eSpecially Ben

On Saturday, Kidz That Care , a nonprofit organization in Charlotte, visited Ben's Easterseals UCP group home to "Pack the Pantry" with groceries and beautify the front porch with flowers. Ben joined the group outside and watched them plant poinsettias, sweep leaves and wipe down tables.  I wasn't sure how engaged Ben was in the activity but when I tried to take him for a walk, he made it clear he wanted to stay and observe. He hugged the one adult with the group (not the photo above).  When the group was leaving, Kidz That Care asked to take a photo with Ben. I noticed how Liam, one of the teen volunteers, kneeled next to Ben rather than stand behind him. Usually people not comfortable around Ben are hesitant to get close. I was impressed with Liam's willingness to bend down and be at his level. Then Ben leaned in for a hug and held on to Liam for several minutes. Ben's hands were tight around Liam's neck and he kept his head on Liam's shoulder. It w...

  On September 27 of this year, we introduced Ben to our new puppy, Bailey. The pup was just two months old and on her second day with us. I wanted Bailey to know Ben from the start – get used to Ben's wheelchair, loud vocalizations and rough touch.  We started out slow, with just a few minutes of interaction and then a break. We encouraged Ben to use an open hand to pet Bailey. We were careful not to let Ben grab her too tight. We did this as often as we could, each time giving the two a break and then bringing them together again. The process has worked: The two are friends. Now Ben reaches out to Bailey to let her lick his hand. I've seen him be gentle with Bailey without prompting from us, letting her lick his fingers. Ben has grabbed her fur and legs a few times, and Bailey has let out a yelp to let him know this is not acceptable behavior.  We've learned some lessons along the way: Ryan was getting choked by Ben on this ride to the greenway. Ben wanted to reach Bail...

  In 2012, after conducting a blood test on Ben, GeneDx reported that he tested positive for a mutation on the MECP2 gene on the X chromosome. The summary also said the information was inconclusive for  Rett Syndrome . I didn't have the mental capacity to find out what all of it meant. I realize now, that even if I had, I wouldn't have found much of anything about Rett Syndrome in males. The research didn't exist yet. It has since blown up. About a year ago, I researched Rett Syndrome in males and reached out to a few doctors conducting successful clinical studies on mice. They returned my emails immediately and added Ben to a list. I forgot about it for another year. Two weeks ago, I looked up Rett again. I found much more information, including a new drug, DayBue . It was approved by the FDA and released in March 2023. I emailed a different set of doctors and they connected me to experts in the field of Rett, clinical studies and family resources.  I discovered a few F...

  My winter story in Upstate Lake Living Magazine features four towns in Western North Carolina with ski and winter activities. Although Ben is not one for cold-weather sports, I did find it interesting that Beech Mountain Resort offers Adaptive Ski Week in January. Read the story below. 

  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.