eSpecially Ben

  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

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...

  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 studies on mice. They returned my emails immediately and added Ben to a list. I forgot about it for another year. Two weeks ago, I looked up Rett again. I found much more information, including a new drug, DayBue . It was approved by the FDA and released in March 2023. I emailed a different set of doctors and they connected me to experts in the field of Rett, clinical studies and family resources.  I discovered a few F...

  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.

  An art project we did at Ben's group home this summer. Ben moved into an Easterseals group home on September 12, 2022. Today, we celebrate one year with him not just living there, but thriving. Ben's formed friendships with his housemates and the staff who work there.  The move to this Easterseals group home was his second time moving out of our house. In 2021, Ben moved to Greensboro, 90 minutes from our home in Charlotte, North Carolina. He'd been living in an AFL - alternative family living - situation through a different agency. It didn't work out. For more details, read  here . The day program has a living room for activities and relaxing. Ben moved home for six months while we searched for another living situation for him. During this time, we found an incredible day program. I happened to see a post on Facebook with photos of happy individuals involved in all sorts of community activities. I connected with the staff, and Ben started in June 2022.  Swimming a...

  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

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 .

  "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

This was first published in 2013 and unfortunately, we're having some of the same behaviors again. Ben's been waking at 2 a.m., not knowing exactly what he wants and where he wants to be. On some of the worst nights, he moves from his bed to the couch to the refrigerator, then to his favorite armchair and back to his bed again.  This takes at least an hour and I am following behind him as he makes his way. It would be unsafe to leave him to his own devices in the middle of the night.  Since this post in 2013, we have charted Ben's sleep, daily routines and behaviors. We've noted that he wakes 10-15 times a night each month. It doesn't seem related to how much activity he's had during the day or what food he's eaten. Many families with a child with a disability face sleep issues. Sleeping pills, essential oils, solid bed routines and begging our child to sleep don't seem to work all the time. If you see us walking around, looking like zombies, this could ...

  In 2012, the editor of Charlotte Parent asked me to write a short story about Ben for the magazine's April issue. " A Goal of Independence " was my first published piece and the beginning of my career as a professional writer.  When I wrote the story, Ben was 8-years-old. At the time, I recognized how important it was for us to assist Ben in becoming independent. As a mom, it's hard to let go and easy to just do the task for them. I shared an example in the Charlotte Parent story: Ben's brothers scolded me for feeding Ben, rather than letting him feed himself  Ben is almost 19-years-old. He’s lived 90 miles away from us for six months in an alternate family living situation. Although we visited him two to three times a month, I didn't notice how much he matured until we brought him home in mid-March.  He's calmer, more alert and attentive. We've been able to decrease behavior and sleep medications significantly. We'd tried this in 2020 with disa...

  When our son, Ben, turned 14, I started researching group homes in North Carolina. I visited one large facility and one six-bed group home. I felt overwhelmed, sad and scared after those two visits. The experience made me aware of how difficult the process would be, both emotionally and mentally. Although your child may have a case manager to help locate agencies with group homes and alternative family living placements, most of the process is up to the family. Once you narrow down a placement, here are questions you might want to have answered: Staff How are staff vetted for employment? What experience does the agency have running group homes? How many staff are on duty throughout the day?  How does the agency recruit and retain staff? Is someone awake during the night in case my child needs assistance? Home Who are they looking for to fill the space within the group home? Co-ed or single gender? What's the layout of the house?  How many bathrooms?  Does each pers...

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.