Introduction

All children are individuals. Your child will develop their own skills, abilities, and personality over time. There are many things you can do to help your child develop. All parents can experience periods of feeling down about their child’s future, but you can help to make that future better by supporting them to cope with the challenges of PWS, even while they are still young.

If your child was diagnosed early, you should already be receiving plenty of help from your paediatrician, health nurse, speech therapist, physiotherapist, early intervention group, etc.

Your child may also be a Participant in the National Disability Insurance Scheme (NDIS).

Available supports and facilities do vary considerably between areas. Research:

• what is on offer in your area, especially for services that might be provided by voluntary organisations
• your local library
• special needs development services
• Prader-Willi Syndrome Australia (PWSA)

Developmental milestones

There is no set age when toddlers living with PWS reach developmental milestones, but they might be:

• Sitting unaided – 12 months or later
• Walking – 19 months or later
• Speech – variable, may not start till 3 years or later.

If you have concerns about your child’s development in any of these areas, discuss them with your pediatrician or GP. Your child may have individual reasons, possibly unrelated to PWS, for their developmental delay.

Potty training

Potty training techniques used with all babies should also work for babies living with PWS, although they may take longer. If you are having difficulties, contact PWSA for further information. Some families have found a pad and bell bedwetting alarm useful for night time training.

Child development services and Portage

Cities and larger towns may have early childhood Intervention services (ECIS). This is where child development specialists will welcome your child into group play sessions. They may help you devise a tailor-made plan for your child’s development.

The service might include play ideas to stimulate mental action, and simple exercises or physiotherapy to strengthen your child’s muscles and help them to go on to new milestones.

Raising Children, an Australian parenting website, has more information about early intervention.

National Disability Insurance Scheme (NDIS)

If you haven’t already applied, now would be a good time to approach the NDIS. Once accepted, the NDIS will usually fund ‘reasonable and necessary’ supports. At this age it can include early intervention services and allied health visits. Read more in ‘PWS and the NDIS’.

Physical activity

Your child will continue to need encouragement with physical activities, even though they may well be walking by now. Those receiving growth hormone treatment may experience fewer problems with low muscle tone. Physical abilities may be more advanced.

If your child is not receiving growth hormone treatment, and you think they are not growing at the same rate as other children of their age, or their muscle tone is particularly low, ask your paediatrician or GP for advice. You can find out more about growth hormone treatment in the PWSA information brochure ‘Growth hormone therapy for children living with PWS’.

Children can be encouraged to learn to run, jump, hop, skip or ride a bike. A lot of patience and positive encouragement may be needed, but the advantage of being able to move more quickly and easily will help considerably in keeping their weight within reasonable limits, as well as making it easier for them to join in with other children’s play. Toddler gyms can be helpful if the instructors are understanding of your child’s capabilities.

For information and ideas see the booklet: Exercise and Physical Activity for Children with Prader-Willi Syndrome – A guide for parents and carers

See the video ‘Diet, Exercise and the prevention of obesity’ https://youtu.be/2eXL1EylViA

Water play and swimming

Most children like activities in water, and children living with PWS are no different. It is very likely that your child will love swimming and even very young babies can benefit from sessions in the teaching pool or special hydrotherapy pools. More about hydrotherapy can be found at https://choose.physio/your-wellbeing/hydrotherapy

How you can help your child’s development

Most children will have begun to display a greater interest in food by the time they reach five years old, although in some this still may not be evident. Here are some suggestions.

• Carry on, or begin, teaching your child about eating for good health. Put into practice ideas in the PWSA brochure ‘Healthy eating 2-5 years’.
• Regular physical activity and mental and physical stimulation are now even more important. They will help to keep your child’s mind busy, rather than looking for his next meal.
• Whatever level of development your child is at, it is important to try to stretch them a little bit further. However, it is equally important that you do not try to make them attempt more than they can do. They will soon give up or refuse to do something if the task is too hard for their current stage of development.
• Children living with PWS can be very set in the way they think about or react to things. You can help your child become more adaptable by helping them to understand that life is never ‘black or white’:
  • Offer simple choices, such as ‘Do you want to wear your red jumper or your blue jumper today?’
  • Talk through situations where the outcome is unpredictable, e.g., ‘If grandma isn’t in when we arrive, we will go for a walk’.
• Simple colouring, tracing over wavy lines, and very simple dot-to-dots can help with pencil skills and number work – preparing the ground for when your child starts school.
• Reading can be a relative strength in some children, although others might struggle. You can help your child by reading to him and looking at simple books together and going to free library sessions for children.
• Maths and number work may be a difficult area, so help your child to learn about numbers by counting lots of different objects in daily life, and as you read to him.
• Help to improve your child’s memory skills by playing children’s versions of the card games Pelmanism or Pairs and by singing songs and nursery rhymes together.
• Matching and turn-taking card games may also be useful preparation for school.
• Your child may well show an aptitude for jigsaw puzzles. Do praise them if they have this ability, or any other special skill, as it will help to raise self-esteem.
• Playdoh type products can help develop muscles in your child’s hands, but it is not a good idea to use this if your child shows a tendency to eat non-food products.

Positivity and praise

Rigidity of thought is a common characteristic. The positive side is that you can sometimes use these thought process to build some good habits.

