eSpecially Ben

This first posted in 2009. I updated the old version. Whenever I've entered a new environment, such as college, a new job or PTA (parent-teacher association), a knowledge of a new language was needed. I'm not talking about Spanish, French or any other foreign language. I mean plain old English with a lot of acronyms and confusing words.  People accustomed to terms used in an industry or organization typically sling them around, rarely giving any thought to how newcomers might feel. You may feel out of place, even isolated and stupid. I know I have. Here’s a list of  W.A.P.s (Words, Acronyms and Phrases) I have come across over the past several years with the definition, in my own words.  Assistive Technology  – This includes all the computer equipment, special devices and technical aides that may be used to assist your child in communicating with others. DD  – Developmentally Disabled or Delayed. A lot of kids are lumped into this category as a diagnosis when none can be found.

  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 person have a priva

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 o

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 Carol