eSpecially Ben

  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 Fac

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

  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

  Last August, we moved Ben into an alternative family living (AFL) placement, about 90 minutes from our home in Charlotte. It was a three-bedroom house and Ben was given the largest bedroom with its own bathroom.  A typical AFL in North Carolina operates like this: a person with disabilities, the client, moves in with another family, couple or an individual. The client lives in the family’s home and the family receives payment in return for housing, feeding and caring for the client.  Ben’s AFL was unusual: A couple with extensive caregiving experience wanted to run a three-bed group home but needed to apply for the license through the state. They were willing to take Ben as the first resident in a house, separate from the one they lived in. The plan, according to the couple, was to get approval for the group home within a couple of months.  We ordered Ben a double bed, headboard, 54-inch television, new sheets, towels and blankets. Friends helped us move him in.  By mid-March, Ben re

  Ben with Carla Payne, January 2022 When I was a student at the University of North Carolina at Charlotte 30 years ago, I worked in the Alumni Office. Carla Wyatt Payne was the assistant director of Alumni Affairs and my boss. We became friends and have been part of each other's lives ever since. She and another friend were the first ones at the hospital when Ben was born. I asked Carla to write about what she does as a care manager. The care managing profession is an invaluable resource to families who need assistance managing the care of loved ones. – Vanessa By Carla Wyatt Payne I became a Certified Professional Care Manager following the death of my father. As a family, we struggled to navigate the medical health care system. We couldn't afford services or find support for my dad's advancing needs. The month after his death, I returned to graduate school to study gerontology and discovered the profession of care management.  Since 2010 I've worked with over 500 fam

  If you've landed on this page, you're deep into research about group home placement. By this point, you've found a few agencies with group homes and you want to take the next step and send in an application and referral packet. I can tell you what I did with our son, Ben. It may be different for your family, based on your comfort level with sharing information with others. Most agencies will have an application to complete. Some will ask a lot of questions and some won't. No two are alike – I've completed more than 10. I wish they had a Common App for group homes.  Always include the contact information for your child's care or case manager. I sent a copy of the most recent document with every application: Budget for services, if your child has one  IEP - Individual Education Plan  ISP - Individual Service Plan  Legal Guardianship document  Medicaid Card  Medication list Photo of Ben - I use every opportunity to make the process about a person and not some unk

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 o

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.