Having a child with Down syndrome can be associated with shock and worry about the future, especially if the diagnosis comes unexpectedly. According to Åsa Staflin, chair of the Swedish Down Syndrome Association's Västmanland division, many describe a feeling of loneliness immediately at the hospital. To address this, in Västerås, there has long been a system with contact parents, where those who already have children with Down syndrome can register as volunteer contact parents.
The contact information of volunteer contact parents can be given directly to new mothers and fathers who have children with the syndrome. In the future, everyone in Sweden who has a child with Down syndrome will receive a book containing stories from parents, siblings, and a grandmother about what it's like to live with a young child with the syndrome. The book also includes some facts about feeding, language, support, and rights.
Many describe how a feeling of loneliness immediately sets in at the hospital.
Staflin said, 'I believe it will help parents not feel the loneliness that many have talked about. ' The book is launched by the Swedish Down Syndrome Association in connection with Rocka sockorna day on March 21. March 21 is World Down Syndrome Day, a UN day aimed at increasing awareness about the syndrome.
In Sweden and several other countries, the day is observed by 'rocking socks' (wearing mismatched socks). By wearing different socks, a person shows that they stand up for all people's equal value and rights. The day falls on March 21 each year to symbolize how people with Down syndrome have 3 sets of chromosome 21.
It is unknown how many contact parents are currently registered in Västerås, if similar systems exist in other Swedish cities, or how the book will be distributed to new parents across Sweden.