starters begin in September each year
The model can potentially be distributed further through publication in relevant
journals, presentation at conferences and via network groups such as the
Royal College of Nursing School Nursing forum.
Observations made
Personal observations have been made since the training session in June
2013. Parents and teaching staff appear empowered to continue with the
original plans, updating and adapting them as necessary following
discussions with the MDT. Some teachers have used their newly gained
knowledge to take the lead in developing toilet training plans which they have
verified with the School Nurse before implementing and sending to the family.
At one school site the School Nurse left the post so the teachers took the lead
in developing and implementing plans.
For the children that made most progress, they had been identified as ready
when initially assessed. For those who were not showing signs and whose
parents wanted to continue regardless, they gained some skills however did
not achieve continence.
Parents’ motivation played a big part. Even if a child was assessed as ready
to begin toilet training and plans were put in place in school, if they were not
followed at home and the parents did not provide much input then very little
progress was made.
Related research, guidelines and articles
The Whittington Health Librarian kindly conducted a literature search
regarding ‘toilet training’ and ‘children with special needs’. Two relevant
National Institute for Health and Care Excellence guidelines were identified
and taken into account. Databases searched included: CINAHL, Medline, BNI,
EMBASE & PsycInfo and this produced 7 highly relevant articles, and 17
more general articles some of which have been quoted within this report. The
results are in Appendix 8 and can be utilised for further reading.
15
Toilet Training for Children with Special Needs
Conclusion
This project was originally embarked upon as there was no integrated
approach to toilet training within four Special Needs Schools in London. The
aims were to ultimately increase children’s independence with toileting,
empower parents and staff to implement plans and save money by reducing
use of continence products. A grant of £3,500 from the Florence Nightingale
Foundation was used in order to meet the project aims. 28 children
participated and were assessed using adapted resources from the local
Bladder and Bowel care service. Training was provided to the multidisciplinary
team and a parent information session was held prior to commencement of
toilet training. Questionnaire results proved that staff and parents found the
training relevant, helped with their understanding and they would highly
recommend it to others. The toilet training results were extremely positive with
some children achieving full continence and many others developing new
skills. Many of the staff members were pleasantly surprised at the children’s’
ability to develop new skills when they worked together with parents as a
team. For the three children who have achieved continence, a total of £6,400
per year will be saved by the NHS in continence pads that are no longer
required.
There were some limitations to the success of the project including time,
differing levels of motivation, holidays interrupting routines and staff
shortages.
As a result of this project a proforma has been developed as a model for use
across other London Special Needs Schools. This could be distributed to
other schools through a variety of methods and adapted for use in the local
area.
16
Toilet Training for Children with Special Needs
References
ERIC, 1999. Bowel and Bladder Management in Children with Special
Physical Needs, A Guide for Parents. Bristol: ERIC.
Fleming, E. and MacAlistair, L., 2013, Learning to wee and poo in the right
place – Continence problems in children with autism, PowerPoint
presentation, National Autistic Society, London.
Harris, A., 2004. Toilet training children with learning difficulties: What the
literature tells us. British Journal of Nursing,13(13), pp.773-777.
Kroeger, K. and Sorensen, R., 2010. A parent training model for toilet training
children with autism. Journal of Intellectual Disability Research, June, 54(6),
pp.556-567.
Roper, N., Logan, W. W. and Tierney, A. J., 2000. The Roper-Logan-Tierney
Model of Nursing: Based on Activities of Living. Churchill Livingstone
Royal College of Nursing, 2006. Paediatric assessment of toilet training
