Within two days, we have received great news about three things related to Ben: 1. When Ben's old tricycle proved too small for him, we started the process to purchase him a larger one a few months ago. Ben's new case manager, who has been on top of the process, called yesterday to say that it had been approved. By the end of January, Ben will have a new blue bike to ride around on. Woohoo! 2. Yesterday afternoon, Ben brought home a letter about where he will attend middle school next year. I visited the two schools closest to our home and one stood out as the best fit. I wrote a letter requesting this specific school, stating the reasons and also called a few people to let them know our preference. I was prepared for a long appeal process if Ben did not get assigned to this specific school. Looks like I can put down my battle axe - Ben was assigned our school of choice. Hallelujah! 3. Since 2013, I have been working to get an accessible bathroom for Ben. It has bee
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.