Brendan is going to trial Power Wheel Chairs

The day has come. I have gone back and forth for years and I am not entirely sure why. I always said I would get him a power chair when he reached adult hood. His school PT mentioned starting the process during his last IEP and it made me think a lot about them over the last 8 months. We took him to the abilities expo and had him try out almost everything they had this past September and I fell in love with two of them.

Brendan has used his manual chair every single day since he was 8 years old. He has bigger triceps than us. He wheels fairly well but he tires quickly. He often asks to be pushed instead of bothering to wheel. I have been told over and over to get him a power chair by the distributors. In the back of my head I always questioned their reasons. Did they just want to make the sale? Do they really know my child? Do they think it is easier but don't understand my need to push my child? I was told he will need shoulder surgery as an adult if we allow him to wheel himself around for years to come. I always thought getting him a power chair would make him lazy. I never wanted this huge monstrosity in my house. I look at him and think he doesn't look like he needs one, whatever that means. He looks amazing in his manual chair. I never wanted my child in a wheelchair. At age 3 we ordered his first chair (which I hated from day one) and said we would never order another one again. I didn't fully grasp cerebral palsy at the time and I had no idea what a toll it takes on the body. I ended up ordering him one at age 8 and it gave him so much independence. He loves his wheelchair. He has always asked for a power and we adamantly say nope, you don't need one. But does he?

I had to dig deep and think about all of the ways a power chair can help him. He won't have to ask for help. He can jet off in an instant and see what he wants to see. He doesn't have to think how hard it will be to wheel up a ramp or across the store. He can raise himself up and talk to people at eye level. People don't always have to took down to him or crouch down and talk to him. I often get down to his level and speak to him as it feels more natural. A few months ago I wheeled myself using his manual chair one day while we practiced the routine we developed for him getting off the bus and into the house independently and honestly it was difficult, my arms hurt just from a few minutes of self propelling. I also realized that he is heading towards 17 and it may be more difficult to get insurance to approve one after he turns 18. They will ask why he needs one now when he didn't need one for the last 18 years. I am trying to get all my ducks in a row because from age 17 to 18 there are a ton of changes. We have a lot to do regarding him reaching adult hood. I better start this process and knock one thing off of my list.

I had been asking the PT to set up a trial for months now and it hasn't happened. I spoke to his orthopedic during the last visit and they told me if school drops the ball they can help order one. I thought about how much more difficult the process would be trying to order through a company and get a different PT to write up all of the orders needed for approval especially when they don't even know my son. I have let this sit in my head for months. It was finally on my list of things to do. Call and set up a trial at Hasbro PT and then I randomly received an email from his school therapy company that they can bring him a trial chair on Monday. Sometimes everything falls into place.

So here we are. He is going to trial a Permobile and I also asked for the ROVI X3. His PT is all about the Permobile but I fell in love with the ROVI at the expo. Honestly I do like the standing option on the Permobile however it is extremely hard to get apoproved and you have to have contraptions all over your body all the time in order to stand. I don't think he would like being restricted especially when he hates to stand. I am sure over time it would become second nature and he would stand up and sit down all of the time but in the end if that feature doesn't get approved I don't want that wheelchair because of the turning radius. The ROVI can turn on a dime. His vision isn't the best and he would be able to handle that wheelchair much better. I am excited for him to try them out and see what works best. I am sure actually testing them out for a few weeks will help make the decision easier. I really hope the PT lets me decide and doesn't push what she wants.

As of right now I do not want the wheelchair in my house. I intend to keep the manual for inside but I honestly don't know how long that will last. He is actually becoming very independent using his manual with transferring to the bathroom and getting out of bed on his own and I don't want to take that away. Not to mention does he really need a power chair to wheel down the hallway to his room throughout the day? I don't think so. He already marks up the walls and doorways enough with his manual. I picture gigantic dents and missing pieces of plaster with a power chair. The other down side is that we no longer have an accessible vehicle. He has a braunability transfer seat that moves out of the van for him but we no longer have a ramp. We do have a truck and can take it with us when needed once we purchase an appropriate stand to attach to the hitch. It just won't be as easy.

So many things to think about. I have never been 100% on getting him a power chair and I am still not. I am getting there. I do think it could be helpful. I do need to think about his future and working and having more use of his body without the worry of self propelling. He constantly drops items while propelling and I am sure the power chair is much smoother and easier to drive around.

If you have struggled with this decision and have any advice please share. If you have a chair you love please share a picture and tell me why you love it. If you went with the standing feature please let me know all about it. Besides the cool factor is it actually practical?