Health

‘When I try to talk to my grandad words won’t come out’

Red Elizabeth Jolley

Nineteen-year-old Red is a student, a fan of metal music and aspiring make-up artist. As a child, she was chatty and full of life – but only when she was at home. When she left the house, everything changed.

At a secondary school open evening in Kettering, Northamptonshire, a teacher was playing a game with some prospective students and called over to a girl standing nearby to ask if she wanted to join in.

Red Elizabeth Jolley shrugged “OK” and walked over. Her parents exchanged excited glances behind the 11-year-old’s back. Red steadied herself and tried to stay cool, thinking, “You just did a normal person thing.” Later, when Red’s mum, Carrie, got home she updated her Facebook status to say how proud she was of her daughter.

That little word “OK” represented a breakthrough, as for years Red had maintained almost complete silence outside the house.

At first, her parents thought she was shy. At nursery school, the only time Red would speak to the teacher was when the other kids were playing outside, so no-one could overhear. But they realised it was more than this when a new teacher arrived, and complained that Red was now refusing to talk altogether.

At home, she was a lively child. Her parents remember her as confident and relaxed, with a wicked sense of humour. They couldn’t understand what might cause her to behave so differently at school. And they continued to hope that as time went on she would relax, and become her usual chatty self.

After the first year, however, she still wasn’t talking. It was a mystery.

Now at university, Red speaks quietly but confidently and is quick to break into a smile.

Growing up, she mostly remembers being jealous of other children. It seemed as though there was a glass wall separating them, leaving her feeling she was watching from the outside.

Her frustration was overwhelming. Holding every word inside all day meant that they had to spill out somewhere. Red remembers coming home from primary school and screaming, crying and shouting.

As soon as you leave the house, the world expects you to talk.

“Communication with others is at the heart of our social functioning, enabling us to express ourselves, build and maintain relationships and get our needs met – all of which are important for our well-being and resilience,” says Anita McKiernan, adviser on selective mutism for the The Royal College of Speech and Language Therapists (RCSLT).

But the expectation that she would talk made Red uncomfortable.

An unfamiliar face or an unexpected question, were enough to trigger extreme anxiety.

Eventually, she got a diagnosis of selective mutism. Often dismissed as naughty or rude in the past, children with selective mutism are now understood to have a severe form of anxiety which means they can only talk to certain people.


Selective mutism

  • The condition affects about one in 140 children
  • It is slightly more common among girls than boys
  • There is no evidence of a link to trauma or abuse
  • It often becomes obvious when children enter a new place, such as nursery, away from the family
  • It can affect adults too

As she grew up, Red was happy talking to her parents and a few family members, but if anyone else tried to talk to her, the words would get stuck in her throat and gag her.

“I shrivel into myself and just freeze,” she says. “My brain overthinks for a minute and then stops. Then it overthinks again.” On repeat.

The girl who couldn’t speak joined the Brownies (the younger version of the Girl Guides) by recording her pledge at home and playing it in front of her troop. She easily picked up her sign language badge. But she never said a word out loud.

Everyday tasks were surprisingly difficult, so the family came up with solutions. Red took laminated cards to her friends’ houses, so she could tell their parents if she wanted a drink, had fallen over or wanted to go home. Flashing a “yes” or a “no”, she could tell them if she wanted to drink orange juice or water.

So that night at the school open evening was a turning point, a fresh start for Red.

As her confidence gradually built up at secondary school, she answered teachers and built friendships. Both mother and daughter remember a time when Red was threatened with detention for talking in class. The family got a takeaway as a treat that night. Carrie jokes, “I’m probably the only parent that’s ever been wishing that some teacher will phone me saying your child swore at me today. Brilliant! Well done: I’ll reward her!”

Although she still suffers from anxiety, Red spoke to me in a busy coffee shop in the centre of Birmingham, where she is a student. She has a good group of friends at university and has given talks in front of rooms full of people. But there are still a handful of people she’s never spoken a word to.

