Clara Harris – A journey of love, pain and autism

In Clara’s words…

Who/what inspires me: Bruce Springsteen. Depression has been a part of his life. Many people say ‘what has he got to be depressed about’ but I see a man (the hottest man in the world by the way!) who is very honest with himself and his struggles.

Best advice/motto: Many, many people had told me over the years to “put yourself first”. I couldn’t do that and I didn’t understand – surely that was being selfish? It’s taken a long time but I now know you NEED to put yourself first. Your mental and physical health are vital to your whole family. If you crash, the whole family may CRASH. Be kind yourself.

It was a warm winter’s day as Clara Harris sat on the beach watching her six-year-old son frolic in the waves at the tiny fishing town of Port Gregory in Western Australia. The sun danced across the ocean in a million pinpricks of light and the waves met the shore in a rhythmic hum as he splashed with delight before her. Warmed by the sun on her skin, Clara found herself drifting into a daydream – a daydream in which her beloved son would be eaten by a shark.

Beauty in pain

“I was just so worried about how difficult the future would be for him,” Clara says. “I thought, he’s such hard work, he’s not going to have a normal life, it’s going to be difficult so let’s put him out of his misery.”

Clara’s son Sam has autism. And it has taken years for Clara to accept that ‘not normal’ is ok, that different doesn’t mean misery. The journey since Sam’s diagnosis 13 years ago has taken Clara and her husband Damian to depths from which they feared they’d never return. It sent Clara spiralling into a depression which stole her of the will to live.

But sitting in their beautiful seaside home today, country-style furnishings adorning the rooms, a warm and engaging Clara says their journey with autism has also filled their life with the gift of acceptance and the richness of close and loving relationships. It has opened their eyes to the beauty that often emerges on the other side of pain.

… autism has also filled their life with the gift of acceptance and the richness of close and loving relationships.

Not normal

Sam was 18 months old when Clara and Damian first noticed he wasn’t developing like his peers. He was loving and smiley and melted their hearts with his blue eyes and giggles but his development seemed to have stalled. Friends told her not to worry. He’ll talk when he’s ready, they advised. Unconvinced, Clara eventually took Sam to a speech pathologist who referred him to a paediatrician.

By now Clara already suspected Sam may have autism. He had an obsession with circles. He couldn’t stand being around other kids. He seemed not to hear his own name, yet the sound of a particular TV show would make him come running. He was frightened of babies. Haircuts made him scream with terror. He couldn’t say mum or dad, but he’d say Deborah – the name of the ABC newsreader.

Clara and Damian journeyed from their remote family farm in Binnu to the capital city of Perth to visit the paediatrician. The day before the appointment they took Sam to the park to feed the ducks and swans. Clara had visions of a beautiful family day out. But Sam descended into a screaming fit, crying and fighting as he struggled to immerse himself in some black mud. “All of us were crying, all these people were staring at us and I just remember saying to Dame, I’m so frightened of what we’re going to find out tomorrow,” Clara says.

Diagnosis

The next day Clara and Damian approached the disability services building, shuddering at the institution-like feel of the premises. Rusty cyclone fencing surrounded run-down buildings which, they later discovered, had once housed a mental asylum.

The paediatrician examined Sam but was reluctant to give a diagnosis until a psychologist and speech pathologist had also examined him. But Clara was not leaving without answer. She asked directly if he thought Sam had autism. Choosing his words carefully, the doctor admitted autism seemed likely. With the announcement, he handed Clara and Damian three or four sheets of photocopied information about autism and bade them goodbye. Arriving home to Clara’s sister’s house in Perth, the couple collapsed in tears.

“You have these dreams for your kid that you don’t even realise you have – dreams like going to the zoo and having wonderful holidays together,” Clara says. “And all of a sudden you think they’re not going to happen, let alone see your child getting married or living a fulfilling life.”

“You have these dreams for your kid … and all of a sudden you think they’re not going to happen.”

