The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

Just Bog Off!!!

This is Hugh.  Hugh is 6.  Hugh uses a wheelchair.
Hugh likes to go out, just like other 6 year olds.
Hugh sometimes needs to go to the toilet when he is out, just like other 6 year olds. 

This is a disabled toilet.  Hugh is disabled.

Hugh has a special key that lets him use disabled toilets.

Hugh can't use this disabled toilet though.  Hugh can't sit or stand by himself. 


Hugh wears nappies. Just like Teddy.

Where would you change Hugh?


On the floor? Just like Teddy? 


Hugh looks at Teddy on the floor.

"Bog off Mum," thinks Hugh. "I'm not lying on a toilet floor!!!"

Where would you change Hugh?



This is a baby changing facility.
Hugh is NOT a baby.  Hugh is 6!



Teddy can fit on the changing table. 
Hugh can't,  because Hugh is not a baby. 





Hugh looks at Teddy on the changing table.


"Bog off, Mum", thinks Hugh "I can't fit on that baby changing table!"

Where would you change Hugh?


In the boot of the car?  Teddy doesn't mind!
Hugh does.

Hugh thinks, "Bog off, Mum! I'm not lying in the boot of the car!"

Where would you change Hugh?



"How about here, Mum?" Thinks Hugh.

This is a Changing Places Facility.

It has a hoist to help Mum lift Hugh. He's 6 now and 6 year olds can be quite heavy.
It has a height adjustable bench to lie Hugh on. This helps Mum's back.




The changing table is big enough for Teddy.

And it's big enough for Hugh. 





Over 1/4 of a million people would benefit from a Changing Places Facility.  
Sadly there are less than 900 of them in the U.K. 
For many people an ordinary disabled toilet is not enough. 


Sign the petition here to get that changed!







Comments

  1. I love this, it really gets the message across.

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    1. Thanks Anne. Thankfully Hugh was happy enough to let me photograph him in lots of random toilets today

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  2. I love that you have written this as a social story. It makes it very powerful.

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  3. Ha ha, thanks Jo. I hadn't even thought of it like that. I'd kind of wanted to make it simple, you know like- it's simple to understand why we need these facilities- but hadn't though of it like a social story. Must be the Autism teacher coming out in me I guess!

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  4. This is ace, I don't think I can share it enough! It reads just like a story!

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  5. Disabled facilities need to chang a great deal. My daughter needs two carers, a hoist and specialised shower, bed etc. We can NEVER go on holiday because there are no facilities in decent hotels 😈😈😈😈

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    1. It's crazy in this day and age isn't it?

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  6. I love the way you've written this. The situation needs changing (scuse the pun!), there is far too much inequatlity for disabled children x

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    1. Thanks Jo don't worry about the pun (I've used one myself plenty of times in this post). And yes, it really does need changing!!!

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