Educating the child with PWS
- Many children with PWS have poor auditory processing abilities. A child may have difficulty carrying out verbal instructions, or may be unable to cope with too many instructions at once. Visual cues and aids to learning should therefore be used as much as possible. Tasks should also be broken down into smaller steps.
- Fine motor skills are usually better than gross motor skills
- Many children with PWS will repeat a question over and over again, or request reassurance about when something is going to happen (eg, "When is lunch-time?"). Generally speaking, children should be reassured about times etc, but given a limit as to how long they can go on asking. Teachers may in fact find that if they ask the question back, the answer is known.
- Mathematical concepts are learned better if they can be demonstrated in a concrete manner, such as adding up the cost of a list of presents, rather than merely a row of figures. Many children with PWS have good computer skills which can be used to advantage.
- If a task appears difficult to the child, he or she may stubbornly refuse to carry it out, and/or have a temper outburst. It is thus important that each task is only a small progression from the one previously learned.
- Poor short term memory means that the child may appear to have learned a topic one day, only to have forgotten it the next week. It is important to give information in small amounts and to use the visual information cues. Revision is necessary to ensure topics are fully grasped.
- Children with PWS tend to think in a very rigid, "black and white", way. Ensure that what is being taught is correct and unambiguous.
- Some children have difficulty with imaginative writing. They will work better on tasks which involve their personal experience of life.
- As children with PWS tire easily, it is often better to introduce new ideas early in the day when the child is more receptive. This can be the case even with older children and teenagers. A child may often be too tired by the end of the day to complete homework tasks - wherever possible these should be kept very short, or made voluntary. Some teachers have reported that the child is tired on Monday morning because of a very active weekend, so it is important to find out the child's activity patterns and try to plan the timetable accordingly, if possible.
- Most children with PWS are more receptive if they can have one to one attention. They may find it difficult to work in groups at some tasks, needing extra support in group situations.
- Like all children, those with PWS perform better if their efforts are praised and acknowledged, and they will persevere at tasks if they are well-motivated.
- Children with PWS often have poor balance and co-ordination, and thus can fall over quite easily. They also bruise easily. Often, they have a high pain threshold and can be unaware of how bruising occurred.
- If a child is complaining of internal pain, this should be taken seriously as, generally speaking, the child is unaware of minor internal aches and pains because of the high pain threshold. Similarly, there have been several reports of broken bones going unreported by children with PWS.
- Many children with PWS do not vomit, or only very rarely. This is thought to be because of low muscle tone. Vomiting in a child who does not normally vomit should be taken very seriously, and medical attention should be sought. If a child has eaten or drunk anything thought to be poisonous, seek immediate attention.
- Is the class being disrupted by the PWS child - how often, how long for etc.?
- Is the child with PWS being limited in access to education because of lack of support - how, when etc?
- What is the child like at playtime and lunchtime? Is extra support required at these times - how long for?
- Is the level of classroom support adequate to ensure that occasional or frequent temper outbursts, which may increase in the teenage years, can be handled with minimum disruption to the rest of the class?
- Is the level of support adequate to ensure that a child who has poor self-control around food will not have easy access to self-service catering, tuck-shops, and other pupils' school bags and lunch-boxes?
- Does the journey to and from school include possible opportunities for obtaining food from shops, cafes and petrol stations (some older children with PWS will unfortunately take food from shops without paying for it)?
- Is the school spread over several buildings and locations, or does it have a large number of steps and stairs? If so, can the timetable be arranged so that lessons are held in classrooms close to one another, or can allowances be made for a child with PWS arriving late in class, due to the slowness with which many children habitually move, or other physical disabilities they may have.
- Does the school have an 'ethos' of consideration for children with special needs?
- Is sex education handled in a sympathetic way? Different information may need to be given to children with PWS about how their bodies will develop.
