eSpecially Ben

Pictures ARE worth a thousand words. I tell people about the things Ben can do and I get a blank stare or a polite smile. I know what they are thinking, "Yeah right." Now I have the proof! The photos are current, but these are the same activities Ben was doing pre-seizure, two years ago. Now that he is on the right medication, Ben is back to progressing with his physical abilities. While having seizures and trying to find the right medication, Ben was not attempting any of this climbing. I am also noticing him understanding more of what goes on around him - seeing someone walk in the room with pizza boxes and understanding what is inside. Grandpa asking him to come to him because he will help him out. Ben is responding more quickly to his environment. He pulled his cousin's hair (again) and he understood that he had hurt her. His face showed a reaction that was approriate for seeing someone cry. This is a change from past situations. And even though I do not have

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This week we are considering ordering a new walker for Ben because the one he has is too advanced for him. His school and private physical therapists are concerned that the pressure he is placing on his shoulders will cause serious side effects in the future. Ben also walks in a crouched position using this Kaye walker and his endurance is very low. The problem is that insurance will only pay for a new walker every three years. The decision made last February was a poor one. I have learned from this mistake - ask questions and get more people involved in the process before ordering an expensive piece of equipment. In an effort to outline all our options, I spoke with one of the representatives from the company who ordered the walker and she introduced me to an incredible organization:   Suzie's Closet I think I have mentioned before how amazed I am when parents raising special needs children start an agency or organization, write a book or open a business to help other chil

If you have a child with special needs, most likely, you will also have gadgets and gizmos that help your child learn to walk, talk, eat, drink, toilet train, sit-up straight and a whole host of other skills. Some gadgets and gizmos may be a medical necessity for your child – helping them to breathe, get nutrition or stay healthy. Whatever it may be, it takes time to find out about what is available and then learn the ins and outs of each piece of equipment. But when a real good tool comes along, it can be life changing for the child and even the family. Over the next few months, I am going to introduce a few of the items we have used. I am always surprised to find out about new equipment. I hope to spread the word about things that have been worth the time, effort and cost for us. The TAOS , Therapeutic Ambulatory Orthotic System , is what I am focusing on today. Not many people have ever heard of it, even physical therapists. It is actually Ben's latest gizmo – and it is seri

Ben was invited to a Chuck E. Cheese birthday party last Saturday. He was using his walker to get around. Within the first few minutes, I spotted the Bob the Builder/Scoop Ride and led Ben in that direction. Let me give you Ben's history with Bob and this ride. Ben is the BIGGEST Bob the Builder fan that has ever lived. He owns just about every movie, piece of clothing, bedding and doll, and has seen "Bob Live" on stage. At the last Chuck E. Cheese party he attended, Ben spent two hours on the ride, and he gave Bob a big kiss at one point. I was not there for that party so I wanted to see Ben's reaction today. So back again to Chuck E. Cheese. When Ben was about four feet from the ride, he stopped and decided he did not need a walker. He let go and took 2-3 steps on his own before falling and hitting the ride with his head. Let me say it again: Ben took 2-3 steps on his own. I was behind Ben when it all happened, and I was concentrating on him falling that I re