eSpecially Ben

  Ben met Doodle today. One of the staff at his day program brought him in. Ben loves dogs and these photos made my day. 

Marjorie and her grandson, Graham Guest post by Marjorie Frick My name is Gee or Grammy depending on which grandchild you ask. I have been blessed to raise two daughters and have five grandchildren, four boys and a girl, all under the age of six. Our oldest grandchild, Graham, was born with a rare genetic disorder called Cri du Chat or 5p- . It is a deletion on the p arm of the fifth chromosome.  During the first few months of Graham’s life, we began to pick up on small clues that there might be something amiss. My daughter fought to be referred to specialists and to get some therapies started.  Graham was missing some milestones. Two of the biggest issues were feeding difficulties and sleep.  After receiving genetic counseling, we finally got a diagnosis at about seven months old. This was one of the worst days of my life.  It helped me see that one of my most important roles in being a grandparent to Graham was to be a parent to my daughter. Graham was receiving the care he needed f

  "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

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 during

  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

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 not some unk

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