Coronavirus: Parents’ struggle to homeschool autistic child

With a severely autistic child that needs around-the-clock care, these two working parents don’t know what to do amid school shutdowns.

It’s hard enough to homeschool a seven-year-old child with both parents working full-time.

But for Melbourne father Paul Kasteel, his severely autistic child needs around-the-clock care, and he doesn’t know what to do.

“My oldest son is like a puppy dog. He needs 100 per cent supervision,” Mr Kasteel told news.com.au. “And we just don't logistically have the capacity to sit with him for 24 hours a day.”

Mr and Mrs Kasteel both work full-time jobs, and he’s lately been pulling 100 hour weeks to keep his struggling restaurant afloat.

This week, Victorian students will return to Term Two, but only do so via online learning amid coronavirus concerns, and Mr Kasteel doesn’t know how his family is going to cope.

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Mr and Mrs Kasteel are struggling to meet the needs of their autistic son.

Mr Kasteel’s oldest son, 7, has autism as well as Hypoxic Ischemic Encephalopathy (HIE), which is a type of severe brain damage that occurs during birth.

“He needs minimum 20 hours of therapy a week,” the beleaguered father said. “In an ideal world he’d have a neurologist, occupational therapist, a behavioural therapist and a speech therapist.”

But as of two weeks ago, that all came to an end.

Mr Kasteel’s NDIS service provider told him on April 6, “we have consulted with other providers, the code of ethics and also the NDIS. Based on the current available information it does not seem likely that we will recommence face-to-face sessions.”

They have since assured Mr Kasteel that the service will continue, but have no guarantees as to when.

Mr Kasteel is beside himself.

“My son can’t do therapy or school through a laptop. For him to effectively have a telehealth conference, he needs someone to sit with him and make him concentrate,” he said.

“So there’s an assumption that me or my wife would sit with him during those sessions.

“But we can’t.”

Mr Kasteel’s two sons. One is five, the other is seven.

Mr Kasteel spent hours on the phone to a disability service agency begging for a carer to visit his son face-to-face.

“When I spoke to the agency, the person couldn’t actually give me a carer to come visit my house,” he said. “They aren’t allowed to send carers over as they don’t want to be responsible for giving coronavirus to a kid.”

Mr Kasteel acknowledged that this was fair enough, but it has left him with no options.

“Every child deserves a right to education and children with special needs can’t be educated from home,” he said.

“Right now there are parents who aren’t essential workers, but they can’t work from home if their child needs full time support throughout the day – that’s the crux of it.”

Mr Kasteel runs a struggling restaurant on Melbourne’s once-bustling Chapel Street which news.com.au reported on last week, while his wife is a business analyst.

Mr Kasteel is struggling to pay his mortgage with his Melbourne restaurant, Miss Kuku, being hit hard by coronavirus restrictions.

“She works from home, has meetings scheduled, stand-up, sit-down meetings,” he said.

“My wife was emotionally distressed when l got home last night.

“She’s actually set up a desk and locked herself and our other son in her room trying to get work done.”

“Obviously I love my son,” he added. “But for us, going to work is a respite from the weekends. It sounds harsh but it’s the reality.”

Mr Kasteel with his other son, who is five years old.

His wife worked part-time off work during Victoria’s school holidays, but the family desperately needs more money coming in. And school is set to start again next week.

“Where does this leave us? My son can't go to school, can't access therapy. How are we going to cope next week?”

He’s also noticed an increase in tantrums, with his son agitated at the change to routine.

“Definitely a rise in frequency and duration of tantrums,” he said.

“And what we’re seeing for the first time which is really disturbing is also self-injurious behaviour.

“My son is getting really frustrated, throwing things around, slapping himself on the head.”

He described the huge strain this change puts on his marriage.

“One night I came home and as soon as I walked in the door my wife walked out the door,” he said. “She didn’t even say anything and left the house for 45 minutes. She needed a break.”

“We’re like two fish in a fish tank, we swim around each other but don’t interact.

“We don't have much of a relationship (since this all started.)”

Mr Kasteel has begged the government for help.

“I think the government is doing a good job, but there’s going to be gaps that they have to fix as they go,” he said.

“My family is under immense pressure and the Government has not provided any guidelines for how children with special needs will be able to access education and services.”