eSpecially Ben

Ben has had a rough couple of weeks between his finger getting caught on something at school causing much commotion in his classroom, a fall at his PT therapy session leading to a black eye, scratches on his head and chin from some other mishaps and ending this past Friday with a trip to the ER in NY when Ben fell off the sofa at his grandpa's house and cut open his already beat up chin. I may have mentioned before that I do not like blood. I need to clarify - I steer clear of the red stuff when it is outside the body. At a neighborhood Halloween party, I heard crying. I ran to see if it was Sean, my youngest. I was correct, it was his cries I heard. As soon as I saw the blood all over my son's mouth, I took an about-face and headed for another room in the house, letting my husband assess the damage. Luckily, Ryan is the only one who saw me avoid my screaming bleeding child. When Ben got hurt in NY, I was still in bed. Ryan called up to me for help. I assumed it was a bathr...

At a local nature museum, arachnid enthusiasts displayed their pet tarantulas for a special Halloween event. Then, an arts and crafts project was made available to the children. Logan, age 5, jumped at the opportunity to make one of his own, because that's the only way he is bringing one into our home. Check out more works of art.

I have been giving regular updates about my friend's son, Ethan. This article is about a creative fund raiser a high school principal coordinated:  Come Together to Help Local Child

At many Thanksgiving Dinner tables, family members are asked to go around the table expressing their thanks for something special in their life. The usual remarks include God, health, children, spouses, parents and world peace. Even if this tradition does not take place today, it is the time of year that most give pause to the blessings in their life. I am thankful for my wonderful and supportive family, neighbors and friends. My husband could not be more supportive and loving. I have three beautiful boys who care about one another. We are all relatively healthy and happy. But today I write about what I am thankful for, but would never say at a dining room table full of people. Most people choose their cream of the crop thoughts to share among family, friends and relatives.These are not my cleaned up versions, so be prepared. Here are some of the things I am thankful for throughout the year: Turning off the alarm on a day when there is no school. When my friend brings over ...

I remember, and so does my mom, school portrait day when the teacher insisted on parting my bangs for my photo in the 2nd or 3rd grade. That photo is embedded in my brain forever. And those were the days without touchups or perhaps even makeups, because Lord knows I needed a retake. This year when Ben brought home paperwork for school photos and I had to choose a background and package BEFORE I ever saw a photo, I was not pleased.  I love my son, but I do know how difficult it is to get a good photo out of him. I am unwilling to pay for a shot of the side of his head or even better, Ben yelling at the camera. I have enough of those in my personal collection. Metro Portraits did a great job - they captured the essence of Ben. They generously gave me permission to display Ben's photo on this site. When I called them to describe my hesitancy to pay for something sight unseen, they assured me that they would refund me money if I was not happy with the final outcome. Needless to s...

Since Ben's seizures started last spring, it really has been a long and painful process. Always taking Ben's health for granted, I had no knowledge of seizures or their effect on someone. Ben had been making tremendous progress with his gross motor skills. There is a definite difference since the seizures began and medication started. He seems less motivated to walk holding our hands, use his walker or even try to stand. It could be the medicine makes him sleepy or unmotivated. It is hard to tell. Although we have tried a few different medicines in differing doses, Ben continues to fall forward. This unexpected falling puts a wrench in how Ben spends his day. At school, he can fall out of his walker or while sitting in a chair, hitting his head on the table in front of him. At home, while crawling around, Ben can lose control and hit the floor with his face. He has no control when it happens and cannot put out his hands to stop. When riding his new tryke a few weeks ago, ...

My parents started the tradition of the Halloween Witch when I was a child. The Witch brought art supplies on the day of Halloween, usually hidden somewhere in my room. As soon as our children were old enough, we started the same tradition. This year, Ben received supplies to make stepping stones. Since this was the prized gift, he shared with his brothers. Ben did not mind because he didn't love having his foot dipped in cement, which I thought was the perfect way to decorate the stones. Instead of body parts, we added marbles, buttons and glitter. Easy and inexpensive to do - fun way to spend the afternoon. Check out other works of art.

After watching Modern Family on Wednesday night and they talked about Flash mobs , I had to know more about them. Watch this and feel good about the world around you for at least a few minutes. Happy Holidays!

On Veteran's Day, the boys had the day off so we went to the park. There were only a few other kids there with us. While running and climbing on the playground equipment, the other kids got into a name calling contest that involved only one word - "Retard." I do remember using that word as a kid - I flung it around with words like stupid, idiot, dummy. By the time I was in college, I had more sophisticated shorter words to use, so the "R word" left my vocabulary. At the park, I thought for a second about saying something to these kids. But what would I say? They saw me with Ben and I don't think they were connecting the use of their word with him. It was something they heard somewhere and were trying it out on each other. I chose not to say anything, but it did awake in me the need for more information about the debate going on about the words, Retard and Retarded . Although I am aware of the  R-Word campaign, I was unsure of its focus. Is it abou...