readiness and the issuing of products. London: Royal College of Nursing.
Singh, B.K., Masey, H. and Morton, R., 2006. Levels of continence in children
with cerebral palsy. Paediatric Nursing, June, 18(4), pp.23-26.
Wheeler, M., 2007. Toilet training for individuals with autism and other
developmental issues. Texas: Future Horizons.
17
Toilet Training for Children with Special Needs
Appendices
1. Paediatric Assessment
Bladder & Bowel Care Service
Paediatric Assessment Form
Patients Details
Name:
DOB:
Parents Name:
Child's position in the Family:
GP Contact details:
NHS No:
M/F:
Address:
Professionals involved in Care :
Postcode:
Phone:
Mobile:
Ethnicity:
Patient’s Borough: Camden
School:
Assessment completed by:
Medical Diagnosis:
i.
ii.
iii.
Brief Medical History:
Islington
School Nurse:
Assessment date:
Medication, including complimentary medication:
Allergies:
Fluid intake
How many drinks in 24 hours?
Diet
Any special diet eaten?
What do they drink?
Do they eat fruit?
Is intake restricted and if so when?
Vegetables?
Beaker
bottle
cup with straw
bottle
sports
Cereals?
Any dietary problems?
18
Toilet Training for Children with Special Needs
Enteral Feeding
Feed:
hours:
Quantity in 24
Water:
Flushes:
Food Allergies?
Bowel Habit
Daily:
Alternate Days:
Less Often:
Laxatives: Yes
No
Suppositories: Yes
Constipated:
Diarrhoea:
Enemas: Yes
Where it occurs: Anywhere
Hides
Development Stage
Has your child ever been dry?
Can they use a potty/toilet?
No
Soiling:
Yes
Type (Bristol Stool Chart):
No
Yes
No
No
Has potty training ever been attempted? Yes
No
If yes, when did they stop?
Can they reach the potty/toilet in time? Yes
No
Does your child know if they are wet/soiled?
Yes
No
Are they able to indicate that they are?
Yes
Are they afraid to sit on the toilet? Yes
No
Are they dry at night? Yes
Wears: nappies
No
Do they refuse to sit on the toilet? Yes
No
No
pull ups
underwear
How many times is the nappy changed in 24
hours?
Communication
How does your child communicate?
Normal speech
Yes
No
Limited Speech
Yes
No
Sign language
Yes
No
No Communication
Yes
No
Other form
Yes
No
Behaviour
Does your child have any behavioural problems related to incontinence? Yes
How does your child manage his/her incontinence at school?
No
How does your child manage his/her incontinence at home?
Any other problems related to incontinence i.e.
Change of school/home:
19
Toilet Training for Children with Special Needs
Birth of brother/sister:
Death or illness in the family:
Marital breakdown:
How bothersome is the wetting/soiling problem
(please tick the appropriate number - 1 being no bother and 10 being very bothersome)
To your child
1
2
3
4
5
6
7
8
9
10
To you as a parent carer
1
2
3
4
5
6
7
8
9
10
Brothers/sisters
1
2
3
4
5
6
7
8
9
10
Mobility
Walks unaided: Yes
No
If no, give details:
Buggy/wheelchair
Yes
No
Able to transfer
unaided
Yes
No
Any other problems?
Physio:
Occupational Therapy:
Orthotics:
Dexterity
Does your child need help pulling
down clothes?
Yes
No
Does your child need help
cleaning/wiping?
Yes
No
Does your child need help readjusting
clothes?
Environment
Toilet location and
At Home:
distance:
Yes
No
At School:
Special equipment i.e. footstool/Ring Reducer/Potty Chair?
Does your child share a room? Yes
No
Are the family in temporary accommodation?
20
Toilet Training for Children with Special Needs
2. Toileting Chart
Bladder & Bowel Care Service
Toileting Chart
Please follow the individual toilet training plan and complete the chart below so that we can see what your child is doing
both at home and school. Record in the 'Nappy column whether the pad/pamts were wet (W) or dry (D), or if the child
opened their bowels (B). Record in the 'Toilet' column whether the child did a wee (W) or opened their bowels (B) on
the toilet. Each time your child has a drink, record it by putting a tick in the 'Drink' column.
Day 1
Day 2
Day 3
Day 4
Day 5
Day 6
Day 7
Date:
7am
8am
9am
10am
11am
12am
1pm
2pm
3pm
4pm
5pm
6pm
7pm
8pm
9pm
10pm
21
Drink
6am
Nappy
Toilet
Drink
Nappy
Toilet
Drink
Nappy
Toilet
Drink
Nappy
Toilet
Drink
Nappy
Toilet
Drink
Nappy
Toilet
Drink
Nappy
Toilet
Time
5am
Toilet Training for Children with Special Needs
3. Toileting Skills Assessment
Bladder & Bowel Care Service Toilet Skills Assessment
Childs Name:
Initial assessment completed by:
Date of Birth:
Date of assessment:
Date
(a) Bladder Function – if bladder emptied
1 More than once per hour (Shade in area 1)
