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My son isn’t a powerchair user

My son isn’t a powerchair user

“My son isn’t a powerchair user”, I said to the man on the phone. “He can self-propel (for the most part).” “But do you think he would benefit from some sort of power assistance?”, said the gent from the charity.

“I guess he would. He gets extremely tired and his manual chair is not very supportive, so he is getting a lot of back pain. Plus his manual chair keeps breaking. But do we qualify? I mean, aren’t there lots of children who rely solely on a powerchair for getting around, that need one more than us?” I asked.

That’s how it started on the Friday. A call from a charity that was looking for children to donate powerchairs to. (I know!! This sort of opportunity never falls in your lap!)

By the following Monday evening, we had moved swiftly towards a new level of independence for our son.

A move that we really had not appreciated we had needed so urgently.

And I began to experience a mind-shift too - away from feeling undeserving. (Why do we do that? Why is our instinct to always feel like we are taking something away from somebody else, when really we should be jumping for joy that somebody is wanting to help our children, who are absolutely, thoroughly deserving of the right support? What is that about?!)

Anyway, I digress. As we entered the room where the charity representatives were and the rep who was there to assess Hadley’s needs, he said, “I don’t want a powerchair mum. I like my chair.”

“Just keep an open mind”, I told him. “You might just get a set of power-assist wheels for your current chair, but let’s just see."

Well, as soon as he got into a powerchair to try it out he was off!! And the smile on his face was an absolute picture.

He could go fast and keep up with his twin sister, after nine years of frustration. And I knew exactly what he would say when he finally drove it back to me.

He loved it. His opinion changed in a heartbeat. He so desperately wanted a powerchair. It was independence all wrapped up in a hunk of metal and wheels!

Skip a couple of months and some deliberations with therapists, and we’ve taken delivery of the ‘Lamborghini’ as we call it and life has changed.

From struggling to make friends at his new school and relying heavily on his adult helpers, Hads became the coolest kid in town who could suddenly hold his own and be himself.

Over-night his outlook, posture, happiness and independence rocketed.

And he's soooooo good at driving it. Cue the inevitable parental guilt for never having even thought about getting him one before! (Although he's not using it completely full-time, as he needs to keep working on his core strength; and we don't want him to lose the ability to self-propel.)

As with everything, it does take some getting used to.

Like getting it in and out of the car. We don’t have a hoist that can manage the weight of it yet, so we have to break it down into parts.

Which is totally doable, but in the rain and freezing winter temperatures it takes some stamina…. I need to get myself a Formula One pit crew!

And suddenly the access issues in our locality are glaringly obvious.

I hadn’t appreciated just how many kerbs and steps we must have been bumping up and down with the manual chair.

The powerchair is way too heavy to do that, so there has been a bit of on-road driving going on - heart attack central for me!

And getting it into other people’s houses. Well… that’s an entire separate post.

But even with those challenges, it is an absolute god-send. I can’t see us ever looking back

We will be forever grateful to the Peter Alliss Masters charity and the generous people that fundraised for them, for this life-changing donation.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sarah Brisdion

Meet Our Blogger

I am Sarah. Mum to nine-year-old twins, Erica and Hadley. They were born at 27 weeks gestation and as a result, Hadley has Cerebral Palsy - Spastic quadriplegia. We live in the New Forest with our three cats. You'll often hear me ranting about toilets.

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