Ireland's invisible disability

Children who are born deaf face a huge array of problems which can affect the entire family unit, writes Sheila Wayman

THE CONSTANT chatter you'd expect from three young children is noticeably absent in the home of the Cunningham family. Having arrived back the night before from a three-week holiday in Portugal, they are reacquainting themselves with favourite toys.

Their glowing tans and sun-bleached hair are at odds with the grey, drizzly day outside their Castleknock home in Dublin.

Seven-year-old Harry, who is mad about Gaelic football, comes in to the living room of the semi-detached house in Riverwood Green to sit on the sofa with his ball and gloves, and silently observe the visitor. Five-year-old Karla sits on the floor doing a jigsaw, while Jessica, who has just turned two, is in and out of the room, pushing a doll in the toy twin-buggy she got for her birthday.

All three have what is sometimes referred to as the "invisible disability". They are deaf.

Their parents, Audrey and Richard Cunningham, knew nothing about deafness before their children arrived, with no known cases on either side of the family. That is quite typical. Two babies are born deaf every week in Ireland, and 90 per cent of those are to hearing parents.

All babies should be screened for hearing problems in maternity hospitals, as is done in the UK and other countries, says the chief executive of the Irish Deaf Society, Kevin Stanley.

"A deaf baby doesn't acquire language in the same way as a hearing baby," he says, communicating through an Irish Sign Language (ISL) interpreter who acts as his voice down the phone. "So if parents know a baby is deaf, at least they can be prepared if they get the right information and the right support. If a baby is exposed to sign language at an early age, they are going to acquire language through their eyes."

Audrey began to suspect there was a problem with her eldest son's hearing when he was coming up to six months old. Her maternity leave was over, and she had just returned to work as an accountant with the National Lottery. When she came home in the evenings, despite her clattering in across the wooden floors of their house, she noticed Harry "would never respond until he saw my face".

When she brought him for his six-month check-up "they said he was perfect, and it was just as I was walking out the door that they added, 'except he failed his hearing test'."

She was told to bring him back at nine months, but she was not happy with that. She went for a private referral and they were sent on to the cochlear implant programme at Beaumont Hospital.

There are lots of different causes and degrees of deafness. Children who are profoundly deaf due to problems in the inner ear (cochlear), where vital hair cells which should pick up sound are severely damaged or absent, may benefit from an implant. In conjunction with a transmitter worn externally on the head, the implant sends an electrical message directly to the hearing nerve, bypassing the damaged or absent hair cells.

"By the time Harry got an appointment, it was around nine or 10 months, but we knew at that stage that he was deaf," she says. Tests at the hospital confirmed that he was profoundly deaf.

"It was a huge shock. We knew nothing about deafness. I think that if we knew then what we know now, we would have been more worried," she says candidly. "We started to get information in little pieces", mainly from the visiting support teacher who is assigned when a child is diagnosed. It was some time before they realised that he might never be able to speak.

Harry's diagnosis came when Audrey was pregnant with the couple's second child, Karla. Within three months of her birth, she was found to be profoundly deaf too.

"It was a big disappointment," says Audrey. "But you have two young children, and you have to get on with it."

At that stage the couple learnt the cause was genetic. There was a one-in-four chance that any child of theirs would be deaf. So, statistically, they were unlucky that three years later their third child, Jessica, was diagnosed, within seven days of her birth, as profoundly deaf in her right ear, but with some hearing in her left.

Fitted with a hearing aid at three months, Jessica's hearing is on the borderline for eligibility for a cochlear implant. Her siblings have had contrasting experiences with theirs.

"A cochlear implant is not a miracle cure," explains Audrey. "It is like a high-tech hearing aid. They are always going to be deaf."

After Harry had his first implant at the age of two, he could hear noises but was not turning it into speech. "His second ear was implanted a year ago, but it is still very slow progress

"We are starting to sign big time with him, whereas we had concentrated on speech. We had baby signs which was fine up to the age of two or three, but at four we decided we had to start signing as he was getting very frustrated."

She and her husband have both done a year's course in Irish Sign Language (ISL), which has given them the basics.

Harry started to attend St Joseph's School for Deaf Boys in Cabra when he was four, where he is taught both ISL and speech.

When Karla got her implant at 20 months, the initial tests were much more promising than in Harry's case. For the following two years her speech was slow but then progressed to such an extent that her parents decided to try her in a mainstream school, St Mochta's in Porterstown.

"They have been brilliant with her," says Audrey, who was impressed at how quickly everything was put in place for her. "She has a resource teacher she'd go to for an hour a day, and a special needs assistant who is in class with her. She is hearing through the cochlear implant and her teacher uses a sound surround system, from which all the children benefit.

"Her speech has come on brilliantly, and she's keeping up really well. We are delighted that we made the decision to send her there."

The Irish Deaf Society would like to see research conducted into the merits of mainstream schooling versus specialist education for deaf children. Stanley says mainstream schools have been quite successful for some children, although in other cases it has not worked so well.

Some 80 per cent of the deaf community have literacy problems, and Stanley attributes that partly to the decision in the 1940s to stop using sign language in teaching of the deaf, and to introduce an oral system instead. "Deaf education took a nosedive. It was a huge mistake," says Stanley. ISL has since been reintroduced in schools for the deaf, and the society is promoting its use, not only in education but in all aspects of public life.

Like 90 per cent of deaf couples, Stanley and his wife have hearing children. Aged 16 to 10, the three children had no problem learning ISL within the family home on the Navan Road in Dublin, and picking up English from outside.

The Cunninghams have had little involvement with the wider deaf community in Ireland, which the society estimates at almost 60,000, when the hard-of-hearing and family members are taken into account.

"It is not because we did not want to, but because of our hectic life with three young children," says Audrey. Their family life is much the same, she says, as it would be with hearing children - "There is nothing we can't do."

Now job-sharing, Audrey tries to organise the children's visits to hospital, speech therapists and so on, on her alternate weeks off. Richard, who is a self-employed plumber, takes on less business the weeks she's working. "There are also a lot of decisions to be made. Every stage of their development brings a new decision: implants, education . . ."

The couple are from Co Westmeath, and hope to move back there in the next year or two. They have just got planning permission for their new house.

"The big decision now is going to be schooling for Harry. I know the Disability Act says that everybody should get their education in their local school.

"So I'm hoping we will be able to get a sign language teacher and a resource teacher in the local school. Karla would probably continue with the speech side of it, but Harry would need a sign language teacher in the school.

"I suppose," Audrey smiles, "that will be my next project."

• swayman@irish-times.ie