2 Between one - two hourly (Shade in areas 1 & 2)
3 More than two hourly (Shade in areas 1, 2 & 3)
(b) Bowel Function – if
1 has frequent daily soiling (Shade in area 1)
2 Does not always have normal formed bowel movements is subject to
constipation or diarrhoea (shade in area 2)
3 Has regular normally formed bowel movements (Shade in areas 1, 2 &
Date
1
2
3
1
2
3
(c) If night time wetting occurs
1 Frequently – every night (Shade in area 1)
2 Occasionally – some dry nights (Shade in areas 1 & 2)
3 Never occurs (Shade in areas 1, 2 & 3)
1
2
3
(d) If night time bowel movements
1 Frequently - every night (Shade in area 1)
2 Occasionally – some clean nights (Shade in areas 1 & 2)
3 Never Occurs (Shade in areas 1, 2 & 3)
1
2
3
Independence
(e) Sitting on the toilet
1 Afraid or refuses to sit toilet/potty (Shade in area 1)
2 Sits with help (Shade in areas 1 & 2)
3 Sits briefly without help (Shade in areas (1, 2 & 3)
4 Sits without help for long enough to complete voiding/evacuation of
bowels (Shade in areas 1, 2, 3 & 4)
1
2
3
4
(f) Going to the toilet
1 Gives no indication of need to go to the toilet (Shade in area 1)
1
2 Gives some indication of need to go to the toilet (Shade in areas 1 & 2)
2
3 Sometimes goes to the toilet of own accord (Shade in areas 1, 2 & 3)
3
(g) Handling clothes at toilet
1 Cannot handle clothes at all (Shade in area 1)
2 Attempts or helps to pull down pants (Shade in areas 1 & 2)
3 Pulls pants down by self (Shade in areas 1, 2, & 3)
1
2
3
22
Date
Toilet Training for Children with Special Needs
4 Pulls clothes up & down without help (Shade in areas 1, 2, 3 & 4)
4
other components
(h) Bladder control
1 Never or rarely passes urine on toilet/potty (Shade in area 1)
2 Passes urine on toilet sometimes (Shade in areas 1 & 2)
3 Passes urine on toilet every time (Shade in areas 1, 2 &3)
4 Can initiate a void on request (Shade in areas 1, 2, 3 & 4)
1
2
3
4
(i) Bowel control
1 Never or rarely opens bowels on toilet/potty (Shade in area 1)
2 Opens bowels on toilet sometimes (Shade in areas 1 & 2)
3 Opens bowels on toilet every time (Shade in areas 1, 2 & 3)
1
2
3
(j) Behaviour problem that interferes with toileting process (e.g. screams
when toileted)
1 Occurs frequently – once a day or more (Shade in area 1)
1
2 Occurs occasionally – less than once per day (Shade in areas 1 & 2)
3 Never occurs (Shade in areas 1, 2 & 3)
2
3
(k) Wears nappies, pull ups or similar
1 Yes (Shade in area 1)
2 No (Shade in areas 1 & 2)
1
2
(l ) Toilet If
1 Requires toileting aids or adaptations (Shade in area 1)
2 Uses normal toilet/potty (Shade in areas 1 & 2)
1
2
(m) Response to basic commands (e.g. sit down)
1 Never responds to commands (Shade in area 1)
2 Occasionally respond to commands (Shade in areas 1 & 2)
3 Always responds to commands (Shade in areas 1, 2 & 3)
(n) Diet
1 Refuses/unable to eat fruit/vegetables (Shade in area 1)
2 Will occasionally eat fruit/vegetables each day
areas 1 & 2)
3 eats adequate amounts daily e.g. age+5 =grams fibre)
in areas 1, 2 & 3)
1
2
3
1
(Shade in
2
(Shade
3
(o) Fluid intake
1 Drinks poor amount - >50ml/kg per day (Shade in area 1)
1
2 Drinks 50ml/kg per day 4 – 5 drinks per day (Shade in areas 1 & 2)
3 Drinks 80ml/kg per day 6+ drinks per day (Shade in areas 1, 2 & 3)
2
3
23
Toilet Training for Children with Special Needs
4. Reassessment Checklist
QuickTime™ and a
decompressor
are needed to see this picture.
24
Toilet Training for Children with Special Needs
QuickTime™ and a
decompressor
eded to see this picture.
25
Toilet Training for Children with Special Needs
5. Examples of Individual Toileting Plans
Peter’s Plan (pseudonym to maintain confidentiality)
-From 02/12/13 Peter to wear a pair of pants inside his nappy for one
week to get the sensation of feeling ‘wet’. School and home to take note
of any signs that Peter makes indicating he feels wet.
-The school will provide “wet” and “dry” symbols, pants and nappy symbols
and a toilet routine visual to use at home and school.
-From 09/12/13 Peter to wear washable pants not nappies AND:
 Be taken to the toilet every 1- 1 ½ hours
 Peter to sit on the toilet for 10 seconds initially and gradually
increase the time and be encouraged to do a wee and/or open his
bowels
 Peter is given a reward for example foamy soap to wash his hands
with or a toy after sitting on the toilet or using the toilet.
-Parents to request advice and support from teacher and school nurse
when required.
Nathan’s Plan (pseudonym to maintain confidentiality)








