Wheelchair Chaos

So, this may end up being less about the wheelchair and more about me momentarily losing my mind when chaos ensues.

William spends a large amount of time in his wheelchairs. He has a manual-chair for going out and a power-chair for around the house. These chairs provide access to the community, access around the house and the postural support he needs to be comfortable in them. They are a very important part of William’s life.

These chairs are specifically designed for William and built custom.

Several times a year we have a team from Vancouver assess them – they grow them and make necessary adjustments as needed. Recently, we had the team come for a regular check-in on all his equipment. We have been working with this team for years. They know William and they know what accommodations we need for him and for us, as caregivers, to assure William’s safety and our safety for transfers into these chairs.

Side note – this is the first chair assessment appointment I could not attend.

Fast forward to the first appointment after the chair adjustments were made.

William was having a rough day – not terrible, just experiencing some tone. And once he knew we were going out that tone increased with excitement.

He was dressed in cute, going out clothes and I went to transfer him into his chair.

He went rigid as a board and as I went to do up his seatbelt I realized it had been adjusted so tight that there was no way I was going to get it done up. I was forced to grab him any way I could to keep him safe. My only option was to grab his clothing and carry him like a barbell back to a safe spot.

I was instantly annoyed as I knew adjustments to the chair had almost caused an accident. An accident that everyone knows can potentially happen.

As I kneeled next to William to apologize for the chaos, I felt myself heating up like a kettle ready to boil.

I was mad, I was disappointed and I was trying to reel myself back to figure out how I was going to get my boy in his chair so that we could get him to his appointment.
As I evaluated the situation, I knew I needed to change his clothes to the thinnest clothing he has – it’s December and now I must dress him for summer. I knew we both needed to be calm if we had any hope of getting out of the house. The clock was ticking and I was now sweating. I did not feel calm.

My mind was racing and the mom guilt was setting in – I should have been at that appointment.

While my brain was reeling through the questions, frustrations, and what-ifs, I got William into different clothes and re-loaded him into his chair – this time with success, barely. He was so snug in his chair, I just couldn’t fathom how they thought the set-up would work – for comfort, safety or posture maintenance.

For reference, the seatbelt is adjustable like any lap belt in a car. The straps are screwed into the bottom of the chair and there should be room to lengthen the belt for William to get into the chair. Once he’s in safely, the belt then gets tightened up to hold his posture properly. Other considerations like thicker clothing, weight gain and comfort all need to be considered when setting the length of the belt – this had all been overlooked or maybe disregarded. And at the last appointment I specifically took the team through these things and ended up purchasing new belts to accommodate it all.

In the end, we made it to the appointment just in time and Bear made the necessary adjustments to the chairs when he got home.

It may seem like this one incident was no big deal, but it happened after a hundred others and was preventable.

It just left me wondering if people hear me when I speak, take what I say seriously, and place value in the fact that I know what it’s like caring for William better than anyone. My advocacy is not quiet!

Don’t get me wrong, the people who support kids with special needs can do amazing things and have the best of intentions. But most of them don’t know what the day-to-day looks like. Their ability to help is based on how much information they can get from parents and caregivers in a very short amount of time.

I guess my advocacy needs to be louder – challenge accepted.