Walking in the neighborhood When it comes to locating resources for Ben, it's taken patience, time and energy. I've had the support of my husband, Ryan, and family to do the administrative work it takes to find resources for a person with disabilities. I'm fortunate to be able to have the time to hunt down resources for Ben – and I also enjoy it. I talk with families often, and I've seen a pattern in the ones who have a difficult time gathering information and resources. They come to me frustrated, disenchanted and sometimes with the wrong information. Here are my suggestions for finding resources and using them to best serve your child: 1. Ask the right people for assistance. Lately, I've been talking with parents who can't find information about certain topics. When they tell me who they've asked, it's the incorrect person. The parents are frustrated because they thought the person should know the answer. If you ask a doctor about community servic
These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation. My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.