Siblings Australia celebrates 25 years supporting brothers and sisters of people living with disability or illness

They’ve never been to the movies together. Going grocery shopping took four years of preparation. Here, the Glastonbury family reveals what life is really like with a son, and brother, with a severe disability.

The moment is burned into Sami Glastonbury’s memory: desperately searching out the back window of the ambulance for her husband Kevin’s car to come into view.

Next to her was their critically ill baby boy. She had been forced to leave his sisters, then aged two and four, back at the house.

“We had to go,” Mrs Glastonbury said, explaining that their five-month-old son Frank had contracted a virus and was “starting to lose consciousness”.

“I called my husband. Then I had to take the girls out and put them in their cubby house in the backyard. I got into the ambulance with Frank and was just hoping and praying that my husband would get home. As we drove out I just remember looking out the back window the whole time.”

It is one of so many times Mrs Glastonbury, 44, has had to prioritise her son, now 10, over her daughters Coco, 15, and Gigi, 12.

The Glastonburys - Coco, 15, Frank, 10, mum Sami, and Gigi, 12, and at home. Picture: Matt Loxton

The Glastonburys are sharing the reality of life with a child, and sibling, with disability in the hope it will encourage others to be more understanding and less unkind.

“I know this is just our story, but there will be parts of it that connect with people who think ‘Finally, someone else is talking about what it’s really like’,” Mrs Glastonbury said.

And what is it like?

It’s having to help your brother go to the toilet and shower.

It’s never going to the movies as a family.

It’s at least 40 visits to the Women’s and Children’s Hospital a year.

It’s being told your brother has been taken away from school in an ambulance and handed his backpack to take home.

Before his birth in 2014 Frank’s parents knew he had a heart condition that would require surgery.

What they didn’t know was that he would be born with impaired vision, have his first epileptic seizure at the age of four and eventually be diagnosed with severe intellectual disability aged six.

Sami Glastonbury didn’t know the extent of her son Frank’s health complications before he was born in 2014. Picture: Matt Loxton

But Mrs Glastonbury felt early on that her son was “different to the girls”.

“I remember calling my closest girlfriend, when he was about three weeks old, and saying ‘I feel like my life is about to change forever’,” she said.

Frank underwent open heart surgery at six months old and will need future surgeries.

He can see but his brain has difficulty computing the images his eyes take in.

Frank has the developmental capacity of a three-year-old and needs support with toileting, washing, dressing, eating and taking his medication.

He’s also a cheeky fella who loves to draw, race his sisters in the backyard pool, play tackle on the lawn or sit at the dining table for a card game.

“He’s very loud and energetic, always running around the house,” Coco said of her “footy obsessed” brother.

And he “loves to barge in” to his sisters’ rooms and fiddle with things, Gigi added.

“If I go to my friend’s house and their younger sibling comes in and distracts them they can say ‘can you leave?’ and they get out. But with Frank you have to say ‘Please can you hop out, put that down, don’t touch that’. And if you do yell at him or get angry then he’ll get worse,” she explained.

“It’s hard sometimes … but we also understand that he needs more attention.”

Frank loves to play at home with his sisters Gigi and Coco. Picture: Matt Loxton

Both the girls have experienced mean or ignorant comments from other children, and have been reluctant to have friends visit or sleep over.

“Most people don’t really know how to respond (to Frank),” Coco said.

“I’ve had girls come up to me and say ‘what’s wrong with your brother?’

“Making jokes about him, that’s the thing that really upsets me.”

Mrs Glastonbury knows her girls “had to grow up really quickly” because her focus had to be on “keeping Frank alive”.

“There was so much that they missed out on. I was acutely aware of it as it was going along but you can’t do anything about it,” she said.

Frank has been on the National Disability Insurance Scheme since birth, funding services like occupational, speech and physio therapy but Mrs Glastonbury had to fight to be able to hire a support worker late last year.

Now there is someone to help take Frank to and from St Patrick’s Special School, in Dulwich, and on visits to the playground or football oval.

Such support is crucial to the Glastonburys being able to do so-called “normal” family things.

“Other people just go out to lunch, or duck to the shops. It sounds normal, but it’s not for us,” Mrs Glastonbury said.

“To take Frank to the grocery store took four years of occupational therapy … teaching him skills to safely get out of the car or hold my hand in the car park.

“Initially he would get out of the car and it was too overwhelming so he would just run.”

His sisters need support too – and they have found it through advocacy group Siblings Australia, founded 25 years ago in Adelaide.

“Being able to connect with others that are going through similar situations, and are a similar age, helps so much,” Coco said.

The organisation offers scholarships, counselling and holds events where young people can speak freely about life with a sibling with disability or a chronic health condition – and know they won’t be judged.

However, Siblings Australia is being forced to put programs on hold, reduce staff hours and relocate its office because of a funding shortfall.

For support or to donate visit siblingsaustralia.org.au

Originally published as Siblings Australia celebrates 25 years supporting brothers and sisters of people living with disability or illness