eSpecially Ben

  In 2012, the editor of Charlotte Parent asked me to write a short story about Ben for the magazine's April issue. " A Goal of Independence " was my first published piece and the beginning of my career as a professional writer.  When I wrote the story, Ben was 8-years-old. At the time, I recognized how important it was for us to assist Ben in becoming independent. As a mom, it's hard to let go and easy to just do the task for them. I shared an example in the Charlotte Parent story: Ben's brothers scolded me for feeding Ben, rather than letting him feed himself  Ben is almost 19-years-old. He’s lived 90 miles away from us for six months in an alternate family living situation. Although we visited him two to three times a month, I didn't notice how much he matured until we brought him home in mid-March.  He's calmer, more alert and attentive. We've been able to decrease behavior and sleep medications significantly. We'd tried this in 2020 with disa

A few weeks ago, Ben was brought home from camp without his Convaid stroller. I panicked. I kept myself together for the sake of the community worker, but I was beside myself. I mean I really came close to an anxiety attack. I called Ryan to tell him of the dilemma and he too had angry words about the situation. Our biggest fear was that Ben would not go to sleep at night and we would have nowhere to secure him. His sleep schedule has been crazy - up until after midnight wanting to roam the house, getting into things he need not get into. Our sleep and Ben's safety were our two main concerns. I realized, fairly quickly, that my anxiety was something to examine. I saw that we had become dependent on strapping Ben into his chair when he would not go to sleep. Perhaps this "no-chair" night would help us develop new strategies for bedtime. We made it through that night, and we have since consulted with the neurologist. Time release melatonin for Ben is working some