How To Balance A New Diagnosis: Down Syndrome
When an error in cell development results in 47 chromosomes — rather than 46 — the extra gene interferes with normal brain and body development. This chromosome abnormality, referred to as Down syndrome, occurs in about one out of every 700 births, according to BabyCenter.
Children with Down syndrome experience learning disabilities and some physical health issues, however medical advances continue to improve the life expectancy of people with Down syndrome. Ongoing research and increased service availability mean that many adults with Down syndrome are able to live happy, healthy and independent lives.
Dealing with the Diagnosis
It’s normal for parents to experience a wide range of emotions after learning a baby has Down syndrome. Many parents experience a sense of grief as they envision some of the hardships a child with Down syndrome may endure. It’s normal to experience sadness, anxiety, anger, guilt and fear as well.
One of the best ways to help cope with the emotional roller coaster is to educate yourself on the most up-to-date facts about Down syndrome. It’s also important to take care of yourself as you cope with your emotions. Getting plenty of sleep, eating a healthy diet, and engaging in stress reduction activities can be helpful.
A social network can also be pivotal to helping you cope. Although reaching out to friends and family can be difficult, talking to other people about your feelings can help. Connecting with other parents who have children with Down syndrome is also another way to deal with the diagnosis.
How a Social Worker Helps
Social workers can provide families dealing with a diagnosis of Down syndrome with assistance in several ways. They often provide emotional support to parents who are trying to cope with the news. Social workers can assist parents in identifying strategies to manage stress and deal with their emotions.
They can answer questions and provide education about the diagnosis. They can teach parents about the services and resources that are available for children with Down syndrome. Often, social workers assist parents in understanding treatment needs and the types of professionals they need to address medical issues, learning disabilities and developmental delays for their child.
Social workers also provide information on how parents can seek help for practical needs, such as financial problems that may arise as a result of any extra medical care a child with Down syndrome may require. A social worker may assist by helping families apply for assistance or by linking parents to available agencies and organizations.
Resources for Parents
There are many resources that offer parents of a child with Down syndrome support. The National Down Syndrome Society provides information on the latest research and services available for parents. Local chapters provide workshops and conduct support groups as well. They also maintain a national hotline to answer questions and provide parents with assistance on a variety of topics.
Dads Appreciating Down Syndrome provides support specifically for fathers. They have local chapters and they actively use social media to help fathers connect with one another.
The Sibling Support Project assists children who have a sibling with special needs. They conduct workshops and provide publications to help children deal with their family circumstances. They also provide workshops for parents to help increase their understanding of sibling issues.
DS-Health offers information on available email lists, newsgroups and bulletin boards for parents of children with Down syndrome. These resources can assist parents in connecting with other families locally or even internationally.