Monday, May 20, 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 thinking about these words, I realized that every day we make a decision to accept changes and differences - they can be small, like having to shop at a different grocery store because your usual one is under renovation, they can be large - someone you care about is diagnosed with an illness. As I thought about this, it helped me see that as humans, we are reconciling and processing so much each day - some of it emotional, intellectual and physical.

When Ben was a baby and so much was unknown, I cried for the imagined losses he would have in life, these imagined losses being the ones I defined for him.

At nine years old, those imagined losses are meaningless. Ben's gains are so much more than some adults will ever achieve. I learned that I cannot use the same yard stick on Ben that I use on myself, and I ask that others do not do that either. Accept him for who he is right now. Reconcile your own thoughts and feelings by understanding that applying your imagined yard stick to his life will always make him come up short. Throw that one out and get a new one...something with the metric system...that may just fit the bill.

Thursday, May 16, 2013

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 anyone could have gotten Ben to do it - it took all of us to keep him from making a run for the exit.

At the end of the morning, none of us were happy with the events chosen for Ben. They did not fit for him and the worst of it was there was no crowd to cheer him on. Ben is all about the glory. Next year, I will know better and we will request he be a part of the track and field events again, where there is a crowd and excitement.

* I understand that for some athletes, this atmosphere and activities work well.

Tuesday, May 14, 2013

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 that he convinced the Special Olympics committee to move the games to Charlotte Country Day School. The games have been there ever since. At the ceremony, Mr. Ball was honored, and he immediately rededicated the award to the athletes. I have never seen that done. To him, it was all about the athletes, never about him.

As in the Olympics, it takes great effort to get the torch to the arena for the opening ceremonies. Like many states, the local police and fire departments are responsible for bringing the torch to the ceremony and handing it to a designated person. On this day, it was an older alum of our local special education school. With the help of many people, the torch made its way to the Flame of Hope. In the Olympics, no one can deny the significance of this special ceremony - it was no different on this day, at this event.

Then the party started. Really. Dance music was piped in and everyone danced, and my boys wiggled around a bit. Sean is an exuberant dancer and had me worried he was going to tip Ben over in his chair - it has happened before.

If you have not attended opening ceremonies like this, try it. Bring your kids, your parents and grandparents. Ask your friends, your aunts, your uncles and cousins. I cannot imagine that you would be disappointed.

I am sure cost of transportation is an issue, but I wish the children from a different school in our county could attend every year. They could make posters, banners and signs. Teachers could do a unit on the Special Olympics, differences, special education, community, service, leadership, importance of exercise...the educational aspects are terrific. It would be a learning experience for them and adding 300-600 children to the cheering section would help celebrate the accomplishments of these athletes.

Sunday, May 12, 2013

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 in showing others how Ben's NOVA Chat or another piece of equipment works. They are the first to tell Ben to do something they know he can do for himself.

At the YMCA, I overheard a boy comment to Logan about some kid at the pool in a special chair. Without missing a beat, Logan claimed Ben as his brother and launched into a discussion about him.

On his own initiative, Logan recently taught Ben to shake hands. Teaching this skill, which was successfully mastered, had not occurred to anyone else in Ben's life.

When someone says something about Ben around Sean, I hear him yell a little loud, a little annoyed, "He's a needs kid. He has special needs." Yah, we all have those and thankfully, Ben has two brothers to speak up about them.

* Disclaimer: All of the above is true; however; I feel it necessary to add that they are still brothers and they fight with Ben too. He gets on their nerves, invades their space and sometimes ruins their toys. He does it knowingly with a glint in his eye and a smirk on his face. He sometimes adds insult to injury by laughing about it too. I guess it is just as it should be. After all, Ben is the oldest brother.

Happy Mother's Day!

Friday, May 10, 2013

Ask the Advocate

Wrights Law had a recent and worthy post about working with the school system: Ask the Advocate. A good read for any parents with kids in the school system.

Wednesday, May 8, 2013


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.

Monday, May 6, 2013

Bathroom Saga


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 understood.

The sitter took them to the park while we met. By the time they returned about an hour later, our friend had left. Sean looked around, "Where is our new bathroom?"

After explaining to him that this is a process that would take some time, he responded indignantly, "Well, we were at the park for a long time."

Like I said, this will be a saga.

Saturday, May 4, 2013

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."