real life

COVER STORY: A child in an adult's body. When children with a disability grow up.

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Thanks to our brand partner, Telstra Smart Home

In this week’s Mamamia Cover Story, twin sisters Clare and Jessie Stephens talk to parents of children who have disabilities about how they navigate the very unique path towards adulthood… a challenging journey that is so rarely discussed or understood.

Simon has big blue eyes, a slightly lopsided smile and a tendency to rub his hands together rhythmically when he gets excited.

Simon is our cousin.

He was five years old when we were born and the three of us were in nappies at the same time. Dad still laughs about not being able to find nappies big enough to fit Simon, or small enough to fit Clare, who was a particularly tiny baby.

Gran would tell us Simon was “special”. He went to a “special school”. He was “a gift”.

And then we grew up and Simon… well, Simon didn’t. Not really.

As he got older, Simon’s job was to dress in a Santa costume on Christmas Day and give out presents. Sometimes he did a puppet show, or told a joke that didn’t entirely make sense, which made it even funnier. We always laughed with him not at him. He has always held a special place in our extended family.

As an adult, now 31, Simon has fallen in love with musicals and spends many of his days riding trains all over Sydney. Simon is kind, funny and asks more questions than anyone you’ve ever met. He’s also honest, except when it comes to the question of; “have you had lunch yet?” in which case the answer is always “no,” even if he has, in fact, eaten lunch. Three times.

Jessie, Simon and Clare at Dirty Dancing the Musical. Obviously. Image supplied.
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Stories about disability tend to do one of two things: they either tell a story of romanticised enlightenment, or a story of tragedy. There's beauty or there's pain, it's enriching or it's devastating.

The truth though, for people with disabilities and their families, is all of those things.

Because to have a child with a disability, or to watch a person with a disability grow up, is to experience a unique kind of frozen childhood.

The 'story' of what happens when children with a disability become adults does not fit into one genre, it spans over a thousand. Here are a just a few...

Gretel and Vanessa - "She knows she is different."

Gretel's name wasn't meant to be Gretel.

Vanessa, then 21, and her husband Brett, then 25, had chosen a different name, for a different baby.

Moments after Gretel was born, doctors took Brett outside the delivery room, and told him his daughter had Down syndrome.

"I remember being absolutely shattered," Vanessa Cranfield told Mia Freedman on this week's episode of No Filter. 

Scans had never picked up any abnormalities during her pregnancy. Being so young, she had none of the expected risk factors.

Instead of the little girl's name they had planned to use, Vanessa and Brett chose to name their new daughter after the smallest child from The Sound of Music, which had been on television the night she arrived.

Vanessa Cranfield and her daughter Gretel. Image supplied.
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"I felt more like I'd lost a baby," Vanessa says. "100 per cent you go through the whole grief process."

With that said, Vanessa recalls feeling unshakeable in her belief that she and Brett would cope, "It wasn't something I thought 'we will never be able to get through this'".

And she has.

Gretel is now 22, and attends college two days a week. She did well at a mainstream public school, and for years had a great visual memory and remembered everyone's birthday.

For a time, the family lived in the UK. "We could have dropped her off on one side of London and she would have found the McDonalds that she liked on the other side of the city," Vanessa says.

As Gretel grew up, she was always behind in terms of milestones, and Vanessa says as a mother she was "spared a lot of pain that you might have with a teenage girl". Gretel's never been interested in boys, and never snuck out to go to a party. But in adulthood, things have changed entirely.

Listen to Vanessa Cranfield's raw description of raising Gretel on No Filter. Post continues after audio. 

A few years ago, Gretel had a breakdown. While she had learned to read and write, was very verbal, and was becoming increasingly independent (like Simon, she loved trains), everything came crashing down in early adulthood, when she was struck by severe depression and anxiety.

"She stopped talking, eating, sleeping and toileting when she had a breakdown," Vanessa says. She stopped leaving her bedroom. She stopped socialising. She stopped working. Vanessa says Gretel's anxiety is visible, pulsating through every inch of her body.

