eSpecially Ben

When I pick Ben up from school, usually one of the staff bring him to the office. Today, they were short-handed and asked if I would walk down to the classroom to get him. As I turned the corner, I saw his classmates lined up on the colored tile, and Ben on the opposite side turned around in his chair, not listening to directions. The teacher was congratulating the class on lining up well and sweetly admonishing Ben for trying to get the attention of one of his friends. Ben heard my voice and realized I was there, and he reluctantly tore himself from looking at his friend, a little girl he has been sweet on for a few years. He wore the biggest smile on his face. As we left, he tried to touch one friend who quickly told on him, in a big sisterly sort of way. Another long-time classmate reached for a hug to say goodbye. There was a chorus of, " Bye Ben " from the other children. All the while, Ben was smiling, very happy to be around his gang of friends. Made my day - we

POW! SLAM! KABLAM!

This was a post I saw on Facebook - worthy of sharing here. I am also including links to the Special Olympics Unified Sports Program, a recent program that is gaining traction all over the world. My Brother is Not Less Than Special Olympics Unified Sports New Legislation - Supported by Gov. Christie *We are about six months away from our local Special Olympics Opening Ceremonies. 

In the course of working on purchasing new equipment for Ben, I made contact with someone who developed a list of funding sources for families. She would prefer not to be named - we will just call her Angel. Angel did this on her own, to help the families who do not have a way to pay for the equipment their children desperately need. If you know of others we can include on this list, please add in the comments section or email me directly. The web addresses and information have been checked as of today, October 24, 2014. Angels in Need Davidson, North Carolina Website: www.angelsinneed.org Phone: 704-607-5118 Coverage: Local & International Angels in Need is a 100% volunteer, 501(c)(3) non-profit public charity based in Davidson, North Carolina. It is our mission to serve children with special needs and their families both locally and abroad. Our goal is to enrich the lives of these children and families by supporting already existing programs and organiza

We chuckled when we referred to the two Bens as BO & BM, their initials forming unfortunate shorthand for human functions not talked about in polite company. They were in preschool together, neither very mobile and left on their own much of the time. Ben's mom, Donna, and I bonded over the mistreatment of our sons, both of us ultimately taking them out of the poor situation. Donna was going through a divorce at the time and had a lot of stress on her. She was a single mom trying to help her Ben. Donna's Ben had a smile that stayed with me. His eyes were part of that smile and any interaction I had with him, even at that small age of three, I knew that he was listening and welcomed my attention. After leaving the original preschool, I lost touch with Donna. A few years later, we all ran into each other at a children's library and stayed in touch from then on. Donna wrote a few posts for eSpeciallyBen, and then I did not hear from her for a few months. At tha

In April, Ben received his long awaited larger Convaid Cruiser, a portable and light- weight wheelchair.  Within a month, the canvas seating began to fray on the corners and Ben pulled off one of the crucial straps for buckling after it frayed beyond repair. Both were quickly replaced by the distributor, the sales company that purchases the products directly from Convaid. Within days of those repairs, the brake broke and a bolt came loose from the handlebars. Again, the same technician from the distributing company came out and handled the repair. His general diagnosis about the continual repairs was that the chair was put together too quickly, probably on a Friday afternoon.  On a "it is a small world" side note, the technician had an unusual last name and I commented that I was friends with someone in high school by the same name.  He doubted this because very few families in the world shared this surname. After a careful game of who, what and where, we confirmed

I write this, in hopes that the feeling of being emotionally drained will dissipate. I attended a meeting coordinated through North Carolina's Department of Health and Human Services. The meeting's purpose was to listen to feedback from parents, caregivers, providers and consumers about the Innovations Waiver and other services through IDD Services (Intellectual and Developmental Delays) and Mental Health. The Innovations Waiver is a program designed to help parents keep their IDD or mentally ill child at home and out of an institution. Ben has been part of this program for about 4 years. With state and county money, he receives managed care in the form of direct service providers that help with personal care and skill-building activities in the home and community. There is a long wait list to become part of the program, typically taking years to get the services. Reluctantly, I went to the meeting with the only incentive being that my long time friend, Karen, would be ther