An exhausted mum with a child with severe autism is calling on the Australian government to do more for children with special needs while in hotel quarantine.
Brenna Russell, 29, arrived in Sydney four days ago from Los Angeles and has been quarantining in Zetland’s Meriton Suites with her severely autistic son.
She has bruises on her arms from her son’s tantrums and she also fears for his safety.
Five year old Sebastien Russell has autism, ADHD, seizures, and a genetic variation of the NFIX gene that hasn’t been found before.
“I don’t know how I’m going to do this for another 11 days,” Mrs Russell told news.com.au.
“Hotel quarantine (is) almost impossible with Sebastien.”
This was what their hotel room looked like after Sebastien became increasingly agitated.
Mrs Russell has been begging the NSW government to allow her and her son to complete their quarantine from her NSW home, for her son’s sake.
She applied for this exemption seven weeks ago but hasn’t heard anything back.
“Everybody just passed me off to somebody else,” she said. “No one gave me an answer. I was really disappointed in that.”
Last night, Sebastien was so distressed that he hurled all their belongings across the hotel room floor.
Showing a picture, Mrs Russell said “At one point, this place was spotless.”
Sebastien “doesn‘t do well with confinement,” she confirmed.
“This situation is not a one size fits all. Our family does not operate like other families might.
“We need help.”
In a statement to news.com.au, NSW Health said it was doing everything it could to help families in such situations.
“The NSW Health managed Special Health Accommodation is managed 24/7 by a team of medical, nursing and allied health clinicians,” a spokesperson said.
“This quarantine option is available to people who require medical oversight or higher levels of support during their stay.”
However, they also added that they can’t comment on individual cases.
“Exemptions may be granted following a rigorous analysis of the circumstances of each case against the risk to the public,” NSW Health added.
“Only a small portion of the total exemptions granted allowed people – subject to strict conditions and compliance checks – to serve their full quarantine period in an alternative location to the hotel quarantine system.
“All people that are approved to self-isolate in the community are followed up by NSW Health’s Close Contact Tracing Team and additionally spot checks are conducted by NSW Police.”
Mrs Russell with her son and their service dog.
Mrs Russell loves her son very much but is struggling with coping.
Mrs Russell is also distressed because her husband is unable to help her.
Her husband, Paul, is an Australian, living in Nelson Bay along NSW’s north coast. He was allowed into the country months ago and came to earn money as a chef.
But for Mrs Russell, from Alaska, it took longer for her to be allowed into Australia. Now it means she has to look after their son alone in the four walls of their hotel room.
But their issues won’t end once hotel quarantine is over.
The family’s service dog, Guinness, helps Sebastien with his day-to-day living but is barred from entering the country.
“Guinness is trained for seizure alerts, tethering and behaviour disruption,” Mrs Russell said.
Basically, the highly trained service dog has been trained to bark whenever Sebastien has a seizure, which usually happens at night. This allows Mrs Russell to wake up and dole out the lifesaving medication.
The very clever dog once alerted Mrs Russell that a seizure was coming 36 minutes before it occurred.
“I thought, ‘They’ll never remove Guinness from us, he’s a piece of medical equipment, he’s worth $40,000 ($18,000 of which they had to fundraise for)’.”
But a licensing issue means the dog, a golden retriever and labrador cross, is stuck in LA and won’t be allowed into the country until December 7, at the earliest.
Paul, Guinness and Sebastien.
Guinness often helps Mrs Russell stop her son from running away by tethering him to the boy.
“Sebastien is an escape artist,” Mrs Russell said. “Back home, I had an alarm on every single door, he used to run out of the yard. Guinness would slow him down getting to the door.”
But without Guinness, the burden has fallen entirely to her to stop him escaping the hotel room.
“I’ve had to put the car seat in front of the door,” she said.
The family together in Alaska.
The situation is made worse by the fact that some of Sebastien’s medication isn’t allowed in Australia. She’s had to wean him off his current seizure pills.
Her son is highly agitated by his new surroundings and has to be sedated for health authorities to complete a COVID-19 test.
“Everyone who visits us is in full medical gear,” she said. “When they come to the door he runs to the back, he’s terrified.
“He doesn’t understand what this is, why this is happening.”