Carpe Diem for families with special needs children during lockdown

7:57 pm on 5 May 2020

By David Cohen *

Opinion - The lockdown is dead. Long live the lockdown.

For parents of youngsters with special needs, it probably feels a bit like that - even at a time when most of the rest of New Zealand has emerged blinking into the slightly brighter sunlight of alert level 3.

Stay home. One of the key messages drilled into the nation during the lockdown. Photo: Unsplash / Logan Weaver

With relevant educational and respite services likely to be among the last to open their doors in the new normal, these are the households effectively booked for more of what has passed over the past seven weeks for the old normal.

The reality of the period just gone was never going to be what the meme writers on social media had in mind early on when the stay-at-home decree was blithely characterised as nothing more than having to stay on the couch and watch Netflix.

Lockdown could never have been like that for most ordinary households of any shape. But re-bingeing on old seasons of Breaking Bad is less of an option if a strapping teenager with voluble special needs is climbing up the wall and demanding attention.

Neurologically impaired kids, bless them, are hard work. Why else would there normally be so many support mechanisms in place in New Zealand - here specialised health services, there the provision of overnight care or regular home help - to make it functional?

*See all RNZ coverage of Covid-19

Autism is one of the most common conditions in this basket.

The word autism is derived from the Greek autos, meaning "self". Leo Kanner, a child psychiatrist, was the first to use it, in 1934, to identify what he had observed over a five-year period in Baltimore studying 11 children afflicted with an "extreme aloneness from the beginning of life".

What these kids shared, the Austrian-American physician saw, was an ironclad detachment from aspects of the physical world and a diamond-hard indifference to other people, along with profound difficulties with communication and imaginative play. Lives lived in permanent lockdown, you could (and I would) say.

Awareness of the condition Kanner identified has grown appreciably over recent decades. Although the day-to-day wrinkles for those living with it have sometimes been lost amid jazzy headlines and romanticised Hollywood movies like Rainman.

In Rainman, the character played by Dustin Hoffman happens to be brilliant, but most autists are as motley as the rest of us. Some are cognitively impaired and cannot speak.

Which isn't to say it's not without its parental rewards.

I look at my own 20-year-old son, for instance, and rather envy the fact he is utterly unconcerned by the daily spew of Covid-19 data that has so hypnotised everybody else. He's rather more interested in cheerfully, or anxiously, getting on with life in the here and now.

So what does the here and now mean for parents and caregivers in these situations? And how best to navigate while the relevant health agencies dither over whether to keep this aspect of their system locked down?

Stay home. Not just physically, which is a given at the moment, but in one's attentions. Psychologists tell us that living in the moment is good mental hygiene for anyone, but in navigating the locked-down life with challenged youngsters it's essential.

Carpe diem. Live for the moment - but always remembering, as musical hipster John Darnielle remarked in an interview with The Atlantic this week - the ancient inspirational cliché is often taken to mean live to the fullest when it actually means live to the best of your ability. That's a useful distinction in the special needs realm.

Practice social distancing. Which is to say, in this case, social media - and, really, most media of any kind. The news business traditionally exists to entertain, inform and educate - but in respect of the current pandemic one could be forgiven for thinking it's also there to scare people silly.

Even the best-informed experts wheeled out for interviews right now seem hopelessly at odds over the new virus's true origins, its trajectory, whether (or to what degree) it exists on surfaces, fabrics, in the air and even in water. And how many different strains of the bug are currently in global circulation anyway? Are the Swedish health authorities visionaries or bonkers? Nobody seems to know.

The stress that impels many to try to get on top of these various narratives often morphs into a kind of anxiety that does little to keep any household, let alone one with special needs, ticking.

Much better to ration one's media reading time, confining it to just a few trusted news outlets along with a few of the more reputable academic sites.

Wash your hands. And your mind, too. In addition to the opportunities to take those with special needs on some interesting walks at the moment, there's a heck of a lot of sumptuous music and books out there to be enjoyed. Just try to avoid the stuff about plagues.

Great food and drink helps, too, but it's the soul food (along with the right public policies) that counts for the most.

* David Cohen is the author of A Perfect World: A Father's Quest to Unriddle the Mysteries of Autism.

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