eSpecially Ben

A local farm, turned county park, offered a special event featuring the Civil War. Volunteers dressed as military personnel, farmers, craftsman, acted out battles and answered questions. It was family friendly and the kids were welcomed to try out each experience. Ben was content at watching everything going on around us. Logan and Sean were mesmerized with the machine that removed corn kernels, and they literally spent most of their time getting the heads of corn from the shed and then either by hand or machine taking off the kernels. For some reason, unknown to me, this was an exciting activity for them. Ben and I visited the cows nearby. A boy of about 10 or 12 came up to us and offered to help Ben feed the cows. The photos you see are of Ben and this boy. Notice how the boy gently uses a hand-over-hand approach to help Ben feed the cows.   The boy suggested that Ben may like to get the kernels off himself using the machine. This kid was so kind and thoughtfu...

In The Wildest Brother , a wonderful story about siblings by Cornelia Funke ; the main character happens to be named Ben. Throughout the book, little brother Ben, protects his sister from imaginary ghosts, goblins, bears and any other creatures that may attack a big sister without warning. Ben does a great job during the day of saving her; however, when night comes, he is quick to jump into bed with her and let her take over the slaying of dragons and other things that go bump in the night. We read this story a few nights ago and since then, Logan has been sleeping in bed with our own Ben. Not sure if the book prompted this arrangement and if it did, I am unsure who is protecting whom. Asking these questions would surely ruin the moment. And I certainly don't want to do that.

This little buggy is really too small for any of our boys, but they still find ways to play with it. When they were small, we had three like it and most of the time, these cars were inside the house. The boys played in them all the time. This one has been relegated to the outdoors, part of my several step program to get toys to the give-away pile. Whenever we are outside, Ben has his eye on this car. Today, Ben was determined to get inside. Since his feet and legs did not fit, he closed the door and let them hang out. He did all of this without assistance - from getting into the driver's seat and maeuvering his body to closing the door and getting his feet over the side. Getting out was a different story.  The Good Ol' Days   

In Mr. Warmuth's high school social studies class, I raised my hand and asked if Mayor Koch was the governor of New York. I don't remember Mr. Warmuth's response, but I will always remember the years of ribbing I received for that one. For awhile, I may have even been known as "the girl who asked..."   And I know the question was a contributing factor to a nickname. In my defense, at the time I asked the question, Mayor Koch had been in office throughout my entire childhood and his first name was barely ever used. Even now, I really have to think hard about his first name...Ed. Yes, Ed Koch. Several weeks ago Logan asked me to teach him how to read a clock. I am not a great teacher, but this seemed like a simple task, one I could handle. Heck, I'd been telling time for quite some time now. I was already feeling the pride of knowing I taught my son how to read a clock. I cracked my knuckles and dug into my explanation. I told Logan about the tw...

This is a re-post from 2010. The night after St. Patrick’s Day long-time, dear friends of ours invited us to their ten-year old daughter’s exhibition of Irish Dance at a local college. Logan and Ben were my companions on this adventure – an adventure because the event was a good 25 minutes away and did not begin until after 7pm. And did I mention it was a school night? Ben sensed we were going somewhere different. Before we got out of the car, Ben’s arms and legs were moving a million miles an hour. This was a sure sign he was excited and happy to be out and about. Taking Ben somewhere new comes along with a lot of worry – Will I be able to get Ben easily to the location? Will Ben behave? Will he make his noises? Will we have to leave early because he’s not enjoying it? How will others react to him? I usually push past the worry, hope for the best and fly by the seat of my pants if needed. When things go well, an emotion I have not been able to label, takes hold of me. ...

Our family worked with an organization that provides a fabulous service for children with special needs and their families. Once we were involved directly with them, I noticed that they describe each child served, by their disease or disorder. The public profile was 90% about the child's affliction. When I saw Ben's profile, I was really sad. He was listed as Epileptic with an Unknown Genetic Disorder. An Internet generated description of Epilepsy was included. A photo of Ben, his age and hometown were also listed. The many people who looked at the website would not see Ben as a person who likes to swim, play with his brothers, be outdoors and watch Bob the Builder. They would see a poor child who is handicapped and needs help. I emailed our agency contact and suggested they add some other facts about each child - what is their favorite food, activity, movie, book, etc. The questions and answers would depend on the child's development, but ...

We are in the process of selecting an augmentative communication device for Ben and a speech language therapist (one of her hats) sent us this video. I know I have been YouTube crazy lately, but this one is worth it. And I applaud the mom for the way she handled the situation, saw the importance of what occurred and shared its powerful message with us.

This is Ms. Myrtle as she talks about Ben. She starts talking about him toward the end of the first segment and finishes up in the second. It is worth the time to listen.

Our local YMCA asked us to be a part of a video to help with their fund raising efforts. There are a few more segments before and after us - I may try to post the part with a very special person talking about Ben. For now, you can see this.

Every six months Ben is measured for new ankle foot orthotics - AFOs for short. The process can take 30-45 minutes depending on how wiggly Ben may be that day. On this day, Ben decided he was going to fight Steve, our long time orthotist, to the death. In the end, we won, but only because I realized we could lock Ben's foot down in his chair while Steve wrapped the other one. Ben lost leverage to push back and some dignity since he was beat. First, Steve put an open toed sock on Ben's foot. After the rubber yellow band was put in place the entire leg and foot, from the knee down, were wrapped in this very wet tape. Ben's foot remained in a specific position to get the correct cast. Once the wet tape dried in 5 minutes, Steve cut off the cast using a special scissor, running it down the rubber yellow band, so as not to cut Ben's leg. Here's Sean pulling out the sock that was underneath. It was not needed anymore. The final cas...