eSpecially Ben

I'm Ben's unofficial and unpaid administrative assistant. I keep his files and medical records and stay in touch with therapists, doctors, teachers and equipment providers.  When Ben reached 17 and a half, I started the paperwork for him to transition to adulthood. His care manager encouraged me to get the forms filed on time, otherwise, we could run into problems later. The information below is based on my experience. Yours may be different; every family has its own unique situation. Conduct your research, ask questions and if you need to consult an attorney, please do so. My story is not meant to serve as legal advice. Here's what I did: 1. File for legal guardianship.   Each state has its own set of rules for legal guardianship. We filed in Mecklenburg County in North Carolina and it was an easy process. I filled out forms online six months before Ben turned 18. I went to the courthouse with the forms, signed additional documents and paid a fee, around $150.  North Carol

Matt and I attended high school in New York together. When he saw the announcement about "Parenting an Adult Child with Disabilities"  on Facebook, he commented on it. I like to get varied perspectives on "eSpecially Ben" and asked Matt to write about his son, Harrison. And it's always good to connect with a high school classmate.

  Courtesy of Wheel the World Seas The Day: 3 accessible beaches for families with special needs When our son Ben grew too large to be carried from his wheelchair to the beach, we wondered how we’d manage future trips to the shore. His favorite pastime is splashing at the ocean’s edge, and we didn’t want him to miss out. Once we learned about beach wheelchairs—a chair equipped with large, inflated wheels that can roll across the sand without sinking—we only chose beaches that had one available. Read my latest story in Charlotte Parent:  Accessible Beaches in North and South Carolina

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 tru

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 left middle

  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 .