The Blessing Counter: New wheels and our own expert.

Benjamin was five years old when he got his first wheelchair. I talk about the day often -- the joy on his face when he realized he could talk AND get to where he wanted to go simultaneously changed his life.

But perhaps I have failed to discuss the purchase itself.

First, I was emotional: facing the fact that Benjamin needed powered mobility had been a hard stretch for me. I had fought, denied, worked for any other solution. (I know that was silly in hindsight but I was a young mom and had no experience whatsoever with this.)

Second, I was practical: we needed a chair that I could fit in the van we owned at the time -- not an accessible van. There was one power chair on the market for someone as small as my son that could also fold up. Ding ding ding, this was the one we selected.

Now, I tell you this because to say I was one hundred percent relying on the physical and occupational therapists to point me in the right direction would be an understatement. I had absolutely NO IDEA what was available, what Benjamin required and what might work. NO IDEA. (Please read those caps with the emphasis they require!)

Our team was fabulous. Benjamin rolled out of that consult with a loaner chair while they ordered his and has never looked back!

Y'all, that was 21 years ago. My son has been rolling through life for 21 years. But still....this week when he went to be fitted for a new chair, I felt all the emotions sweep over me from that very first day. I sat a bit dumbstruck as they added supports to better help him sit straight, hold his head, use his electronics.

Because his sister is an occupational therapist, we begged her to come with us. She had made suggestions of things he might need and I listened with my mouth hanging open! I had no idea his joystick could be programmed to be his mouse for computer use. I had no idea that the toggle buttons could be programmed for HIS most comfortable weight-shifting position. I had no idea that a tray now exists that won't hinder his driving....

But Claire knew and Claire insisted he get to try it all. And so he did.

I will confess that we had the initial meeting months ago. Neither Benjamin nor I knew to ask for the things Claire wanted him to try until she heard about our consult...after the fact. And so we had to beg for a new consult and frankly, I am fairly sure this team was not thrilled with that. And so I felt terribly guilty this week as we went through the process again, with Claire at Benjamin's side.

So I sat there thinking about why I am not more of an expert after 21 years....why I didn't already know during that first consult to ask for these things. And I realized that yes, it has been 21 years but Benjamin has probably only done this -- select a new chair -- five times in those years. Not enough for me to be the expert. And y'all, I don't want to be the expert. I am juggling all the other needs here for him. And he doesn't want to be the expert. He has a full-time job managing his health and needs in addition to his professional work. It is too much to ask that we also be the wheelchair experts.

Too much.

And so I am sorry I wasted this team's time in early August. I am sorry that Benjamin has paid the price with the pressure spots his current chair is causing because we still don't have a new chair and won't for months. But I am also frustrated that the options weren't laid out for him clearly that day. I am frustrated that had his triplet sister NOT been an occupational therapist, we might not know today. I am frustrated that he is expected to hold all the knowledge, do all the work, all the research and then ask for it.

It is a wake up call for us for certain. I am planning now for the next Ability Conference. But I am also calling for change in the way these consults are done. The therapy team ARE the experts. They are brilliant, bright minds who make the world so much better for us -- I need them to present the options, talk us through, treat us like we know nothing (because we know nothing) and then let Benjamin make an educated decision.

And while I think this is absolutely true for everyone coming through their wheelchair clinic, I also want to offer advice that might just be specific to Benjamin (but probably not): Change can be scary for these who depend on wheels for their mobility. Benjamin has been burned by accepting a change in his chair that proved very hard for him to navigate. Therefore, he might come across as "just give me the same"....I hear it and see it and know his team did too. BUT, he doesn't know what he doesn't know. Do you hear me? He has no idea what options are out there if his team does not tell him. He can't imagine how things might be easier, more comfortable, BETTER if his therapists don't present him with the options.

Wednesday sitting in the chair Claire demanded they let him try, he looked like the five-year-old trying the joystick for the first time as he looked at his sister and said, "Claire, I know I didn't believe you. But you were right, this feels so much better."