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...

Coastal communities are helping people with disabilities navigate a beach vacation through ramped and paved walkways, accessible hotels and mobility mats. And beach wheelchairs make it possible for wheelchair users to enjoy the sand and ocean. Carolina Beach, North Carolina Ben was just weeks old when he first experienced the beach. When he was old enough, he spent time in the ocean and sand. He fell in love with the sounds, the excitement of each wave hitting his body and the grit of sand in his mouth.  For the past few years, Ryan and I have been taking Ben on his own vacation, a Beach Birthday. The getaway is all about Ben – what he wants to do, eat and see. Our other sons don't come along on purpose because we want to focus our energy on Ben. (As we get older, we may need the other boys for their strength.) The first time we planned a Beach Birthday, I scheduled two nights in Beaufort, South Carolina at a Hilton Garden Inn. The hotel was great – walkable to local eateries with ...

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...

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...

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...