Nathan will wear ‘washable pants’ or underwear whilst toilet
training
Every hour tell Nathan it is time to use the toilet and tell him to sit
for up to a minute.
Tell him where you are going and that he needs to ‘wee on the
toilet’
Use the same language and words, for example ‘wee’, ‘toilet’ and
‘poo.’
Follow the same pattern each time
Deal with accidents by saying to Nathan that he is ‘wet’ or ‘dirty’
and he needs to get changed in the toilet/bathroom straight away.
(Feeling wet or dirty can desensitise a person to discomfort
interfering with training efforts).
Use record charts, stick these on the toilet wall
Copy the chart onto the one in Nathan’s communication book at the
end of the day.
26
Toilet Training for Children with Special Needs
6. Parents Questionnaire
Toilet training presentation and workshop
Parent feedback form
Thank you very much for attending today’s toilet training presentation and
workshop. We would value your feedback, and kindly ask for you to complete
this questionnaire. Your feedback will enable us to develop these sessions
further.
1)
Was
this
session
1 2
3
Not very relevant
relevant
2)
7
and
8
your
9
child?
10
Very
4
5
6
7
Just the right amount
8
9
10
Too much
3
4
5
6
7
8
9
10
Yes a
Did you find the questions and answer session with the continence
nurse
useful?
1 2
Not really
lot
5)
6
you
Did the session help you develop your understanding of toilet
training and give you practical tips to help?
1 2
Not really
lot
4)
5
to
Did the presentation have the right amount of information for you?
1 2
3
To little information
information
3)
4
relevant
3
4
5
6
7
8
9
10
Yes a
Would
you
1 2
No
3
recommend
4
5
this
6
session
7
to
8
other
9
parents?
10
Yes
Any other comments.
27
Toilet Training for Children with Special Needs
7. Toilet Training Feedback Analysis from staff - ERIC
Toilet Training Including Children with Special Needs
11th June 2013
FEEDBACK ANALYSIS
Out of the 40 delegates who attended this seminar 38 completed and returned their
feedback questionnaires. All the percentages below have been calculated against the 38
responses.
Q.1
The sessions were rated as follows: Session A – Healthy bladders & bowels
No.
30
6
2
0
%
79
16
5
0
Option
Very useful
Useful
Quite useful
Not at all useful
Session B - Skills required for toilet training
No.
26
10
2
0
%
68
26
5
0
Option
Very useful
Useful
Quite useful
Not at all useful
Session C – Why some children struggle with toilet training
No.
19
17
2
0
%
50
45
5
0
Option
Very useful
Useful
Quite useful
Not at all useful
Session D – Equipment & products
No.
20
16
2
0
%
53
42
5
0
Option
Very useful
Useful
Quite useful
Not at all useful
28
Toilet Training for Children with Special Needs
Session E – Developing toileting programs
No.
16
21
1
0
%
42
55
3
0
Option
Very useful
Useful
Quite useful
Not at all useful
Comments included:
Q.2

