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Support and education are key for carers

Mother’s love: Jenni Grant with her son Kyle. Photo by David Rak

Few people are as pleased to see COVID-19 restrictions easing as Jenni Grant and her partner, Dale.

Ms Grant is a full-time career for her nine-year-old son, Kyle, who has level three autism, attention deficit disorder and epilepsy.

Kyle is non-verbal and requires around-the-clock care – a challenging task at any time, but especially difficult when pandemic restrictions removed the established support network.

Ms Grant normally has help from in-home support workers and a range of specialists that give her a break and help Kyle develop.

But that has been significantly scaled back for the past 18 months, leaving Ms Grant struggling to cope.

“Kyle is almost stronger than me and he can get very violent. He bites, scratches and pulls hair,” she said.

“It’s never easy but with the support network we had in place it was manageable. We made it work and found short periods of time to have a break.

“I understand why everything had to change when the pandemic set in, but that didn’t make it any easier.

“My day starts at 5am and I’m going all day. Trying to get to all the everyday jobs of keeping the house running are hard when I’m looking after him.

“Telehealth is very difficult for Kyle because of his condition. Sometimes it is good because we don’t have to drive to Melbourne, but getting him to sit and concentrate is difficult.

“I’m relieved things are somewhat back to normal and I’m really hoping they stay that way.”

Ms Grant said she worried what the future looked like for Kyle as it was unlikely he would ever speak or live independently.

“That’s a concern because he’s only going to get stronger,” she said.

“We’re doing all we can with specialists to get him communicating and to allow him as much independence as we can.

“No-one knows what the future holds for Kyle. We just have to do the best we can and hope for the best.

“We want him to live a normal life, but it hurts to know that may never happen.”

Ms Grant would like to see more education for people about Kyle’s condition so that it wasn’t as confronting when they interacted with him.

“If Kyle is going to have any form of independence, there needs to be education out there so he can go out into the world,” she said.

“Very few people get what it’s like to deal with Kyle’s conditions. I understand why some people find it hard to deal with.

“People often tell me they don’t understand how I do it because they could never cope with it.

“But at the end of the day, Kyle is my son, and he will always be my son. I’ll be there for him no matter what the future holds.”