eSpecially Ben

  Walking in the neighborhood When it comes to locating resources for Ben, it's taken patience, time and energy. I've had the support of my husband, Ryan, and family to do the administrative work it takes to find resources for a person with disabilities. I'm fortunate to be able to have the time to hunt down resources for Ben – and I also enjoy it. I talk with families often, and I've seen a pattern in the ones who have a difficult time gathering information and resources. They come to me frustrated, disenchanted and sometimes with the wrong information.  Here are my suggestions for finding resources and using them to best serve your child: 1. Ask the right people for assistance.  Lately, I've been talking with parents who can't find information about certain topics. When they tell me who they've asked, it's the incorrect person. The parents are frustrated because they thought the person should know the answer.  If you ask a doctor about community servic

  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

Coastal communities are helping people with disabilities navigate a beach vacation through ramped and paved walkways, accessible hotels and mobility mats. And beach wheelchairs make it possible for wheelchair users to enjoy the sand and ocean. Carolina Beach, North Carolina Ben was just weeks old when he first experienced the beach. When he was old enough, he spent time in the ocean and sand. He fell in love with the sounds, the excitement of each wave hitting his body and the grit of sand in his mouth.  For the past few years, Ryan and I have been taking Ben on his own vacation, a Beach Birthday. The getaway is all about Ben – what he wants to do, eat and see. Our other sons don't come along on purpose because we want to focus our energy on Ben. (As we get older, we may need the other boys for their strength.) The first time we planned a Beach Birthday, I scheduled two nights in Beaufort, South Carolina at a Hilton Garden Inn. The hotel was great – walkable to local eateries with

Ben pet several dogs on this Charlotte greenway. It really made him happy. Ben and Grandma on the Charlotte greenway. 2023 is North Carolina's Year of the Trail. I cover several accessible trails in this story in Carolina Country magazine:  A Path for Everyone

  My first personal essay was published in Our State this month. I talk about Ben's adventurous spirit in  Unlimited Possibilities .

  Ben met Doodle today. One of the staff at his day program brought him in. Ben loves dogs and these photos made my day. 

Marjorie and her grandson, Graham Guest post by Marjorie Frick My name is Gee or Grammy depending on which grandchild you ask. I have been blessed to raise two daughters and have five grandchildren, four boys and a girl, all under the age of six. Our oldest grandchild, Graham, was born with a rare genetic disorder called Cri du Chat or 5p- . It is a deletion on the p arm of the fifth chromosome.  During the first few months of Graham’s life, we began to pick up on small clues that there might be something amiss. My daughter fought to be referred to specialists and to get some therapies started.  Graham was missing some milestones. Two of the biggest issues were feeding difficulties and sleep.  After receiving genetic counseling, we finally got a diagnosis at about seven months old. This was one of the worst days of my life.  It helped me see that one of my most important roles in being a grandparent to Graham was to be a parent to my daughter. Graham was receiving the care he needed f