eSpecially Ben

In 2011, I asked parents I knew to write about their children and the issues they face. At the time, each mother shared how they experienced day-to-day life raising a child with special needs and disabilities.  These stories have not been updated or changed.  Start here:  eSpecially Parents Our Kids June July August September Denise's Story May Edition June Edition July Edition September Edition Meg's Story May Edition June Edition July Edition August Edition September Edition Elisa's Story May Edition June Edition July Edition Karen's Story Natalie's Story May Edition June Edition July Edition August Edition Paula's Story May Edition July Edition August Edition September Edition Elizabeth's Story May Edition Michele's Story May Edition Video Link Donna's Story May Edition June Editio n August Editio n Tribute to Donna Grief

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...

  We spent the holidays with the grandparents and my sister and her family. We hadn't seen my sister, brother-in-law and their kids since 2019 because of the pandemic. It's been even longer since they've seen Ben. Our get-together was long overdue.  Ben always loves to see Aunt Olivia. He didn't miss a beat when she arrived. We rented a house on Hyco Lake, near Roxboro, North Carolina in Person County. The cousins played ping pong, foosball, soccer, Texas Hold'em and swam in the lake.  On the first day at the lake house, we set up a giant tube for Ben. Ben was hesitant at first, and his brother Michael said, "I'll demonstrate."  As soon as Ben saw Michael lounging in the tube, he slid himself to the edge of the dock. We had to act fast because once he understood what the tube was for, there was no stopping Ben. Michael and Sean helped us get Ben in and out of the tube while Aunt Olivia and Uncle Steve held the tube in place. Ben stayed in the water for...

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 Car...

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...

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.