Help

Over the next couple of months, follow-up appointments with a psychologist and speech pathologist confirmed the paediatrician’s diagnosis. A disability services officer visited their farm to discuss their options. She handed Clara a list of four service providers – three of which were six hours drive away in Perth. But they could access two, half-hour therapy sessions in the Northampton hospital – a process which involved 200 kilometres of driving for an hour of therapy. Clara broke down in tears at the kitchen table. “Oh, it will be ok,” came the women’s awkward response.

Community love

While the isolation of their family farm made it difficult to access official services, it held one outstanding benefit – a tightknit community who’d do anything to help their friends. After the diagnosis, Clara and Damian had been inundated with offers of help. While it pained them to actually accept such support, Clara and Damian eventually put a notice into the local rag advertising for two people to be trained to teach Sam. They warned it wouldn’t be easy, but they hoped it would prove rewarding. The phone didn’t stop ringing in response.

Two women from nearby farms became Sam’s teachers and they, and a whole group of others, attended workshops to learn how to work with Sam, what to teach him, how to handle his outbursts. Clara and Damian knew they wanted to pay the teachers and envisaged borrowing money from the farm business. But again their friends galvanised. “You know how some people sponsor kids in Africa?” they said. “Well we want to sponsor Sam.” Clara’s dad’s employer donated a donga that they equipped with school equipment. And they started Sam, by now aged three, at what became known as ‘Sam’s School’ on their family farm.

“You know how some people sponsor kids in Africa?” Well we want to sponsor Sam.”

Sam’s School

On the first day of school Clara sat in the house crying as Sam’s screams exploded from the school room. On the second day a friend drove a 130-kilometre round trip to deliver Tim Tam biscuits and distract Clara by taking her on a walk. But she too heard Sam’s screams and they sat down and cried together over the Tim Tams, the sound of his wailing ringing in their ears. But, by the third day the screaming had eased to crying. And by the seventh day, Sam was smiling and racing to his classroom.

In the meantime Clara and Damian’s friends had formed the Mid West Autism Awareness Group (MWAAG) to fundraise for this loving couple and the boy who’d captured their hearts. The funds paid for therapists, travel to Perth for seminars, educational equipment and awareness raising efforts.

So successful was Sam’s School that, after 18 months, Clara felt Sam would be ok to attend kindy with other kids his age.

“I had read that early intervention can make an autistic child ‘indistinguishable from their peers’,” she says. “I just wanted him to be like any other kid. I know now that was never going to happen. In those early times you’re searching for that cure. And because I had this ‘indistinguishable from his peers’ thing, I put him in kindy.”

A sister

Sam progressed through his early school years with a handful of other kids in their tiny bush school. True country kids, Sam’s peers took him in their stride. Sam was Sam. Differences didn’t matter.

Clara and Damian’s friends continued to support them through MWAAG, joining Clara to hold information nights and stalls. Clara hoped that by informing people about autism they’d help reduce the stigma attached to it. She hoped by sharing their story they could ease the journey for people dealing with autistic people like Sam.

During this time Clara and Damian agonised over whether to have more children. A geneticist told them they had a 50:50 chance of having another autistic child. “We ended up saying well if it happens at least we know what we’re in for,” Clara says. And so, when Sam was seven years old, Sophie was born.

Violence

Sam had always been scared of babies. He’d clutch his ears at the sound of their crying as though he were in physical pain. Yet he loved his little sister at first sight. But as he grew older he became more frustrated at his inability to communicate what he felt. The frustration turned violent. He’d punch, bite and hit Clara, and himself. But when he started harming his little sister, Clara knew something had to change.

“He learnt he could hurt Sophie so he’d just go over and flatten her,” she says. “It was horrific. I’d call Dame on the two-way and say ‘you’ve got to come home’ and Sam figured out that he’d get to spend time with his dad if he behaved in this way.”

