eSpecially Ben

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...

Ben's PT sent this email to me. I forwarded it to our family because they like to see updates on Ben's progress. The simple forward started a chain reaction of positive energy, attitudes and reignited passions. Who knew a few words and clicks on a keyboard would be able to forward kindness and appreciation? Vanessa, Ben had an AWESOME physical therapy session today! I have a   high-school student shadowing me on Tuesday and Thursday afternoons. I think  having her in front of Ben (because I am so often behind him offering cues/facilitation for proper mechanics/strengthening) added additional   motivation to excel!  We did several sets of sit-to/from-stand without my assist during the transition (but assist for balance once in stand) on command 100%  of the time. We did 10 reps of stand to/from squat to retrieve a toy from the  floor with minimal assist to grab toy (most times he either drops it, flings   it,...

As told by Ryan to me: I learned a lesson today. Ben fought me as I put on his ankle foot orthotics (AFOs). He kept his toe pointed out, making it impossible for me to get his heel into the brace. We struggled for awhile, and I finally forced his foot in. I continued to put the Velcro in place, but nothing seemed to fit correctly. Then I realized why nothing was working right, I had the brace on the wrong foot. Ben fought me so hard because he knew it wasn't right. Ben has done this to me several times too. When our children don't use words to express themselves, we have to listen using our other senses. Last night, Ben had a hard time falling to sleep because he was stuffy from a cold. About 10pm, Ben crawled into bed with Logan.  Logan came to get me. When I got there, Ben was curled up in a ball, ready to fall asleep. I moved Ben to his bed and put on a video. About an hour later, we found Ben curled up at the end of Logan's bed again. It finally dawned on me that ...