eSpecially Ben

My article in the Charlotte Parents' Exceptional Child Guide is out. Here it is on page 11. It does take a minute to load, so set it up, walk away and by the time you come back, you can scroll down to the page. Exceptional Child Guide This takes you to online version of article.

Someone sent this to me today - an article about teenage boys running races together and so much more: Unexpected Friendship

Ben has been practicing walking in the water  all summer long .  Here is a one-minute clip of him showing off his skills.

10 Years Old! Celebrating with friends, cupcakes, past teachers, more cake, a little magic,  more friends, and one more homemade cake from Logan!

Tomorrow is Ben's big day. He turns 10. Logan made this card for Ben. Here's his description in his own words: Ben is a big superhero float in a parade. Some people are playing the game, "Who is Cool?" and they are carrying cards to vote for Ben. Ben is holding the world because the world needs him.

A few months ago, our medical equipment representative offered us a wheelchair for Ben. Another family donated it to the company because their daughter outgrew it. Always ready to try something new for Ben, especially for free, I accepted the offer. We kept the chair for many weeks, but unfortunately it was too big for Ben and he always found a way to slide under the belt, leaving his body hanging and his neck in a choke hold. Although comical to watch Ben try to get out of the chair, I knew it was not going to work for him. I contacted several people to see if they knew of a family who could use the chair. I did not get any solid responses. Our friend, Celeste, at North Carolina Assistive Technology suggested we try the NC Exchange Post , a site like Craig's List, but specifically for equipment for disabled people. After posting the chair on the NC Exchange Post, we received a hit quickly. It was from a grandmother, Ellen*, needing a chair for her granddaughter, Adrian*.

An unexpected perk of having a ramp is that using Ben's tricycle just got a million times easier. The trike is bulky and heavy, making it cumbersome to get up and down stairs. With the ramp in place, it is easy peasy . Now, the trike is stored on the front porch, next to the ramp and is seen as another mode of transportation for Ben.  Ben understands the concept of pedaling - something we have worked on for many years. Now, his biggest difficulty is keeping his hands on the handlebars. We have blue tape wrapped around the bar to help him see where his hands need to be placed.  However, he does fight us, and we have to continually prompt him to use his hands. Ben's occupational therapist will do some work with him in the coming weeks. We may also try putting a textured tape or material on the handlebars to entice him to hold on. It was suggested to try the gloves that will keep his hands locked in place. Personally, I think this will anger and frustrate him. I would li

Groundbreaking Ceremony - Logan made the first dig. Sean stepped in for a consult. Logan lent a hand when they got to a tough spot. Logan wondered what he got himself into. At times, three strong men were needed to remove branches. AJ did most of the heavy lifting. Without the expertise of Sean, I am not sure how this ramp would have turned out. Ben sat with his friend AJ to oversee the volunteers. AJ took a particularly close look at them with his binoculars. No nail went unhammered. Shoeless Ben managed from the sidelines.

Ben attended Rainbow Express Camp again this year. Although I was not the person bringing him to camp, I was told that he was banging on the glass to get out of the car once he saw where he was going. One of Ben's mighty abilities is his memory. We do not go anywhere near this church during the year, but every year, without exception, he is clamoring to get in there. Matthews United Methodist Church's youth program coordinated the entire week. The teens in the program served as the camp counselors, and they worked their tails off all week making it Ben's favorite place to be. If Ben looks a little tired, he was. In addition to participating in a fun-filled day of camp from 9am-4pm, he had a summer cold too. When he was asked in the morning if he wanted to go to camp, he crawled to the door to get to the car. Ben's counselor, Tanner, sent photos to me during the week. I was actually away visiting family and it was so good to see Ben having a good time. It i

Since March, we have had a revolving door of staff working with Ben. Rather than discuss the gory details of each case, I decided to pass on what I learned from the experience. Having staff in our home is both a blessing and a curse. It is wonderful to have someone to help with Ben's personal care and independent skill building. It gives me a break and also helps Ben work on skills I may not have the time to do or are not skilled at teaching. However, it also means that there is a loss of privacy within our home. Feeling comfortable with the people who work with Ben is imperative to me. His safety is my first priority. It is not only what a staff person may or may not do, but it is the gut feeling I get when it does not feel right. I may not be able to put my finger on the problem, but that should not discount my feelings. These are a few things I have learned, and I would love for others to share any tips or ideas they have picked up through their own experiences. Trust yo

Today, Love INC coordinated the building of a much needed ramp on our home. Elevation Church volunteers followed the lead of Steve Parrot, a carpenter from Eastern Hills Baptist Church  and within 3 hours completed the entire structure. Our ramp was one of 600 service projects during Love Week , an annual event for Elevation Church. Steve cannot give an exact count, but this ramp probably put him over the 200 mark for ramps built with his help. Words cannot express our gratitude. Although complete strangers came out to help us, they left as friends. There were promises of a BBQ/Stain the Ramp/Fall Get Together in September...I am already planning the date!

