eSpecially Ben

  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...

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 daughte...

  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...

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 ...

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...

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...

You’ll have to use your imagination for this football game. Too many kids in this video for me to post publicly. Scene: Ben and his class were invited to participate in a field day called, “Victory Day,” at another local high school. Ben was given a yellow shirt to wear for the day. Action: The teams are in formation to hike the ball. Ben gets the handoff. A teammate is ready to roll Ben down the field while his teammates block the opposing players. One player leaps at Ben but misses; Ben is rolling too fast down the field. Ben fumbles the ball but a teammate quickly retrieves it and puts it back in his hands. The announcer yells, “He’s in the end zone!” The players cheer! Note: Students' faces are blocked to protect privacy.

Hello, my name is Kynna Burney. I met Ben my 7th grade year of middle school in gym class where we were able to pick our peer buddies for the year.  In the gym class we were picking our buddies. Everyone was going for Ben but Ben wasn’t going for them. Finally, when it was my turn, I went for Ben and he immediately lightened up and was extremely happy. He is nonverbal, so he started getting loud, almost like a scream, and flapping those hands letting them know he wanted me. It was like we were meant to be.  Everyone was surprised as to why all of a sudden he was so happy to be with me because when I tell you he had a mean face on the whole time (LOL) but as soon as I started towards him that frown turned upside down. It was like he had me already picked from the time he saw us lining up. He was just waiting for me to come over. From that day, I continued to visit him in school and go on field trips with him. Our bond just kept getting stronger by the minute and even once we le...

  I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here.  Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me here ....

Perhaps I have mentioned before that Ben loves Bob the Builder. This photo captures Ben watching his new "Bob" video from Santa on Christmas Day while we opened presents, something he does not particularly enjoy. It was our way to involve Ben in something he likes and be with us at the same time. Rather than feel guilty and sad about Ben not participating in Christmas morning activities in the traditional way, we tried this innovative approach - and it worked well for the whole family.

Grandma and Ben at a sports bar. I don’t have to tell you how wonderful it is to be a grandparent. All of a sudden it is your house they run to instead of run away from. You receive unconditional love; you get a picture every time you show up; great hugs, kisses and all around recognition for just being you. It is kind of like being a kid again. So there you have it, I am one happy grandma. Ben was my first grandchild. I think that once we knew that he was medically healthy, I set my mind to getting him to be all that he can be. I think at first I was a little too gung-ho and did not take into consideration the feelings that my child and her husband were experiencing. I was, you have to do this.. this .. and that. That’s just me. I like to find solutions to situations. I want to know the end result. Plus I am a special educator so I know a lot of what is out there. I think I did manage to offer some good suggestions. Vanessa is very good about taking advice, and I appreciate the...

Last Tuesday, I spoke with two friends who I do not see on a regular basis. One friend shared a dream she had about Ben two months ago. We were all in front of the YMCA walking to our cars, ready to go down a staircase. My friend gave her hand to Ben to help him walk. In the dream, she said, he gave her this funny look, like, "I don't need your help." Ben was walking by himself, a bit hunched over, but walking on his own. I have had many friends and family tell me about this type of a dream, where Ben is walking or talking. It always makes me smile to think that people worry about Ben like we do, keep him in their thoughts and pray for his well-being. The other friend lives on the opposite side of the city, and we have not seen each other in a few years. She left a long message about a child she had heard about that had similar traits as Ben, and they had found something that helped the child. She wanted to send me the article about it. I have to admit, when I got the m...

If you have a child with special needs, most likely, you will also have gadgets and gizmos that help your child learn to walk, talk, eat, drink, toilet train, sit-up straight and a whole host of other skills. Some gadgets and gizmos may be a medical necessity for your child – helping them to breathe, get nutrition or stay healthy. Whatever it may be, it takes time to find out about what is available and then learn the ins and outs of each piece of equipment. But when a real good tool comes along, it can be life changing for the child and even the family. Over the next few months, I am going to introduce a few of the items we have used. I am always surprised to find out about new equipment. I hope to spread the word about things that have been worth the time, effort and cost for us. The TAOS , Therapeutic Ambulatory Orthotic System , is what I am focusing on today. Not many people have ever heard of it, even physical therapists. It is actually Ben's latest gizmo – and it is seri...

