eSpecially Ben

By Olivia Normandin My 23-year-old nephew, Ben, has lived in a group home in Charlotte, North Carolina, for more than four years. He has many opportunities to visit parks, museums, restaurants and make friends at his day program and group home. Through Ben, I became familiar with Steven, another resident who lives at the group home. A few years ago, my sister, Vanessa, told me that Steven loved creating drawings and giving them to the volunteers she enlisted to help at the group home. At the time, I thought, “I should write to Steven.” But, as life often does, time got away from me, and I never did. This year, I found myself with extra time and began looking for volunteer opportunities in my community. During my research, the old idea of becoming a pen pal came back to me. Ben Pals was born: The name is a play on my nephew’s name and the brainchild of my husband. Ben Pals is a program created to build lasting relationships between individuals with intellectual and developmental disab...

  I wrote this story about Cakeable, a nonprofit in Charlotte, in celebration of National Disability Employment Awareness Month."  Building Skills for Employment History of Disability Employment Month: " In October 2026, we celebrate National Disability Employment Awareness Month (NDEAM), an annual recognition of the positive impact of people with disabilities in the American workforce.  "This yearly event began in 1945 as a weeklong national observance of the contributions of people with physical disabilities. In 1988, Congress designated the commemoration as NDEAM, which then evolved to acknowledge the importance of increasing employment opportunities for people with disabilities, including those with mental health conditions and other nonobvious disabilities.  "In 2001, ODEP was created and entrusted to administer NDEAM, including the selection and promotion of its annual theme."  Office of Disability Employment Policy

When Ben moved into his group home more than four years ago, a friend suggested we plan a tailgate party for the residents. Since then, we've hosted therapy dogs, yoga, live music, gardening days, crafting events, trivia games, bingo and much more.  Friends, neighbors and family members serve as the volunteers. Staff jump in to help. The residents go along with most of the activities we plan. Their favorites are definitely music trivia and bingo. And we must bring snacks; they never ask but I wouldn't show up empty handed. Unintended Results of Volunteering  1. Opens communication between our family and the staff at the group home. 2. Introduces others who volunteer to group home living. They develop friendships with Ben and the other residents. 3. Forms partnerships with local schools and businesses. The Beta Club at the local Montessori high school volunteers each year. Several businesses and foundations continue to donate every year. 4. Connects us to Ben in another way. If...

Disability Night Out is Saturday, October 10, 2026 It's a community night out, a collective action, and a real-world access check, all at once. People with disabilities, their families, and allies dine out together nationwide. Aim to be at the table between 6 and 9 p.m., your local time. Pick a restaurant, show up and tell us what happened.  Send us the details at here.  Learn more and get the details: Disability Night Out. 🠞Where are you headed for Disability Night Out?

Many years ago, I created a book to share with new staff, therapists and teachers. I update it as Ben's needs change but the core stays the same. It's been a quick way for people to learn about Ben – and it's written from Ben's perspective, giving him a voice to share his story and preferences. Make a book with these sections: Family members Friends Favorite foods Favorite people Quirks and skills Favorite movies and TV shows Favorite activities Add current photos of your child as well as older ones to give readers context. Include sections that fit for your child such as medications list, doctors' contacts, equipment, things to avoid, calming activities, allergies, diagnosis details, etc.  🠞Let me know in the comments what you'd add to your child's book. Here's a sample from Ben's book: Quirks & Skills ·        I don’t like my shirts or pants to be pulled up. Roll up my sleeves and I’ll have them down faster than you can say, Jack Russell. · ...

If you’ve been following the news, you may have heard about a recent court case in Texas that threatens a law that protects people like Ben from entering institutional facilities such as nursing homes instead of living at home or in a group home. Community integration and community-based services have been at the core of Ben's life – these program are the reason why he thrives now as a 23-year-old man. A  threat to these services is a threat to so many individuals with disabilities. SUMMARY Texas v. Kennedy changes how disability care rules are handled.  What the rules were: In 2024, the federal government made rules requiring states to help people with disabilities live in their own homes and local communities instead of forcing them into nursing homes or institutions. What the court decided:  Alaska, Florida and Texas sued to get rid of these rules. Many more states were involved in the beginning but withdrew due to advocacy pressure . The federal government agreed to...

Since 2023, we've been planning activities and events at Ben's group home in Charlotte. Family, friends, neighbors, local schools and businesses, and local and national nonprofits have contributed in so may ways. Together, we are a team! The Easterseals PORT Health group home manager, Tylesha, makes volunteering at the house easy. She removes barriers to ensure her residents get the best experience while living under her care.  Thank you!  

  My sister, Olivia, started a pen pal program in honor of Ben: Ben Pals. Read more about it in this Easterseals PORT Health newsletter: Time-Honored Letter Writing Ben with Olivia

  In September, Ben celebrated three years living in a group home in Charlotte, North Carolina, with five other men. Ben lives 20 minutes from our house, and we see him several times a week for doctor's appointments, to drop off supplies, for group home events and sometimes because I just miss him. Ben occassionally sleeps over, and he often spends a weekend day hanging out on his favorite couch, watching videos at our house. This Easterseals PORT Health home is Ben's second placement. The first placement through another agency didn't work out, and he left after six months . We were wary of trying a new place, but it's worked out well. My husband, Ryan, and I have developed a partnership with ESPH. Over time, we've built mutual respect and trust with the residents and staff.  Here's what's worked for us: 1. Get involved with the group home. Ben lives with five other men in a six-bedroom house in Charlotte. On move-in day, Steven, one of the residents, made ...

  Dear Senator, Our 22-year-old son Bennett McCall was born with a rare genetic disorder. He’s nonverbal and uses a wheelchair to get around. He also loves to swim (he can walk in the water), roll along greenways and meet up with friends. He started early intervention at 6 months old and continued through the public school system until he was 19 years old. Ben is a product of the special education program. I am deeply concerned about the Administration’s decision to fire nearly all staff in the Office of Special Education Programs (OSEP) at the US Department of Education. For 50 years, the Individuals with Disabilities Education Act (IDEA) has had strong bipartisan support, and we are counting on Congress to ensure these firings are reversed. If not, this will have a devastating impact on babies, toddlers and all children with disabilities. The staff in OSEP are the people who ensure states follow IDEA, the law that guarantees children with disabilities the right to a fr...

  Ben is thriving in his group home in Charlotte. I wrote about what he's been up to in this story in Southpark Magazine:  Givers: All together Happy Holidays! Photo Credit Grant Baldwin Photography "Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence How I Make Being a Mom and Volunteer Work at this Group Home

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...

  UPDATE: About two months after writing this post, we visited a genetic center in South Carolina and received a true diagnosis for Ben. He has a rare genetic disorder called POLR2A.  Ben also has the MECP2 anomaly, connected to Rett Syndrome, but when I was tested, I tested positive as well as one of Ben's brothers. It was determined that this genetic change was not the root cause of Ben's disability. - - -  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 studi...

  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.