Vanessa and Brett are unclear about exactly what happened to trigger Gretel's breakdown; perhaps something happened to her that she can't communicate to them.

"Maybe some of her breakdown was a self realisation that she's not the same as everyone else. She doesn't have the same advantages. Like the people she went to primary school with, they've gone off to Uni, had children some of them..." Vanessa says.

Vanessa and Gretel go to the same cafe every morning. Holidays are hard because Gretel doesn't like being away from the cafe, with the same people, and the same sights and smells. When things are disrupted, she sometimes descends into a meltdown.

One of Gretel's two younger brothers, 17-year-old Max, recently took her to the movies. There was confusion, and when a credit card didn't work, Gretel became inconsolable. Her reaction was a mixture between a toddler's tantrum and a panic attack, and her brother practically had to "carry her home".

Gretel interacts with an adult world and is faced with adult crises while living in an adult body. But adulthood for Gretel is never going to look like it does for most young women. And mothering a child for whom adulthood, in the traditional sense, will never come, is not covered in parenting books.

Most parents of children with a disability have to make it up as they go along.

Sophie and Amy - "Mum, I don't want to have Down syndrome."

"I'm going to wake up and it's going to be a dream."

That was Amy Silverman's first reaction when she heard a doctor mention that her daughter had Down syndrome. What followed was the sincere belief, "I had ruined my life, [my husband's] life, by bringing this imperfect child into the world," Amy told Hillary Frank on The Longest Shortest Time podcast.

Now Sophie is 13, and Amy cringes when she thinks about how she dealt with the news. Amy came from a family where you were judged by how well you held yourself during dinner time conversation, and at first she thought of Sophie's limitations as far more rigid and ubiquitous than they actually are. She remembers not expecting Sophie to have her own likes and dislikes - and it took her seven years to discover that was definitely not the case.

Image via Amy Silverman.

Sophie's favourite class is lunch. She loves the colour purple, and also Piglet from Winnie the Pooh. She takes risks with fashion and genuinely does not care what the other kids think. Sometimes, Sophie will ask her mother to pull up to school playing the opening song from La La Land, and will perform a dance for anyone who will watch.

But with age has come a painful self-awareness. "I don't want to have Down syndrome," Sophie said to her mother recently. She wanted her classmates to know, too.

Growing up has always been an exciting prospect for Sophie - she loves bras and has desperately been awaiting the arrival of pubic hair. Amy reasons that this might be because as her body grows, Sophie thinks "she'll catch up developmentally". If she looks like a woman, she thinks she will be the same as her mum and other women she knows. When Amy spotted one, lone pubic hair on Sophie's crotch, she said her response was akin to being told she was going to Disney Land. Sophie then jumped in the shower, elated by the new discovery, and started singing her ABCs.

"I have a child who has pubic hair and sucks her thumb," Amy says. "She's... caught between two worlds."

The sexual development of children with disabilities is also something that's rarely discussed publicly. What happens when people with the mental capacity of children hit puberty and then adulthood, with the hormones and desires that come with those milestones.

Sophie currently has a boyfriend, Sam, who doesn't have Down syndrome.

While Amy isn't concerned about Sam specifically, she's come to worry that men without a disability will take advantage of Sophie.

It's quite surprising, then, that one of the things Amy desperately wants for Sophie, is for her to have a fulfilling sex life. "I want my daughter to fall in love, get married and have great sex... because if anybody deserves it, it's Sophie," Amy says.

"Sophie is such an incredibly, loving, giving, wonderful, physical person... that that would be the natural sort of extension of it. And if she can't go to medical school or be a radio producer or even dance on pointe, I want her to have as fulfilling a life as possible."

But Amy knows her wishes for Sophie might not be realistic. No matter how much Sophie's body changes, or how much she literally embodies adulthood, the "gap between her cognitive development and her body is never going away". And that's a never-ending challenge.

