eSpecially Ben

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they...

You’ll have to use your imagination for this football game. Too many kids in this video for me to post publicly. Scene: Ben and his class were invited to participate in a field day called, “Victory Day,” at another local high school. Ben was given a yellow shirt to wear for the day. Action: The teams are in formation to hike the ball. Ben gets the handoff. A teammate is ready to roll Ben down the field while his teammates block the opposing players. One player leaps at Ben but misses; Ben is rolling too fast down the field. Ben fumbles the ball but a teammate quickly retrieves it and puts it back in his hands. The announcer yells, “He’s in the end zone!” The players cheer! Note: Students' faces are blocked to protect privacy.

Hello, my name is Kynna Burney. I met Ben my 7th grade year of middle school in gym class where we were able to pick our peer buddies for the year.  In the gym class we were picking our buddies. Everyone was going for Ben but Ben wasn’t going for them. Finally, when it was my turn, I went for Ben and he immediately lightened up and was extremely happy. He is nonverbal, so he started getting loud, almost like a scream, and flapping those hands letting them know he wanted me. It was like we were meant to be.  Everyone was surprised as to why all of a sudden he was so happy to be with me because when I tell you he had a mean face on the whole time (LOL) but as soon as I started towards him that frown turned upside down. It was like he had me already picked from the time he saw us lining up. He was just waiting for me to come over. From that day, I continued to visit him in school and go on field trips with him. Our bond just kept getting stronger by the minute and even once we le...

  I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here.  Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me here ....

It's the perfect weather for spending time outdoors. When one person in the family has wheels or needs an easy trail, it means looking for places that are easy to maneuver with a wheelchair, stroller or other special means. Frank Smithwick, a Charlotte dad, researched local parks and found out that North Carolina has several. Here's the website:  Find a Park  and these are the accessible parks: Carolina Beach – Flytrap and Fitness Trails Dismal Swamp – Swamp Boardwalk Trail Goose Creek – Palmetto Boardwalk Trail Hanging Rock  – Rock Garden Trail Lake Norman – Dragonfly Trail Merchants Millpond – Cypress Point Trail Mount Mitchell – Summit Trail New River – Dogwood Trail Pettigrew – Boardwalk Trail Raven Rock – Longleaf Loop Trail Please add any other suggestions in the comments.

Photo credit: Special Olympics Mecklenburg County Charlotte Country Day School (CCDS) hosts the Special Olympics Mecklenburg County Spring Games each year. Abigail Ilfeld, a CCDS student, wrote this story for her journalism class: Swimming in the Spirit of Special Olympics By Abigail Ilfeld Special Olympics is a rite of passage for Charlotte Country Day students; every freshman, sophomore, and junior participates as a buddy, helping the athletes and encouraging them at events. Seniors are given special tasks to entertain athletes. Some students; however, get involved with the special needs community outside of school. Anna Hawkins Dulaney is a senior at CCDS and has been coaching a special needs swim team for 2 years; getting involved after a recommendation from Kinga Zay that Anna Hawkins’ swimming skills could be helpful in another setting. “I love helping kids discover things they could be passionate about,” she said. Swimming is Anna Hawkins passion and eve...

Ever think other families have smoother vacations than you? Read what these Charlotte parents say about what they do to make it go a bit more smoothly: Charlotte Parent: Planning for a Smooth(er) Family Vacation