eSpecially Ben

Finally, after two years, I got my act together and organized swim lessons for Ben with an instructor at the pool we have joined the past few summers. I saw her two summer agos working with a child with special needs, even got her phone number, but never made the contact until this year. Of course, when we showed up for the first lesson, Kathy already knew Ben from school and knew that he was a stubborn one. (That kid sure gets around.) The lesson in the video above is his fourth and final one for the summer and the growth in his abilities is remarkable. The biggest change she made was taking off his life vest and putting on a three-block flotation belt . It made Ben use more of his own body to swim and also gave him the freedom to move more easily through the water. With such success, we are implementing some of Kathy's ideas in Ben's weekly physical therapy in the pool and talking with the YMCA about finding an instructor that can work with Ben on a regular basis.

Dr. Kilbane was one of the doctors I interviewed for the nutrition article for Charlotte Parent. In order to reach more families at a reasonable price she is offering webinars about nutrition.  Just in an hour phone conversation, I learned so much from her, so I can imagine a series of workshops would provide new and practical information for parents.  If you are interested, you have to act fast - they begin next week.  www.sheilakilbane.com More about Dr. Kilbane:  Charlotte Observer Article

In June, I was asked to write an article about nutrition and its effects on special needs children.  The article is out. This is the link: Charlotte Parents Exceptional Child's Article

The tune "Ding-Dong The Witch is Dead" from The Wizard of Oz rang through my head when I was introduced to Ben's new school speech therapist last week at Open House. It meant the old one was finally gone after three years of doing battle. I had given up on Ben receiving any type of formal speech therapy at school. The final straw came when I compared three years of IEP and progress notes and found that the therapist had copied word-for-word her comments every time. She changed nothing. From the beginning, Ben's response to her was to kick and bite. I never denied he did those things to her, but it let me know that something was not right and I had the IEP reflect that Ben could not be alone with this therapist. Luckily, Ben's teacher and principal supported what we were trying to do with the NOVA Chat and communication in the classroom. They did everything within their power to make sure Ben received services, but in many ways, their hands were tied. Ben was n

AMBUCS is a wonderful organization, providing adaptive bicycles and tricycles for kids and adults with special needs. Ben is on his second tryke, and this one was a gift from his Aunt Olivia a few years ago. One of our biggest challenges in the past has been getting Ben to keep his hands on the handlebars, but he is now listening to our directions and holding on tight. We added a strap to help keep his chest in place and provide extra support. With assistance, Ben can ride up to five blocks now. When he gets tired, he starts to slump over. Holding his chest and body in place in addition to pedaling are hard work, but great exercise. Our goal is to get him to ride all the way to the playground after school to see his brothers. It is six or seven long blocks. I think it will be an accomplishment that will get lots of attention from other kids which is a great motivator for Ben. At the end of the day, like any kid, he likes to show-off. Joey, walking beside Ben, is one of our

Ready or not! Ben - 5th grade Logan - 4th grade Sean - 1st grade

Many parents with special needs children chart behavior, medicine and any other information they may need to know. Up until this June, I had only made note when Ben had seizure activity and this was at the request of the neurologist. I had made sad attempts to track his sleep in the past when it was haywire, but nothing was consistent because I was too tired to follow-through. I started this journey with a goal of a four week dairy elimination diet. Now we are on Day 60, tracking the following items: Seizure medicine changes Addition of allergy pill Addition of probiotic Bowel Movements Sleeping hours (including any naps) Dietary changes Cheating with diet changes We have learned so much from keeping this chart. As you can see from the photo, I did it "old school", on a paper calendar. I used pencil, pen and different colored highlighters to help things stand out.  These are a few areas in which I think charting may help: 1. It is a good reminder about t