eSpecially Ben

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

Five Years 2009 When I started, it was 2009; Ben was six years old, Logan was four and Sean was one. My first post, Love at First Sight , was an "all in" jump. I stayed up well past my bedtime, writing and creating a name for this site. It posted on September 18 at 11:43pm. At that point, I did not have any long-term goals or expectations for the blog. I knew I wanted to write, wanted to share and for as long as I had something to write about, I would keep doing it. That was it. Not much more thought went into it. Good Stuff Five years later, I could not have imagined the outcomes from writing eSpeciallyBen . We have this incredible record of Ben's progress, helping us to see patterns, changes and growth. We made connections across the world with people who care about similar issues. My confidence in my writing increased and I sought out paid writing opportunities. We have become closer with distant relatives who came to know us through eSpeciallyBen . And

When asked to hold onto the monkey bars, Ben chose to hold onto Joey tightly. For the past several years Ben has had therapy everyday after school. This meant he missed out on park time with his brothers. If therapy was cancelled, we rejoiced because Ben could join us. This year, I rethought therapy time and managed to have therapists come later in the day or meet us on the playground. His new occupational therapist, Maggie, has met us at the park on a few occasions. Ben pet a dog, swung on the swings, ate a snack, rode his tricycle, played with bubbles and tried holding onto the monkey bars. He used his NOVA Chat to make choices about what activities he wanted to do. This has been a great way to reenergize therapy, involve other kids and help Ben strengthen his skills. You ask, What is  Parkour ?

It has been a tough transition for Ben from summer fun to school work. Last week, when the bus arrived at our house, there were no excited hands and feet jumping about. The lift carried a confused boy, wondering what happened to those carefree days of swimming, movie watching and lots and lots of time with the brothers.  On the first day of school, Ben came home with brother withdrawal. He could not get enough of them after school, attacking them with his rough hugs any chance he got. Assuming that Ben would be exhausted from a day of school and therapy, I was excited for some early nights to bed. Wronger I could not have been; he stayed up between 11pm and 1am each evening. I did not count on this transition, but with Ben's increased awareness, I should have.  Anyone going from an easy summer of fun to a rigorous schedule of school and therapy would find the change a challenge. Last day at the pool.   Last days of summer freedom.