How Do I Choose the Best down Syndrome Support Group?

Mark Wollacott
Mark Wollacott
Doctors may be able to recommend the best down syndrome support groups for patients.
Doctors may be able to recommend the best down syndrome support groups for patients.
Doctors may be able to recommend the best down syndrome support groups for patients.

Choosing the best Down syndrome support group means matching your needs with the services and support offered by groups near you. You can do this by contacting your family doctor or a local social services provider, checking local directories and searching the Internet. There are also national organizations in most countries that will help you find the right group for you. The right group for you will be accessible, warm and friendly and it will offer services and support that you feel you need as the parent of a Down syndrome child.

Down syndrome support groups should be warm, friendly, and supportive.
Down syndrome support groups should be warm, friendly, and supportive.
Down syndrome support groups should be warm, friendly, and supportive.

It is not always easy to find groups close to you that offer what you need. This is especially true in rural communities. Down syndrome is difficult for parents and sufferers to deal with and requires a lifetime of support and care. With luck and research, you can find the right support group for you.

First, list each Down syndrome support group in your local area. Expand this list to any support group that is within comfortable traveling distance. If you live in a rural area, this distance is likely to be greater than in a more urban area. Likewise, the list of local groups for a rural parent is likely to be shorter than for those in the big cities or along the Eastern seaboard, for example.

Many Down syndrome support groups are lead by the parents of Down syndrome children.
Many Down syndrome support groups are lead by the parents of Down syndrome children.
Many Down syndrome support groups are lead by the parents of Down syndrome children.

In order to make this list, it will be important to use many sources of information. Firstly, your local doctor or hospital should have information on this subject, or can put you in touch with an organization who will. Second, search the Internet for Down syndrome support groups. For this purpose, you can use those of national societies like the New York-based National Down Syndrome Society (NDSS) or the National Association for Down Syndrome (NADS) based in Illinois. These are based only in the country of their origin, but do have affiliate programs and organizations.

Many support groups are peer-led. This means the Down syndrome support group is run by the parents of Down syndrome children. These parents know how you feel as a parent of a Down syndrome child and are at different stages of the emotional and life journey as a parent. These groups can provide advice, emotional support and other services as well as provide a sense of community.

You can also find a Down syndrome support group on the Internet. These operate exclusively online and do not provide regular face-to-face meetups. The advantage of these is that they do provide emotional support and they can dispense with advice, as well as hold pages of information. They are good for people who cannot reach another support group. The disadvantage is the distance and lack of face-to-face support or physical support.

If you find a local Down syndrome support group that you believe is a good fit for you and your child, then arrange to join a meeting. Many groups are only too happy to have someone visit and see how the group operates. It is important to meet people and decide if the group is a good fit for you. Do not feel obliged to return each week if you feel it is wrong for you or you feel certain members do not fit your personality. It is OK to keep trying new groups.

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    • Doctors may be able to recommend the best down syndrome support groups for patients.
      Doctors may be able to recommend the best down syndrome support groups for patients.
    • Down syndrome support groups should be warm, friendly, and supportive.
      Down syndrome support groups should be warm, friendly, and supportive.
    • Many Down syndrome support groups are lead by the parents of Down syndrome children.
      Many Down syndrome support groups are lead by the parents of Down syndrome children.