"An Extraordinary Pose" This may look like a very ordinary photo, but it is not. Ben is standing at the table on his own. Ben is six years old and it has taken him years of hard work, determination and many falls to get to this point. Even we, as his parents, will eventually take this photo for granted and not remember when this was such a struggle for him. But right now, I relish in the fact that he can get up on his own and try to steal a bit of his brother's lunch! Special Exposure Wednesday is a wonderful way for families to share inspirational photos with others. Each week dozens of sites will post their photos - please check them out.

We are so fortunate right now to have a group of therapists working with Ben that are incredible. They are motivated to work with Ben, and they create a fun atmosphere while still challenging him. In turn, Ben is working the hardest he ever has and without many tantrums and poor behavior. For the first time, I am not on the lookout for a new therapist. The “Dream Team” comes to our house every Wednesday to co-treat speech and occupational therapy. Ben is genuinely excited to see them when they walk through the door. When you take his hands to walk, he leads you to his room for therapy to begin. Using behavior and play therapy, and combining speech and occupational therapy techniques, they have come up with a solid format for each session. They use a token board to reward his work and when it is complete, Ben can watch 2-3 minutes of a video. They have had to be flexible too. One sunny day, Ben did not want to leave the front porch, they changed the plan to an outside therapy session....

When Ben started school when he was two years old, my mom said, what I thought at the time was, the strangest thing. She said, “Make sure Ben always looks neat and is clean.” Like any daughter might, I thought she was crazy. Why of course Ben will be neat and clean, I would never let him out of the house any other way. Four years later, I still think about that comment. I make sure that Ben looks his best everyday – his hair is neat, clothes clean. There was a time when I gave Ben a bath every morning before school so his hair looked just right, but I gave that up after son #3 was born. And I realized it was a bit obsessive too. Now I keep his hair short and he gets a bath and a shampoo every night. Ben does have beautiful yet unruly hair. Our children with special needs may look and act differently, raise eyebrows and get stares. The last thing we want is for their hair to be a mess, clothes dirty or disheveled. I get what my mom was saying - Ben's different, but don't mak...

One of my very best friends from a long time ago called me last week to talk about her baby who is undergoing testing for medical and developmental issues. Understandably, she is upset, sad, tired, discouraged…all the normal feelings you have when you find out your child has special needs. In the middle of her sharing about her difficult time, she apologized for not being there for me when I was going through the same thing several years ago. She told me she never understood what I was going through until now. She wished she had been a better friend to me back then. I was dumbstruck when she said it. I kind of blew it off and told her not to even give it a second thought. And I meant for her to not give it a second thought. I, on the other hand, have given it many thoughts. I even cried when we got off the phone (and remember I am not a crier.) For someone to say what she said to me meant a lot. I have no anger or bad feelings to anyone who does not understand what we we...

After two brain scans, genetic testing, three neurologists, a developmental pediatrician and Duke Children’s Hospital, we gave up on the idea of a label for Ben's disability. About 25% of children with special needs supposedly have a “non-diagnosis.” We were fairly comfortable in this category. Plus the searching was getting expensive, disappointing and tiring. On our fourth neurologist, we hit the jackpot. I brought Ben’s 2 MRI scans with me. Before seeing us, the doctor reviewed them. The neurologist walked into the room with a few brochures and said, “Ben has hypoplasia of the corpus callosum.” The doctor explained about the organizations involved in research and support, and she suggested we sign Ben up for the study in California. I read the brochures and sure enough, Ben fit. Hypoplasia of the Corpus Callosum in plain language means the bundle of 200,000 nerves that connects your left and right brain (corpus callosum) is thin (hypoplasia), about 60%. For some reason the...