eSpecially Ben

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...