Support group for families with disabled children?

[Anonymous]

We just learned that our 3 weeks old son has a rare genetic disorder. I am hoping to find a support group that can help us deal with this information, and with the challenges we face in the years to come. Is anyone aware of any such support groups? Thanks.

[Anonymous]

You might want to go on Yahoo Groups and go to the search for groups prompt, then type in your child's specific condition or genetic disorders. I have found several groups that way and have found it usefull to read about other parents' experiences and suggestions regarding treatments for my child's specific situation.

Good Luck!

[Anonymous]

Be strong, I am so sorry you are going through this.

My child also has a rare genetic disorder.
If you're looking to talk to someone locally, and not anonymously, perhaps we could connect.

Is there any way to contact you offline?

[Anonymous]

I have found that this area does not offer much. I have a friend who lives in Chicago and she has much, much more in the way of support groups. It's a shame.

[Anonymous]

When I learned that my son had a rare genetic disorder nearly 8 years ago, I joined a wonderful Moms group facilitated at the Arc of Montgomery County. I don't know if that group is still going on, but it was literally a lifeline for me. In addition, I joined an online listserv populated by parents of other children with the same condition and found that very helpful. Eventually, I became a member of the board of directors of a charity that raises funds for research on my son's condition, and I have met some of the most wonderful people I've ever known in my life, including the researchers themselves. The other parents on the board are so knowledgeable and reassuring, and provide emotional support when I need it.

Even when conditions are extremely rare, there are sometimes other people in the local area with the same thing. There are only 3-hundred-and-some people with my son's condition in the entire world, but there are a handful of other children in this area with the same condition, and I've become very close friends with one family and I am also friendly with another. You can sometimes find people just by networking, as you are doing now.

[Anonymous]

Anonymous wrote:I have found that this area does not offer much. I have a friend who lives in Chicago and she has much, much more in the way of support groups. It's a shame.

I agree. I have friends/acquaintances in Chicago, Michigan, Florida, Texas--ALL w/more resources, supports, programs, schools for kids with varying 'special needs'. Isn't it a shame that in this so-declared progressive, highly educated, medical-enriched area, there such things are so difficult to find?