Swings & Smiles is a member of the Disabled Children's Partnership who, alongside a coalition of 60 organisations, campaigns for improved health and social care for disabled children, young people and their families.

Their Secret Life of Us campaign highlights the reality of the many challenges disabled children, young people and their families face during their day to day life. Below are some powerful poems written by Swings & Smiles families which give an insight into their lives, and some of the difficulties these children, their parents and their siblings encounter. 

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Why is life so hard to understand?

Why do I not fit in?
I just want one day where I don’t have to worry
I stand at school, I feel overwhelmed
So many noises, people brushing past me, I don’t want them to touch me
I feel worried, I just need quiet
I am screaming inside, no one can hear me

I won’t give in, I won’t let bullies win
I will get up every day
I will face them, I will succeed.
I am better than these people.

People don’t know the real me, only what I show them
I hold it in so they accept me
I just want to be me.

– Anonymous

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8.20pm at Eddie's

My hand waves, I tap the strap to come out, my eyeballs burn into Mum’s head, my staring is saying "I want to go bed".

I will put my arms out and swipe whatever is in my reach as Mum pushes me, "weeee, this is great fun!" CRASH, there goes the DVDs, books, teddies, and let's break the door as I open it the wrong way.

Oooo, bed… I love my bed and my toys here. "I need to have that one there, no not that one, THAT one!" Can't you see my eyes pointing and hand waving?

Here comes the hoist, Mummy lowers it so I need to give her a hug at the same time. Oh, Mummy banged her head on the metal bars, oops, I did that. Oh well, look, "I need that book now".

Flying into bed I must go, weeee! "Oooo, my bed-socks", I wave my foot at Mum too to put them on, also whilst she is lowering me onto the bed.

Mum, am I on the bed yet? "Ooo, Kermit, Elmo, Teddy, bed socks, blankie, must have blankie!" In my position I wriggle and give my kisses and hugs.

Now I settle…. But what destruction can I cause overnight?

– Eddie is non-verbal. He has global development delay, PMLD, adrenal insufficiency, under-active thyroid, scoliosis and cerebral palsy. This translation of his bedtime conversation was written by his mum, Trish.

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You just don't understand him

He fell in the pond
It's out of his system now, he won't do it again, you said
He then pushed his sister in

He's scared of dogs
So you've decided to get a dog
He'll be fine after a few visits, you say
He's refusing to go to your house if you get a dog

You booked a night in a hotel
He'll be fine once he's there, you said
Meltdown City

You made a cake and gave him a slice
The slice wasn't perfect and he wouldn't eat it
You then gave him another slice but cut it up for him
He'll eat that, you said
He didn’t eat it, you'd cut it up
You just don't understand

It’s the small things that make huge differences.

– Anonymous

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If You Meet Me

You: Hello Molly…
Me: waving my arms, cuddles and kisses Aarghhh
"Come here and give me a cuddle! I want to play now, now, now!"

You: What would you like to do, Molly?
Me: patting chest, waving arms, indicating or dragging you to play
"Now, now, now, I need to play now!"

Me: patting on the chest Ah, ah ah
"I need to be here, here, and here, and here, now!"

Me: dragging you with me to meet everyone
"Oh hello, oh hello to you, too, and you, and you, and you"

Me: finding and chewing a toy duck
"Ooo, a duck! Quick, I must – no, NEED – that now! Quick, chew it, make it mine!"

Me: pulling you with me
"Let's go for an adventure into where I'm not allowed to go… Ooo, office! Let's clear the desk of everything, right now! Crash, bang, wallop! Who did that? Not me… Let's try the art room. Ooo, paint! Let's eat that and make rainbow poop! Let's wash the tables, chairs, floor, walls and myself in all the colours I can."

Mum: Molly, it's leaving time…
Me: protesting and taking residence on the floor
"Uh no, no no, no and no. I’m not leaving, so no!"

– Molly is non-verbal. She has microcephaly, hypertonia and severe development delay. This translation of her conversation making friends was written by her mum, Kellie.