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Share Your Story Online


The Internet is a great place to get information to help your family, but it can also be a place to share information about your family -- to inspire or inform others, to gain support, to facilitate communication, to make dreams come true. These sites offer an opportunity for special-needs families to share their stories online, for a variety of purposes. Get linked here ...

... to share information about your child's condition: If your child is hospitalized or suffering from a long-term or recurring illness, it can be hard to get information to the people who care about your family without having to tell the same story over and over, or take time away from your child. The Status allows you to create a free Web page about your patient, with photos, updates, information on visiting hours and phone calls, and a guestbook for well-wishers to leave messages. A similar service, Caring Bridge, has a more informal, journal-like design, but also includes photos and a guestbook. If you want to place your child's medical history and records online so you and your child's doctors can access them easily, the Children's Medical Organizer helps you keep track, posting as much or as little information as you like. For all three of these sites, only people to whom you have given access will be able to reach your information.

... to let others reach out to your child: Children with special needs may feel isolated, unable to make friends or participate in the normal activities of kids their own age. But there are people and organizations online who are eager to make contact. Send information about your child to Hugs and Hope, and the organization will post information for volunteers to send him or her letters, cards and gifts (through a forwarding address). Bigger wishes are the business of the Make a Wish Foundation; if your child is dealing with a life-threatening illness, go to the site to make a wish referral. Kids can help each other at Starbright World, an online community for children with serious illness that can be accessed from home or hospital. Parents of participants must mail in forms and receive an installation kit before their children can join in, ensuring a safe environment.

... to tell your stories: From inspirational tales to "Can you believe this?" accounts of outrage, the Internet is full of places to share your family's experiences with others who can learn from them, laugh at them, or gain strength for the journey. Here on the About.com Parenting Special Needs site, you're welcome to give advice to the newly diagnosed or add your ideas to my articles. The forum is also a good place to share your story, and reach out to others with similar experiences.

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