Her grandad is one of them.

When Red’s parents realised that she was selectively mute, they began researching the condition and looking for ways to help their daughter. They went to speech and language therapists, and to psychologists, and tried hypnotherapy and support groups. In 2009 the family invited a BBC crew into their home, in case it would help any other puzzled parents out there to understand their child’s behaviour.

Image caption Red and her grandparents

The resulting documentary shows John, Red’s grandad, trying to communicate with his granddaughter. A speech therapist suggests that he leaves voicemails which Red can respond to. As he listens to the first four words she has ever spoken to him through the tinny speaker of his phone, he grins.

The family said they kept this up after the documentary, but it eventually petered out.

Red now simply does not speak to her grandad. In messages on social media, people ask if she’d be able to speak to him on his deathbed, if she’d ever just tried to speak to him, if he’d upset her somehow. The answers are: no, yes, and no.

“I want to speak. I would if I could. I am trying,” she says, quietly.

When she travels to his house, Red will chatter the whole way in the car and sing along to music. But as soon as they arrive and the minute the front door opens she is silent. “She’ll start curling in, looking uncomfortable with her shoulders slumped, looking down a bit,” says Carrie, her mum. “She will change completely. How she stands, how she walks. It’s very dramatic.”


Where to get help

Ispeak

Finding our voices

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Although her grandad works extra hard to make her feel comfortable, Red’s mouth will stay firmly shut while she is in the house. If they stay overnight, the most Red can manage is a loud whisper to say goodnight to her mum. She just can’t relax until the car door slams and they get on the motorway.

Carrie talks casually about how Red will simply nod or shake her head to get her point across, but it’s clear that she finds it difficult that her only child has never spoken to her father. John himself has called it “heartbreaking”.

After the documentary aired, Red remembers with amusement a letter which the family received, in which a viewer said it was no wonder she was mute, with a name like Red Elizabeth Jolley. But in reality the cause of selective mutism is unknown.

Traumatic mutism comes on after a negative experience and affects communication with everyone. But selective mutism only affects talking to certain people, and there is no logic to who is, or isn’t, on the “list”.

Although she can now chat away, Red’s anxiety has had one long lasting, irreversible effect.

When she was 12 years old, Red was walking back from a netball game and slipped. She didn’t cry much, or make a fuss, which Anita McKiernan says is typical of people with selective mutism. She has worked with children who have broken bones and not told anyone until they got home.

Red had dislocated her knee. When it came to treatment, she was so anxious she didn’t allow anybody to touch her leg. She would not communicate with doctors, and did not give consent for treatment.

She would cry if somebody walked in the room too quickly, worrying they would move the air over her knee. Her anxiety meant she needed to be sedated for an MRI scan. The pressure on the family led to her dad signing off work from the stress.

After missing five months of school, two major operations and physiotherapy, Red now walks with a limp.

“All over a dislocated knee,” her mum sighs.

When she was growing up, there were about eight people who Red could talk to without struggling to get the words out. Over her teenage years, her anxiety lessened and she can now speak to new people.

But just as with her grandad, there are a few aunts and uncles who she’s never spoken to. Red thinks she’ll never be able to overcome this.

She says that her mum used to worry non-stop about her – how she would cope with a job interview, order food in a cafe, or go on holiday – but is now more relaxed. “She’s fine,” Red says. “She’s like: ‘You’ve got this.'”

Carrie agrees. She’s no longer worried. She knows Red is happy and studying hard.

“Not having her at home, it’s very quiet – ironically,” she laughs.

BBC Crossing Divides

A season of stories about bringing people together in a fragmented world.

You may also be interested in:

Margot Noel has a condition called misophonia, which literally means “hatred of sound”. It can be so disturbing that she has to wear headphones or ear plugs to protect herself.

Read: ‘The crunch of an apple makes me want to run away’

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https://www.bbc.co.uk/news/stories-48557674

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