Many months ago, I was told about a place Ryan and I could go for a weekend away. No charge, no hassles and meals included. Always the ever trusting and thrifty person, I tried to book a weekend in March, but it was already reserved. We finally scheduled a date for this past weekend, which worked out well because our 15th wedding anniversary is in just a few days. So what's the deal? Free lodging, food with no strings attached? Cannot be believed! Yup that's it. No 90 minute program on purchasing a time share, no recruitment into a religious cult and no scary dungeon with a dragon waiting to be fed two unsuspecting parents. The owners Jon and Paula, are parents to two grown sons. One son was born with dwarfism in the 1970's. Because their son had some special needs, their world expanded. They met parents who had children with disabilities, and they came to understand the stress and difficulties they faced each day. This led them to building a private cottage on the

Never thought I would be relieved for Ben to have just a run-of-the-mill skin staph infection, no MRSA. Thank you for your prayers and well wishes.  After taking Ben to the doctor a second time and being reassured that he was healing, I did go to Philadelphia to see my friend Carla. We had an incredible time catching up, eating, walking and just spending time with each other. I came back refreshed and ready for anything. The trip reminded me that getting away is important to my mental and physical well-being. Perhaps I should not wait 13 years again to visit Carla. If you are ever in the Philadelphia area, I highly recommend Longwood Gardens and Tyler Arboretum . They are probably some of the most beautiful places I have seen in awhile.

Have you ever been on a roller coaster ride and you are so miserable that you are not sure you can hold out until it ends. Hoping against hope that you will not be the one to yell, "Stop!" Beginning with last week, my ride has been of the boomerang, double dip, dog leg and cobra roll variety. Unfortunately, I am still on it and expecting a trim brake  is my only consolation. It started last week with stressful staffing issues for Ben and escalated from there. As last week progressed, I noticed a pimple on Ben that needed watching. By Monday morning, I knew a doctor visit was inevitable. That Ben was in pain was obvious. Because of the location of the infection, he could not sit. He was yelling, moaning and whining, something Ben simply does not do. His pain tolerance is very high. At this point, my anxiety and stress were affecting me physically and emotionally. I was keenly aware of my situation, but I did not see any way to a quick fix. If I had a doctor prescri

  This was a first for Ben. He sat in front of it for several minutes then went for it. He made it all the way through!

Sean is five years old and his awareness about Ben's condition is growing. His curious questions, frustration with other people's questions and then his answers to others' questions show that he is experiencing emotional and intellectual turmoil. Sean had expressed to me that his friends at school asked a lot of questions about Ben, and he was annoyed with the questions. Not in answer to Sean's concern (I did not have the wherewith all to plan this), I took Ben to Sean's classroom for lunch. The children stared at Ben, and Ben did not help the situation because he was overly excited to be there and was making so much noise.  It is a Montessori school so meals are eaten in silence so Ben's sounds were even more pronounced in the very quiet atmosphere. After I realized the kids did not know what to make of Ben and were perhaps a little scared, I asked the teacher if I could formally introduce him to the class and answer their questions. I was not ready for so

Logan attended a sleepover so we took Ben and Sean out to eat at their favorite burger joint. Throughout the meal, Ben would not take his eyes off of Sean, giving him the "Look of Love" coined by Logan a few years ago. Until this night, this look was reserved only for Logan. Of course I did not have a camera to capture the moment, but here are some others of Sean and Ben.

After I saw this offer by  Studio Movie Grill  to see first run movies in a family atmosphere (read=noisy) where kids with special needs and their siblings were welcome, I knew I had to share the link. The kids are all free and the adults are $6. This company is nationwide so take a look to see if there is one in your area. Then I thought I should share other summer resources and if I had about a million years, I could put them all here, but luckily another organization did the work for me: Federation for Children with Special Needs  -  This is Federation's 2013 Summer Fun Camp Directory. You will find links to over 200 camp Web sites serving children with disabilities, as well as useful information and resources to help create a rewarding summer camp experience for you and your child.  Here are a few others I found: Top Ten Activities  -  AbilityPath.org created a list of  ten summer activities  to do with your child that don’t require weeks of planning, a small loan or tr

Logan got himself buried in the sand with Dad's help. Summer is almost here!

Last summer, while on vacation at a Jellystone Campground, Ben started to let go of me in the pool. He wore a life vest in 2 1/2 feet of water and by the last day, he was pushing me away and standing in the water unassisted for short periods of time - a few seconds at the most. This year, we joined an aquatic center with a special indoor therapeutic pool. I figured by the end of this summer, Ben would walk in the water while holding on to the rails. Once again, the stinker proved me wrong. We went to the aquatic center twice during Memorial Day weekend, just a week ago. Ben screamed in joy every minute of the 5 hours total we spent there. He sat in about one foot of water and watched everyone play. He moved around a bit by crawling and scooting. This Sunday, he insisted on leading Kim, the community staff person, to the 3ft area. (big kudos to Kim, because the water was icy). There were many boys his age swimming around and goofing off. They definitely were the impetus fo

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 thi

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 anyon

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

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