Let's go in yonder, please.

My adult children were home for a bit over the recent holiday season. Is it cliche to say that there is simply nothing better? Conversations were rich,  laughter was frequent, and my heart just felt so at peace to know all those precious people were sleeping under my roof each night. (But less I paint too perfect a picture, there were also constant messes in the kitchen, a ton of laundry, and late late nights that left me with quite the circles under my eyes!)

Perhaps one of my favorite parts of parenting young adults is hearing their memories of growing up in our home. Listening to them talk about our family traditions never ceases to bring a smile -- and sometimes a laugh as some traditions were never intended to be such.

When the triplets were young, we had a steady routine. They would get up, we would have breakfast together, and then go back to their room to get dressed for the day. Apparently, I would daily say something to the effect of "Ok, let's go in yonder and I will get your shoes on." Or "Go in yonder and watch "Little Bear" while I get my clothes on real quick." You get the idea. So when we moved to Phoenix one of the first things they wanted to know was which room was "yonder". I didn't understand. "MOM! Which room is yonder" they implored me. It took several minutes for me to realize what in the world they meant.

Hence, most people have a family room. The Shraders have a yonder.

Often, as my crew remember, I learn how some event, season, circumstance affected them. It can hurt to hear they were hurt by something that maybe we missed recognizing completely. And if it was due to something we, as parents, said or did, well I am always devastated by those memories. "I'm sorry" never seems quite strong enough.

But sometimes, the memories have nothing to do with me, or our home, and seem almost to come out as my amazing children process them. One such discussion felt like that this season. We were discussing school and some legislation that I have been working on here in Delaware regarding education issues. Mason began to recount being alone in the special education room and how horrible that always felt. I was shocked. Truly. You were not ever in the special education room, I said. No. He told me. He was. If his teacher didn't want him completing assignments on his computer when the other students were writing their's, she sent him there. What? Why didn't I know about this?

And as we began to discuss and dig into the circumstances, and I continually reminded him that he was supposed to be full inclusion. He said, yea, I think there is a lot more segregation happening than parents are aware.

For the love.

I can't quite wrap my mind around it. And honestly, I feel very sad even trying to. I can sit here and type about what I thought was happening, the safeguards we had in place, and the ridiculousness of separating this child from his peers. But it won't accomplish anything today. Rather, we as a family will keep working to make it better for those following in our path.

I will say, Mason is working on his PhD at Brown University in BioArchaeology today. He is teaching Brown undergrads and frankly in my perhaps not objective opinion, changing the world by demonstrating all that CAN be accomplished with cerebral palsy. I am ridiculously proud.

 

I had the privilege this summer to be interviewed for a podcast in Australia. I am linking to that ResearchWorks Podcast here because we discuss so much in that hour together. And yet, there is so much work to be done. So many attitudes to change. So many people to educate.

We must be ever vigilant. Motor skills alone should not define our children.

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."

Thank God we have our own expert. And thank you God, that it doesn't have to be me.

I'll keep y'all posted when his new chair arrives, I promise!

(Merry Christmas from all of us!)

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.