A lifeline for Jackson and Victoria

Victoria cares full time for her son Jackson, who lives with autism. It has always been just the two of them, which means that Victoria has had to take on most of Jackson’s care and has had to give up work.

When Jackson was first diagnosed, it was the unknown that was scary for Victoria. This loving mother didn’t know what to expect or what her son’s future would look like.

"I was so stressed about how our life was going to work. I would come to terms with it then have a meltdown, and then come to terms with it and have another meltdown. As I started meeting and talking with more people, the less confronting it became, but every day is still a work in progress."

Jackson and his mum, Victoria, are such warm, kind people who love to laugh - but they’ve been through a lot.

"When Jackson was little, I started to notice some curious behaviour… he was very active and he loved patterns and puzzles. It was when his language didn’t develop that I started asking questions" Victoria says.

At two-and-a-half, Jackson was diagnosed with autism and Victoria immediately knew her life was about to change.

"When you have a baby, you have an image of what their life is going to be like. But, when you find out they have a disability you have to start thinking – actually, I need to adjust my expectations."

"You realise your child isn’t going to have the easy path; everything’s going to be a bit trickier, and you’re going to have to redefine your definition of success," Victoria explains.

Jackson was non-verbal and had boundless energy – he loved being outside. At only three, he was rearranging furniture at night so he could climb out the windows; his grandpa even had to secure the furniture to the floor. Victoria got little sleep as she was constantly worried about Jackson’s safety; he had no fear.

As you may be able to imagine, Victoria’s life was out of control. And although she had the support of her loving family, she felt isolated and she was exhausted.

Jackson is an affectionate and funny young man. He loves cuddles with his dog, George, riding his bike with his grandpa and going out on day trips. Although his words are few, he has developed ways to communicate – and his lovable personality means he makes friends wherever he goes.

A few years ago, when Jackson finished school, he started attending Day Options at Minda and loved it. He loves going on outings, as he thrives when he is out experiencing the world.

"We’d gotten to a point where we were managing life really well. I had worked my way up in my job and Jackson was settled at Minda", Victoria tells me.

But suddenly everything changed, and Victoria and Jackson’s lives were turned upside down.

Not only did Jackson live with Autism, he had developed an extremely rare sleeping condition called Kleine-Levin Syndrome (KLS), which can cause long periods of sleep – or no sleep at all. During a deep sleep, it can also trigger cognitive changes, which can be confusing and distressing.

"It meant at one point, Jackson didn’t sleep for six weeks. And even now, he can sleep for up to 20 hours a day, for weeks at a time." Victoria explains.

Imagine how hard it would be to cope, when you’re finally getting your life in order. As a mother myself, I know that Victoria would have been heartbroken for Jackson, who had already been through so much.

Minda’s Day Options were no longer suitable for Jackson as it was impossible to control his sleep patterns and he wasn’t always awake to participate. Victoria had no other option but to give up work to look after her son around the clock.

Jackson’s behaviour changed and he became increasingly withdrawn – he was not his usual, happy self and wouldn’t leave the house. This was one of the hardest times for Victoria and Jackson.

"The change I saw in Jackson was a big shock. In the worst of times, he was very down and one of the things that usually defined him was his happy nature," explains Victoria.

"Lack of sleep meant self-care for both of us just went out the window. It was really hard. We basically shut ourselves in the house and didn’t leave unless we absolutely had to."

After speaking with Disability Choices at Minda, Victoria was able to access nine hours a week of support for Jackson. Two days a week, someone from Minda visits Jackson at home and spends time developing his skills and interests. This gives Victoria a few precious hours to get some sleep, run essential errands and go to appointments.

"It’s a lifeline. Those nine hours a week and the support we receive from Minda make a huge difference."

"It also means that Jackson has someone else in his life other than me. That was one of my biggest concerns. He became so attached to me and he needs to have a bigger world than that." Victoria says.

My hope is that Minda can continue to provide support to as many people as possible. But, there’s only so much we can do with the limited funding we receive.

Nine hours a week may not seem like a lot, but it means the world to Victoria and Jackson. It’s so rewarding to see when Minda is able to provide a family with the tailored support they need to be able to get on with life.

"Jackson really enjoys spending time with his support workers. As they are closer to his age group, they do things I wouldn’t necessarily think of. If Jackson is feeling well they go out swimming or bowling – he just loves it!"

Victoria and Jackson have really had to adapt to the challenges life has thrown at them.

Despite the hard times, Victoria will often say how lucky they have been, because she knows that there are a lot of families out there who haven’t had the same support as her and Jackson.

Victoria says during the hardest times, when she felt isolated and helpless, that Minda was there for her and Jackson in so many ways.

"Minda has really given us a community – without that, life would be very sad and lonely."

"During our darkest days, that sense of community really kept us going. Minda is such a warm and caring place - you know everyone there is doing their very best for our kids."

Victoria’s wish is that Jackson continues to be happy and loved. Like any parent, she wants her son to have an enjoyable and enriched life, to be treated fairly and with respect.