Good habits once learned are likely to last forever, particularly if you praise your child at the time for appropriate behaviour.

We recommend you do not use food for a reward. There are lots of alternatives, such as certificates, stickers which can be traded for something special at the end of a set period or something that your child is interested in. Books, toys, or trips out can work very well too.

Supporting appropriate behaviour

Most children of this age have behaviour similar to their siblings or other young children. Remember not to give in to demands from temper tantrums – giving in to their inappropriate demands is merely rewarding bad behaviour and if you do give in, it may well cause you and them problems later in life.

Positive Behavioural Support (PBS) loosely means a process whereby unacceptable behaviours are replaced over time by more socially appropriate, learned behaviours.

There are a few children living with PWS who begin to display challenging behaviour at this age. If you are concerned about your child’s behaviour, or its effect on you and your family, contact your GP, social services or paediatrician for advice and possible referral to a Child and Family Therapist service. In more challenging situations you might need to develop a positive Behavioural Support Plan (BSP), however, a BSP is more common in adults living with PWS. For more detail, please read the ‘Positive behavioural support planning’ brochure found on our PWSA website.

See this description of the PBS process by the United Kingdom Centre for the Advancement of Positive Behaviour Support: https://www.england.nhs.uk/6cs/wp-content/uploads/sites/25/2016/07/bild-key-questions.pdf

Child-minders, playgroups, and kindergartens

If your child is not already in kindergarten or playgroup, it is a good idea to start looking around now. Going to a playgroup will help your child’s social skill development and be a good preparation for school life.

If you wish to place your child with child-minders, or in a playgroup or kinda, you can search on the internet for suitable placements in your area or ask your child development centre. You should research all the possibilities thoroughly, particularly about how the child-minder or kindergarten can manage your child’s dietary needs within the context of other children – many will already have a healthy eating policy in place or would be willing to adopt one.

Many parents take their children to local play groups and facilities and generally this can work well, provided the playgroup leader and helpers are prepared to understand and accommodate the need for special rules regarding food. For example, make sure low-calorie squash or semi-skimmed milk is available – even if you must bring it yourself. Other families may choose centres with greater experience around additional needs.

Both types of playgroups can work well. In a community group there may be more opportunity for your child to learn to integrate into other children’s play and games, whilst in a special needs group there is less competition and more attention, and a chance to share experiences with other empathetic parents.

Preparing for school and NDIS planning

The Australia Government supports the rights of children and young people with disabilities to have the same education opportunities as other school students.

It can be strategically important for you to develop a Life Plan for your child from an early stage. The Plan might contain ideas regarding your child’s support network (family and professionals) and who might assist and support you and your child. This includes how your child might transition at strategic times, such as from preschool to school, etc. For some families, a detailed NDIS Plan is largely replacing a less formal Life Plan or complementing it with additional ‘person centred’ information. Either way, this Plan will help you prepare for NDIS Planning meetings and can also be useful for guiding others (kindergarten, school, etc.) in relation to your child’s support network, likes, dislikes, how to best support them, etc.

Usually, professionals already involved with your child will be able to advise you on preparing a Life Plan or preparing for NDIS Plan Review meetings. Look for resources on the PWSA website specific to PWS.

An assessment by a GP is the first step to getting accepted onto the NDIS. When applying to the NDIS for inclusion, we recommend that you seek admission for your child as a ‘complex’ participant. You might also consider applying for NDIS funding to speech and occupational therapy reports and services. Please refer to our brochure ‘PWS and the NDIS’ for guidance.

Finding the right school

Children with PWS vary so much in their abilities. So, remember that a school which is right for one child living with PWS may not be right for another. It is up to you and your support team to decide which will be best for your child.

In general, PWSA believes that the school needs to be ready for your child, not your child ready for the school, i.e., look for a school that has experience in schooling someone with complex needs, or is willing to develop a set of background supports to accommodate your child’s needs.

Most schools are only too pleased to show parents of prospective pupils around and, if possible, you should take advantage of this to get an idea of the general ‘feel’ of the place.

If you are unsure whether mainstream, a unit attached to mainstream, or a special school is right for your child, look at all the available options, and in doing so it may be useful to consider some of the points below:

• What do the educational abilities of the other pupils appear to be? Are they about the same level as your child’s?
• Are the classrooms bright and welcoming?
• Are the teachers interested in what you have to say?
• Would the level of support be sufficient to meet the needs of your child, including at break and lunch times?
• Has the school any previous experience of a child living with PWS and, if so, was the experience a successful one?
• Are there Integration Aides?
• Are they willing to read literature or learn more about PWS?
• Is the school willing to adapt to your child’s dietary needs?
• Is the school generally designed to meet all abilities, i.e., Do they have facilities for children with disabilities such as adapted toilets, ramps etc.?
• Practical considerations such as distance from home, although, if necessary, some schools might run school buses or shared taxis.

Other Resources

See brochures ‘Information for child-minding, preschool, and day care staff’ and ‘Information for primary school staff’.

Children and Young People with Disabilities Australia https://www.cyda.org.au

Association for Children with a Disability https://www.acd.org.au

Thank you …

To PWSA UK for sharing their original source material which has been adapted for Australia.