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14 December 2017

Jonathon and Allison's Story

Jonathon is 9 years old and is severely autistic. He needs to use a Changing Places toilet when he is out and about, so he can lie down on a changing bench and be safely changed.

Jon and Allison

But the lack of Changing Places toilets in public places means that going out is a stressful experience for him and his family.

"Jonathon tends to put whatever he picks up off the floor in his mouth,’ explains his mum Allison. ‘I worry constantly about him becoming ill when I am forced to change him on a dirty toilet floor. I feel so grubby and want to cry as I kneel to change him."

Providing Changing Places toilets in public places, like city centres, shopping centres and leisure complexes would dramatically improve the lives of Allison and Jonathon.

"We’re square pegs in a round hole just now, feeling unwanted in society. I want Jonathon to be able to go out and be part of his community. A clean, safe and spacious Changing Places toilet would just make all the difference – giving us both dignity and saving my poor back from crawling on those dirty toilet floors."

Full story

Jonathon is 9 years old. He loves bouncing on his trampoline, going swimming and Disney videos and characters. While very physically active, Jonathon is severely autistic with no speech and limited understanding, and wears nappies to manage his continence. He needs to use a Changing Places toilet when he is out and about, so he can lie down on a changing bench and be safely changed.

But the lack of Changing Places toilets in public places means that going out is a stressful experience for him and his family.

"Jon always seems to need changing soon after we have left the house’", says his mum Allison, who cares for Jonathon full time. "We only go out for a couple of hours at a time, having to choose between returning home or changing Jon on a dirty toilet floor. I feel like a prisoner."

Because Jonathon is very active and is unaware of danger, a lack of appropriate changing facilities presents a range of problems.

"Caring for a disabled child with a high activity level and lots of strength presents a lot of challenges – existing ‘accessible’ toilets are the final indignity."

The family have tried to find suitable public facilities to change Jonathon but have never found any that meet their needs.

"We have simply never had a positive experience. Once when Jonathon desperately needed to be changed we tried to use a mother and baby unit but were refused entry. Jonathon’s nappy was clearly leaking but we were told to walk to the so called ‘mobility unit’ – half a mile away! I went to the ladies instead and was glared at for bringing in a boy."

"Existing facilities are just not suitable for our needs,’ continues Allison, ‘and as Jon grows bigger and stronger the challenges we face are only going to increase. I’m dreading when he’s older and is a young man."

And it’s not just changing Jonathon that is difficult – Allison also finds it incredibly hard to keep Jon safe when she wants to use the toilet herself.

"I can’t leave Jonathon on his own for a moment because he is likely to run off, so have to keep him with me when I want to use the loo. A privacy screen or curtain in the toilet would give me a little privacy, and it would also be useful if there were a second lock high on the door to keep him safely in the room."

Providing Changing Places toilets in public places, like city centres, shopping centres and leisure complexes would dramatically improve the lives of Allison and Jonathon, and the many thousands of other families like them in the UK.

"If this wonderful idea would just be accepted by as many places as possible it would open up a whole new world for me and my son," says Allison.

"We’re square pegs in a round hole just now, feeling unwanted in society. I want Jonathon to be able to go out and be part of his community. A clean, safe and spacious Changing Places toilet would just make all the difference – giving us both dignity and saving my poor back from crawling on those dirty toilet floors." 
 


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