Advantage to long hair. Check out other photos!

This weekend we found out that Ben loves Shaun the Sheep . Like Bob the Builder, it is a British show for children. Luckily the other boys seem to enjoy Shaun the Sheep too. Sean calls it "my sheep." And Logan is just happy it's not Bob. And with Ben's love for British humor, we may try Kipper next...

 My birthday was last week and my dear friends helped me celebrate with a girls-only party at my house. I made it clear that the rule, "your gift is your presence" was in play. But loopholes can be found. A long time friend made me a certificate attached to a water bottle, congratulating me on turning 40 and running 12 races this year. It was a warm and fuzzy surprise, heartfelt and very original. Another friend, going back over 20 years, lives several states away, sent me 40 memories from over the years on strips of paper. I laughed reading the things I had forgotten and smiled at the good things she said about me. And at my party, a friend suggested everyone go around and say how they knew me. Some people shared their very first time meeting me or something I had done for them. It turned into more great memories. I wish I had videotaped it to watch on days that need brightening.

One of the first mornings I arrived at Ben's camp this summer, a man was out front of the recreation center on his cell phone. He was in a wheelchair, but managed to open the door for us. The next several mornings, he was outside when we arrived for drop-off. I later learned from him, that he waited each morning for us so he could help me. He also was there at pick-up time, but inside the building working with the teen camp located there. I learned that his name was Felix. It became routine for Felix to open the door for us and keep an eye on Logan and Sean. We became friends in the way you do when you see someone twice a day, everyday, for 7 weeks. We talked, shared pleasantries at first, and then got into more meaningful talks as the summer progressed. Felix is 31 years old and has Spina bifida. At the same time, the recreation director for the building was also around. At first appearance, she was gruff, unfriendly and had no interest in engaging in conversation with me. So...

The Board of Education voted to close Ben's school for next academic year. The teachers and staff have been wonderful to our family, treating Ben with love, care and respect. It will be sad to say good-bye to all these people prematurely.

This was the question posed to me by Logan. To him, there was a correct answer and because he wanted me to get it right, he sounded out the words for me. They were: save the world Big answers for such a little boy. And because of all the things that have happened over the past few weeks, I think about Logan's question often. In his open and innocent 5 year old mind, things are black and white. As adults, we see gray, sometimes too much. Often we cannot save ourselves, let alone the world. Perhaps if more of us were saving the world, less would struggle with saving themselves.

Logan made these men from rocks he found when panning for gems at Tweetsie Railroad this summer. We cleaned a closet and found the box of gems. And just in case you were wondering about what the Rock Men were doing: The man on the left is on the phone and the two of them are friends. They are standing in grass. For more works of art, check out 5 Minutes for Special Needs

I turn forty today. I have been preparing for this momentous occasion for almost a year. Change is hard for me and the upward progression in my age is really difficult.  There was a time in my late 20's and early 30's when I did not tell anyone my age. My younger sister often joked that I had turned 29 so many times that she had become the older sister. My sister and mother have been supportive by surprising me for almost two weeks with a small gift every day. My sister has a way with words and has sent me very funny poems, as well as, heart felt warm notes.  Planning celebratory events to "ring" in the new decade was a way for me to transition my way into forty. The 12 Race Challenge, our weekend trip to Charleston and a party on my birthday with all my girlfriends were ways to make me feel positive. And it has worked - I feel comfortable saying, "I am forty."

Here are a few places to check out: North Carolina Assistive Technology Device loan - The device loan program helps individuals try out equipment in the location they will use it:  at home, work, school or recreational activities.  It’s a “try before you buy” approach which helps individuals and funding agencies make wiser choices. A wide range of assistive technology devices are available including augmentative communication ( for people with limited speech), computer access, low-vision aids, assistive listening, aids for daily living, switches, environmental controls, adaptive toys and recreational devices. Devices can be borrowed for a two week period.  Toys and other AT for young children (birth to 5 years old) may be loaned for longer periods of time. WCWAA Challenger Sports   The mission of Challenger Sports is to provide sporting opportunities for the special needs community to reach individual and team potential by providi...

Ben is hugging Trilby from the Raggs TV Show, a PBS show created in Charlotte. Ben and Trilby would have made the Guinness Book of World Records in the Longest Hug category (which has not been attempted yet) had we not broken them up to give a turn to the other kids waiting in line. * Addendum to this post: In March of this year, the record for the Longest Hug was established - 24 hours and 17 minutes. I was thinking about attempting to set the first record with Ben if it had never been tried, but a full day of hugs may even be too much for Ben. Now a Bob the Builder Marathon... Check out more photos : www.5minutesforspecialne eds.com

Ben, age 7 Check out www.5minutesforspecialneeds.com for more works of art.