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.
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.
- 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.