- Residential schools
- Letters of support for statements
- Letters of support re extra hours from the LEA
- Transition
- Telephone, email,, face-face support (1:1 and at meeting, reviews etc)
- Training for staff
This article is intended to give a general overview of the special educational needs of children with Prader-Willi syndrome, and to offer some hints on general classroom management. It should be borne in mind that each child with PWS is an individual, and one child will have varying abilities from another. It is essential that each child should be assessed as an individual in order to reach their full potential, but some account should also be taken of the effects which Prader-Willi syndrome will bring into that child's life.
Cognition and Intellectual Ability
Most children with PWS have some degree of learning disability, although IQs approaching 100 have been reported, and several have gained GCSEs. A UK study found variations in different types of ability (ie better reading and writing than arithmetic), with around 16-20% of children falling within the normal range of intellectual ability. The same study found variations in types of ability between children with the different genetic types of PWS (1).
However, many studies have shown that children with PWS have strengths and weaknesses which do not accord with their overall ability, and also that immature social and emotional skills inhibit the child from performing to his/her full ability.
Some children have been linked with autistic spectrum disorders, and a report published in 2006 found that 89% of the children with PWS in the sample had persistent habits, with 86% preferring to have things done in a particular way. In the same study, it was reported that children with PWS were more likely to collect or store objects than children with autism, but less likely to line up objects in lines or symmetrical patterns or be aware of details (2)
Typically, many children with PWS will have strengths in reading and writing, with less ability in mathematics and abstract thinking (although there are exceptions). Jigsaw puzzles and Wordsearch puzzles may also be particular strengths. Short-term auditory memory is weak, but long-term memory is often a strength.
Learning Ability and Teaching Methods
Children with PWS are all individuals, and each teacher will approach each child's education in a different way to take account of their individual abilities. However, it may be useful to be aware of the following tendencies of children with PWS, and adjust teaching methods accordingly:
Classroom and behavioural management
It is important not to let the child become fixated, obsessed or reliant on one adult (e.g. the teaching assistant) in the classroom. People with PWS often display obsessive behaviour and this can extend to people, and can cause real problems if that person is not available. If possible, try to make sure that the TA assists everybody in the class, and does not move with the child through the school.
Adapting to change
Children with PWS tend to find it difficult to adapt to change, and will need some degree of consistency in their routine. However, they can be helped to learn to adapt by building supported change and choice into lessons and activities. If a change to established routine is about to happen, make sure the child with PWS is warned in advance, and given the opportunity to ask questions about what will happen. Do not make promises you cannot keep.
Tiredness
As mentioned above, many children with PWS appear to require more sleep than other children of the same age. This can be offset to some degree by ensuring that the child with PWS is not too hot, nor too cold, keeping the child active and interested, and opening windows to freshen stuffy rooms. Sleepiness may also be a clue to the fact that the subject matter is beyond the child's current level of understanding.
Some children, especially those who are overweight, may have sleep apnoea, whereby their breathing is disrupted during sleep at night, and therefore causing sleeping patterns to be disrupted, with a subsequent deterioration in the child's behaviour. Liaison with the child's parents is essential if this is suspected. Frequently, though, there is no evident cause for sleepiness, and it may be that the child's overall behaviour and well-being is helped by having a half-hour nap built into the timetable. Tired children with PWS are invariably fretful, tearful, and potentially liable to temper outbursts, with consequent disruption to the learning process.
Emotional instability and temper outbursts
Many children (and adults) with PWS find it very difficult to control their emotions in situations such as sudden changes of routine, losing their possessions, not getting what they want, food being withheld, etc. It is usually impossible to reason with a child who is having a temper outburst; "time out" is usually the best option, with time to discuss the situation later when the child has calmed down.
It may be possible to remove the other children in the class from a child with PWS who is having a temper outburst. If s/he thinks s/he is missing out on something, they may stop so that they can join in.
