Things parents of children with special needs knew before coronavirus

I am watching the world around me confront a new reality brought by the COVID-19 pandemic. Every life lost to this virus is a tragedy and the scale of loss is devastating to the entire global community. I realise the worldwide severity of this illness and I, in no way, would or could ever rationalise or minimise that devastation.  Today, on the 22nd of May, the number of lives lost is 333,000 with over 5.1 million people found to be infected.[1] One-third of a million families grieving a loss due to COVID-19.

I am watching this unfold in Scotland as a parent of one of the one billion people[2] in the world with a disability (and as a big sister to another). I have seen my life change dramatically as a result of steps our Governments have taken to limit the loss of lives and prevent overwhelming our NHS. For one billion people who were already coping with the challenges disability created in their everyday lives and their families, things have become even harder. Until this point, I have been fortunate enough not to have anyone in my immediate family become ill or lose their life to coronavirus. That is the one thing I focus on when people ask how my family is. Commenting anything other than “well” can feel indulgent. Despite the fact we are without nursery, therapies and clinics, not to mention the circle of supportive family and friends we usually have around us, it does not occur to me to complain. It’s no one’s ‘fault’ and we work around it.

I have observed how the people around me, and the wider public have behaved through the emergence of the virus and the lockdown. I have seen my own thoughts and behaviours metamorphise as we move through the weeks. I have been shocked, saddened, angry, moved, thrilled, delighted, bored, frightened, grateful and exhausted. Like many carers, feeling all of these things in a week is not that unusual.

The way my son’s situation unfolded and continues to evolve has taught me so much about resilience. He is my teacher. He has a titan heart all wrapped up as a funny, charming and affectionate toddler. I continue to build my own resilience to be the best possible mum and carer. That’s not say I don’t feel things or have days where I struggle, but I feel a strength that comes from experience, rituals and faith. I see the same strength in other family carers. There are many things about isolation, illness and inconvenience that we already knew.

1. The NHS is brilliant, but is in critical condition.

With every year that passes I notice staff and resources become more stretched. The commitment and expertise of almost all staff are without question but there are too few of them and they don’t get the time or resources they need to give the care they want. Staff from overseas are such an important part of the workforce.

2. The so-called Third Sector does essential work that we cannot live without.

Charities are increasingly stepping in to pick up the essential things our family needs – hospital accommodation away from home, pastoral care and navigating the systems that are supposed to help us.

3. Following the rules does not guarantee a positive outcome.

The ‘unfairness’ of how the virus ‘does not discriminate’ seems pretty obvious to me. Disability doesn’t either. What I do appreciate is that pandemics, like disability, become even worse for those from poor socio-economic backgrounds. Those that are already struggling the most, will be the worst affected.

4. You can’t plan too far ahead.

For three years I have been learning not to look too far ahead. At first, I was told to take an hour at a time, and then a day. The times where I feel myself getting upset is when I try and think about what life will be like years from now. During the lockdown, I don’t let myself get beyond a week. There are too many uncertainties and events beyond your control. Even before lockdown, I would make plans for the theatre, nights out and holidays never fully expecting that they would happen.

5. Take self-care seriously.

I don’t mess about with my mental and physical health. There is probably a whole blog in that by itself. It’s the fundamentals. Plenty of water. Not skipping meals. Staying fit and strong. Knowing exercises you can do in a gym, in a park, at home or in hospital accommodation to boost your circulation and mood. Reflecting on what you are grateful for and finding a way to switch off. Making these things a habit is as important as washing your hands.

6. Isolation is hard.

Physical and social isolation has been the hardest part of lockdown for many. Wheelchairs can cause isolation. As can lack of support to get people out and about. Public spaces and events are not accessible to people with a whole range of requirements. Whether it’s ramps, accessible play parks or quiet hours… we can all give more consideration to how included the whole community are. Now we all understand more about feeling trapped.

7. The arts are important.

Music, art, stories, drama and sensory experiences are vital to helping us make sense of the world around us. The areas where budgets are always cut first are the things that bring us joy and help us make connections. These are the things my child enjoys and they are the things we have all turned to in lockdown. Books, Netflix, music and paying attention to the natural world is what has brought life into our days.

8. People are mostly good and we shouldn’t judge harshly.

We should be more aware than ever that the value people bring to our world bears little relation to their salaries. Many lives have been saved by people not fortunate enough to earn even a living wage. Most of us have contributed by staying out of the way and helping where we can. I have always been touched by how much people truly care.

What has been harder to see is how judgemental people can be. The rules of lockdown are hard. They are the most restrictive conditions most of have every lived under and our lives are a series of connections and interactions. Sadness and frustration have led to people becoming very concerned with the actions of others. Yes, we can be concerned with not catching the virus ourselves and worrying about the impact on our community. But often, the scrutiny of others takes an “it’s not fair” tone. Assumptions are made about how seriously others are taking lockdown and how that reflects on their worth as a human.

I learned in the time that I spent in children’s wards, that behind the situation in front of you might be years of history, weeks of no sleep, chaotic circumstances and no end of reasons why a parent might be behaving differently from you. I often find myself making decisions that are not just about lockdown and coronavirus but take into account my son’s medical and developmental needs, my emotional needs and my experience of weeks of uncertainty. With complex needs comes difficult decisions and you cannot truly understand what others are going through. That person who goes to the shops every day might just need the trip, small ritual and chat with the cashier as the only interaction they get all day. It may not be correct, but it is entirely human and they are not single-handedly causing a global pandemic. While we criticise each other, the leaders with responsibility for our nation’s health are not being challenged for their decisions.

9. Things get harder, the closer you get to the end.

This part might surprise you. Yesterday I felt some hope as the route-map out of lockdown was unveiled. The beginning of the beginning of the end was in sight. I was looking forward to seeing my parents, sisters and nieces. When I woke up this morning, everything felt a bit bleak again. Nothing would be different about the day and the things I really wanted to do seemed a long way off. It reminded me of moving through the stages of having a premature baby prepare to leave the hospital, from intensive care, to HDU, to special care, to transition care… each step was a reason to be happy but also a reminder of the long road ahead. The last couple of weeks were amongst the hardest. It served as a note of caution not to get ahead of myself and return to my old friend, the mantra… one day at a time, and when that’s too hard, one hour.

[1]   https://en.wikipedia.org/wiki/Template:COVID-19_pandemic_data [Accessed 22/05/2020]

[2]   https://www.worldbank.org/en/topic/disability [Accessed 22/05/2020]

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