I could lose my child if Covid closes her special needs school again
Like most parents, I love my child with all my heart. Unlike most parents, if there’s a Covid-19 case at her school and it has to close again, I could lose her.
My daughter Liora Sangeeta is 14, she has complex needs: epilepsy that medication can’t control, a chronic kidney condition and autism. Liora can’t speak and she’s doubly incontinent. She also has a habit of hitting her own head with her fists, as hard as she can, raising big bumps and sometimes blood. She’s under the care of Great Ormond Street hospital and needs medication 15 times per day.
Tempered by school and respite, it’s possible for Liora to live at home, where she is happy and adored, where her family experiences precious moments of fun and joy with her. She sleeps well in her bedroom surrounded by pictures and toys she’s had all her life, the pink blanket her cousin gave her when she was a baby, the drawing her dad did of her before she was born, the tiger picture from her amma (grandma) in India. Even though Liora has no understanding of the significance of these, she is a secure, confident little girl, surrounded by love.
Liora went back to school three weeks ago, two days a week. I didn’t home school during lockdown and neither did most special needs parents I know. That’s a luxury we are not able to even consider. Our goal was survival, getting through the day, the days. Since March, weekends and weekdays had merged into one.
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Liora is thrilled to be back at school. This morning she sat in the taxi she knows will take her to school, wiggling her arms and legs with expressive joy, her toothy grin enormous. She wasn’t banging her head, she looked happy and stimulated. She loves routine, school defines her.
“You must be celebrating,” my friends with “mainstream” kids say on WhatsApp. “Partying, dancing, eh?”
I’m not exactly celebrating, I’m not exactly anything. I’m gasping.
“If there’s one single case at her school, if the school closes, we can’t do it again,” I have told my new social worker. Liora’s dad, Rahul, broached this subject before she went back to school, I was shocked but had to agree with him.
“I hear that,” said our new social worker. She’s in a tricky position, the council is broke. We currently have two nights a week respite with a beautiful foster family, but without school that leaves five full days and nights of care, sometimes starting at dawn, no breaks for good behaviour during the day and sometimes a wet bed at night. Our new social worker can’t promise more respite, she can’t promise anything. But she also agrees with me, she knows that I can’t cope. She must be worried, residential care costs a serious bomb.
“We’ll have a team meeting soon and get some measures in place, in case it gets bad,” she said.
Measures can only mean that Liora will be taken away – I will be another parent who finally cracks under the weight of caring for her disabled child. But I don’t want that. My main ambition has always been motherhood, Liora is the centre of my life.
I want more support, more focus on appropriate packages of care for families like mine, I want professional carers to earn proper wages for their specialist, skilled work so they don’t leave us. I want more attention from Boris Johnson’s government, I want a minister for disability as the Disabled Children’s Partnership is calling for, I want families like mine to stay together, children to stay where they are, happy and loved, parents to be saved from heartbreak.
I want my child at home, where she should be.
What would families with “mainstream” kids be saying, if there was a risk of their children being taken away, due to a member of staff or a pupil at school catching the coronavirus and causing the school to temporarily close?
Are families like mine less important?
• Beverley Cohen is a carer for her daughter and a media manager
