I am writing this letter regarding my experience with the Parent to Parent program within your organization. While I have only been involved in this program for a little over a year, it has been a tremendous source of support and information. I have a 15 month old son who was diagnosed prenatally with a heart defect and Down syndrome. I received virtually no information from my medical provider about Down syndrome (my FISH test results confirming the DS diagnosis were given to me via a phone call from a geneticist in a Sioux Falls lab). It was not until after my son was born and receiving Early Intervention services that I was informed of the Parent to Parent program.
My Parent to Parent mentor is Kara. I am so fortunate to have been paired with her. She also has a child with Down syndrome. Kara has shared and continues to share her experiences about Down syndrome. Through her I’ve gain resource information and connected with other families with “extra” special kids. Kara is a tremendous advocate for our children within the community. She is well-informed and provides myself and other families new information on a regular basis.
The Parent to Parent program is a great idea. When I first learned of my son’s diagnosis I spent hours on the computer trying to educate and prepare myself for what lie ahead. I learned a lot about the medical side of Down syndrome-which was overwhelmingly all the things that could be “wrong” with my child. I wish I could have been connected or provided support information from the point of the initial diagnosis. I have shared this frustration with Kara and hope that we can somehow get this program and others support group information to medical providers within our region. After my son was born, my doctor’s nurse actually called me to see where I got my information about Down syndrome. They recently had another pre-natal diagnosis and were looking for information to pass on to the mother.
You can read all the literature available and hear the medical “facts” about a condition, but in my opinion there is no better resource than a parent who has or is experiencing a similar situation. I very much support Family Voices of North Dakota and the Parent to Parent program. I hope to become involved as a Parent to Parent mentor in the near future.
Nikki G -Mom to Max 15 mths (DS and CHD)