OUR UNTOLD STORIES – The World My Child Sees

25 May 2016

Simon is dad to Grace, 6, who has ASD, ADHD, hyperacusis and sensory disorders. When Simon is sketching Grace will often join him. Drawing gives them time together and gives Grace something to focus on, which helps her mind relax.

These Our Untold Stories are reflections on life by parents of children with additional needs, through the eyes of their children…

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

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, 17, 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.

Before and After

Before, for my boy, withdrawn, pale, bags under his eyes, getting no sleep, everything was negative. There were no positives. He was self-harming. He refused to leave the house. His mind was full of,

How can you do this me?
You’re in control of my life, how can you do this to me?
It’s the kids, they don’t listen; they just need to learn to shut up.
What are you doing? Where are you going?
What if you get sick, I won’t be there.
Don’t go in the car with Daddy, if you crash you’ll both die.

And now, away from school, there’s a twinkle in his eyes, he smiles, he doesn’t self-harm, he’s willing to go out and try new things, his sense of humour is back and his anxiety levels have clearly reduced. He interacts a lot more with other people, he’ll even strike up conversations and ask for things even if he doesn’t know the person. He’s happy.

– Anonymous

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

My Life with Leigha

Me: What would you like for your birthday?
Leigha: Umm, a cow
Me: Okay, what would you like that Mummy can buy?
Leigha: Okay, I’ll have a horse
*
Me: Leigha, unfortunately your pet shark died last night
Leigha: It’s okay Mummy, Daddy will look after him in the sky now
*
Nanny: Look, Leigha! There’s a kite
Leigha: No, Nanny, that’s a bird
*
Leigha: Nanny, the dog won’t play
Nanny: Call the dog, Leigha
Leigha: Leigha! Leigha!
Nanny: No, her name’s ‘Lady’
Me: But you told her to call the dog ‘Leigha’!
*
Me: Quick, Leigha, jump in the lift
Leigha proceeded to jump between the floors until the lift stopped
*
On a visit to my Nan and Grandad’s grave, which Leigha calls their ‘garden’
Leigha: Mummy, do all these gardens belong to other people?
Me: Yes, Leigha, that’s right
Leigha: Is one of these Daddy’s garden?
Me: No darling, Daddy’s garden is at our house
Daddy doesn’t have a grave at present; we have a tree at home for him

– Leigha, 4, has suspected autism. She takes things very literally and speaks her mind frankly.

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

For support for families with special needs children, you may like to visit swingsandsmiles.co.uk or call 01635 285 170