Genevieve's journey to communication
After contracting meningitis at five weeks old, Genevieve has been through a lot. Now she’s a bubbly eight-year-old and has begun to use speech and sign.
In the playground at school pick-up time, one of Genevieve’s classmate’s parents approached her mum Mary and asked if she’d help out at the school fair. “I thought, ‘Are you serious?’” says Mary, who’s a single parent. “‘I have to drive to Manchester Hospital three times this week and you want me to bake cookies?’ In the playground, every child was always healthy and able-bodied with two parents. They cared about things that I couldn’t even think about caring about.”
Genevieve had a very difficult start to life with a meningitis diagnosis at five weeks old. “We’ve really been through it,” explains Mary. “She had seizures up until recently and she’s partially sighted.
“When I first found out she was going to be profoundly deaf too, it was like being swallowed by a black hole. The charity Meningitis Now funded some counselling for me. After everything we’d gone through, to be told your child is completely deaf, I just thought ‘Are you kidding me?’”
Mary was lucky enough to have a very supportive family. “At one point, I remember I had to have a few weeks’ break. I gave my mum the children. Admitting you need help is the hardest part. In my head I had planned out the kind of parent I wanted to be. When that didn’t happen, it was hard.”
Genevieve got her cochlear implant at just eight months old. During the treatment for meningitis, Mary was told her ears had begun to ossify. This is where, if a child has hearing loss after meningitis, there’s a risk of excess bone growth in the cochlea after recovery which can make hearing loss worse and treatment more difficult. “The doctors said she wouldn’t be able to have the implant if this happened,” Mary explains. “It was very scary because the operation is so close to the brain. We’d refused other operations after the meningitis because she’d been through so much, but this one was important to us.”
Looking back, Mary wishes she’d known that cochlear implantation isn’t a quick fix. “The implant was turned on and it wasn’t like you see in the news. Nothing happened. Those internet videos are so misleading. It took a long time and a lot of work for Genevieve to process sound.”
In fact, it has taken Mary and Genevieve eight years of hard work. “In the beginning I did a lot of singing to her,” Mary explains. “The doctor said she’d be more likely to pick up on sing-song noises. I used to get in trouble with my neighbours because we’d make so much noise!
“We were also told about the importance of play, and I loved that because I’ve got a Media Performance degree. My whole family did a sign language course, but even before I did the course, I’d made up my own signs to use with her.”
Mary worked hard to put all the advice from Genevieve’s support staff into practice, but it didn’t always feel like it was working. “There were many times during the journey when I wondered if she would be able to communicate at all. I thought, ‘Oh my god, she’s not going to ever talk, she’s never going to be able to tell me how she feels and she might get manipulated because of it.’ But I just kept going.
“The small wins are the best wins. They can catch you off-guard. My favourite was the first time she signed ‘sorry’ to her brother through gritted teeth and with an upset look on her face. That incorporated everything for me. She was communicating, she understood the emotions of the situation, she knew she’d done something wrong, but she wasn’t happy about it. It was amazing.”
Finding the right school for Genevieve has also been a journey. “When it came to choosing a school, we chose her brother’s mainstream school,” says Mary. “I don’t drive so it was the only accessible place. Genevieve was the first disabled child they’d had, and they were supportive with her Education, Health and Care (EHC) plan, but the curriculum wasn’t catering for her and she was slipping further and further behind. She was good at communication without speech; she’d get up and show you, she has a very emotive face and uses expressions. But her friends babied her. They were too young to slow down and learn how to communicate with her.”
Feeling lost, one day Mary turned to Google and found a deaf-specialist school, which uses a total communication approach, not far from their home. Luckily, Genevieve could get a taxi there. “It’s fabulous,” says Mary. “Since moving at the beginning of Year 2, she signs a lot more and her speech has come on hugely. They use a radio aid which really helps as she gets distracted easily. Every single person at the school has to know sign language. I actually asked them once, ‘What, even the cleaners?’ And they nodded.”
Now Genevieve’s eight years old, Mary feels like the family can see the light at the end of the tunnel. “She speaks differently, she’s still struggling and she’s very behind,” Mary says. “But her speech is progressing all the time. She’s just started stringing sentences together, she’s started asking ‘Why?’ and ‘When?’ She sings now and loves Abba!
“She’s learning to write her name, and she’s working at school on learning to socialise. She even has a best friend now!
“We make jokes in my family all the time about the things Genevieve will go on to do. I just know she’s going to change the world.”