eSpecially Ben

When your kid with special needs does something so unexpected, it makes you remember that the diagnosis delayed development  could mean waiting for skills to emerge, interests to blossom and age appropriate behavior to advance. Even as parents, we tend to forget that our child's brain may develop at a different rate possibly exhibiting growth when least expected. When it does happen, it hits you right in the face, but in a good way. This morning, we were all hanging in our playroom. We were enjoying the space after decluttering the room and donating bags of toys to the local thrift store. Ben was with us and he reached up to a bin full of balls and chose a junior size football, one that we use all the time outside. He took the ball and handed it to Sean. Under my breath, trying not to squeal with excitement, I told Sean to play ball with Ben. Logan and Sean did not understand the significance of this moment. Joining us in the playroom, locating a ball, choosing a ball, getting ...

Read my post as Guest Blogger on Charlotte Parent's website : Spy Games

We met Mason and his family a few years ago at the orthotics office. We usually meet the best people in waiting rooms! We stayed in touch through the   eSpeciallyBen Facebook Page , and when Ben was ready for a larger tricycle, Mason was a perfect fit for Ben's old one. Mason came over at Christmas time to try it out and since it was a cold day, we stayed inside and he rode it around our house. It was obvious that he loved the bike. He had been quiet at first, but once he was on the bike, it was hard to get him off. He made motor sounds while he was "whizzing" around the house. I was sad to see the bike go because Ben had a lot of good times on it, but knowing that Mason will enjoy his time with the bike made it easier to say good bye. Mason's parents sent these photos of him riding around his own neighborhood. Go Mason Go!

Every time Ben goes to the pool for physical therapy, I am sure he will hit his mouth and rechip his tooth while getting out or while crawling on all fours on the deck. After almost two years, nothing has happened. In fact, at the dentist last week, the doctor and I congratulated ourselves for making it almost two years. Ben chipped his tooth on the school playground about two years ago. We had it repaired and it has lasted without any care to what Ben munches on. Yesterday the weather was cold and soon to be icy so we changed the physical therapy session from the pool to our home. About 15 minutes into the session, the PT yelled in a panicked voice, "Ben chipped his tooth." Sure enough, Ben chipped the same tooth that had been repaired. The fake chip came off when he hit his desk while making a transfer from his desk seat to a regular chair. When I called the dentist to see if I needed to keep the broken bit, he said we had jinxed our luck the other day by talking abou...

Here's my post as a Guest Blogger on the Charlotte Parent website: What St. Valentine Really Had in Mind

Rebuilding Together Charlotte and NARI (National Association of the Remodeling Industry) are partnering to build Ben the accessible bathroom he needs. We are very excited to see this project finally come to fruition, and we feel fortunate that these two organizations are coordinating their efforts to make it happen. This is a big project on an old house (99 years) and requires special care, expert advice and quality workmanship. These photos are from last week's NARI meeting. A table was setup for contractors and other companies to sign-up to help with specific aspects of the bathroom construction. By the end of the evening, a variety of companies volunteered to donate labor and materials. It is a good thing I was not there to see people signing up to help with Ben's Bathroom. Just seeing the photo above sent to me after the event, brought tears to my eyes.

Below is a link to an article I wrote for an alternative weekly paper published in our city. I worked on it for less than a week, which was breakneck speed considering how information changed with each meeting and interview I attended to gather information. Drafts of the article changed daily, with the focus and direction moving as the story evolved. Through the process, my brain and heart evolved as well. I moved from, "What's the big deal to walk a few extra steps?" to "I think I might get it now." For a week, my brain was cluttered, trying to sort through the information and make sense of all of it. Read this and tell me what you think: The Fight for Equal Access