With summer approaching, most families change their schedules to include vacations and downtime. It is a celebrated time, one that most parents reminisce about their own childhood summers filled with beaches, pools, late nights watching the stars, camping and roasting marshmallows. As parents we try to reinvent this for our own children because we enjoyed it all so much. But it can be tiring! As I have said last year in Surviving Summer , this is probably the most difficult season for parents with children with special needs. Typically children with special needs thrive on a constant schedule filled with short bursts of activities that change at regular intervals - like a classroom setting or a well-run camp. Parents and families trying to imitate this is near impossible without their own housekeeper and camp counselor staff. I had a taste of summer this past week. It was spring break for us and all three boys were home with me. We had late mornings and then an activity and doctor&
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.