Parents of children with hearing difficulties face many challenges, not least of which is determining what sort of school environment would be most beneficial to their child, writes SHEILA WAYMAN
AVRIL MADDEN was sitting in the kitchen of her home in Naas, Co Kildare, when she was alerted to a sound she had never heard before.
“Mum, what’s that noise?” she asked. “It’s loud.” It was simply her mother, Marie, peeling carrots – a tiny detail in a world that was revealing itself to Avril after she had a cochlear implant at age 15, due to her profound deafness.
The implant “has had a huge effect on me”, says Avril (19), whose hearing had deteriorated to the point where hearing aids were no use. The implant consists of a device put into the cochlear, coupled with a processor worn externally, that enables sound signals to be sent straight to the auditory nerve, bypassing the damaged part of the ear.
“It was a painful procedure but very worth it. It has boosted my confidence because before it I would not have the courage to meet people or go out and now I love to meet friends, both deaf and hearing, and I love to party.”
It has enhanced her enjoyment of dancing, the big passion in her life that started with ballet and progressed to hip hop.
“I have danced since I was five and plan on dancing till I die,” she laughs. “Before I had the implant I could only feel the vibrations and hear the music, but there was no clarity in the sound. Now I can hear the music clearly.”
Two babies are born deaf every week in Ireland and 90 per cent of them to hearing parents, who are unlikely to have any knowledge or experience of deafness. Without universal hearing screening at birth, which is standard in most developed countries, vital time is lost here before a diagnosis is made – most commonly after the nine-month developmental check-up.
Universal newborn screening was recommended in 2004 “as a matter of urgency” in a report commissioned by the then Health Board chief executives. It was being done on a pilot basis in three hospitals – Tralee, Castlebar and Sligo – at the time.
Seven years later, €1.9 million has been allocated in the HSE’s Service Plan 2011 for a phased roll-out of a universal scheme, starting in Cork University Hospital where approximately 8,900 babies are born each year.
“The exact expansion of the services after Cork University Hospital has yet to be determined,” according to a HSE spokeswoman, so it is likely to be some years before all parents can expect hearing loss in their child to be picked up within weeks of birth.
Early detection and treatment of hearing loss has been shown to be of enormous benefit because the most intensive language development takes place in the first three years of a child’s life.
Avril, the youngest of three children, was born in London before universal screening at birth was introduced in the UK, and she passed all the developmental checks in her first year.
“When she was about 17 or 18 months, I noticed there was something not quite right but I never thought of deafness,” says Marie. “She seemed to be dancing to music and babbling, but I became concerned when she started making strange noises.”
Avril was diagnosed with deafness at the age of two, some months after the death of her older sister, Colette, who had been born with a congenital heart defect.
The family returned to Ireland a year later and Avril was referred to Beaumont Hospital in Dublin, home of the national cochlear implant programme. However, she still had a level of hearing, boosted by hearing aids, and was not a candidate for an implant at that stage.
Marie talks about how she and her husband, Benny, “bumbled along”, trying to do their best for Avril but unsure of where to get resources and the best advice. “It is very isolating,” she says.
They sent her to a local mainstream primary school, where she floundered in big classes of up to 40 pupils.
“You can imagine the noise of the class with that amount of pupils for someone who is hard of hearing,” says Avril, who had four hours of learning support a week.
The possibility of her attending a specialist school for the deaf never entered the Maddens’ minds until a teacher at the national school mentioned it.
Initially, Benny was not impressed with the idea, says Marie – “he felt it would be isolating her from the local community” – but she was glad there was another option to consider.
They found St Mary’s School for Deaf Girls in Cabra, Dublin, “very positive and welcoming”. The teachers “know and understand the needs of a child who has a communication problem”, says Marie. “We had never been exposed to that.”
After consulting Avril, the Maddens made the difficult decision to send her in sixth class to the school in Cabra, which caters for boarding and day pupils, aged four to 20.
Although it would mean a long commute, they believed the advantages of specialist teachers, classes varying in size from just three to six and the use of interactive whiteboards (rare in Irish schools at the time), outweighed the disadvantages.
So at the age of 11, Avril was introduced to the deaf community. She received one-to-one tutoring in Irish Sign Language at the school so that she could communicate with fellow pupils, although she is with a group who are taught through speech.
It has not been easy for Avril to keep friendships in her home town, acknowledges Marie. “She was sad about that from time to time, but it was not a big deal. She knows where she needs to be right now.”
Sitting the Leaving Cert this June, Avril has her sights set on studying bio-medical science at the Dublin Institute of Technology and hopes to work in a hospital laboratory after college. She believes she has the best of both worlds, being able to sign and speak, and having friends in both the deaf and the hearing communities.
“If I had stayed in mainstream, I would not have been exposed to the deaf world.”
The worlds of the deaf and the hearing are different, “but only because they communicate in different ways”, she stresses.
However, straddling the two worlds brings its own challenges. In social situations she does not always fully understand friends who learned to sign from early on and are too speedy for her.
“In the hearing world I’m also affected, because in a social situation it is hard to focus on many people speaking at the same time,” she explains. Accents can also be difficult to understand. “This sometimes makes me feel isolated.”
Marie is delighted with Avril’s progress and recalls how, when she was three or four, they had no idea what possibilities were ahead of her. She wants parents starting out on a journey with a deaf child to know that “anything is possible with the right supports and encouragement”.
Young people with hearing loss are being held back by the low expectations of the adults (parents, educators, family members) around them, says Caroline Carswell of Irish Deaf Kids (IDK). She finds that teenagers and young adults “feel very disempowered” about their ability to progress to further study and to the workplace.
Irish Deaf Kids organises life skills workshops aimed at empowering teenagers, by providing an opportunity for them to explore their needs and issues they face, as well as offering advice on working toward their life goals.
“Peer support and socialisation, a natural by-product of IDK’s workshops, develops the teens’ confidence and self-esteem,” Carswell adds.
Avril believes the challenge for deaf teenagers is to be heard.
“I feel that being deaf, you have to make a bigger effort to be heard, because sometimes it is not obvious that you are deaf and people can expect you to hear everything they say. You have to make it clear that you are deaf.”
Irish Deaf Kids is holding teen workshops in Dublin on February 19th and in Portlaoise on April 2nd. See irish deafkids.ie for details
