Finding Information and Resources
If you are like most people, you received a lot of verbal information about Down syndrome in the hospital when you were exhausted and overwhelmed, which is definitely not a an ideal learning situation! When you are feeling better physically and things have settled down at home, it is a good idea to start doing a little bit of research about Down Syndrome and some of the resources available in your community.
Get the Facts
For some people, not having information provokes anxiety - they just need to know all of the possibilities. For others, having too much information is overwhelming. It is probably best to find some information and then read it when you are ready. There is no need to become an expert on Down syndrome overnight. Take your time and decide what you need to know, and when you need to know it.
It can be hard to find good information about Down syndrome. While Down syndrome is a common birth defect, your pediatrician may not have a great deal of information other than the medical facts. The Internet can be a wonderful tool, as can your local library. If you are using the Internet, make sure that you get your information from reputable sites. Most national Down syndrome support groups have websites that contain a lot of information for new parents. Another source of good information are health websites run by the federal government such as MedlinePlus.
If you go to the library, it is important to consider the date of the information that you find. Since the prognosis and expectations for children with Down syndrome have improved dramatically in the past few decades, it is very important to make sure that the information you find is up to date. Dated or old information paints a much bleaker picture of Down syndrome and frequently underestimates the abilities and strengths of people with Down syndrome.
Find Some Support
Most parents of infants with Down syndrome feel that no one can know what they are going through and this is certainly true of people who have never been in this situation.
However, Down syndrome is not rare and many other parents have been in your situation and they can be a great resource. Depending on where you live, you might be able to find a local support group or you can use the Internet to find more information. You might try joining some discussion groups and signing up for online newsletters from that national Down syndrome organizations. These groups often also hold yearly meetings which can be invaluable for getting up to date information and networking with other parents.
- National Support Groups
Line Up A Medical Team
If your baby with Down syndrome has special medical needs, it may be time to start doing some research into specialists that can help. In addition to specialists, there are some clinics in the US that are devoted to the care of individuals with Down syndrome. It may be worth at least one visit to one of these clinics to get a game plan for the medical management of your baby.
SOURCES:
Cunningham, C. (1999). Understanding Down syndrome: An introduction for parents (2nd ed.). Cambridge, MA: Brookline.
Stray-Gunderson,Karen. [I[]Babies with Down Syndrome: A New Parents' Guide Woodbine House. 1995
