As the parent of a vulnerable child, I’m scared for her, and for myself

May 4, 2020 by

Coronavirus makes it unsafe for my daughter to go to school, but the strain of caring for her at home is overwhelming, says Beverley Cohen

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Every vulnerable child has access to school during lockdown, right?

Our daughter, Liora Sarnaik, age 13, has an education and health care plan and a social worker, so meets the government’s definition of vulnerable and should have been able to go to school when lockdown started. I actually thought I might be one of those people who work from home, learn how to bake a cake, sort through the attic, have Zoom chats. But Liora hasn’t been at school.

Today there are only 15 children attending Liora’s excellent special needs school, Downs View in Brighton. Normally there are more than 100. Liora is not one of the 15: these are all children who live in residential care because their families have not been able to cope with caring for them. So they don’t have a choice about going to school.

Liora has three life-long conditions: uncontrolled epilepsy, a chronic kidney condition and autism. She can’t speak and she’s doubly incontinent. She’s beautiful, upbeat and humorous and her father, Rahul, and I adore her.

I desperately want to send her to school because without it she is home full-time and needs someone to care for her, all day every day, from the moment she gets up to the moment she sleeps, no weekends off. My last day off was before lockdown.

So why are we not sending her to school? On the first day of the lockdown, I spoke to a school staff member on the phone. “It’s up to you, of course, but I wouldn’t send her,” he said. “I can’t see how it can be safe.”

Many of the pupils, like Liora, don’t have language, they can’t speak or understand more than simple words such as food, drink, toilet. The majority have saliva issues; they dribble and wipe their mouths on any available person or surface. They don’t know how to wipe their noses, they are not able to wash their hands without help – and often resist it. They don’t know how to social distance, they don’t know anything about the pandemic. Many are also violent to parents and teachers and they are not able to stop biting, punching and kicking. Liora is not violent to others, but she is to herself, banging her own head with her fists when in pain or frustrated. She needs close physical contact at all times to be cared for properly.

Liora’s headteacher, Adrian Carver, says if he lets more children into school, they could simply die of contracting coronavirus. These are his words, not mine, because it will be impossible to keep them – and his staff – safe. He’s having to turn desperate parents away, which he hates doing, as he knows how hard it is for us.

Source: As the parent of a vulnerable child, I’m scared for her, and for myself | Beverley Cohen | Opinion | The Guardian

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