I have debated putting this in writing as I would never want my son to feel responsible in any way but caring has triggered health problems for me which are probably never going to end.
Years of lifting my son’s wheelchair into the car. Years of lifting Adam into the car, onto the toilet, into bed, onto the floor, onto the swing, lifting the equipment used to do his therapies and supporting his body as he works at getting stronger have all taken a toll.
Carrying him through soft play centres, up all those endless steps to the big wavy slides, enabling him to paddle his feet and do whatever his friends were doing didn’t help either, but they were all essential activities for a small boy.
Bending awkwardly to enable him use the toilet when out and the “Tetris-style” actions required to transfer a person from a wheelchair to a fold-out bench, to a toilet chair and back again all in the back of a VW transporter that you can’t stand up fully in certainly took their own toll.
A year ago I was left struggling to walk due to a prolapsed disc. I had lived with back problems for a long while. I had seen doctors, had physiotherapy and taken a range of prescribed painkillers which either didn’t touch the pain or would leave me zonked out and unable to do anything.
Then, one afternoon, it just went completely.
The only way I could walk even a couple of steps was to use Adam’s wheeled toilet chair as a walking frame. I was not an elegant sight!
I tried a chiropractor. Within three sessions the pain was manageable and I was walking without the toilet chair!
I wasn’t “better” but it was definitely less bad! Seeing a chiropractor up to three times each week is not cheap but it kept the pain in check and it has enabled me to make progress. I am still seeing them and I credit my ability to walk now to my chiropractic team and the wonderful team of family and friends who helped keep us going.
For 10 weeks I could not drive the car at all. For several weeks I could not look after Adam at all and it was several months before I could take over his care again. For almost a year I could not push his manual wheelchair at all. Even now, one year on, I cannot push him far and only on level ground.
One year on, most days end with pain. Sometimes “just” low levels of pain, sometimes intense levels of pain which stop me sleeping. Some days I dread hoisting my son because I know it will hurt but his needs have to be met.
Hoisting equipment doesn’t make it easy, it just makes it possible.
Some days I am so pleased to see my husband return from work, because it means I can have a small physical break from hoisting, bending, supporting wonky joints and generally battling with an octopus. It feels that way sometimes! He doesn’t just have physical disabilities, he also has some learning disabilities and is on the autistic spectrum. He struggles to understand my needs, my emotions or to have any idea that battling against the person who is trying to dress you is not a good idea. It is truly amazing how strong a person who cannot stand or walk can be!
Today I had one almighty spasm down my leg. It passed and I thought it was a warning sign and that I needed to rest. Unfortunately, it wasn’t a warning, it was the start of intense pain from my right hip to my calf.
I have a feeling that lying down is going to hurt too.
It seems unfair to write it down. I would never want my boy to ever feel that he was in any way responsible for my health problems.
The truth is, I would do every single thing all over again just to ensure that he had those years of happy smiles and being able to join in.
Now, though, we do need a bit of help.
Some of these things we are never going to do again. I am never going to hold him up to paddle his feet in the sea again. I am never going to take him through a big soft play centre again. I am never going to lift him to a slide.
Yet we could be able to look around the zoo.
We could be able to watch a film at the cinema.
We could be able to eat lunch out.
We could be able to go to see the animals at local attractions.
We could even manage a few rides at a theme park, we have many willing volunteers!
What we don’t have is fully accessible toilets. The addition of a ceiling hoist and a full sized changing bench would make everything possible.
Every local attraction, supermarket, restaurant, cinema, theatre, National Trust property, (just to name a few) has the ability to change lives.
That is what is needed.
For a long time businesses simply didn’t know what was really needed. Out-dated guidance has been used for too long.
Disabled people need accessible toilets, not disabling ones.
I am so pleased that most places automatically consider having wide doorways and level pathways but that investment is going to waste if people with disabilities still can’t visit because the toilets are not accessible.
So, please, when you are out and about this summer, think about all those who cannot enjoy the attraction you are at. Ask the management to look into installing hoists and changing benches for disabled people.
If you are a business owner or manager, please understand how it would feel to be Adam. Please understand that he is representative of hundreds of thousands of people.