Our Michel - "She just wants to live like anyone else."

When Beryl Stephens was giving birth to her daughter, the umbilical cord emerged before the baby's head.

Umbilical cord prolapse, where the cord is trapped against the baby's body during delivery, is rare, and if not treated immediately has the potential to cut off the oxygen supply to the baby. In some cases, it can result in brain damage.

As a baby, Michel was beautiful. She had bright blue eyes, olive skin and a mischievous smile. It wasn't until Michel was two that Beryl and her husband Phil began to notice her behavioural abnormalities.

Nothing ever showed up in scans, but her symptoms of developmental delay were clear. Her language and speech were impaired, and her social and emotional skills were far behind that of her peers. She had severe behavioural issues and didn't fit into mainstream schooling.

It's hard to describe Michel's disability without very specific anecdotes.

Michel. Image supplied.

When she was eight, Michel was bored at one of her brother's birthday parties, so decided to play with matches. Unaware of how flammable her dress was, she suddenly caught fire. Even today, she proudly shows off her burns.

Once when she had a cold, she walked up the street and alarmed by her breathlessness, called an ambulance because she was concerned she was having a heart attack. Ever since, she has been fascinated by ambulances.

In her teenage years Michel approached her house and heard the phone ringing. Unable to unlock the door immediately, she smashed the front window and ran inside. When her father asked who it had been on the phone, she replied, “I missed it!”

Michel is now 59, and her mother has passed away. Her father Phil, now 91, says the biggest challenge when it's come to raising Michel has been, in a word, "boyfriends".

"She has this need to have someone who belongs to her," Phil says. "She's quite possessive of people. Even friends... she'd overpower them, and then she'd lose them, and that would bring on temper tantrums."

"It was frustration... it was frustration for her. It's an awful thing. She just wants to live like anyone else."

When Michel was in her early twenties, she decided she wanted a baby. Her parents both knew she did not possess the skills required to raise a child. Not by a long, long, long shot.

Michel has always changed her mind a lot. Fearful that her daughter could not fully comprehend the consequences of having a child, Beryl would slip the contraceptive pill into Michel's morning cereal. Michel finally discovered what was happening and, determined as she was, stopped taking The Pill.

Before long, she fell pregnant to a man who was also intellectually disabled. Nine months later she gave birth. It was only a matter of hours after the birth before Michel agreed her mother and father would raise her son.

Michel's son was born with his own intellectual disability, one even more severe than her own.

As a sexually mature and active adult, Michel had so desperately wanted a baby, but once her baby was in her arms, Michel didn't have the desire or capacity to look after a child. She could barely look after herself. Michel is our aunty - our father's sister. And her intellectually disabled son is Simon, who you met at the beginning of this story.

Simon, Michel's son. Image supplied.

31 years later, Simon's primary guardian is his - and our  - 91 year old grandfather. Simon spends a few days of the week in a group home, which he doesn't mind, but he'd rather be with Pop. Everyday is a struggle between valuing Simon's freedom and independence, and desperately wanting to keep him safe.

***

For parents with children who live with an intellectual disability, adulthood as we understand it might never come.

Simon, Gretel, Sophie and Michel all exist in adult bodies, face adult problems and navigate an adult world, but their challenges and frustrations aren't like those of the adults around them.

Their parents face an ethical minefield, with thousands of questions and no set answers.

Their stories might make us uncomfortable. They're messy and they're hard and they're infinitely complicated.

But the common thread that ties all these stories, is the extent to which these four individuals have enriched the lives of everybody around them. They are, as our Gran insisted, a gift.

Sometimes in life there is no right and wrong, there's only what you think is best for your child.

"I enjoy being with Gretel because she teaches me," Vanessa says. "I learn so much. I still learn a lot." And when it comes to intellectual disability and adulthood - we're all still learning.

Listen to the full episode of No Filter with Vanessa Cranfield.

This content was created with thanks to our brand partner Telstra Smart Home.

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