I’m feeling downhearted today. I can’t even go into specifics as to why, but it relates to my daughter and how she is unable to tell me about her day.
I had already been feeling a little low. You see it was her Birthday recently, and every year I try to update a slideshow of her for when the family comes to visit.
I noticed whilst going through the pictures that we go to the same park every time to use the roundabout.
The park in question is actually over 10 miles away from our house. The wheelchair accessible roundabout hasn’t even been there for a year and we have used it at least 10 times.
I don’t know, or indeed want to know, how many parks we pass whilst traveling down windy country roads to get to that piece of equipment.
It’s a different town and county from us so it seems strange in this day and age to have such inaccessible leisure facilities for children with a physical disability.
One of our local parks recently updated its facilities. As part of the process they proactively took to Facebook and asked the community what features they would like the park to have.
I went on one of my classic rambles about the importance of inclusion and accessibility.
I mentioned how great it would be to have a wheelchair accessible roundabout (that all can use), a wheelchair swing (or at least one adapted to make it easier for a child with physical limitations), a sensory garden for those with visual or hearing impairments to explore texture, smells etc.
I mentioned a lot of things to be honest. I implored fellow parents to request the same. They did. They’re good like that.
What happened I hear you ask? Well it was the usual.
They thank you for your excellent idea, pay a whole load of lip service to you, agreeing the validity of your points… then they consult their bank balance and decide to instead put in some outdoor gym equipment that not only can my child not use… actually tore part of a child’s finger off in the first few months of being installed. Great work!
I am fed up with being ignored. My child is more disabled more by her environment and by the community than she is anything else.
Those in a position to change this, that hold the key to her potential and opportunities – listen up!
My daughter is 6. She’s a child. She loves to be thrown around, I’ve heared her roar with laughter as her daddy throws her up in to the air and sends her on “the daddy rollercoaster”.
I’ve seen her squeal with delight as daddy charges round the skatepark with her in her wheelchair, flying up the ramps with great speed.
I’ve seen her on the beach wheelchair getting to ride on the sand for the first time; and look at the sea from the same perspective that everyone else can.
Last week when I took her to the roundabout she laughed excitedly and cheered at the mere sight of the roundabout.
She showed that she knew what was about to happen and couldn’t wait to get involved. She absolutely loved it. It was worth the 10 mile trek.
My heart felt a bit heavy as we left the park… she was looking at all of the bits of equipment with interest.
She could see the other children playing. It was the first time I have ever noticed her thinking about her differences.
I hated so much that we had done a 20 mile round trip to utilise just one piece of equipment.
There is so much out there. If you google “inclusive play equipment” you’d be amazed at just how much exists to help make it so that every child can enjoy themselves.
I cried tears of joy once when a hospital provided us with a bed that Amy would be safe in.
I was so happy and grateful just knowing that for one night she would definitely be safe without me having to physically cling to her or stay awake all night.
It shouldn’t be like that. Not anymore. I don’t want to feel like it’s a special treat when I can change my child’s nappy in a dignified way.
I don’t want to walk through parks with blinkers on, trying not to look at just how much of the world isn’t for people like “us”.
At the moment I am at that difficult part of all of this where I can just about lift her without needing a hoist, but am finding physically it is taking a toll on my back and that I probably should start hoisting her more.
It isn’t so much her weight, but more her sudden unpredictable movements that can cause me to twist my back out or cause her injury.
I know that this summer I’ll be lifting her to place her in nest swings and onto slides even though each year it gets harder and harder.
I dread the day that I can’t do that anymore. She doesn’t yet understand that the daddy rollercoaster can’t last all day, because it’s hard work for daddy.
She will throw a big strop, kick out and scream because she doesn’t want the fun to end.
I don’t want the fun to end either, though sadly designing parks isn’t my job and I’m not the one holding the purse strings.
The right setting has the ability to promote learning social skills, playing with others, exploring surroundings, cognitive development, sensory feedback and so much more.
To me these are all fundamental in raising a child, especially one that needs all of those things even more.
I gave up going to soft play centres a while back. One charged us extra because we wanted to use the sensory room.
This meant that we paid MORE than Amy’s able bodied peers, even though we could experience about 90% less of the place than them.
I complained to the company and they offered me a free visit. No thanks. Change your policy. Another play centre told us off for leaving wheelchairs and medical equipment near the gate.
We couldn’t take those things in with us which was bad enough, but to insist we separate our children from life saving medical equipment? No. We have come some way in regards to attitudes about disability but so much more needs to be done.
I’d love to see a place have a lift or pulley system to get my child to the top of the slide. She loves the slide more than anything. But getting her on one isn’t possible.
I know we are a minority, and I know I sound quite demanding… but before Amy I hadn’t even considered the importance of such a thing.
I hope that by raising awareness that one day even one persons’ opinion will shift, and that they will somehow make the world a place our family can enjoy just as much as everyone else gets to.
When Amy isn’t with me I try not to look at parks as I walk the dog. I’ll even take a different route if I’m particularly sad.
Even then I’ll get sad that I’m doing a walk that isn’t wheelchair accessible and feel defeated that this is a part of the world she won’t get to experience.
It’s hard not to get overly bitter and emotional about it. She isn’t going to change. But the world around her should.
I’m not saying that overnight absolutely everywhere should become wheelchair friendly.
But it’d be nice if that shop I enquired about wheelchair access could muster up something better than “oh sorry no, we aren’t accessible” and look at how they can make it so that it is accessible.
When our lives aren’t being over medicalised involving hospital appointments, therapies, physio, tube feeds, meds, seizures and so on.. it’s so nice to actually try to engage with the world around us and focus on what’s important in life – making memories.
The two most important things to Amy are 1) family/people she loves, and 2) fun.
One of the best places I’ve ever been with Amy was the space centre in Preston. It is purpose built and designed to be accessible.
There is hoist tracking and just so many amazing features I couldn’t quite believe it. It isn’t near to where we live at all but worth going the extra mile for and booking in.
I just wish every town could have at least one place like this, and outdoor space too.
What does everyone do for a fun inclusive day with their child?
I’d love to hear of the best places you’ve been to or what you like to do to keep your child active and engaged with the environment.