Can this soapbox be taller?

Benjamin is 26 years old. He got his first wheelchair at 5. So we have been rolling this road for 21 years. Hmm. (The fact that his wheelchair journey is old enough to drink is making me giggle through my stress as I type.)

That first chair was an easy pick: We needed powered mobility that could ALSO fold up and go in my non-accessible mini-van. We were in residency, our financial situation was pretty much watching for the generic mac and cheese to go on sale for 4/$1 and throwing in a chicken nugget when the budget allowed. Anderson's Wheelchair was kind and understanding, and walked me through what was an extremely emotional season. I paid what I could each month (hear me loudly: insurance only covered a small amount and the rest was up to us!) and finally sent the last payment four plus years later just as we ordered his second chair!

Because he was growing, changing, having spine surgeries....he got two more after that during our time in Phoenix. The team there loved him, they loved Wade, and they treated us with the utmost respect and care. For us that meant scheduling promptly, listening to our needs, and yet, making sure we understood what was available (we didn't.). There were seat cushions and seat backs molded to his body, wheelchair trays custom made for each chair, and constant attention to positioning as Benjamin has quite the challenge to maintain posture that doesn't make his back hurt. 

We moved to Mississippi thinking we were set but that blasted posture became a bigger issue. He couldn't reach his computer to do his college work if his pelvis was constantly sliding down and out. So we sought the experts again. They had the best hearts, and admittedly, we don't do this enough to question anything, so we listened to them, ordered what they said and then I cajoled, urged, pleaded with Benjamin to have a good attitude about the vast differences he felt. It took him getting stuck in an elevator before I HEARD him, and realized we had completely changed the way his chair drives. His new chair was not a mid-wheel drive and in fact changed every single thing about how he maneuvered through space.

I felt terrible. I was all "it is just different, you will get used to it," "You just hate change, Benjamin, this is holding you in your seat so well!"

Sigh.

I didn't hear him. I didn't listen.

He became a representative for Quantum chairs not long after we moved to Delaware and an entire team surrounded him to guarantee the best seating, the best posture, the least pain and, to Benjamin's delight a mid-wheel drive! He has loved it and has begun to urge therapists, doctors, wheelchair designers, to NOT change the structure of a young person's means of mobility every time a new chair is required. He explains it is akin to getting a new set of legs and having to learn how they work. 

I hear him.

But today, four plus years later, he is having pressure spots from the back that worked so well early. He is having some pain from a cushion that no doubt needs replacing and his chair needs to adapt a bit. So we have opted to go through the seating clinic here and depend on the professionals who know how to make sure he has what he needs.

We met with them in early August and they tweaked this chair as much as possible knowing it would take months to get a new one in. We were grateful. 

Benjamin answered all the questions asked of him for two hours about what he likes about this chair. And we got the ball rolling for a new one.

And then a huge insurance snafu stopped the process. (That is an entirely different blog post....suffice it to say we had to jump through a million hoops and still the powers that be weren't communicating with each other and failed to follow up. ugh) One night over dinner we discussed the insurance issue, and the young occupational therapist in the family said, "Wait! He is getting a new chair? Did you ask for...."

And Claire began to list things that would, as Wade said, potentially be "life-changing" for Benjamin. Things we had no idea existed.

Benjamin teaching at AACPDM

I asked her to get involved. I looped her in on the communication with the seating specialist. And finally after a month of phone calls and emails and phone calls, the insurance snafu was settled and we could move forward, only to be told we would have to wait three months for an appointment to look at the suggested tools Claire thinks would so help Benjamin.

Three months. It has already been two since our first meeting. And more than that since I asked for help for the pressure spots.

I received an email today that the appointment has been moved up a couple weeks. So now it is just 2 and a half months from now. It will be months after that before the chair arrives. So probably close to a year of discomfort for Benjamin before we have a solution.

I say all of this because, well because I frankly need to vent, but also because we must do better. Do you know what a pressure sore can mean for someone with Cerebral Palsy? At the worst: death. But before that it can rob them of weeks, months even, of their life as they have to lie on their side/stomach/back out of their wheelchair while it heals. Jobs are affected. Relationships changed. Joy lost.

So let me climb up higher on my soapbox as we demand changes from a healthcare system that is overworked, an insurance system that has no understanding, and a system that is frankly letting our most vulnerable down every day.

Thanks for coming to my rant.