Living with autism: Good days, bad days and 'meltdowns'

The Sim family, from left, Cathy Kiely, her son Jesse Sim, and Philip Sim.

The Sim family, from left, Cathy Kiely, her son Jesse Sim, and Philip Sim.

His mother will sometimes cry and wonder "why me?" But then Jesse brings her a flower and says, "mum, love". Picton couple Cathy Kiely and Philip Sim give reporter Jennifer Eder a glimpse into an ordinary day with their autistic son Jesse.

Jesse has only been asleep for three hours, and it's 9am.

The windows are wide open. Jesse has to have the windows open in all weather.

Philip Sim talks about trying to give his autistic son a normal life.

Philip Sim talks about trying to give his autistic son a normal life.

He's been up all night wandering through his Picton house, and his parents have had little sleep.

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"We know all about sleep deprivation," Jesse's father Philip says.

Cathy Kiely and Philip Sim with a picture of their son Jesse on a trip to the West Coast.

Cathy Kiely and Philip Sim with a picture of their son Jesse on a trip to the West Coast.

"Jesse has sleep disturbance. He's had it since he was little. He can be awake for up to 48 hours, and we look at each other and go 'when is he going to crash?'"

When Jesse gets up, often late in the morning, his parents make him cereal and milk.

He can eat it himself but it can get a bit messy.

Then his mother Cathy encourages him to have a shower.

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"He can groom himself, but it requires a bit of prompting or he wouldn't do it at all," she says.

Jesse is 35 years old. He is tall and broad, with a bristly beard, and looks no different to anybody else at first glance.

But Jesse has Autism Spectrum Disorder.

He can speak in broken sentences, and can read a few words, and retains information better than his parents, they say.

But he has social anxieties, a severe hearing problem and Cathy has never seen him smile, or cry for that matter, she says.

He is also prone to "meltdowns" when he does not get his way, Philip says.

Philip and Cathy have fought to keep Jesse at home, and sacrificed their personal and professional lives to look after him.

His brother Jethro, 37, also has Autism Spectrum Disorder but lives in a residential home in Spring Creek, between Blenheim and Picton.

"Jethro is not really in this world. But Jesse is half in and half out," Philip says.

"Sometimes he is more aware and other times he is quite out of it."

Philip and Cathy like to give him as normal a life as they can.

He feels anxious in crowds and cannot cope at the supermarket, so he helps his parents write up a grocery list at home.

He likes iced buns for a treat, Cathy says.

Jesse loves sport, and when the All Blacks play, the Sims sit in front of the television together with chips and dip and a can of beer "just like a normal 35-year-old", Philip says.

Jesse likes to get out of the house and walks down to Waikawa Marae a lot.

"He knows that is his place, his marae, where we come from. So it's a safe place for him. He can walk down there and it's a quiet place to go to," Philip says.

He used to spend a lot of time at the park, but recently someone there "shunned him" in some way, and he refuses to go back, Philip says.

"He senses when people are angry or intimidating, or feel threatened by him.

"We are aware of some bullying that's happened with some young people in the area, but I think that says more about the character of those people than Jesse."

Picton, the small portside town, is a perfect place to raise an autistic child, Philip says.

"We wouldn't have let him wander around in a town any bigger. People know him here, they look out for him. The police know him."

Philip has always been impressed with how police manage Jesse, he says, even outside Picton.

On holiday in Westport a few years ago, Jesse had a "meltdown" and walked off down the road, punching the air.

A passing off-duty police officer stopped him to find out what was going on, Cathy says.

"He thought Jesse was on P or something, carrying on like that. And we explained he had autism, and it turned out the policeman was ex-Picton, and he remembered Jesse," Cathy says.

Philip and Cathy try to take Jesse on regular holidays around the South Island.

"We want him to have life experiences, so he can experience the things the rest of us take for granted," Cathy says.

He likes animals, visiting museums and old buildings, and learning about the history of his iwi, Te Ati Awa.

Sometimes his anxiety makes it hard to get him out of the car, but "once he is out and doing things he does actually enjoy it", Cathy says.

"With Jesse, it's the little things that make you go, 'wow', like when we had a successful game of mini golf. That was a really good day. We'd been trying to get him to play the day before and he just wouldn't do it.

"With normal kids you probably wouldn't appreciate those little things as much. To us those little things are huge."

A bad day is when Jesse's anxieties play up.

He went through a phase where he would get frustrated and angry and smash holes in the wall with a bat.

Eventually Cathy and Philip arranged for a friend to patch up the walls, and for some reason, Jesse never put holes in the walls again.

He hasn't lashed out at his parents in years, they say.

Cathy admits sometimes she wonders "why me?"

"Sometimes I do have a wee cry and feel sorry for myself. But then I stand up, brush myself off, and carry on. You've got to. Life goes on."

However there are nice moments too.

Cathy cherishes the time Jesse brought her a flower and said "mum, love".

She does not want people to feel sorry for them, she says.

"You learn a lot from Jesse. You learn how to be patient, and I've learnt so much about nature because he's so interested in it. 

"He brings us joy in his own way."

 - The Marlborough Express

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