Managing inappropriate behaviour and rewarding good behaviour
Agree with other staff what steps will be taken to deal with inappropriate behaviour and stick to the guidelines you have initiated. The child should be aware of what is expected of him or her, and the consequences of inappropriate behaviour. Generally speaking, it is better to focus on good behaviour and to reward this, rather than punishing negative behaviours. Children with PWS often respond well to rewards for good behaviour, and often this can be something as simple as stars, smiley faces etc. Do not reward with sweets or other food items unless this has been specifically agreed with the parents or guardians.
As children with PWS enjoy individual attention, beware of making a punishment such as going to the head become a reward, inasmuch as the child then has the exclusive attention of the headteacher.
Using language such as "No!" and "Don't" can be triggers to stubbornness and tempers outbursts. Try to be positive in your language (eg "Please sit down" rather than "Don't stand up!")
Humour can often be used to defuse potentially explosive situations.
If behaviour is a significant problem, case conferences can sometimes be arranged with specific input from PWSA (UK) staff or trained volunteers. Please contact us for details.
Also on this website: Behaviour management in Prader-Willi Syndrome
Access to food
Make sure all school staff, including office staff, transport escorts, caretakers, and dinner ladies and playtime supervisors, are aware of the need for dietary control. Do not put the child in a situation where he or she is alone with food. Tackle any food-taking tendencies in private.
Do not use food as a reward.
It may be appropriate to instruct other children in the class about the dietary control required by children with PWS, and that it is not a good thing to offer the leftovers from their lunchtime meal, for example. This could be expediently incorporated into a lesson on "Healthy Eating".
Also on this website: Weight management in Prader-Willi Syndrome
Social skills
Encourage the development of social skills such as not interrupting conversations, standing at an appropriate distance from the person you are talking to, sharing and turn-taking; these skills all tend to be poorly developed in people with PWS.
Many children with PWS, even older ones, are especially vulnerable to "stranger danger" - particularly if they are offered sweets or food. Appropriate hugging, touching, and awareness of "stranger danger" can all be incorporated into a class PSHE lesson.
Exercise
Children with PWS benefit from physical exercise, as this helps to control their weight, and helps to improve muscle tone. However, many children prefer to be sedentary, and require extra praise and attention to motivate themselves. Many children with the syndrome excel at swimming.
Special occasions
If the class is going on an outing, or if the class is celebrating a child's birthday, it is not necessary to exclude the child with PWS on account of their special dietary needs. Liaison with parents will usually ensure that any extra food treats can be compensated for when the child gets home. Whenever possible, offer the child a choice, eg, "You can have small piece of birthday cake now, and no pudding when you get home (or at lunchtime)" or "You can have a very small piece of birthday cake now, and half your pudding when you get home". On outings, extra support may be needed to make sure the child does not gain access to extra food. Some children will accept diet drinks or an extra non-food treat instead of ice-cream.
School-home liaison
Liaison with parents is essential. Wherever possible, parents and school staff should collaborate in the way the child is being managed, and agree on strategies which apply whether the child is at school or at home. A home-school diary is a very useful tool, even for older children and teenagers, as some children with PWS are very good at manipulating one person against other (eg coming to school and telling the teacher that they have had no breakfast, and can therefore have more lunch). However, some parents have reported that their child reads everything in the diary, which can cause problems - or they hide or destroy the book. In such cases, liaison could be carried out by email, text or phone once the child has left for home.
Medical alerts
The following are special or unusual medical aspects of PWS, which need to be taken account of in an emergency.
Also on this website: Health care in PWS
Types of schooling for children with PWS
The Special Educational Needs Code of Practice 2001 makes provision for the special educational needs of each child to be assessed properly and in partnership with all relevant parties. It is thus very important that a clear understanding of what PWS entails is available to everyone involved from the very beginning of the child's education. This is particularly crucial in view of the current trend towards mainstream schooling, and the Code of Practice's emphasis on a stronger right for children with SEN to be educated in such schools. The effects of PWS can present signficant problems in mainstream settings, as outlined throughout this leaflet. However, with appropriate support and understanding, mainstream is still very much a viable option for children with PWS. If this becomes unworkable, the child (and their parents and teachers) should not be seen as failing - it is simply that the child might function better in a more specialist environment.
