COVID-19 and Down syndrome: the experience of one, among many

By Solitaire Henare, UpsideDowns Outreach Coordinator

COVID-19: the international virus gradually making its way around the world and into our local communities and in our homes like the daily news. The daily news announcements warn us to keep our distance, avoid touching our face, and to wash our hands for 20 seconds. The public messages tell us not to give hand-shakes, hugs or hongi. They encourage us to avoid physical contact, keep a distance of two metres between people, and to practice the 'East Coast wave' instead.

Then, last week, the Government notifies us that there will be a national lock down. They tell us that within 48 hours everyone has to stay home, and stay in their 'household bubble'. Everyone is affected in some way, whether it is by changing care-giving arrangements (for young and old), education, employment, housing, or financial commitments. People's concern and anxiety increases as they have to make hasty arrangements about where they will be staying and, in some cases, how to get there.

Amongst my concerns is the thought that I have to quickly think of a way to explain the lockdown and its reason and its length in a calm and simple way to my brother who has Down syndrome. He will have his 40th birthday during the lockdown period and I'm suddenly relieved and thankful that he will only think about his birthday if someone tells him, because he has no sense of time, or days, or dates. His birthday and Christmas are the two occasions in the year that he gets really excited about because for him, there's still hope that he might finally get the laptop that he asks to be put at the top of his 'wish list' each year, for the last 10 years, along with some colouring-in books, felts, a packet of cards, and a pair of 'sunnies'. Such is the 'age level' and understanding of my brother.

My husband and I have taken on the responsibility of looking after the welfare and interests of my younger brother for over 21 years, since he was 18 years old. My parents became ill (and eventually passed away) and so we become his ‘surrogate parents'. He was 18 when he initially came to live with us before he went flatting. However, even whilst flatting, he would spend every weekend with us and so he knows that we love him completely and unconditionally, and he relies on and trusts us implicitly to keep him safe.

A person who has Down syndrome is developmentally delayed; the spectrum of this delay has a wide range, from very mild to very severe, however that person will continue to learn. Unfortunately, my brother’s ability to learn has been seriously impacted and further delayed by significant and prolonged trauma whilst in care, stunting both his cognitive and emotional development. Therefore, his comprehension and understanding is not great and he needs constant reminding and reassurance. He receives this at home.

Given these uncertain times and with no cure in immediate sight, people are naturally scared. However, I know that in talking to my brother about COVI-19 and the lockdown, I will explain it in a simple way to make sense, although I won't know for sure. I just know that for my brother’s sake I have to suppress my own fear and take care to avoid projecting my emotions onto him to avoid him becoming anxious. I have to repeat the message in a reassuring, matter-of-fact tone so that he doesn't become alarmed or worried, even when I am. But the additional challenge in doing that is knowing that he won't be coming home to stay with us during the four weeks because my husband is part of the essential services workforce; he'll be coming and going from home and I can't afford to expose my brother to possible contamination because my brother also has multiple health issues. My brother will instead be staying in a small, stand-alone unit with a disability provider, with one-on-one support.

So I did what I could do and surrounded my brother with four weeks’ supply of colouring-in books, felts, pens, playing cards, a DVD player and his favourite DVD's, an old laptop with children's' PC games, a portable keyboard, and a ukelele.

I explained to him that the Prime Minister said that everyone in the country has to stay at home because of the 'corona virus flu'; I chose to add the term 'flu' because my brother understands that having the flu means that people are sick and that we have to stay away from them so that we don't get sick as well. I explained that:

·       My husband and I have to stay at our home;

·       Our brothers and sisters have to stay at their own homes;

·       Our nieces and nephews have to stay at their own homes;

·       In fact, EVERYONE in New Zealand has to stay at home for a long time because the Prime Minister doesn't want lots of people to get the 'corona virus flu' because then too many people might get too sick and go to hospital and then the hospitals might become too full.

I talked to him about what a long time meant. I reminded him that he had had to stay in hospital for a long, long time after he had an operation. I repeated these messages and then asked him to tell me what was going to happen. He replied, "Stay here, for a long time. Now can I play on the laptop?"

My heart sank because I knew that he didn't really understand. However, I also knew that he had experienced a number of upheavals in the weeks before the Prime Ministers announcement, and was already unsettled. I recognised that as 'my brother's keeper' it was necessary that I 'stay calm and carry on' by reminding myself that he's safe, and that as long as he's pre-occupied with daily fun activities, and as long as he  knows that we're only a phone call away and that we're going to organise to Skype him, and that he's chosen a 20-second hand-washing song ('The Beverley Hillbillies'), then I guess that I just have to accept that I've done as much as I can do to educate, protect, and support my brother through COVID-19.