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Covid-19 Australia: How lockdown devastated the autistic community who need exemptions

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When life becomes overwhelming for one of her three profoundly autistic sons, Kathrine Peereboom’s go-to plan is a drive to the local park.

The familiar route is one of the quickest ways to soothe Oliver, eight, or Joshua, seven and five-year-old Tyler, who crave routine and thrive in structured environments like most children with Autism Spectrum Disorder (ASD).

Such drives are common coping tools used by families across Australia, but one that has been taken from them by the five-kilometre travel limit imposed during lockdown, robbing the autistic kids and their parents of the routines they rely upon.

Ms Peereboom, who works full-time as the founder and CEO of ASD charity Spectrum Support from her home on the Gold Coast, has been spared the worst of the restrictions due to Queensland’s minimal outbreaks.

But through her work she knows of countless parents across New South Wales and Victoria where punishing months-long lockdowns have pushed special-needs families to breaking point. 

Kathrine and Steve Peereboom with their sons Oliver, eight, Joshua, seven, and five-year-old Tyler, all of whom are profoundly autistic

Like all children with Autism Spectrum Disorder, Joshua, Oliver and Tyler (pictured) crave routine and thrive in structured environments. The pandemic has upended life as they knew it

Like all children with Autism Spectrum Disorder, Joshua, Oliver and Tyler (pictured) crave routine and thrive in structured environments. The pandemic has upended life as they knew it

‘It’s been diabolical. There have been moments of serious mental health decline, not just for us as parents, but for the children too,’ Ms Peereboom told Daily Mail Australia.

‘Autistic families need to be given an exemption to go for a drive and travel to locations they feel comfortable in.

‘Our community is hurting so badly. There’s been a lot of anger, we feel forgotten.’

ASD covers a range of developmental disabilities including autism and Asperger syndrome that cause significant social, communication and behavioural challenges. 

The spectrum covers everyone from the peculiarly gifted to the severely impaired, but what they share is an extreme dependency on routine and distress when unfamiliar circumstances impede on their world.

When school is suddenly taken away, visits to the playground banned, when their favourite foods are unavailable due to panic buyers and freight disruption, it can have a dire impact on kids who find even small tweaks to routine frightening. 

It is estimated that one in 70 Australians now live with the disorder, the equivalent of 357,000 people. 

But despite its size and the very specific assistance it needs to cope during Covid, Ms Peereboom said the autistic community has been offered next to nothing in terms of support since the lockdowns began more than 18 months ago.

Kathrine Peereboom, CEO of Spectrum Support and mother of three profoundly autistic sons

Kathrine Peereboom, CEO of Spectrum Support and mother of three profoundly autistic sons

She slammed the government for withholding exemptions from the parents and carers of autistic children after coronavirus upended the carefully crafted timetables that took them years to perfect.

The constant changes and flip-flopping in and out of lockdown have caused enormous distress for children with ASD, who struggle to understand why they suddenly cannot go to school or play at the park.

The increase in domestic violence, depression and suicidal tendencies brought about by lockdowns have been well documented, but Ms Peereboom said the rate they have accelerated within the autistic community is devastating.

She spoke of parents who have had their homes ransacked by their own children,  who are ‘crumbling’ and can no longer cope with the limitations of lockdown.  

Ms Peereboom knows of a single mother raising two autistic children in regional NSW, who made an appointment for the Pfizer vaccine only to be told she could not attend the clinic under current restrictions because she was outside the 5km radius.

Ms Peereboom described the regression she sees in her little boys (pictured) during lockdown as 'devastating'

Ms Peereboom described the regression she sees in her little boys (pictured) during lockdown as ‘devastating’

‘I had her call me sobbing, her children are both regressing at the moment and her mental health is just abominable,’ she said.

‘The pressure on these families, particularly single parent families, is so immense.’

Ms Peereboom also took aim at Victorian Premier Daniel Andrews over his controversial decision to rope off playgrounds and skate parks after the state went into its sixth lockdown on August 5.

‘These places are a lifeline for autistic families, we need priority exemptions,’ she said.

Panic buying and stockpiling when lockdowns were imposed also had an acute impact on the autistic community, with families like the Peerebooms unable to source essential items that often mean the difference between a peaceful day and all-out meltdown.

One of Ms Peereboom's sons, who refuses to eat most foods, has been hospitalised four times in the past year for starvation because the snacks he does eat have been continuously sold out

One of Ms Peereboom’s sons, who refuses to eat most foods, has been hospitalised four times in the past year for starvation because the snacks he does eat have been continuously sold out

‘We’re still having problems getting core items. All three of my boys are in nappies and I haven’t been able to get them in supermarkets,’ Ms Peereboom said.

One of her sons who refuses to eat most foods has been hospitalised four times in the past year for starvation because the handful of snacks he does eat have been continuously out of stock.

Ms Peereboom believes the pandemic has highlighted a glaring lack of consideration for Australia’s autistic community that must now be addressed.

‘It just shows how out of touch [the government] is with the Australian people, particularly disabled Australian people,’ she said.

‘We’re not being heard.’ 

