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Showing posts from June, 2013


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.

A Twister

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

Tunnel Vision

  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!

Questions & Answers

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

Love the One You're With

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.

Summer Resources

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  - created a list of  ten summer activities  to do with your child that don’t require weeks of planning, a small loan or tr

Getting A-Head

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

Walking In Water

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