Living with a severely disabled child

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Sophie's battle - from Together Magazine, issue 4

Unsurprisingly, Sophie has met many parents of disabled children - mostly mothers - who have little spare energy for campaigning. And Sophie’s own routine can be grinding: Rachel is in a wheelchair and Sophie carries her upstairs each night and lifts her into and out of the bath. Mother and daughter share a bedroom.

‘Councillor’s have asked me why parents of children with severe disabilities don’t get together and set up their own holiday clubs’, Sophie says. ‘Have they any idea what some of these mothers are going through - with the lifting, the frequent washing, the transportation and perhaps having to be up a lot during the night? Often they are too exhausted to do anything else.’

She’d like, she says, to have some politicians take a severely disabled child out for the day:

‘They could see what the reaction is out there. It is overwhelmingly painful. People make comments, ignore you, look through you, through your child, look down at the floor with embarrassment. People are not accommodating or kind. And because for some families it becomes too difficult – they start to rotate the tasks that involve going out, like shopping or posting a letter, without the disabled child being present and they become more and more socially excluded.’

For disabled children and their parents, equitable childcare is crucial, she adds, in tackling – or at least mitigating – that social exclusion. Sadly, places at the full-time, specialist childcare pilot in Kingston were oversubscribed this summer and the scheme was only set up to run for three weeks of the break. Is there a chance that the club will run for longer with more places in future?: ‘We hope’, Sophie says, ‘We hope’.

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