eSpecially Ben

  Ben is thriving in his group home in Charlotte. I wrote about what he's been up to in this story in Southpark Magazine:  Givers: All together Happy Holidays! Photo Credit Grant Baldwin Photography

  WSOC-TV's reporter Elsa Gillis contacted me this summer about featuring the activities we've been planning at Ben's Easterseals UCP group home in Charlotte in the new series Carolina Strong. She'd heard about the events from a local public relations professional who follows me on Facebook.  Here's the clip:  Carolina Strong: Local mother spreads joy at home for people with disabilities The feature on WSOC has brought much-needed attention to group home living: A local school is providing a front porch makeover in the coming months. A grant is supplying the materials for our activities and other neighbors and friends have reached out about volunteering at events.  Photo: WSOC-TV visited Ben's Easterseals group home on Oct. 10, 2023.

  Carolina Beach, NC This story I wrote for Cardinal & Pine, a news outlet in North Carolina, gives us a starting point for Ben's Beach Bucket List: 6 Must-Visit North Carolina Beaches That Are Wheelchair-Accessible

  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...

  Last August, we moved Ben into an alternative family living (AFL) placement, about 90 minutes from our home in Charlotte. It was a three-bedroom house and Ben was given the largest bedroom with its own bathroom.  A typical AFL in North Carolina operates like this: a person with disabilities, the client, moves in with another family, couple or an individual. The client lives in the family’s home and the family receives payment in return for housing, feeding and caring for the client.  Ben’s AFL was unusual: A couple with extensive caregiving experience wanted to run a three-bed group home but needed to apply for the license through the state. They were willing to take Ben as the first resident in a house, separate from the one they lived in. The plan, according to the couple, was to get approval for the group home within a couple of months.  We ordered Ben a double bed, headboard, 54-inch television, new sheets, towels and blankets. Friends helped us move him in....

More than four years ago, when Ben turned 14, I started touring group homes and residential facilities in North Carolina to see what was available.  At the first place I visited, the social worker’s warning stayed with me: “Don’t wait until you’re in a crisis to have a plan for your adult child with special needs.” She’d recently turned away elderly parents who were hoping to leave their son at the facility. The wait for a bed there was a decade. Over the past four years, I've toured a few group homes and one facility. I've spoken with more than a dozen in-take staff with agencies specializing in group homes, alternate family living (AFL) placements and intensive care facilities. An AFL is when your child lives with another family or individual who takes care of them in their own home.  Starting early gave me the advantage of working out the emotional turmoil that goes along with placing our son in another living situation. An avalanche of emotions hit me after the first tour ...

This was written 12 years ago: More than a week ago, my husband noticed that Ben was falling forward. He banged his head badly on one of these occasions. I was away the weekend, but when I came back, Ryan showed me how Ben was drifting forward while sitting in the bathtub. That evening I emailed Ben's teacher to ask her if she had noticed anything. The next day, Ben's teacher called me to say that, in fact, she noticed Ben falling forward often. She and the assistant thought it could be an ear infection. I was able to get Ben in with a pediatrician that afternoon. I prayed it would be an ear infection. But life being what it is, of course, it was not an ear infection. That would have been too easy.  The pediatrician was a doctor whom we had not seen before. She was serious and focused. Ben's ears were fine, but she persisted with questions and was obviously concerned. While we waited in the office, she called Ben's neurologist who recommended an EEG for Ben the next mor...