Introduction

You are blessed with the opportunity of enjoying time with your new child! We encourage you to savour the moment before starting to think further ahead. Once you are ready you can access other resources on the PWSA website.

There are many things you can do to help your child make the most of their abilities. All parents can experience periods of feeling down or depressed about their child’s future, but you can help to make that future better for your child by supporting them in coping with the challenges of living with PWS, even while they are still young.

Babies living with PWS are usually very placid and sleep a lot, and therefore will make few demands on your attention. It can be very tempting to leave your baby to lie, sit or play on his own, particularly if you have other children demanding your attention. However, it is important that your baby gets a lot of stimulation, both mental and physical, even at a very early age, as this will aid development later.

Child development services

Most areas of Australia have Child and Family Health nurse services. They can provide support, guidance and information regarding health, emotional and physical growth, breastfeeding, and immunisation. You can also find more information about breastfeeding in the PWSA brochure ‘Breastfeeding and weening your child’.

The nurse service might also include play ideas to stimulate mental action, and simple exercises or physiotherapy to strengthen your baby’s muscles and help them to go on to new milestones such as sitting, crawling and walking.

The National Disability Insurance Scheme (NDIS)

Additional interventions, supports and therapies aimed at maximising outcomes for your infant can become expensive over time. Initially, much of the assistance you might need will fall under Australia’s public health system. As your child grows, you should consider applying for them to become a Participant under the NDIS. Early Intervention services can sometimes commence before 2 years of age. You can read more in our brochure ‘PWS and the NDIS’.

Additional reading about Early Intervention can be found at:

The early childhood approach for children younger than 9 | NDIS

Early childhood intervention: quality | Raising Children Network

Developmental milestones

There is no set age when babies 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.

It is sometimes hard to visualise development when your new-born baby might be less responsive and non-demanding, moving less or cries seldom. You can generally expect your baby to be more alert by the time they reach six months old.

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 the PWSA office for further information.

How you can help your child’s development

Simple things can help to stimulate your baby:

• putting them in a baby chair in the same room as you so that they can watch you as you do housework etc., with advice from a physio about how to manage low muscle tone
• hanging toys from their chair (some within reach and some just out of reach), pram or using special play mats.
• play music and stories or talk and sing to them.
• blowing bubbles may also be a source of great fascination and delight to your baby, which will encourage them to reach out to touch the bubbles.
• clapping and rhyming games, and songs with actions, helps develop speech and communication skills

Toy libraries, available in most areas, are useful for getting a variety of toys free or very cheaply, and there is always something new for your baby to try. They often have toys and equipment with a developmental focus.

If possible, involve your infant in play with other children. Local playgroups or special needs schemes can be extremely helpful for developing social skills. Your local maternal and child health centre should be able to tell you more about where you can access these programs.

Contact with older children who will talk and play with your baby can be very stimulating. Equally, it helps with learning to interact with other people. You could also let relatives care for your infant from time to time. In turn, they will begin to understand the issues surrounding food, and how to arrange their houses to accommodate your child’s needs.

Child-minders and creches

If you wish to place your baby with child-minders or in a creche, it could be mainstream (with special needs experience) or specialised settings. Ask your local health centre or talk to other families within our PWS community. Research all the possibilities, particularly about how the child-minder or creche can manage your child’s dietary needs within the context of other children. Many centres will already have a ‘healthy eating’ policy in place or would be willing to adopt one.

Information for nursery staff is useful to give to your child’s nursery and can be found in the PWSA brochure ‘Information for creche and child-minding staff’.

Water play and swimming

Most babies like activities in water, and babies living with PWS are no different. They enjoy pouring and squirting water and will usually happily share a bath with you. Almost all children with PWS love swimming and even very young babies can benefit from sessions in the teaching pool or special hydrotherapy pools. Hydrotherapy pools can be found in most major towns and cities. You might choose to fund a hydro therapist privately or seek funding through the NDIS. You can find a hydro therapist at here.

Older children

Refer to the page ‘Developing your child’s potential and preparing for school 2-5 years’.

Thank you ….

to PWSA UK for sharing the original source material used in formulating this resource.