eSpecially Ben

  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...

If you’re a parent of a child in school and that child has a special need, you have experienced the IEP – Individual Education Plan - meeting. Endless information about IEP documents and meetings can be found at conferences and in magazines, books and websites. Unfortunately, there are many horror stories about IEPs. Anxiety, fear and dread would probably be on most people’s list of how they feel about the meeting. I don’t dread IEP meetings anymore. I believe they can lead to creating successful goals for your child and the meetings can be done with little stress and anxiety.  Here are six suggestions based on what I’ve learned from researching and participating in IEP meetings for the past 16 years: Treat them to food. Donuts, muffins, cookies and juice and/or coffee make friends. Food puts everyone in a good mood, and it makes the atmosphere less tense. And in some cases, it may serve a very practical purpose - teachers and other school staff do not get much time to eat dur...

  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....

If you're looking for a creative way to make your morning routine smoother, this is something I did when our boys were young. To clear up any confusion about our boys: At 10 years old, Logan chose to go by his middle name, Michael.  This was first published in 2010. Our mornings are hectic just like everyone else's. I found myself yelling more than I like to so I came up with this crazy idea - and it's working. We all went to the trophy store and chose three trophies. The trophies were "engraved" with one of these: Today's Winner: Good Breakfast Eater Today's Winner: Excellent at Following Directions Today's Winner: Showing Good Behavior Rules: Each morning, Ben, Logan and Sean have the opportunity to receive one or more of the trophies. At the end of the morning, they may be presented with a trophy.  Not everyone has to get a trophy.  The winner keeps the trophy in their room for the day (think Stanley Cup).  At night, the trophy goes back...

  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...

This first posted in 2012. I added a few new images. Some things – eating hotdogs and ice cream and loving the water – never change. 2022 2012 2022 2012 We visited Ryan's Dad this past weekend. He lives at Lake Lure (most known as the set of "Dirty Dancing"). Ben had a great time in the water and especially on the inflatable boat where his brothers did all the rowing. After eating almost two hot dogs, homemade ice cream and chips, he found his spot on the pontoon boat and dozed. Logan loves the look Ben gives him - the look of love. It is easily seen here. Logan tells everyone that Ben loves him best, and then points to me and says, "even more than he loves you." I cannot argue - I don't get that look of adoration.

  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 no...

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 no...

  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...