Blog Coronavirus

By SB_FASD

I don’t consider myself someone who overreacts to things medical. I have a (very) little bit of basic knowledge about how diseases can spread – through some indirect work a long time ago trying to understand biological weapons. I am not alarmist when a child spikes a temperature. I rarely go to the doctor’s myself.

But this one, this one has me on high alert. And it’s not really good enough to tell me ‘not to worry.’ In fact, it’s a little insulting.

For some families, like mine, this is a scary time. I’m not being alarmist. I am being honest. Perhaps even hypervigilant.

“Hypervigilance,” according to Healthline, “is a state of increased alertness. If you’re in a state of hypervigilance, you’re extremely sensitive to your surroundings. It can make you feel like you’re alert to any hidden dangers, whether from other people or the environment. Often, though, these dangers are not real.”

Sure, maybe it will turn out these dangers aren’t real. I’d welcome it if COVID-19 ended up being one big fizzle here in soggy post-winter England. But it doesn’t mean I am wrong as parent to a child with additional needs to try to prepare mentally and logistically for a worst-case scenario.

Our son with Fetal Alcohol Spectrum Disorder (FASD) goes to a specialist school in a county where some of the UK’s first coronavirus cases have been located. He was surprised when he came home one day and I helped him wash his hands. I told him that now every time he comes home we will wash hands. “Why?” he asked. I said, “Just to keep us healthy. Washing hands can help us prevent coronavirus.” The look on his face stopped me in my tracks. He had thought coronavirus was only overseas. Our guy who usually tracks every natural disaster and who has only recently calmed a bit about fears of flooding during this stormy English winter now has a new worry added. I was truly sorry to contribute to his anxieties, but we have to help our loved ones understand how to stay safe and empowered to do something to protect themselves. (I love, love, love this handwashing rap video by The Purple All Stars – a group of Hertfordshire residents with additional needs who promote health and wellbeing messages through performing arts.)

In addition to the challenges of trying to keep a child with additional needs safe and healthy, there are others in my family who are vulnerable. Our eldest son has Chronic Fatigue Syndrome. He is just starting to become healthier after too many years of really ill health. I would hate to see that progress reversed. My husband has asthma and diabetes. My mother-in-law, the family matriarch, is 87. My sister-in-law has gone through a really rough time with health issues. There are people in my immediate family who are part of the vulnerable population who are most at risk with coronavirus. So yes, I am concerned.

I worry that while commuting into London I might catch something and introduce it into my small and at-risk family. The last time I was on the tube, the guy sitting next to me literally kept blowing his nose into his hands and wiping it on the seat. I am not exaggerating. It happened. The train was too packed for me to get up and move. I tried not breathing, but that only works for so long. And you’ll forgive me if I am less than convinced that our local NHS hospitals, notoriously struggling and understaffed due to budget cuts, will be able to cope with whatever new demands might be down the road.

Yes, I get that we don’t need to overreact. I understand this virus doesn’t affect kids very much (though they can transmit it). I know coronavirus can be mild for most. But ‘most’ doesn’t include everyone. And I am not wrong to be concerned that my own family is at risk.

I had wanted to do a big home delivery order earlier this week. I wanted to be sure we have a supply of hand soap, tissues, paracetamol, Dettol, pasta, Haribo. You know, the staples. Just in case. My husband looked at me like I had three heads. I certainly seemed to be failing the British stiff-upper-lip test.

I am regretting I didn’t just do it. Now we hear local shops are already running out of these things. What people don’t understand is that if our youngest can’t have his Pepperami and his daily treat things can get grim. Even something as simple as having the wrong laundry detergent can make him itchy and deeply uncomfortable.

Routine and predictability are key for someone with FASD. The news of coronavirus has now thrown a huge wad of messy uncertainty smack into the midst of our finely balanced world.

And yes, I will be honest. My mind does go to the ‘what-ifs’ that are horrible to contemplate. ‘What if’ my husband (who as the one with the driving license goes most often to the shops) gets COVID-19 or other family members catch it? In our family an already horrible illness would be magnified and it would be harder to contain. Life would be hard to manage. Some of the hygiene protocols are not easy for someone with extra sensory and cognitive challenges to keep. When anxieties rise, the sensory challenges increase. Challenging behaviours can flare in the midst of other ‘crises’. It might matter more than you can imagine if we don’t have the right kind of tissues for our little guy to cough into if and when we get to that point. I honestly don’t know what I’d do if two or more of my family caught this thing while trying to juggle work and other commitments. It could be devastating.

These worries are all vague and undetermined. I am willing to accept I may be going to places in my head where I don’t need to go due to this hypervigilance. But as a special needs mum, I have honed over some hard years my ability to think ahead, to plan, to avoid problems when and where they may erupt. This is my super power. I don’t for a moment think I am alone in this.

So please, if you know a family where there is a loved one with additional needs, give them a thought before you mock those who are stocking up on hand sanitiser. You might not know what is going on in their house or what concerns they have.

The Times recently had a chart showing that only a very small proportion of people in the UK are ‘scared’ or ‘very scared’ about coronavirus. To me, that’s not really the question. One can be hypervigilant without being scared. This isn’t necessarily a choice. And it’s not necessarily wrong either.

As mum to two children who are vulnerable and wife to someone also at risk, allow me my hypervigilance in a time of national – global – uncertainty. Have compassion for my reaction. If the government can float its contingency plans to possibly shut down Parliament for the longest time in a century, at least allow me to ponder ensuring we have enough loo roll to make it through a shortage. At least let me ensure we have an extra bottle or two of our son’s favourite shampoo and detangling conditioner and maybe a well-stocked arsenal of slime ingredients should things get bad. Our lives are complicated. And this is one huge, concerning ‘unknowable’ plopped out of nowhere into our lives that depend on predictability.

Thanks everyone for reading. Stay healthy out there.

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For more information about coronavirus see the NHS coronavirus webpage. Please note, we are not trying to alarm people, we are trying to ask people to have compassion for those who might have a heightened level of concern.