eSpecially Ben

Many years ago, I heard this story: A father and his small child are riding in a hospital elevator with another person, not known to them. The child was acting up. In close quarters, it was very disruptive. The father did not address the behavior, did not seem to even notice. As the elevator doors opened, the stranger in the elevator, made a snide comment about the child's improper behavior and lack of parental discipline. The father replied, "I am so sorry. I am just not sure how to tell him that his mother has passed away." This summer, there were two times where I made assumptions about a situation without having all the information. Although I try to keep the above story in mind when assessing any situation, being human I sometimes jump to conclusions without having all the information. Ironically, in both situations, it was not obvious to me that people with special needs were involved. Luckily, in both cases, a positive connection was made. After I figur...

 With a couple of paper plates and colored foam board, you too could have some monkey business. Ben brought this little guy home from camp. Click here to see more works of art.

When Ben was little we were never sure what his needs would be as he got older. We hoped that he would begin to talk and walk. With such a vague diagnosis, we never knew how Ben's development would progress. The idea of needing to change our home to meet Ben's needs was a fleeting thought. If Ben does not walk , was not something we spent a lot of time contemplating. Avoiding this thought was easier. Even if Ben did not walk, the future seemed a long way off. Ben is seven now and the unknown future is here and more apparent. The physical and financial problems will be major issues for us. When will we make these changes? How will we cope with these changes? Where do we add a ramp? How do we enlarge the bathroom to fit an adaptive toilet? Will our car need to be retrofitted for a wheelchair? How do we pay for it? As difficult as these decisions and financial problems will be, dealing with the emotional issues associated with these changes will be most challenging. It mea...

On the beach at Okracoke Island in the Outer Banks of NC Check out other photos at www.5minutesforspecialneeds.com

That is the question that I am currently stressing about - seem silly to you? Yeah, me too, but I still feel the need to stress about it. Early on in my blog life, I wrote "Dress for Success" , a discussion about how important it is to help your child look the best she or he can. This summer, after being nagged by a few (Ben's Dad and Ben's grandma), not that I am calling anyone out, mind you, I decided to let Ben's hair grow out. I usually keep it very short. It stays neat, no gel or combing needed in the rush of morning chaos. Now school starts in a week and I am rethinking the whole "growing it out" - I know it is in style, but does it look more messier than "cool?" Will this look make him look odd or strange rather than fitting in with current fashion? Tonight I asked Ben what he wanted. Funny kid, he reached out and grabbed my nose...And gave me an idea. Ben makes choices very well and he always seems to know what he wants. I am go...

Let's just say I finished in a respectable amount of time and that I look forward to running in cooler weather. And perhaps it was divine intervention that I forgot to collect my timing chip at check-in...so no one really will know my "respectable" time. You will just have to take my word for it. To hear how I got to this point, read about my 12 Race Challenge .

A hot and muggy afternoon with bored kids gave me the courage to drag out this book. It turned out easier than I thought, got everyone involved and had lasting effects because the boys played with the airplanes when they were finished. Click here to check out other works of art.

Check this blog entry out from the Huffington Post . It reminds me that we are constantly learning, sharing and giving, especially when we allow our hearts and minds to be open.

How do you tell the difference between a bad habit and a good routine? For the past several months, at about 8pm, Ben crawls up on the couch with my husband or me, cuddles and falls asleep within the hour. It started out with a lot of oohs and ahhs from us - snuggling with Ben is very sweet. If we move him too early, he gets out of his room and crawls right back with us as if nothing happened. I do wonder if we are doing the right thing by allowing this behavior. Questions enter my mind - Do I want this same behavior six months from now? Not sure. Would I allow my typical sons to do this? Definitely not. But then I also think about how life has changed in the past year with respect to Ben's sleep schedule. He is not getting up many times a night due to nasal congestion. He is going to sleep at a reasonable hour and sleeping until morning. Ben's snuggling could be meeting a need - spending time with us without his brothers. Ben is in school or camp all day, then typical...

Growing up, my parents gave us kisses on each cheek and called them Double Whammies. Logan photographed our version. Check out other photos at www.5minutesforspecialneeds.com

Ben having a good ole' time at camp. Ben attended 6 weeks of camp at Imagination Station this summer, a camp coordinated through the County Parks and Recreation   - Therapeutic Recreation Division. Each week, Ben swam, participated in music therapy, My Gym , arts and crafts and story time. A field trip to local amusement parks and other fun places was also part of their schedule every week. Because the camp director is educated and trained as a recreational therapist , she understands the needs of children with disabilities. A consistent, predictable schedule was set for the week, but specific activities changed often throughout the day to offer variety and keep the attention of the campers. Ben loved this camp. When I came to pick him up, he was never ready to leave. One of his favorite places was the playroom filled with tunnels and slides for kids to climb and hide. Although Ben mostly observed the kids running, he enjoyed it so much. So many of his fellow campers woul...

Camp sponsored a day-long "Camp Fest" with water slides, magicians, dancing and ...a caricature artist. Click on the image to see other artists' work.

Each year a local church sponsors a week-long camp for children with special needs. This was Ben's 4th year attending Rainbow Express . What makes this camp so different from others is that it is planned through the youth ministry at the church. The teens of the church coordinate all the details, activities, serve as the counselors, and prepare a new puppet show each day. The adults in the church serve as nurses and additional staff. Many take their week of vacation to volunteer at this camp. Max (Buddy), Ben and Rachel (Counselor) Over 100 campers attended this year. Each camper is paired with a teenage counselor, and some campers also have a Buddy, a peer who has typical abilities. Ben's counselor was Rachel, a rising freshman in college. Ben's buddy was Max, a another super-cute six-year old redhead. It really is impossible to describe how wonderful this camp is for everyone who participates, volunteers or parents a child who attends. I do know that Ben meets ...

Just having one of those moments. Check out other photos at www.5minutesforspecialneeds.com

My mom sent this link to me recently. It is pretty wonderful and really unbelievable. Take the time to watch the video and then check out the blog: Carlys Voice .

Ben's Aunt Olivia and Grandma made this cake for his 7th birthday. Check out other works of art at www.5minutesforspecialneeds.com

Ben's 7th Birthday Party: Local Fire Engine Visited Our House (on purpose) Check out other photos: www.5minutesforspecialneeds.com

We spent last week at the beach near Atlantic Beach in North Carolina. At Fort Macon Park , they have a special chair for people like Ben who may need extra help moving in the sand and water. The chair is made by Landeez . We were amazed by this chair. It did travel over the sand and in small amounts of water with ease. We bought an inexpensive strap to go around Ben's waist so he would not fall out.  I thought that Ben could go farther in the water sitting in the chair, but it does eventually float...away if in too deep of water. Ben got tired of sitting in it and wiggled his way under the strap. For the most part, it is a great invention and it made it easier for us to keep Ben safe on the beach. If he had been interested in a long walk on the beach, this would have worked great for him.

For Ben's 7th Birthday, his guests were given the opportunity to paint a wooden fire truck from Michael's . Ben declined from painting - he was a bit too excited to focus on painting. Here are some of the artists with their work:  Jackson, age 6 1/2  Logan, age 5  Ethan, age 4 1/2 Samantha, age 2 Check out other works of art at www.5minutesforspecialneeds.com .