Library Thursday: new publications on people with Down syndrome, siblings and families

The Association for Children with a Disability has released a new booklet Growing Together: A parent guide to supporting siblings of children with a disability, written for parents and highlights the experiences of siblings growing up with a brother or sister with a disability as well as strategies for parents to support siblings. The booklet is available in print and online (Click on the title for links to order or download). The booklet will be relevant to families of children with all kinds of disabilities and chronic illness, and to both child and adult siblings.

Specifically related to people with Down syndrome and their families, the results of a series of surveys undertaken by a team from Children's Hospital Boston, under the direction of Dr Brian Skotko, have been widely reported.  They are freely available online, published by the American Journal of Medical Genetics, ahead of the print edition (October 2011 issue).

More than 2000 parents, siblings and people with Down syndrome were asked about their experiences of living with Down syndrome, with the aim of providing information to expectant parents in prenatal counselling. The information gathering was undertaken in response to Dr Skotko's earlier work with mothers of children with Down syndrome recalling the information they received along with the diagnosis.

Children's Hospital Boston has issued a news release summarising the results, and linking to the online publication of each of the three papers reporting them.

Here is a brief extract from the news release:

Asked what they would tell other prospective parents of a child with Down syndrome, the top responses (from parents) fell into these categories:

• You will experience joy/rewards
• There will be struggles/challenges
• You will experience love
• Important to identify good support group/resources
• Children with Down syndrome are more alike than different from typically developing children.

Siblings, asked what they would tell prospective parents having a child with Down syndrome, most often conveyed that the experience would be joyful and rewarding, though many also said there would be challenging moments.

Respondents with Down syndrome most often gave these kinds of messages for parents:

• Love your baby/your baby loves you
• Life is good/happy to be alive/positive
• Don’t worry/it’s okay.

Their main messages for doctors were:

• Life is good/I’m happy to be alive/positive
• Please take care of our medical needs
• Please give information to parents about school options for people with Down syndrome
• Value us/we’re okay.