It has been a tough couple of weeks - Ben, for some unknown reason, has not been sleeping. One night, he actually never slept. I mean, he never ever slept a wink. Not once. Other nights, it was not until 3 or 4am that he fell asleep. Some nights he woke at 1:30am and was up for the rest of the evening. On some of these nights, when I was at my wits end, I gave Ben a sleeping pill or Benadryll, a dose that would normally knock out an adult, let alone a 50lb kid. Alas they did nothing for him. One night, he spent the entire eight or more hours laughing hysterically while watching Bob the Builder movies. Between his cackling and my husband's bronchial coughing, I thought I might lose all sanity. I tried soothing music, laying down with him in my bed, his bed and on the couch. I gave sleeping meds sometimes and others not. When those ideas did not work, I turned on the TV, then thought it was too much stimulation and turned it off. I locked him in his chair, I kept him out. Nothing
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.