Very interesting and useful training

Very interesting with useful information

Really useful. Answered all questions very well – everyone excited to put ideas
into practice

More information about overcoming struggles with toilet training/behavioural
issues

It would be useful to see some examples (real caseloads and challenging
situations

Very interesting

Clear structure and practical strategies to support toilet training – well
presented to cover a variety of diagnoses and needs

Handout of resources – Books (available on slide show)

More visual and examples

Very informative but a times felt bombarded with information, probably good
idea to have had a 15 min break not 5 for a chance to refresh

More information on communicating with children

Very good. Need a break half through though

Excellent for our students! Fantastic presentation and info to use straight away

Excellent training. Concise, informative with many useful ideas
Would you like to receive ERIC catalogues to hand out to patients?
No.
26
10
2
Q.3
%
68
26
5
Option
Yes
No
Neither box ticked
Do you inform parents about ERIC’s helpline and resources?
No.
2
17
19
%
5
45
50
Option
Yes
No – but all said they would do from now on
No comments
29
Toilet Training for Children with Special Needs
Comments included:

During school support groups, family support worker, medical team,
class team

Not personally as feel medical team would but will do so now

This is all new but will pass info on to parents

Didn’t know about it before
8. Literature search results for further reading
National Institute for Health and Care Excellence
CG99 Constipation in children and young people: NICE guidance
Published 26/05/2010
National Institute for Health and Care Excellence
CG128 Autism in children and young people: full guideline
Published 28/09/2011
1. Title: A parent training model for toilet training children with autism.
Citation: Journal of Intellectual Disability Research, 01 June 2010, vol./is.
54/Part 6(556-567), 09642633
Author(s): Kroeger K, Sorensen R
Source: CINAHL
2. Title: Completion of toilet training in children with defecation disorders and
concomitant symptoms of autism spectrum disorders
Citation: Gastroenterology, May 2012, vol./is. 142/5 SUPPL. 1(S381), 00165085 (May 2012)
Author(s): Peeters B., Benninga M.A., Noens I.
Source: EMBASE
3. Title: A multidisciplinary functional toileting pathway for children with
cerebral palsy: Preliminary analysis.
Citation: Clinical Practice in Pediatric Psychology, March 2013, vol./is. 1/1(8188), 2169-4826;2169-4834 (Mar 2013)
Author(s): Millard, Erin, Benore, Ethan, Mosher, Kathryn
Source: PsycINFO
4. Title: Use of parent administered picture activity cards to teach toileting
skills in children with autism
Citation: European Child and Adolescent Psychiatry, July 2013, vol./is. 22/2
SUPPL. 1(S213-S214), 1018-8827 (July 2013)
Author(s): Ramachandram S., Lope R.J.R., Chandran V., Nor N.K., Ismail J.
30
Toilet Training for Children with Special Needs
Source: EMBASE
5. Title: Intensive behavioral treatment of urinary incontinence of children with
autism spectrum disorders: An archival analysis of procedures and outcomes
from an outpatient clinic
Citation: Focus on Autism and Other Developmental Disabilities, March 2013,
vol./is. 28/1(26-31), 1088-3576;1538-4829 (March 2013)
Author(s): Hanney N.M., Jostad C.M., Leblanc L.A., Carr J.E., Castile A.J.
Source: EMBASE
6. Title: Investigation of a reinforcement-based toilet training procedure for
children with autism.
Citation: Research in Developmental Disabilities, September 2002, vol./is.
23/5(319-31), 0891-4222;0891-4222 (2002 Sep-Oct)
Author(s): Cicero FR, Pfadt A
Source: MEDLINE
7. Title: Levels of continence in children with cerebral palsy.
Citation: Paediatric Nursing, 01 May 2006, vol./is. 18/4(23-26), 09629513
Author(s): Singh BK, Masey H, Morton R
Source: CINAHL
8. Title: Functional performance in children with Down syndrome.
Citation: American Journal of Occupational Therapy, 01 November 2004,
vol./is. 58/6(621-629), 02729490
Author(s): Dolva A, Coster W, Lilja M
Source: CINAHL
9. Title: Behavioral intervention to eliminate socially mediated urinary
incontinence in a child with autism.
