When Ben was little we were never sure what his needs would be as he got older. We hoped that he would begin to talk and walk. With such a vague diagnosis, we never knew how Ben's development would progress. The idea of needing to change our home to meet Ben's needs was a fleeting thought. If Ben does not walk , was not something we spent a lot of time contemplating. Avoiding this thought was easier. Even if Ben did not walk, the future seemed a long way off. Ben is seven now and the unknown future is here and more apparent. The physical and financial problems will be major issues for us. When will we make these changes? How will we cope with these changes? Where do we add a ramp? How do we enlarge the bathroom to fit an adaptive toilet? Will our car need to be retrofitted for a wheelchair? How do we pay for it? As difficult as these decisions and financial problems will be, dealing with the emotional issues associated with these changes will be most challenging. It mea...
These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with POLR2A, a rare genetic change. 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.