OPINION
17/03/2020 06:00 GMT | Updated 17/03/2020 11:54 GMT

My Daughter Has Special Needs. I’m Terrified By The Possibility Of School Closures

The prospect of having our children at home during the coronavirus outbreak without the professional support they need is almost too much to bear, writes Sam Carlisle

Sam Carlisle
Sam Carlisle with her daughter Elvi

That sound you hear at the beginning of every September is the sigh of relief from exhausted parents sending their kids back to school after the summer holidays.

The thud that echoes across the country at the same time is the sound of parents with disabled children falling to their knees, tested to their very limit by caring for their kids 24 hours a day for six weeks.

The threat of school closures because of coronavirus is difficult for any mum, dad or carer. How can we keep working without childcare? How will we keep them amused without driving ourselves insane? How will we feed them if we can’t earn money and Tesco has run out of pasta

For families of the 1.1m disabled children in Britain, the thought of school closures is terrifying.

Yes, we have to keep our kids safe, particularly those with underlying medical needs. But the prospect of having our children at home without the professional support from carers they need and we have fought for is almost too much to bear.

Sonny, my able-bodied 13-year-old son is practically licking handrails on buses as he’s so excited about the thought of weeks off his mainstream school. If that happens, we will deal with it. Our main focus will be to stop him catching the bug and trying to prevent him getting RSI from over use of the Xbox controls.

My daughter Elvi is 18. She has a rare genetic disorder, RCDP, which means she has the hormones and mood swings of a teenager but the learning age and tantrums of a two year old. 

She is completely dependent on me. She needs to be washed, dressed and fed by me, she still uses nappies which I have to change. She bum shuffles around the house: I have to lift her down from chairs and up into her wheelchair. We suspect she has autism which in her case means she melts down with rage because she doesn’t understand why she can’t be taken for a walk at 4am.

Elvi regularly sleeps just three hours a night without ever napping during the day. When she is awake at 3am she screams the house down until I get up and entertain her. Looking after the daughter I love so much is shattering. There is no emotional respite.

I’m one of the lucky ones. My ex-husband, Elvi’s dad, is a brilliant father and her stepdad steps up to help out. I can’t imagine how hard this is for single parents.

For these reasons we have fought for years to build up a package of care that enables her to live the best life she can while we stay sane. Since September Elvi has boarded at her special needs school three nights a week enabling the rest of us to sleep. We have a fabulous carer, Dawn, who gives me a hand with Elvi for eight hours a week at home.

It takes more than one person to look after disabled kids – it often takes a team.

But if Elvi’s school closes and she is home with me for weeks or even months without support, I do not know how I will manage.

Charity forums and SEN parents’ WhatsApp groups are prickling with fear. We are told children are less prone to contracting Covid-19 but our kids are vulnerable to infections, or tube fed, or have respiratory conditions. Elvi’s head has already, rightly, warned us to keep medically fragile pupils away from school.

It takes more than one person to look after disabled kids – it often takes a team. Our schools are as much medical care centres as educators, with full-time nurses and skilled therapists on staff. Without these how will we keep our children safe?

There is little chance of help at home because there is a critical shortage of professional carers in the UK – 120,000 vacancies. When care minister Helen Whately, claimed that care providers could arrange ‘mutual support’ and make use of untrained ‘volunteers’, parents of disabled children laughed at the suggestion. We know the reality of the care system even in the minister does not.

What if I start showing symptoms of the virus? Who will look after Elvi?

The messages from government never mention our children or our families. 

Even before anyone had heard the C-word we had felt isolated, ignored and angry at lack of support from local authorities and central government.

We are more likely to be on low incomes because the mountain of paperwork and hospital appointments that build up with a complex child makes us unemployable.

I have been working with the Disabled Children’s Partnership, an umbrella group of more than 70 disability and children’s charities, on their Give It Back campaign. This is asking the government to return £434m owing in social care funding to our families to decrease isolation, give support and equipment where it is needed and keep families together.

If our schools close, and the little support that we have is withdrawn, I worry many will not make it through.