Miss-Delectable
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Discovering their son was deaf sent one family on a literary journey - Times Online
The other day, John, who is 5, told his mum that she was stupid. “You are stupid!” is precisely what he said, and while his mum pointed out that this isn't a polite thing to say, at the same time she was delighted. Stupid is a new word for John. No one had taught it to him, yet he used it in the correct context.
John is deaf, and his parents, Joanne Zellweger and Gerard Featherstone, are used to having to teach him words through painstaking repetition and imaginative games that explain their meaning. For John to learn a new word on his own - by hearing another child use it - is an exciting moment for his family: it shows that he is becoming more adept at picking up language.
Two days after John was born Joanne was told that she had contracted cytomegalovirus (CMV) during pregnancy, that she had passed the virus to her son and that he was likely to have progressive hearing loss. At 16 months his deafness was classified as profound. His parents were shocked at the speed of the deterioration, but they are pragmatic people. When doctors suggested that John might benefit from a cochlear implant, a small electronic device implanted in the bone behind the ear that improves hearing for some deaf people, they agreed that he should be assessed to see if he was suitable. He had the operation when he was 2, and he is now a confident and friendly child who goes to a mainstream school and loves musicals.
That is not to say that the past few years have been easy, or that the challenges that John faces have evaporated. Cochlear implants do not cure deafness; John remains deaf when the device is not switched on, and his vocabulary is more limited than that of most children his age. Inevitably his deafness has changed his family's life, although, rather than regarding it as an issue that has to be dealt with, they have come to look at it as an adventure in which they all play a part.
The latest instalment of this is an illustrated children's book, My Brother John, written by Joanne from the perspective of her seven-year-old daughter, Caroline, and designed to explain cochlear implants to other children, and to provide disabled children with a peer. It's jolly, a celebration of John's social skills and of the commitment it has taken to get him to this stage.
“People think that children get an implant and can hear straight away and start speaking,” says Gerard. “An implant isn't a miracle. They are not for everybody. They give you access to sound - learning to communicate through speech takes years of hard work from the parents as well as the child. What you learn is that hearing and listening are different things. With the implant John can hear a lot of things, but for him to learn language you have to make sure that he's listening.”
Unlike hearing children, John doesn't pick up words by overhearing them, and it can be difficult for him to understand the subtleties of language; deaf children can be very literal in their comprehension and may struggle with abstract concepts. But without language a child struggles to communicate in mainstream society.
“Everything you learn at school is language-based,” says Joanne, who has retrained as a teacher of the deaf. “In school deaf children often miss things. If there's no background noise John will hear things, but in a noisy classroom he can't filter out the background noise. The implant would get all the speech sounds, but what he understands depends on what he does with them. He has no awareness of directional sound, so in the classroom he doesn't always know immediately who is speaking - and if other children can't understand you, there are implications for making friends.”
When Gerard and Joanne, both 42, realised that John was struggling to pick up language - despite fortnightly speech therapy - Gerard gave up a senior job in marketing and took six months off work to help his son to adjust to school. “It has changed my perspective - time is the most important thing,” he says. “Giving John time has helped to settle him in school.”
The alternative use for the family finances was an extension to the house, says Joanne. “An extension wouldn't have helped John to speak.”
Prepositions are especially difficult for deaf children to grasp, and teaching John to understand “up” and “down” took countless journeys up and down the family's stairs - each accompanied by the appropriate word - at their home in Gatley, near Stockport in Greater Manchester. When Gerard first took John to school, he always parked “under” a tree or “next” to a tree, and stressed the words as he spoke them. The family uses reading, listening to music and singing as ways to “get language in”, Joanne says.
“No one has any shame in this family. You have to be outgoing. Even in a car park I'd say, ‘Is that Mummy's car? No,” skipping along as we passed each car, saying it over and over. Sometimes I think I don't want to speak any more.”
The family have learnt to sign; this allows John to communicate with those in the deaf community who don't speak. He lip-reads, too. Gerard and Joanne have also attended residential courses and recommend seeking out other parents of deaf children. “It's nice to go up to someone and say ‘How deaf is your child?' and for it not to be unusual,” says Joanne.
“People with no experience of a deaf child often say ‘It's amazing what they can do these days.' They are trying to be helpful but if you're not at that stage it can be easier to talk to people you don't know but who are in the same situation.”
The John Tracy clinic in Los Angeles was another valuable resource. They spent three weeks there, during which time John was given intensive speech and language therapy, while Caroline took part in its siblings programme.
The experience gave them a better understanding of their children's needs, Gerard says. “Because one of John's senses isn't being stimulated, he seeks out extra senses to compensate - he likes to be cuddled and touched. The clinic also gave Caroline a chance to discuss her feelings in a supportive environment. She and John get on really well and she is protective of him, but now she is much better at telling us when she is not happy about something.”
Recently John tapped his implant and signed “birds” to his parents; he could hear them singing. He can read three words: kipper, dad and mum, and can count to 20. “These are massive milestones for us,” says Gerard. “We wanted him to be forthright, to be able to go up to people and say 'Hello, I'm John'. He does that.
