eSpecially Ben

It has been a tough transition for Ben from summer fun to school work. Last week, when the bus arrived at our house, there were no excited hands and feet jumping about. The lift carried a confused boy, wondering what happened to those carefree days of swimming, movie watching and lots and lots of time with the brothers.  On the first day of school, Ben came home with brother withdrawal. He could not get enough of them after school, attacking them with his rough hugs any chance he got. Assuming that Ben would be exhausted from a day of school and therapy, I was excited for some early nights to bed. Wronger I could not have been; he stayed up between 11pm and 1am each evening. I did not count on this transition, but with Ben's increased awareness, I should have.  Anyone going from an easy summer of fun to a rigorous schedule of school and therapy would find the change a challenge. Last day at the pool.   Last days of summer freedom.

" Haha, you think you can hold me with these stinkin' sheets! " Ben's new neurologist ordered a 30 minute awake EEG , a fairly routine test for people with epilepsy . I brought reinforcements in the form of Kim and Bob. Kim is Ben's longtime caregiver and Bob is his favorite character on the Bob the Builder show. Even with backup and distractions, they brought in another technician to hold him down. Ben dislikes anything on his head, and so he fought to take the wires off his head and kicked to try and get off the bed. " I will let you beat me this once! " We had called ahead to ask about using a papoose, but we were told that they no longer provided one, but they could provide us with sheets to use. Kim was the ingenious one and wrapped Ben like a burrito.  Something I did learn through this process was about Clinical Seizures and Sub-Clinical Seizures . Ben has both - his clinical seizures are atonic and this means they are characteri

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.