When Ben started school when he was two years old, my mom said, what I thought at the time was, the strangest thing. She said, “Make sure Ben always looks neat and is clean.” Like any daughter might, I thought she was crazy. Why of course Ben will be neat and clean, I would never let him out of the house any other way. Four years later, I still think about that comment. I make sure that Ben looks his best everyday – his hair is neat, clothes clean. There was a time when I gave Ben a bath every morning before school so his hair looked just right, but I gave that up after son #3 was born. And I realized it was a bit obsessive too. Now I keep his hair short and he gets a bath and a shampoo every night. Ben does have beautiful yet unruly hair. Our children with special needs may look and act differently, raise eyebrows and get stares. The last thing we want is for their hair to be a mess, clothes dirty or disheveled. I get what my mom was saying - Ben's different, but don't mak
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.