Citation: Child & Family Behavior Therapy, 01 December 2003, vol./is.
25/4(53-63), 07317107
Author(s): Riccciardi JN, Luiselli JK
Source: CINAHL
10. Title: Continence in cerebral palsy.
Citation: Health Visitor, 01 September 1990, vol./is. 63/9(301-302), 00179140
Author(s): Shaw J
Source: CINAHL
11. Title: Systemic adverse events following botulinum toxin A therapy in
children with cerebral palsy.
Citation: Developmental Medicine & Child Neurology, 01 February 2010,
vol./is. 52/2(139-144), 00121622
Author(s): Naidu K, Smith K, Sheedy M, Adair B, Yu X, Graham HK
31
Toilet Training for Children with Special Needs
Source: CINAHL
12. Title: Safety of botulinum toxin type A among children with spasticity
secondary to cerebral palsy: a systematic review of randomized clinical trials.
Citation: Clinical Rehabilitation, 01 May 2009, vol./is. 23/5(394-407),
02692155
Author(s): Albavera-Hernández C, Rodríguez JM, Idrovo AJ
Source: CINAHL
13. Title: Relationship of bladder dysfunction with upper urinary tract
deterioration in cerebral palsy.
Citation: Journal of pediatric urology, October 2013, vol./is. 9/5(659-64), 14775131;1873-4898 (2013 Oct)
Author(s): Gundogdu G, Komur M, Avlan D, Sari FB, Delibas A, Tasdelen B,
Nayci A, Okuyaz C
Source: MEDLINE
14. Title: Autism spectrum disorders in children with functional defecation
disorders.
Citation: Journal of Pediatrics, September 2013, vol./is. 163/3(873-8), 00223476;1097-6833 (2013 Sep)
Author(s): Peeters B, Noens I, Philips EM, Kuppens S, Benninga MA
Source: MEDLINE
15. Title: Clinical and urodynamic spectrum of bladder function in cerebral
palsy.
Citation: Journal of Urology, October 2009, vol./is. 182/4 Suppl(1945-8), 00225347;1527-3792 (2009 Oct)
Author(s): Richardson I, Palmer LS
Source: MEDLINE
16. Title: Correlation between motor function and lower urinary tract
dysfunction in patients with infantile cerebral palsy.
Citation: Neurourology & Urodynamics, 2007, vol./is. 26/2(222-7), 07332467;0733-2467 (2007)
Author(s): Bross S, Honeck P, Kwon ST, Badawi JK, Trojan L, Alken P
Source: MEDLINE
17.Title: Voiding dysfunction and the Williams-Beuren syndrome: a clinical
and urodynamic investigation.
Citation: Journal of Urology, April 2006, vol./is. 175/4(1472-6), 00225347;0022-5347 (2006 Apr)
Author(s): Sammour ZM, Gomes CM, Duarte RJ, Trigo-Rocha FE, Srougi M
Source: MEDLINE
18.Title: Urodynamic findings in children with cerebral palsy.
32
Toilet Training for Children with Special Needs
Citation: International Journal of Urology, August 2005, vol./is. 12/8(717-20),
0919-8172;0919-8172 (2005 Aug)
Author(s): Karaman MI, Kaya C, Caskurlu T, Guney S, Ergenekon E
Source: MEDLINE
19. Title: Behavioral problems in children with Down syndrome.
Citation: Indian Pediatrics, July 2005, vol./is. 42/7(675-80), 0019-6061;00196061 (2005 Jul)
Author(s): Bhatia MS, Kabra M, Sapra S
Source: MEDLINE
20. Title: Functional performance in children with Down syndrome.
Citation: American Journal of Occupational Therapy, November 2004, vol./is.
58/6(621-9), 0272-9490;0272-9490 (2004 Nov-Dec)
Author(s): Dolva AS, Coster W, Lilja M
Source: MEDLINE
21. Title: Development of bladder control in children and adolescents with
cerebral palsy.
Citation: Developmental Medicine & Child Neurology, February 2001, vol./is.
43/2(103-7), 0012-1622;0012-1622 (2001 Feb)
Author(s): Roijen LE, Postema K, Limbeek VJ, Kuppevelt VH
Source: MEDLINE
22. Title: Urologic health in children with down syndrome
Citation: Journal of Urology, April 2013, vol./is. 189/4 SUPPL. 1(e75-e76),
0022-5347 (April 2013)
Author(s): Brown E., Hogan R., Zhang J., Dinh K., Langston S., Roth C.
Source: EMBASE
23.Title: Autism spectrum disorders and autism spectrum symptoms in
children with functional defecation disorders
Citation: Journal of Pediatric Gastroenterology and Nutrition, June 2011,
vol./is. 52/(E97-E98), 0277-2116 (June 2011)
Author(s): Peeters B., Benninga M.A., Loots C.M., Van Der Pol R.J., Burgers
R.E., Philips E.M., Wepster B.W., Tabbers M.M., Noens I.L.
Source: EMBASE
24. Title: Psychological differences between children with and without soiling
problems
Citation: Pediatrics, May 2006, vol./is. 117/5(1575-1584), 0031-4005;02105721 (May 2006)
Author(s): Joinson C., Heron J., Butler U., Von Gontard A.
Source: EMBASE
33