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Showing posts from May, 2013

New Yard Stick

I started this post a thousand times in my head and it was always called, Acceptance . I was cleaning up a pile of papers and came across a note with the same word written on it - a reminder to myself to write a post about this topic. Then I was reading an emotionally laden fiction book about family and it talked about the stages of grief, but acceptance was introduced to me for the first time as reconciliation . I thought about writing about the people around me who need to reconcile their thoughts and feelings about Ben - everyone from close family members to strangers we see on the street. Adding to the stress of having a son like Ben, is dealing with everyone else. But that's not fair - everyone is at their own place, on their own journey and try as I might judge other's level of acceptance, I am not in the position to do so. After many rewrites, I decided to talk about my own journey through acceptance and reconciliation - whichever word feels more comfortable. In thi

The "Not So Special" Special Olympics

Two days after the opening ceremonies, Logan, Sean and I attended the actual county-wide Special Olympics. It was our fifth year as spectators and we had set expectations: cheering for the athletes, sitting outside at the stadium, watching athletes race by in walkers and wheelchairs and catching up with people we only see once a year. This year proved different. It seemed that Ben was participating in several events that involved throwing, pushing or hitting a ball. We were inside, isolated in a gymnasium with nine stations. Athletes went through the stations alone (no competition) and needed to complete each one to receive a gold medal. Right from the beginning, Ben knew this was not for him*. It was a struggle to get him to participate. He was less than enthused about the activities and was not cooperating with the high school volunteers. At one point, Logan was frustrated and whispered to me that Ben could do the event if he (Logan) was the one helping. I am not sure anyon

The "Not to Be Missed" Opening Ceremonies

Shamefully, this was my first time attending the opening ceremonies of our county's Special Olympics. I will not miss them again, and I will try to bring a crowd with me next year. Logan, Sean and I were probably 3 out of 20 spectators for over 1100 athletes. They were spectacular. They did an excellent job of mimicking the noteworthy traditions of the opening ceremonies for the Olympic Games. Larry Sprinkle , a local celebrity and television anchorman, hosted the event. Sir Purr (Carolina Panthers Football Team's Mascot) and Chubby Checkers (Charlotte Checkers Hockey Team's Mascot) made appearances. The band and choir from Charlotte Country Day School performed. The pomp and circumstance that adds importance to an event was present. The spirit of the volunteers, teachers, speakers and athletes made it exciting and inspiring. We heard the story of how 30 years ago, David Ball, a teacher, attended the spring games with his class and was so moved by the experience

Standing Tall

Ryan and I marvel at how each of our sons are getting bigger, stronger and wiser. It usually hits us when one of them falls asleep on a couch and we have to carry them to their beds or they say or do something that catches us off guard. At two years old, Logan stood up for Ben when their pediatrician did not offer Ben a sticker, the usual prize after finishing an appointment. I could hear the indignation in Logan's voice even then, "Ben needs a sticker too." This theme of not leaving Ben out has carried through to this day: Ben has a morning "To Do" list, he gets daily  Class DoJo points and he has a Reward system too. All of these were prompted by either Logan or Sean. If I do not include Ben, I am quickly reminded by one of the brothers with a "how dare you" attitude. Logan and Sean take responsibility and ownership for how to get the best for Ben so that he can succeed. They are not afraid to speak up to adults and children. They take pride


We spent some impromptu time with one of my friend's boys a few weeks ago at the USNWC . Our boys did not know each other, but they made friends quickly and were running around and having fun before we knew it. My friend's oldest son who is 11 years old came over to Ben several times. His approach was caring and open. I showed him Ben's NOVA Chat . He quickly understood how it worked and asked if he could make a button. With little help and certainly no input from me on what it needed to say, he added a button that said, "You are a good frend." I was shocked and warmed by this child's thoughtful and loving way. Not wanting to shed tears at the whitewater center in front of this boy (and scare him off), I explained that this was so helpful because we wanted Ben to have conversations with his friends and family. This was a great start to that, and of course, a lot more too.

Bathroom Saga

sa·ga Noun A long story of heroic achievement. A long, involved story, account, or series of incidents. ------------------------------------------------------------------------------------------------------------ Who will achieve heroic status in this saga? Like any project, we have different approaches to the situation. I am of the "let's get 'er done" mentality while Ryan takes the "think about it, sleep on it, think some more and then wait" approach. This will be a saga. We met with an architect friend this week. He surprised us with some wonderful news - he is trying to get some of the materials we need donated. It seems that he has been successful already with a few of the items. He may have come up with some cost saving ideas as well. Because we knew this meeting would require uninterrupted discussion, we had a sitter for the kids. I told them that they could not talk to us while we were meeting to talk about the bathroom. They all under

Who Are the Lucky Ones?

Many weeks ago, a friend's post on Facebook spoke about her daughter's extended visit at the hospital. Her daughter has had many surgeries, has multiple special needs and requires serious medical care. Several friends and family sent well wishes in the comment section. One person wrote, "Your daughter is so lucky to have you." Of course this person was offering support to a friend, but my immediate reaction was, "No, you have it backwards. We are the lucky ones."