Caring for your baby with Down Syndrome

KELLY EDEN explores some of the issues faced by parents and what support and resources are available for parents of babies with Down Syndrome.

In New Zealand every week one or more babies are born with Down Syndrome. Down Syndrome is a lifelong condition that causes delays in learning and development. If your baby has Down Syndrome, learning how to care for your child may take a bit of extra effort, but there’s no need to learn alone. 

Physical Development
Children with Down Syndrome often have several physical challenges. One of these is learning to use and coordinate the mouth, tongue, and vocal cords. Speech, chewing, feeding, and swallowing can be taught with the help of a speech therapist. For under-twos, the Ministry of Health provides speech therapy through their Early Intervention Team. Once children are at school, there is also funding for speech therapy through the Ministry. For some children between two and five, parents will need to apply for private speech funding. Upside Downs Education Trust is Auckland-based but provides speech funding for families in every region.

The Champion Centre in Christchurch is another early intervention service your doctor can refer your baby or preschool child to. Up north, the Wellington Early Intervention Trust (WEIT) provide music therapy, physiotherapy, speech therapy, and early intervention services for preschool children with special needs.

Medical professionals are there to help with physical and related health issues for your baby but remember they often take a deficit model — looking at what might possibly go wrong for your child. That’s one reason why gathering a community around you is essential. Meeting children and families who are doing well will give you a more balanced view of life with
Down Syndrome. 

Social and emotional support
It is not only important for you as a parent to seek out a supportive community, but your child will benefit long-term. Children with Down Syndrome can have trouble making and maintaining friendships beyond the primary school years, and a solid support group will provide them with long-term connections.

A Down Syndrome group also provides much needed emotional support for you as a parent. Many parents feel guilty about being sad that their child has Down Syndrome. It’s healthy and understandable to grieve when you discover your child has special needs. The future may be different than you imagined or hoped for, and it’s okay to express the complex emotions around that.

Your beautiful baby will have their own personality, specific needs, and temperament. These are not universal for children with Down Syndrome. Every baby is unique. The New Zealand Down Syndrome Association can also provide support as you learn about your little one.

nzdsa.org.nz

The Christchurch Special Needs Library provides a valuable and unique service to the community by lending learning, recreational and therapeutic items.

The library has excellent resources for children and adults, available for monthly hire, plus an annual fee.

“We have over 4,000 items and are constantly updating our range available for hire,” said liaison Chris Murray. “The resources are used to stimulate, educate and develop clients to their full potential.”

Opening hours are Tuesdays and Thursdays 10am-4.30pm and Saturdays 10am-1pm.

The library is happy to provide interesting, informative speakers for groups and professionals.

For more information on this service, please phone Charlotte Ganderton at the library on 03 332 0731.

specialneedslibrary.co.nz