It is important to ensure you have sufficient hours of classroom support. When making an application to the LEA for classroom support it is important to include a detailed log which should include the following information:
Many children with PWS start their formal education in mainstream primary, with varying degrees of support. Others will begin their education in special needs schools. Most often, these will be for those with moderate learning difficulties (MLD); less frequently for those with severe learning difficulties (SLD). Occasionally, other types of school may be attended: speech and language disorders, autism spectrum disorders, or physical disabilities. Because of the range of ability in PWS, each child's schooling needs will differ from another's.
Surveys of schooling of children with PWS carried out by PWSA (UK) have seen that there is a marked rise in attendance at special schools as age increases. Nevertheless, there is a significant minority of youngsters with PWS who do very well in mainstream school and achieve several GCSE passes. It appears that numbers of children in special schools have dropped over the past seven years. This is almost certainly due to LEAs pursuing inclusion policies, rather than any overall rise in general ability in children with PWS.
Support hours for children in mainstream can range from 5 to full time, depending on individual need.
Statement of Educational Needs
As a general recommendation, no matter what the ability of the child appears to be, a Statement of Educational Needs (Record of Needs, in Scotland), should be carried out for the child. This will ensure that the child is being monitored throughout his or her school life and that any changes in educational needs, particularly those at secondary level, can be carried out more smoothly.
Transferring to secondary school
In the past, a few children have successfully transferred to mainstream secondary, but others have found this a difficult step to take, and careful planning needs to be carried out to ensure success. Besides the need for educational support, several factors should be taken into account:-
A small minority of children with PWS find it difficult to access local schooling provision once they reach secondary level, usually because of the behavioural and dietary management aspects of the syndrome. Although there are no residential schools specifically for people with PWS, some have experience in managing pupils with the syndrome. A list of these schools and further education colleges is available from the PWSA UK.
Future options
Some youngsters with PWS attain a good level of general education, but feel let down when they find it difficult to get jobs. Often this is because of poor social skills, liability to temper outbursts, difficulty in adapting to change, and problems associated with food-seeking. Youngsters with PWS can be helped to overcome these difficulties during their school years, but it is important to be realistic about their future careers. Currently, very few people with PWS manage to obtain full-time jobs, but many find a lot of satisfaction in part-time and voluntary work, and in attending college courses.
Each individual will have different talents, but typical occupations are: filing, typing, computing, horticulture, animal husbandry, packing in factories, and looking after children, elderly people and people with severe disabilities. Many people with PWS excel at cooking, but serious consideration should be given to the opportunity to obtain food when working in the catering field: how far will a potential increase in weight, which could be life-threatening, be balanced by job satisfaction?
Help from the PWSA UK
PWSA (UK) may be able to offer help to schools in many different ways. Please be aware that some of these services may be chargeable - please contact us for further details.
Other pages on this site which may be helpful
Further reading
Books and booklets available from PWSA UK
Prader-Willi Syndrome: A Practical Guide (Resource Materials for Teachers) by Jackie Waters David Fulton Publishers, 1999
Babies and Children with Prader-Willi Syndrome: A Handbook for Parents and Carers (Revised Edition) PWSA (UK) 2001
Teenagers with Prader-Willi Syndrome: A Handbook for parents and carers PWSA (UK) 2005
Healthy Eating with Prader-Willi Syndrome
References
1. Whittington, Joyce and Holland, Tony (2004) Prader-Willi Syndrome: Development and Manifestations pp111-136. Cambridge University Press
2. Greaves, N., Prince, E., Evans, DW., and Charman, T (2006) Repetitive and ritualistic behaviour in children with Prader-Willi syndrome and children with autism. Journal of Intellectual Disability Research 50, part 2, 92-100.
Copyright PWSA UK
Thankyou
We are most grateful to the M&G Staff Charity Fund for their support for the revision and production of this document.
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