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Now What?

You have told some close friends and family about your expected baby's condition; you have cried and laughed and wondered, "How could this have happened?" Here are three suggestions that should bring you and your family some well-earned peace of mind:

1. Get informed! Try to gather as much information as possible, but don't become obsessive. Knowledge is power, but too much information creates overload. So take it slowly. Learn about your child's condition, review hand development, research helpful specialists, and learn what kinds of issues to anticipate as your child develops. Armed with knowledge, you will feel more confident as you make difficult choices about how best to help your child. Some parents have interviewed pediatricians and visited hand clinics at the nearest children's hospital and met with staff even before their child was born. Don't be afraid to ask your doctor questions!

2. Find Support! Like every parent in your shoes, you want your child to have the exact same opportunities in life that he would have had with a "normal" hand. How you react to your child's anomaly will affect him more than any other thing that you will do for him over the course of his life. Your child will internalize the numerous verbal and physical cues that you give him about his hand well before he ever realizes that his hand is different. So give yourself, your family, and your child a huge gift and find the people or organizations that will help you deal with the situation - like a professional therapist or a support group. Connecting to other parents who have children with hand anomalies will help you feel less isolated and anticipate issues that may arise. Encourage your spouse and other family members to seek help, too.

3. Find Role-Models - for you and your child. Before she knows that she is different, give her repeated opportunities to meet other children who are like her. It will make a world of difference for her - and for you and your family - to know that she is among peers. The acceptance that she will experience in group like this will be truly astonishing.

Here are some resources:

Helping Hands Foundation, Inc.
A Massachusetts-based support group. Has an online discussion board, holds annual events, and publishes newsletters & member directory.

Helping Hands West. Same group as above, based in Northern California.

limbdifferences.org
Message Board with an orthopedic surgeon who specializes in congenital and pediatric upper extremity problems. You have to be a member to post on the message board, but you can read the entries without joining.

unlimbitedpossibilities.org
Assists families with the challenges of upper limb differences; based in Long Island, New York but welcomes families from anywhere.

Superhands.us
Profiles of children with a variety of upper limb disabilities. You can email the children's parents directly.

If your child's anomaly extents beyond the hand, check this site: Mothers United for Moral Support

© 2004. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy.
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