Several years ago, Ben received a touch screen monitor from an assistive technology organization. Ben found ways to take apart the computer, eat the wires and throw the very light monitor onto the floor. When we tried the programs with Ben, his focus was more on how to eat, taste and destroy the components of the computer, rather than on the actual activity. After looking for a desk that would serve Ben's needs and not finding one within our budget, I asked my husband's father if he would consider building one. Always up for a construction challenge and helping his grandson, he said yes, without really knowing what he was getting himself into. We emailed back and forth drawings and designs and finally came up with something we thought would work now and grow with Ben as he got taller. With the help of his long-time friend and his woodworking workshop, Ben's grandpa built an impressive desk. The desk features a locked cabinet for storage. Ben is able to g...
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.