To help her sons (pictured with dad, Steve) and tens of thousands like them, Ms Peereboom says the government must give exemptions to autistic families

To help her sons (pictured with dad, Steve) and tens of thousands like them, Ms Peereboom says the government must give exemptions to autistic families

Ms Peereboom believes the response of governments to the pandemic was wrong, wasting too much time and resources on policing the healthy and fixating on vaccinations when they should be concentrating on helping the vulnerable cope with virus that is here to stay.

‘The families are screaming, it’s just horrible,’ she said.

‘More needs to be done for the elderly and the disabled community, we need to be uniting people rather than tearing them apart.’

She believes all Australian states must abandon the pursuit of a ‘Covid zero strategy’ and focus their efforts on providing support for those who need it most.

‘When you look at the rest of the world and how they’re now managing the pandemic, everyone is just living their lives,’ she said.

‘I’m fearful for the mental health of Australians as a collective. People who can’t pay rent, can’t go to work – what are they gonna do when suicides continue to increase, what’s the plan for that?

‘The bottom line is, autistic families need exemptions and they need them now.’

For support regarding caring for children or adults with ASD, call Autism Spectrum Australia on 1800 277 328. 

You can also visit the website at Autism Spectrum Australia or Spectrum Support Australia.

Support for people caring for children with ASD and other needs 

Parents of schoolchildren with ASD and other additional needs have assumed new roles as teachers since the pandemic began.

Many are still working or managing their own businesses full-time.

In April 2020, Spectrum Support founder Kathrine Peereboom told Daily Mail Australia how she is making this ‘new normal’ work with her three young boys.

1. Create a schedule

Creating a schedule not only provides structure for your child but it helps maintain stability of a routine which they have at school. 

Setting up your day to accommodate office hours, virtual meetings and returning calls is very important. If I am required to take an important call, I will ask my husband to watch the kids.

Because my older boys can ‘vocal stim’ all day long, I often jump in the car instead of the bedroom. If my husband is not home, I arrange an activity that I know will keep the kids quieter, like a swim in the pool or watching their favourite cartoons on TV. 

I try to respond to emails and work on presentations when the boys are asleep in the evening so I can think clearly.

If you have an employer, be sure to have an arrangement with them and manage expectations. Communication is more important now than ever before.

2. Plan for interruptions

The phone rings and of course the child who has played contently for the past hour now becomes, hungry, need wants something or are getting up to things they shouldn’t. 

Making a habit of using the mute button will stop you from constantly having to apologise to your boss or clients. 

If I’m working with someone new I will always let them know at the beginning of the virtual meeting or call that they may hear the boys in the background and that they are autistic. 

My kids’ well-being is always a priority and I will end any call with apologies and reschedule if required. 

Some days your beautifully planned schedule will just need to be placed on hold.

If they have had a bad night’s sleep, if they are feeling anxious with all the new changes, had a meltdown or are feeling emotional or overwhelmed, on new medication etc. – just roll with it. 

Focus on them and getting them back to being themselves with activities they enjoy. Home schooling can wait for a few hours or even a few days.

3. Separate being a parent from your business role

As parents, you know your children best – when they are most likely to be full of energy and when they need some down time, and use that to your advantage. 

Being able to focus on each role completely will create satisfaction because you know you’ll be giving each task your undivided attention.

If there’s an important meeting, try to schedule it in advance and work with your partner to supervise the kids. 

For single parents enlisting the help of a family member or support worker maybe a potential option. Please note that each state currently has different rules about having family over to your home, so if you’re unsure reach out to the appropriate authorities to avoid hefty fines.

Creating a work space is also a wonderful option if you can. Closing the door allows you to disengage from the house and not worry about the messy kitchen or that the beds haven’t been made.

For parents in a similar position to me, my three are busy, noisy and constantly keep my husband and I on our toes. 

For visibility and safety we work from our dining table and often take turns to attend to the boys needs to ensure we fulfill our jobs for the day. 

If it can wait until later, it generally does. In the quiet, it takes five minutes to write that email as opposed to four hours of up and down.

4. Talk to your child’s educator for examples

Communicating with your children’s school, teachers and therapists will provide insight about the strategies and techniques they are successfully using to get the best out of your child’s day. 

Learn what the daily routine is for them. What time do they break for recess and lunch, and details about where they are in their education. 

No parent wants their child’s education and progress to stop or regress so please speak with key people to make sure you’re comfortable with the lessons you need to provide.

Ask for whatever tools you need from them or to purchase. If you have consumables in your NDIS plan this may cover the cost. Consider visuals, PODD, AAC Devices, LAMP, Proloquo2Go for some examples and don’t forget to reach out to some of the wonderful parents in social media groups too.

5. Take ‘parental breaks’ to remain sane

Yesterday I needed to take a drive just to get a break and stay composed. Even in lockdown essential service providers such as support workers and carers may be able to assist you in the home. My advice is, don’t be afraid to use it if you need to!

Self-care, being supportive with your partner and knowing when things are becoming overwhelming are signs you need support for you. While stress relief is different for everyone, find what works for you and do it daily!

Exercise, singing, dancing, lying down, meditation, watching TV, cooking, gardening, drinking a glass of win or a quiet cuppa. It doesn’t matter what it is, just remember to make yourself a priority every single day.

Source: Kathrine Peereboom, CEO of Spectrum Support Australia 

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