Starting school life
Start of school readiness
Going to school is an exciting event for children. Children with PWS also carry their school bag with great pride and in joyful expectation of the things that lie ahead of them. When choosing the right school, parents should focus on what their child is comfortable with and in which areas they need support. With the start of school readiness, it becomes clear which cognitive abilities the respective child has with PWS. Due to the complexity of Prader-Willi Syndrome, it can sometimes be difficult to find a school that meets the individual needs of the child.
While some – a few – children with PWS can attend a regular school, most need the sheltered framework of a special school. School types of this kind focus on mental development or physical and motor development. Children with PWS are also well looked after in schools with integrative concepts. During the pre-school phase, parents should consult with the teachers, the paediatrician and the socio-paediatric centre in order to choose the right school for their child.
Understanding and clear rules in everyday classroom life
It is important for all children to find safety, stability and security in their new school environment. When this basis is created, they are able to learn more easily. For children with PWS, it is particularly important that they feel comfortable in an unfamiliar atmosphere. Fixed reference persons, familiar teaching procedures and small classes contribute to this and provide them with support. School integration assistants or buddies can assist the child in mastering his or her everyday school life.
The special characteristics of a child with PWS should be discussed with the child’s teachers beforehand in order to enable an understanding and clearly regulated handling of the food problem and the now increasingly frequent violent outbursts of anger. During school age, usually from the age of 8 to 9, children with PWS become aware of their special characters, so it is all the more important for them to be accepted by their classmates despite some situations where it is difficult for them to cope.
A little bookworm learns to read
Many children with PWS have been enthusiastic early on and have looked at their picture books with great perseverance and liked to be read to aloud. With their strong visual memory, these children can remember the number of images and assign them to circumstances. This benefits them at school. Learning to read can thus allow the child to flourish in this fertile breeding ground. However, arithmetic and abstract thinking are difficult for children with PWS. Since they understand what is said literally, it is also important to avoid abstract statements and irony or to ensure that the child understands them afterwards. The memorising, understanding and reproduction of complex tasks is also a major hurdle that needs to be overcome at school, which is difficult for a child with PWS due to its less pronounced short-term memory and reduced ability to concentrate.
This can for example be countered in class with visual aids. The child will quickly learn the names of its classmates and the processes in school. This is due to its good long-term memory. The fine motor skills required for writing and drawing, on the other hand, must be taught over and over again. While the speech comprehension of children with PWS is generally quite good, their ability to express themselves develops slowly. In most cases the child is left with a slightly slurred-sounding speech, but sometimes also a speech impairment that can be very pronounced. Every child with PWS needs an individual learning strategy in order to enjoy everyday school life with all its requirements and processes.
A little bookworm learns to read
Many children with PWS have been enthusiastic early on and have looked at their picture books with great perseverance and liked to be read to aloud. With their strong visual memory, these children can remember the number of images and assign them to circumstances. This benefits them at school. Learning to read can thus allow the child to flourish in this fertile breeding ground. However, arithmetic and abstract thinking are difficult for children with PWS. Since they understand what is said literally, it is also important to avoid abstract statements and irony or to ensure that the child understands them afterwards. The memorising, understanding and reproduction of complex tasks is also a major hurdle that needs to be overcome at school, which is difficult for a child with PWS due to its less pronounced short-term memory and reduced ability to concentrate.
This can for example be countered in class with visual aids. The child will quickly learn the names of its classmates and the processes in school. This is due to its good long-term memory. The fine motor skills required for writing and drawing, on the other hand, must be taught over and over again. While the speech comprehension of children with PWS is generally quite good, their ability to express themselves develops slowly. In most cases the child is left with a slightly slurred-sounding speech, but sometimes also a speech impairment that can be very pronounced. Every child with PWS needs an individual learning strategy in order to enjoy everyday school life with all its requirements and processes.
A promise is a promise that cannot be broken!
A clearly structured day at home is also important for a child with PWS. The events of the day should, as far as possible, be discussed and unforeseen events avoided. But often enough something happens out of the blue. Such situations should always be discussed with the child afterwards. Additional time should also be planned for situation transitions. If you have made a promise to your child, he or she will take you at your word, because people with PWS take what is said to them very seriously. Everything must be in order – not only spatially, but also in terms of interpersonal dynamics and daily routine. Sudden changes, haste and pressure unsettle and stress the child, and it may respond with persistent questions, self-abusive behaviour or an outburst of anger.
Fits of rage may also occur. For the family, this means providing stability in every respect, which of course is not always easy and realistic. Since it is almost impossible to calm an outburst of anger by normal means, a “timeout” in the form of a short break can help both the child and its parents to steer an escalating situation back into calmer waters. Parents should not tell the child of any consequences while the tantrum is taking place. It is important that they accompany their child to prevent anything worse from happening. Once the anger has subsided, both the parents and the child should sit down to discuss the incident and give the child the opportunity to work on his or her self-control.
Regular, wholesome and varied – the PWS nutrition plan
Food plays a central role in the life of a child with PWS and its family. The conscious handling of food is just as important as a varied, wholesome diet. In order to meet the child’s need for food, 5 – 6 regular, small meals a day with an energy content of 700 – 1100 kcal (depending on the size, age and constitution of the child) should be provided. For a non-disabled person, this would be equivalent to a diet. This is not the case for people with PWS. Due to the special nature of their metabolism, people with PWS need only 2/3 of the energy of a healthy peer. Even with normal eating habits, people with PWS have a tendency to gain weight. Imaginative cooking is therefore important in order to make small dishes appear larger on the plate.
Regular meals make a person with PWS feel safe, meaning that they do not need to worry about sourcing food. The urge to eat is not the same for all people with PWS. Some are satisfied with the meals they receive and do not look elsewhere for food. Others, on the other hand, are far more fixated on food, especially sweets and calorie-rich foods, and use unsupervised moments to their advantage. Sometimes the urges can be so bad that they result to eating spoiled food. In any case, the family should ensure that food, garbage, household cleaners and medication are kept out of the child’s reach. Fixed routines, such as immediately clearing the table after eating, can help the child and its family in avoiding conflicts. If the child has eaten
or even stolen food without permission, its social environment should not react with accusations. People with PWS have significantly greater difficulty than other people in resisting these temptations. The constant fight against addiction and thus against gaining weight is a genetic lot that is not easy to cope with and requires a lot of understanding. It helps to simply lock food away completely in order to prevent temptations from arising in the first place.
Movement within the group is the key
People with PWS are sociable, communicative, open and humorous. However, they need special support in dealing with their peers, as their attention is usually focused on adults whose expectations they would like to meet. Children, on the other hand, often do not know where to start. Thus, extracurricular activities of any kind in groups of children are conducive in order to let them have social experiences within their own age group. This can sometimes result in friction. Since exercise is vital for a child with PWS anyway, it makes sense to look for a suitable sport at local sports clubs where the child can practise together with other children. Swimming, judo,
horse-riding or dancing may be more suitable than activities that require a great deal of speed and agility, such as some team sports. People with PWS are often difficult to motivate when it comes to physical activity, even if they are more active through the administration of growth hormones than without it. The training programme for children with PWS should be varied in any case in order to counteract this pronounced unwillingness to be active. Exercise is essential for weight loss and a stable body weight. The respiratory problems typical of PWS, apnoea, muscular hypotonia and daytime sleepiness can also be alleviated through sport.