Clara’s emotional state crashed. “I had it all figured out,” she says shaking her head at the memory. “I was going to kill Sam. But if I was going to kill Sam I’d have to kill Sophie because she couldn’t live without her mother – obviously I was going to kill myself too. It was all so rational in my head.”

“I was going to kill Sam.”

A divided family

Eventually Clara unwittingly sounded alarm bells to her parents after making a light-hearted comment about having imagined Sam being eaten by a shark. Shocked, her parents realised just how low Clara had become. “They were so devastated that I hadn’t asked for help,” she says. “It made me realise where I was at and what was I thinking about not letting people help.”

While friends were quick to put up their hands to offer respite, Clara knew she couldn’t go on like this. She knew she’d need to move the family to the closest city of Geraldton where she could send Sam to a specialised school and receive formal respite while Sophie received everyday schooling.

But Damian, who’d grown up on the farm himself, was having none of it. “He was very, very angry,” Clara says. “It was his family farm. He was born there. We had a really tough time. He said ‘I married you to be here on the farm with me ’. And I said ‘yes, and I’d dreamed of taking the kids to the zoo and reading them Winnie Pooh but it’s not what we’ve got’. The zoo was a sensory nightmare for Sam and stories and books were never meaningful.”

Eventually they decided the family would split their time between houses. They’d buy a house in Geraldton, Damian would work on the farm during the week and they’d spent weekends together as a family.

 “They were so devastated that I hadn’t asked for help.”

Spreading the word

That was five years ago. Sam is almost 17 and in his second last year at Holland Street school for kids with a disability. Sophie is nine and is making a name for herself as a fundraiser and fierce advocate for people with disabilities. Damian runs the farm and travels back and forth to be with his family. Clara is sharing more of her journey with others, hoping to ease the pain for other families by providing raw, honest and emotional accounts of her own experiences.

Recently she conducted an information night that enticed more than 90 people – those dealing with autism, but also people suffering depression or mental illness. Clara is also about to fulfil a dream of launching a home and wedding styling service with her sister.

And, most importantly, Clara believes Sam is happy, that he has the fulfilling life she’d never dreamed possible. He thrives on music. He loves people. He’s demonstrative with his affection. “Sam’s a nice young man,” Clara says. “Everyone who meets him is positively affected by it. He does care about people and he puts a smile on people’s faces.”

And yet it’s not easy. Sam now has the build and strength of a man and knows how to intimidate his mother. “He will stand over me and almost puff himself up to be bigger again,” Clara says. “It’s scary. He’s six foot and he doesn’t know his own strength. But the hardest part is that he does it because he’s frustrated and as a mum I just think I should be able to figure out what’s wrong.”

“… he’s frustrated and as a mum I just think I should be able to figure out what’s wrong.”

Future hopes and fears

While learning to accept Sam’s differences has become easier, there are still moments that test Clara. Recently Clara fell apart at the sight of a Facebook photo of Sam posing with an old school buddy. Sam’s life-long friend was dressed for his school ball and grinning with Sam, who was dressed in casual attire and sporting white cotton gloves, with which he’d developed an obsession. “I saw the photo and just cried and cried for days,” Clara says. Sam wouldn’t be attending the school ball with his old friends, she sobbed. She lamented the thought that he’d probably never marry or have a family.

But in her more positive moments Clara believes Sam has a bright future. He did, after all, attend the Holland Street school ball and had such a blast he took over the microphone to sing karaoke style. Clara hopes Sam may one day live safely with some friends, indulge his love and talent for music, and work a part-time job in which he’s cared for and valued.

“Sam needs to be independent from us because of his behaviour – he’s least independent when I’m around. But his vulnerability is quite paralysing to me and the paranoid mother in me screams that he’s such a target – he can’t tell me what he did at school today let alone if someone had grabbed him and put him in the back of a van. But, in order for Sam to have an awesome life, I’ve got to let go of him. The future for Sam is exciting – as daunting as it is for me, it’s exciting for him. It’s got to be Sam’s journey now.”

“It’s got to be Sam’s journey now.”