“His life isn't defined by his deafness, and that's what we want to show.”
The other day, John, who is 5, told his mum that she was stupid. “You are stupid!” is precisely what he said, and while his mum pointed out that this isn't a polite thing to say, at the same time she was delighted. Stupid is a new word for John. No one had taught it to him, yet he used it in the correct context.
John is deaf, and his parents, Joanne Zellweger and Gerard Featherstone, are used to having to teach him words through painstaking repetition and imaginative games that explain their meaning. For John to learn a new word on his own - by hearing another child use it - is an exciting moment for his family: it shows that he is becoming more adept at picking up language.
Two days after John was born Joanne was told that she had contracted cytomegalovirus (CMV) during pregnancy, that she had passed the virus to her son and that he was likely to have progressive hearing loss. At 16 months his deafness was classified as profound. His parents were shocked at the speed of the deterioration, but they are pragmatic people. When doctors suggested that John might benefit from a cochlear implant, a small electronic device implanted in the bone behind the ear that improves hearing for some deaf people, they agreed that he should be assessed to see if he was suitable. He had the operation when he was 2, and he is now a confident and friendly child who goes to a mainstream school and loves musicals.
That is not to say that the past few years have been easy, or that the challenges that John faces have evaporated. Cochlear implants do not cure deafness; John remains deaf when the device is not switched on, and his vocabulary is more limited than that of most children his age. Inevitably his deafness has changed his family's life, although, rather than regarding it as an issue that has to be dealt with, they have come to look at it as an adventure in which they all play a part.
The latest instalment of this is an illustrated children's book, My Brother John, written by Joanne from the perspective of her seven-year-old daughter, Caroline, and designed to explain cochlear implants to other children, and to provide disabled children with a peer. It's jolly, a celebration of John's social skills and of the commitment it has taken to get him to this stage.
“People think that children get an implant and can hear straight away and start speaking,” says Gerard. “An implant isn't a miracle. They are not for everybody. They give you access to sound - learning to communicate through speech takes years of hard work from the parents as well as the child. What you learn is that hearing and listening are different things. With the implant John can hear a lot of things, but for him to learn language you have to make sure that he's listening.”
Unlike hearing children, John doesn't pick up words by overhearing them, and it can be difficult for him to understand the subtleties of language; deaf children can be very literal in their comprehension and may struggle with abstract concepts. But without language a child struggles to communicate in mainstream society.
“Everything you learn at school is language-based,” says Joanne, who has retrained as a teacher of the deaf. “In school deaf children often miss things. If there's no background noise John will hear things, but in a noisy classroom he can't filter out the background noise. The implant would get all the speech sounds, but what he understands depends on what he does with them. He has no awareness of directional sound, so in the classroom he doesn't always know immediately who is speaking - and if other children can't understand you, there are implications for making friends.”
When Gerard and Joanne, both 42, realised that John was struggling to pick up language - despite fortnightly speech therapy - Gerard gave up a senior job in marketing and took six months off work to help his son to adjust to school. “It has changed my perspective - time is the most important thing,” he says. “Giving John time has helped to settle him in school.”
The alternative use for the family finances was an extension to the house, says Joanne. “An extension wouldn't have helped John to speak.”
Prepositions are especially difficult for deaf children to grasp, and teaching John to understand “up” and “down” took countless journeys up and down the family's stairs - each accompanied by the appropriate word - at their home in Gatley, near Stockport in Greater Manchester. When Gerard first took John to school, he always parked “under” a tree or “next” to a tree, and stressed the words as he spoke them. The family uses reading, listening to music and singing as ways to “get language in”, Joanne says.
“No one has any shame in this family. You have to be outgoing. Even in a car park I'd say, ‘Is that Mummy's car? No,” skipping along as we passed each car, saying it over and over. Sometimes I think I don't want to speak any more.”
The family have learnt to sign; this allows John to communicate with those in the deaf community who don't speak. He lip-reads, too. Gerard and Joanne have also attended residential courses and recommend seeking out other parents of deaf children. “It's nice to go up to someone and say ‘How deaf is your child?' and for it not to be unusual,” says Joanne.
“People with no experience of a deaf child often say ‘It's amazing what they can do these days.' They are trying to be helpful but if you're not at that stage it can be easier to talk to people you don't know but who are in the same situation.”
The John Tracy clinic in Los Angeles was another valuable resource. They spent three weeks there, during which time John was given intensive speech and language therapy, while Caroline took part in its siblings programme.
The experience gave them a better understanding of their children's needs, Gerard says. “Because one of John's senses isn't being stimulated, he seeks out extra senses to compensate - he likes to be cuddled and touched. The clinic also gave Caroline a chance to discuss her feelings in a supportive environment. She and John get on really well and she is protective of him, but now she is much better at telling us when she is not happy about something.”
Recently John tapped his implant and signed “birds” to his parents; he could hear them singing. He can read three words: kipper, dad and mum, and can count to 20. “These are massive milestones for us,” says Gerard. “We wanted him to be forthright, to be able to go up to people and say 'Hello, I'm John'. He does that.
“His life isn't defined by his deafness, and that's what we want to show.”