Finding Community When It Is Everywhere

I’ve mentioned a few times before how I founded Born Just Right because I didn’t have many resources when Jordan was born. All I had was my doctor using the term “amniotic band syndrome” and sent me on my way after we left the hospital. We knew Jordan’s joints were loose (they still are) and she didn’t have a left elbow or hand. In the years that followed, I’ve learned a lot. I’ve seen a lot of changes.

There are dozens of limb difference groups on Facebook. There are multiple websites and blogs. There are more and more people who are public figures who help represent limb differences to a larger mainstream audience. It’s pretty amazing. But how do you find the information that you need for your family? Read eight years of blog posts on this site? That seems like a lot of work.

I’m trying to wrap my head around the best resources out there and see if there’s a way I can collect and share the information that is available in an easier way for you. There are questions I see often: How do I help my child become more self-reliant (getting clothes on, potty training)? How do I help prepare my child for school (pre-school, Kindergarten, a new school district)? How do I deal with questions and how do I help my child deal with questions? Should my child go to physical or occupational therapy? How do you get the best prosthetics? Should my child use prosthetics?

The questions go on and on.

In the next few weeks, I’m going to start working on a content analysis of the information I have on Born Just Right. I’d love to hear from you and learn what resources you feel the limb difference world is still missing. What information are you struggling to find?