I spoke this morning with a neonatologist who is interested in developing a plan of action for counseling expectant parents who have been given a diagnosis of Down Syndrome through early testing. She was explaining how early medical intervention could possibly reduce the number of babies with DS who require neonatal care. Some medical conditions associated with DS can be treated in utero.
The first stumbling block is getting expectant parents to submit to the early testing. Many couples refuse the testing because they see it only as a test for deciding whether or not to terminate. That is not the only reason to get early testing. If a parent is given a diagnosis of Down Syndrome and elects to continue with the pregnancy, they will have the opportunity to
complete some medical checks, become informed about DS and the importance of Early Intervention, as well as network with other families already raising a child with Down Syndrome. All before their baby is born!
Paul and I were given an envelope of information on Down Syndrome the day Jillian was born. It was mostly a list of low expectations for people with Down Syndrome. One article said that “some children with DS are able to attend a regular school”. And that “some children with
DS can learn to live independently or in a group home”. We didn’t want to read information that was geared toward such low expectations.
The doctor I was meeting with this morning was interested in getting a positive, hopeful message to prospective parents. Something they could read in anticipation of the arrival of their beautiful baby who happens to have Down Syndrome. Paul’s book is being considered to be included in that information.
An Uncomplicated Life is an honest, loving, hopeful look at raising a child with Down Syndrome. Our hope is that our story can bring hope and joy and normalcy to their future of raising a child with Down Syndrome. We want them to discover, as we did, that all children are unique and special. Your child with have all the family traits of your other children as well as a few traits that make them unique. And it has nothing to do with having
Fear of the unknown can be very scary. So, if you have early testing that results in a diagnosis of Down Syndrome, or if you are surprised in the delivery room as we were, learn as much as you can handle at that
moment. Don’t overwhelm yourself by trying to know it all in an instant. Combine taking time to learn about Down Syndrome with taking time to get to know your child. Knowledge is power! Learn and grow
with your child.