Yoshe provides insight into what it is like living with a profoundly disabled child, her son Jakson.
Yoshe provides insight into what it is like living with a profoundly disabled child, her son Jakson. Warren Lynam

How a severely disabled child enriches this family's life

JAKSON is lying on his bed as the man he knows as his father gently wipes his underarms and changes the 14-year-old boy's nappy.

I've arrived at the family's Currimundi home for "bath time" and dinner time, except these simply daily exercises take on whole different meaning in Jakson's world.

The teenager, who has a rare genetic disorder called Leukodystrophy cannot walk, talk or hold his head upright.

He feeds through a PEG in his stomach and the best way he can communicate is by opening and closing his mouth for "yes" and blinking for "no".

He doesn't close his eyelids properly and his face is severely distorted; scoliosis curves his body to the right.

As I look this child, the same age as my first born son, I can't help wonder how his parents cope.

How can they bear to get up in the morning knowing Jakson's condition will be no different?

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He will never learn to kick a ball, run in a school race (even if he loses), wrap his arms around his parents and say "I love you".

Jakson is one of 1486 people registered with the Department of Communities, Child Safety and Disability Services for disability support services on the Sunshine Coast.

His mum, Yoshe, allowed me a glimpse into their world and explained why for so many parents like her, having a child with a disability was an enriching experience.

As I walk through the front door, Yoshe is on the phone to someone in Disability Support Services.

She needs more medication for Jakson who has had a pressure sore that hasn't healed for 20 months and she has run out of cash to buy more.

In Jakson's room, next to the book shelf full of popular children's books and family photos of holidays, including a recent trip to Underwater World, is a chest of drawers that houses all the bandages and medical supplies Jakson has to use on a daily basis.

 

Yoshe freely admits she never thought she could cope with a disabled child.

And if she had known how he would turn out at the 19 week scan, whocould say what decision she would have made.

"They told me then there was a 75% chance he would be normal," Yoshe said.

But it wasn't long after his birth the family realised he wasn't following any of the traditional "normal" behaviours.

"He wouldn't latch on (to feed)," she said.

He also lacked muscle tone and where other children were starting to roll, crawl and then walk, Jakson couldn't.

With other children to care for, coping with Jakson as a child wasn't easy and there were many dark moments.

But Jakson's siblings adored him and Yoshe found a supportive partner who loved Jakson as his own.

It took five years of struggling to juggle two jobs, three children, one with extreme disabilities, before Yoshe became aware of the amount of government support services available.

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The family moved to a housing commission home on the Sunshine Coast two years ago and are "loving life".

Jakson attends the Currimundi Special School, which he "absolutely loves", even though his health has meant he has only been able to attend nine weeks in the past two years.

As I watch Yoshe feed Jakson , through a PEG near his belly-button, I wonder how the family gets out.

But she tells me they love to go "camping".

"We can't stay in motels because Jakson has no immunity, but we love camping," she said.

A new van, which was bought through fundraising by 91.9 SeaFM, has given them a new lease on life as they can take Jakson out.

She kisses her son gently on his head as we talk and, even though Jakson has limited movement he tries to smile, it is clear he warms to the affection.

Jakson's condition is not going to get better, it may get worse, but Yoshe loves waking up to the sounds of him stirring in the morning.

"His body has failed him, but he is there," she said.

"We love him. It is hard, but it is very rewarding.

"If you tell him a story, he will interact with noises.

"He has taught us the value of life, love and how to be calm and patient. He brightens up our day. He has a great sense of humour."



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