“I’m scared”: The impossible choices made by parents in a pandemic
At the start of the new school year, parents of clinically vulnerable children face a no-win situation. We spoke to one mum about her family's experiences as Covid restrictions are removed.
The start of the new school year is always an anxious time for children and parents, but this year’s new term came with extra cause for concern. And while 70% of parents are concerned that their children will catch Covid in school, many families with members who are clinically vulnerable (CV) or clinically extremely vulnerable (CEV) are particularly worried.
Whether the CV or CEV person in a family is the child themselves or someone they live with, going back to schools is terrifying for many, especially as schools no longer need to take actions to mitigate the risk of Covid through bubbles or social distancing. Parents find themselves in a no-win situation: either they send their children back to school and risk infection, or they keep the children at home, risk the ire of authorities and can’t return to work themselves.
Marianne* is one such parent. With a clinically vulnerable daughter and a clinically extremely vulnerable son, while also being clinically vulnerable herself, the last 18 months have been challenging.
Marianne’s daughter, Amy*, is 12. With type one diabetes, autism spectrum disorder (ASD) and coeliac disease, Amy is mature and sensitive for her age. Marianne’s son, Jake*, is 11 years old. He has Down’s Syndrome and was attending a mainstream school before the pandemic. Marianne was under the impression that he was very well supported but, on starting to homeschool him last March, found that his learning had regressed.
At the start of the first lockdown, Marianne quickly realised she was on her own. This was not new to her as a single parent, but the lack of appropriate work arriving from Jake’s school meant she had to find her own resources, including an app that helps non-verbal children to communicate. She started working through the Reception curriculum with her son, who had gone from knowing 200 words to only knowing 16. She says they heard nothing from Jake’s occupational therapist or speech and language therapist.
Amy and Jake’s dad could not get involved. He doesn’t live close by, doesn’t drive and nobody wanted to risk public transport at the height of the pandemic. Nevertheless, Marianne grew in confidence and enjoyed the time at home with her children.
It was hard but it was also a very positive time. Both children made huge amounts of progress and we've built loads of really happy memories.
Cocooned at home with both children and having hospital appointments and social engagements over the phone and online, Marianne felt safe. While the first six weeks were spent “finding her feet”, with one-to-one attention, the children thrived and Jake re-learned some of the knowledge he had lost.
Amy missed her final year at primary school and Jake missed his friends, but the three are close and they felt safer away from the world. But as this year’s six-week holiday drew to an end and September approached, some difficult decisions had to be made.
Jake’s CEV status was removed and it was thought that he would have to return to school.
I'd finally got an education for my child that was going to suit him. And the thought of him having to go back to school in with 30-odd children… At that point, I was on the verge of de-registering him. I would have taken him out if I'd had to. He was never going back into a class of 30 children in a mainstream school where they're not vaccinated.
With the agreement of the school, Jake’s consultant at Sheffield Children’s Hospital signed him off school until he is vaccinated when he turns 12. After escalating a series of complaints with the school and local authorities, Marianne has now secured a tutor to teach Jake at home and he is going to school twice a week to play outside with his friends.
“I'm the lucky one”, Marianne says comparing herself to other parents in a similar position, “because I managed to find an escape loop and get my son protected, which in turn protects me.”
With Amy, things are a bit more complicated. Her ASD means she is less likely to cope in a mainstream secondary school, so she is attending a private school and risked losing her place if she did not return to classes.
Last year, both Marianne and Amy were reassured by the measures the school was taking to secure pupils and staff against the risk of Covid infection. Small class sizes, one-way systems and strict rules about social distancing meant there were very few cases, but those rules were abandoned this September.
She's gone back this year, and I'm actually more anxious this year than ever”, Marianne told me, “because the mitigations have gone. It sets her anxiety through the roof. She's terrified of getting Long Covid.
She came home yesterday and said, ‘I'm really struggling because everyone's in the corridor, they’re all jostling around now and the one-way systems, they've all gone.’ And obviously her ASD kicked in and made it even more anxious for her.
The pair are doing what they can. Amy is driven to school rather than taking the bus, she has received her first dose of the vaccine and she wears a mask whenever she feels at risk.
But Amy’s fears about Long Covid, as well as Marianne’s fears that Amy will catch the virus and bring it home, are taking their toll.
“I'm pretty scared, to be honest, because the kids both need me. They have a dad, but it's an uneasy relationship with my daughter. I'm not convinced he can care for them like I do, or educate them. I think it would be exceedingly difficult for him to come and take over.”
Marianne is in tears as she tells me that she is frightened that she will die and leave her children alone. She has pleaded with others to look after them if the worst happens.
The uncertainty – for example, if Amy was identified as a close contact of somebody with the infection and needing to suddenly take time off – adds to her anxiety. That happened last year and the sudden change in routine triggered a “spiral down a dark path” for Amy, severe enough to warrant a referral to mental health services.
Both my children absolutely thrived being at home; their mental health had never been so good, their physical health had never been so good, academically they both accelerated. And we had just had lovely, lovely family time. There was nothing negative about being at home.
I would love to pull Amy out of school. If she was at the mainstream school, I have no doubt she’d be at home, absolutely none at all, but because of the situation I’m in I can't take her out of school. She wouldn't cope in a mainstream school. She wouldn’t cope with big classes with hundreds of children.
Yet Marianne acknowledges that she is fortunate compared to many of her peers. Furlough meant she could homeschool her children and Jake having a tutor means she can now start to return to her business. Amy’s school is more suited to her needs than a mainstream school would be and risks are being minimised by the family whenever possible. Many parents simply do not have these options.
Looking ahead into the uncertainty of the next few months and another Covid winter, however, Marianne has one overriding emotion: “I'm scared. I'll be honest, I'm scared. I'm scared.”
*Not their real names
