eSpecially Ben

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

2014 Mecklenburg County Special Olympics. This is taken directly from the Special Olympics Page : "Special Olympics' Unified Relay Across America is a historic event with three simultaneous torch runs, held from East Coast to West Coast, to kickoff the Special Olympic's World Games in July/August 2015 in Los Angeles, CA. Unified Relay Across America will begin May 26th and end on July 10th, 2015.  The three legs will be: The Northern Route (in red):      Augusta, Maine to Los Angeles, CA The Cetral Route (in white):        Washington, DC to Los Angeles, CA The Southern Route (in blue):     Miami, FL to Los Angeles, CA Unified Relay is a team based event.  Teams of 1 to 15 people will  have the opportunity  to walk, jog, run, or roll ( rollerblade , skateboard, wheelchair) a 1/2 mile segment or cycle a 5 mile segment.  Your team will be carrying the Flame of Hope, brought ...

I will be a regular guest blogger on the Charlotte Parent Website. This is my debut post: Declaring 2015 to be the Year of the "No"

Some very special fans for Ben. The 2015 Opening Ceremonies for  Mecklenburg County Special Olympics is  Monday, April 20, 2015 10am-Noon Bojangles Coliseum Free Admission, Free Parking Open to the Public, All are Welcome Homer from the Charlotte Knights Baseball Team leads the Color Guard. 2014 Fans from St. Luke's Lutheran Church Larry Sprinkle, a local TV celebrity, and Sir Purr of the Carolina Panthers cheer on the athletes.

As I sat with Ben in his bedroom the other night, my mind wandered. I recently cleaned up the shelves in our library and all the baby books were taken down and dusted. Each son has their own photo album, baby book and keepsake box. I thought about Ben's books and how being the first child, every single moment was honored with a snapshot. My meandering mind went to the dark place I keep hidden in the deepest recesses of my mind. Ryan and I will not be around for Ben one day. It saddens and scares me. I know he has Logan and Sean, but it will be different. As parents, we have a level of love and understanding of Ben that no one can come close to emulating. With us gone, Ben would be in the care of other people - strangers - people we do not know, people we have not vetted. My one solace was knowing how Ben's albums would show these strangers that he came from a loving family who cared about him. They would see a sweet boy smiling, surrounded by family and friends. I rati...

After 10 years of being in the world of special needs, we have pretty much heard it all - what we can do for Ben, what we should buy and try and how we should do certain things. For the most part, we have done everything suggested, including, but definitely not exhaustive - chewy tubes, electric impulse machines, ABA therapy, special utensils, foam seats, kinesio tape, weighted vests, vibrating pillows, exercise balls, whistles, vibrating pens and even cloth napkins. When Ben starts with a new therapist, they make suggestions based on their experience and observations. More than likely, we have tried the technique or equipment at an earlier time in Ben's life. It has either worked and we still do it, worked but not anymore, worked but not worth the hassle, worked but we got lazy or not worked at all. A few weeks ago, the vibrating toothbrush idea was brought up to me again. I would be lying if I did not share that I do get tired of these ideas. My responses have run the gamut: ...

Rejected is a negative word, usually associated with bad feelings. You have been turned away, turned down, turned around. In December, I received a rejection. My response was nothing short of elation. I took my first leap and sent a query letter to a national magazine, requesting an opportunity to write an article on a specific subject. It was something I wanted to do for a long while, but was unsure of the process. After researching and reading several articles and blog posts on this subject, I found out that there are many ways to submit articles, but national magazines expect to receive a query letter with very specific guidelines followed. They either accept or, in my case, reject the query. For me this rejection meant I had attempted something I have thought about many times. According to my research, another umpteen queries may lead to an offer. This rejection will be the first of many, but only if I keep trying. And my feeling of triumph was only underscored by the rejec...

Happy New Year! We had a quiet and relaxing holiday break. Chinese food for Christmas dinner, several pajama days and a few visits to local parks made for much needed family time. Alas, reality has set in - school is back in session, cold weather has hit and we are back into the swing of our regularly scheduled program. Ben wears ankle foot orthotics (AFO's) to help him walk. They give his lower leg and ankle support and help keep his foot in the proper place. His feet tend to pronate - turn in so he is walking on his arch. Without these orthotics, he would not be able to walk as much as he does in his walker at school and with assistance at home. AFOs also have their downfall - they are big, bulky, difficult to get on and very expensive (about $1000-2000 a pair). It is recommended to recast every six months for new orthotics, especially if your child's foot is growing. Although Ben's shoes are rough looking after six months, the AFO's themselves are in fairly g...