eSpecially Ben

Ben played in our county's Special Olympics Bocce Ball Event yesterday. Lots of athletes, teachers and volunteers were in attendance. The highlight for Ben was having his brother, Logan there. Logan played hooky from school to see Ben participate. On the way home, Logan made a few observations about kids with special needs - "some are like zombies and some are just normal." He decided that Ben was medium. We also talked about what Logan's friends at school say about Ben. Logan could/would not give me details about their questions, but he said that he answers their questions and then tells them a little about Ben. I asked Logan if he would ever want to meet with other kids who have brothers and sisters with special needs. Incredulously, Logan said, "Why would I want to do that?" I told him about  programs where he could talk about any feelings he may have about having Ben as a brother. His response, "No Mom. I like Ben." I guess that answer

No, I did not mistype the title of this post. The jury is not out anymore, I think Ben would rather be a spectator than a player in this sport. When he is in the dugout, he looks longingly at us sitting in the stands. When he is in the outfield, his complaints reach us from across the field. Just three more games and Ben can put in for retirement. Although, I am not giving up on Ben's athletic career. One friend whose 14 year old son, Ryan, plays baseball on another team is having the time of his life. He made a home run last week and it was all I heard about from Logan. However, there was a time when Ryan played soccer and was so disinterested in the sport. His mom thinks his age has something to do with the change in interest. This gives me hope! Perhaps maturity or a change in sport may help Ben's perspective. We will just have to wait and see.

A few months ago, I mentioned that a company called Gene DX was running a Comprehensive Epilepsy Panel on Ben. I was not hopeful that anything definite would come back, but the price was right and a little blood letting was not going to hurt Ben. The results were interesting, yet, not significant, nor remarkable, definitely not a diagnosis. Basically our letter told us that Ben tested "positive for a mutation on the MECP2 gene which is on the X chromosome. Mutations in this gene result in Rett's Syndrome in females and neurodevelopmental problems and epilepsy in males. However, his mutation is in a location that has not been previously associated with disease. Therefore, significance is unclear." When we meet with the neurologist, I will get a better idea if there are next steps to take - as in more tests. If they are more invasive or expensive, we will probably just drop it for now. Nothing will change about Ben's therapy and care. I have thought for a long

I remember when I applied for college, everyone talked about all those scholarships and grants available to pay for tuition, room and board. I never found them, but I am sure if internet was available way back then, I may have had a fighting chance. Here are more sites sent to me for funding communication devices, medical expenses, etc. Some have links to other sites. It will take time to read through guidelines and complete paperwork, but I truly believe that the hard work can pay off. I am currently working on an application to help us pay for Ben's medical insurance. A friend sent me the link and it seems that we may fit the criteria. It is a pain to get all the paperwork together, but if it saves us thousands of dollars, it will be worth it. Good luck and send us any suggestions and sites that you may know about: Different Iz Good - Organizations Gifting Apple Devices itaalk - 5 Steps to Getting an iPad Covered by Insurance: A mom's story of success itaalk - G

After car troubles, technical issues, phone problems (Ben ate my phone) and stomach aches...I am back. Here is a quick story in our local newspaper: Miracle League Article

As a parent and a person who prides herself in setting goals, I have looked forward to one of my boys looking oh so cute and adorable with a tooth or two missing. Both Ben and Logan have lost teeth, but the adult ones were already there waiting impatiently for their own place in the limelight. Finally Ben lost a tooth without another one already there. Goal accomplished! I can sleep easy now.

What a difference one week can make. The baseball game was more fun for me, and I am hoping for Ben too. His buddy was a University of North Carolina at Charlotte Baseball Player and he seemed very comfortable with Ben. Ben used his wheelchair and we were able to curtail some of his shenanigans. While in the outfield, Ben spent most of the time trying to get at his Buddy's baseball cap. When Ben was going crazy grabbing at anything around him, I noticed his Buddy give him a quick shoulder rub which seemed to focus him. An OT might have called it deep compression . Whatever it was - it worked to get Ben to turn around and pay attention. During the week Logan commented that Ben's baseball game was not about winning, but about the players' talents. At 10pm, the night before the game, Sean came rushing into my room with an idea: He just heard a song with the words, "I'm a boy, I'm a boy, I'm proud to be me. I'm a girl, I'm a girl, I'm prou