A mum's account of living in social isolation lockdown with an out-of-sync child
Jenny Lee offers a personal perspective on helping a child with autism cope with the chaos and uncertainty of coronavirus
OBSESSIONS, repetitive behaviour and routines are how people with autism cope with everyday life. If a traffic accident or roadworks makes a parent deviate from the way they normally path to school, it can lead to heightened anxiety for the child and even them refusing to get out of the car.
School closures and special times of the year, like Christmas, can be magical to many families, but a time of trepidation for parents of autistic children, who know that they can’t cope with the unexpected, the change of routine, even the sensory assaults of the season, such as smells. These occasions need careful planning and preparing the child for changes of routine.
So what do you families of neurodiverse children do when you add a global pandemic into the mix?
For the child, the security and routine of school and their classroom assistant is taken away from them and everyone around them is acting anxious. They're told they can’t go to the play park or see their cousins and everyone must stay in their houses because of a virus that can kill.
Autism spectrum disorder (ASD) varies vastly from those who are non-verbal and have learning disabilities, to those who have Asperger's syndrome, who are highly intelligent but also struggle with social understanding, behaviour and communication.
My nine-year-old son Noah has ASD, as well as dyspraxia and dyslexia. After many challenging years fighting for diagnosis and support, he was finally awarded a 'statement' and since December he has had the support of a classroom assistance and access to assistive technology.
It’s been wonderful seeing him no longer afraid to go into school, or to attempt to read a few lines, without hiding under the table. He has been starting to slowly gain some self-esteem and confidence and to believe in his own ability.
His school has been closed since March 13 and I must admit the past two weeks have been a massive struggle, for both him and the entire family.
He has a lot of sensory issues, including an aversion to water, so increased handwashing has been a struggle. We have seen the return of daily meltdowns (bigger, more emotional, longer-lasting, and more difficult to manage than the average temper tantrum), stimming behaviour (rocking, head banging, repeated noises), emotional shut-downs, violently lashing out at his sister, and anxiety.
And as he has previously had treatment for self-harming, this is extremely worrying development.
On numerous mornings, he has asked “What’s happening today?” The answer has been met with disappointment – he's collapsed in floods of tears saying, “I want to go to school” or “I don’t know what to do.”
A quarter of the world’s population is under lockdown. When the world comes grinding to a halt, it’s difficult for adults to comprehend what's happening, let alone for a child with ASD to understand why he can't go to his McDonald’s or even visit his granny.
The internet has a number of helpful social stories, which help explain coronavirus, and Autism NI have produced some useful resources, including an anxiety resource pack and educational resource kit, which can be downloaded from their website, Autismni.org.
Like many, I'm trying to juggle working from home with the demands of childcare and home schooling. Our phones are constantly sending alerts, our children's schools asking you to sign up to a number of online learning platforms.
While his little sister can’t get enough of worksheets and online learning videos, attempts to home school Noah usually result in angry or tearful outbursts where he repeatedly says “I’m dumb.”
Of course I don’t want my child to regress in school; I want him to continue his reading programme, but I’m learning, through experience, that when a child is feeling stressed, learning just isn’t possible.
Routine is a powerful learning tool in the ASD environment, so we are gently creating a new one – one that incorporates plenty of time spent outdoors.
Many kids with ASD seek solace in watching a screen, but not mine. We are blessed to live on a farm, so when the books fly and the tears fall, Noah’s safe place is usually found up an apple tree – and in today’s uncertain world, I’m happy that he has found that place.
So digging soil, shovelling stones, gathering apple-tree prunings and feeding animals is our current home schooling timetable. Fractions, division and phonics can wait until we rediscover calm and order.
Yes, I worry about his future. I worry about his social skills. I worry will he may never be able to read and write. I worry that he will not cope with a return to formal education. But this current global crisis makes us all feel grateful for our families and is a reminder that my child’s mental health is more important than their academic skills.
:: Autism services, CAMHS and Rise NI have made a series of resources available on supporting children with ASD coping with COVID-19 isolation, available at Southerntrust.hscni.net/autism.htm.
AUTISM IN THE LOCKDOWN
?Shirelle Stewart, director of the National Autistic Society Northern Ireland, shares advice on coping during the coronavirus pandemic.
"This is an unprecedented situation. It is affecting everyone’s lives, including the 18,000 autistic people in Northern Ireland and their families.
“This sudden unexpected change and disruption to everyday life is particularly hard for autistic children and adults. A cancelled appointment, empty shelf or closure of a local café can be so much more than an inconvenience – it could trigger intense stress and lead to a meltdown or a shut down.
“Many autistic people and families will find it hard to adjust to this drastic new lifestyle. But it’s important to keep calm.
“Give each day structure, by making time for exercise, eating and fun activities. With all the news updates and information coming in, make sure you’re picking out the most important parts only. Communicate this clearly and give yourself or your family enough time to process and respond.
“Think about what you like from your usual sensory environment at work or school and try to create this at home m– for instance by only have cooking smells at certain times of day, using noise-cancelling headphones so outside noise isn’t a distraction or finding a quiet area in your home.
“If you're feeling lonely while social distancing or self-isolating, talk to friends and family over the phone, connect to other parents on our online community or get support through our Parent to Parent service.”
:: For further advice tips for autistic people and their families visit Autism.org.uk/coronavirus.