eSpecially Ben

Ben has his own Convaid Stroller now, and at the suggestion of his school physical therapist we added these "big wheels" to the order. These special wheels easily attach to the stroller without having to remove the smaller wheels. Ben's private PT is trying to teach Ben how to use the wheels, but his hands seem to get caught in the spokes. I also think they may be set too far back for his arms, although I have had Logan test it out and they seem to work fine. It is possible that if Ben sat up straight in the chair, he would have a better angle for propelling himself. Ben gets the concept and can move short distances, but his preference is to be pushed. No surprise there! The wheels are great for when we have long walks over rough terrain. They are much easier to push and provide a smoother ride for Ben. And then there's always that great smile...

Since Ben was two or three years old, we have joked about finding a Boot Camp for him. If you keep up with this blog, you will know that Ben is very good at pretending he cannot do certain things. He is tricky and successful in fooling the most seasoned professionals and parents. When Ben was three, he napped in a pack and play, near the window, about one foot away from a table with a few items on it. Ben could not stand, walk or pull up, or so we thought. One afternoon I walked into the room Ben was in and found the items from the table on the floor. I had not noticed them there when I put Ben down for a nap. I immediately blamed it on my husband. Who else would have carelessly left all those items on the floor? It did not cross my mind that it was anyone but Ryan. Next day, same thing happened. The items on the table were on the floor. It was strange and unsettling. And I could not blame Ryan anymore. He had cleared his name. This went on for a few more afternoons. I checked th

Ben is having major turnover in private physical therapists. He is still at the same agency, but the therapists are all moving. To the agency's credit, they have found qualified energetic PTs for replacements. I always give a new therapist my talk: Ben, although super cute, is a conniving manipulative 7 year old. Don't believe anything he tries to get past you. Be firm, yet loving with him. If he rubs his eyes, he is faking tired. If he yawns, it's the real deal. And after saying this, no one believes me until they witness it themselves. Ben pulled a fast one yesterday on a newbie PT and pretended he could do nothing. When it came time to leave, he walked one handed 15 feet, then up and down stairs to the car, and for his finale stood leaning against the car unassisted. Luckily, the therapist was watching.

Ben is making remarkable progress in physical therapy. In these photos, they are attempting to get Ben to stand unassisted. The therapist wrapped Styrofoam around his legs for stability. Look "No Hands!" If you are wondering why Ben has a rubber shark hanging from his mouth...it is to divert his attention from what he is actually doing - standing on his own!

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