eSpecially Ben

About three months ago, Ben stopped responding to his usual sleep regimen of 5 mg of melatonin at 7pm and a prescribed sleeping pill called Doxepin, at 11pm. He was wild with energy until midnight, crawling around the house, throwing Logan out of his bed, visiting different couches and cackling at his favorite artwork in the house. He was a wired mess and on many nights took off his clothes and pull-up, opened the fridge and pulled out foods to make a smoothie. With the okay of the doctor, I increased the dosage on both the melatonin and Doxepin. It made no difference. I added herbal teas that promoted sleep, even trying different brands in hope to find one to do the trick. Nothing worked. We were at our wits end. I decided a detox was needed. No more melatonin, no more Doxepin. When I remembered, I gave him a tea, but that did not seem to have a huge effect on him, except adding to fluid that needed handling, if you get my drift. After about two more weeks of this crazy behavi

It was March 2013 when I started the process to build a bathroom for Ben. After much heartache and tears, a few wonderful people stepped in to help me with the process. Through their contacts and persistence, they found sponsors. Although I do not have many details, I do know that a few key Charlotte organizations are coming together to build Ben an accessible bathroom. There will be a fundraising event in the fall. As soon as I know more information, I will share. Deep breath. Relax. Repeat.

Summer hit fast and furious. It is finding time to write and not lack of material that is the challenge.  The stories and lessons learned every day are limitless.  Must follow my motto: sleep first, then write.

We visited the NC Transportation Museum to see part of an exhibit with famous trains from all over the country. While there, I saw an older, almost elderly, man and woman pushing three wheelchaired adults. What I noticed lead me to several questions and many conclusions: It was an obvious struggle for them, especially the woman who was pushing one wheelchair. I assumed this was a group home on an outing. I also saw that one chair did not have foot rests. The person's feet were just dangling. I was glad the group home was out on a field trip, but I really thought they were understaffed and perhaps needed younger, more healthier looking personnel. It made me think of Ben's future and his care. My curiosity got the better of me. When Ben and I caught up to them, I said hello and acknowledged that they must have a hard time pushing three wheelchairs with just two of them. I asked the man how come they were short-staffed. He looked at me slowly, very slowly. He looked at the woman

My MP3 player started with Bieber and ended with the theme from Rocky. I was running a 5k race called, Lace Up Son , a play on former Carolina Panther's  Steve Smith's words to Aqib Talib, " Ice Up Son " , after a football game that left the New England Patriots on the losing side. About two weeks before the race, I heard Steve Smith on the local radio show discussing the race and his foundation, the Steve Smith Family Foundation . He made a point to say that the race and events afterward were family oriented and that a portion of the proceeds would go to support Special Olympics. There was something about how he talked about the race and his vision for it that made me want to go. At 6am on Memorial Day, the day of the 8:15am race in a town 30 minutes away, I was definitely thinking twice about what I had gotten us all into. The kids were snug in their beds, Ryan and I could have slept in late, instead, I dragged everyone to the car. No regrets from any of us n

Beginning in 3rd grade in NC, students take E nd  O f G rade tests for math, reading and additional subjects in upper elementary. For Ben and other children with special needs, they take a test called the NC Extend 1 . Ben was scheduled to take his over the next few days, depending on his cooperation and energy level. Minutes ago, I received a call from Ben's teacher telling me that Ben " rocked the EOGs ". She was able to get both reading and math sections completed with him. She saved the best for last: one portion of the test required Ben to read a section independently, then answer 3-4 questions. The proctor did not ever read the passage aloud. Ben answered all four questions correctly, each question had three choices. Unbelievable! We were uncertain about his reading skills, but this seems to prove that he is reading and comprehending. Sample NC Extend 1 from 2013 NC Extend Information Although they had the NOVA Chat ready to use for the testing, they did not

Ben was in the news tonight. Watch it here: Crowders Mountain Considers Building Accessible Trail