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ASK ANY parent of a deaf child about what they’ve learnt since they first found out their child was deaf, and you will be guaranteed a deluge of stories, information, advice and even jokes.
Indeed, for parents of newly diagnosed deaf children who have to embark on the long journey towards finding the best combination of language, educational, technological and social supports for their child, the opportunity to talk to other parents who have endured the same emotional merry-go-round for many years is a highly valuable and – some say – overlooked source of support.
Liza Crotty is mother to 2½-year-old Tom, who is profoundly deaf. “When Tom was first diagnosed at eight months, my world fell apart,” she says.
“Looking back now, I have no idea how I made it through the first six months, it was a crazy busy time trying to find out what the next steps were, researching deafness and treatments, communication options, and appointments after appointments to attend.”
But Crotty’s story is a positive one. After a whirlwind of assessments, time spent absorbing new information and intensive training in Irish Sign Language, she reports that Tom – now with a cochlear implant (CI) and a hearing aid in his other ear – has a level of language not far off the average for a hearing child.
But she also credits being involved in a new group for parents of deaf and hard-of-hearing children in Ireland called Sharing the Journey, which had its official launch last Thursday in the Mansion House in Dublin.
“Being able to talk to other parents about their experiences, and for Tom to be able to meet and play with other deaf toddlers, has been great. They really have a wealth of practical information for the new parent, and when Tom was going for his CI operation I was able to talk to parents who had already gone through it.”
The organisation, which is parent-led and run by volunteers, has a membership base of 60 families, mostly in the Dublin area, but hopes to open up branches around the State.
To date, it has run several programmes, such as regular baby and toddler playdates, but is planning more, including a pre-school skills programme for three to five year olds. It has received some funding from the Katherine Howard Foundation and Dublin City Council.
“Thousands of parent support groups have been started all over the world by parents wanting to talk with other parents about similar issues, wanting to share their knowledge and experience,” says Teresa McDonnell, chairwoman of the group and one of its three founding members.
“As one of our parents put it: ‘I have learned so much over the last 20 years, so much that I would have loved to have known when I had my little baby in my arms and all I wanted was answers, so it would be wrong not to share that with other parents’.”
Even now, getting those answers can be very difficult, a fact seemingly acknowledged by some professionals in the field of deafness.
Siobhán Corcoran, mother of three-year-old Steven, says that when he was diagnosed as deaf at the age of 16 months, the audiologist who tested him said to her: “Don’t be upset, or sad. He is going to have a fulfilling life. He will drive, have a girlfriend, go to university. The person I feel most sorry for is you, because you will spend the rest of your life battling for him.”
By the time she joined Sharing the Journey, Steven was about to undergo his cochlear implant operation, but Corcoran was particularly happy to get the chance to see other young deaf and hard-of-hearing children of different ages, some whom already had CIs.
“Prior to Steven’s own operation I had the chance to speak to other parents who had been through it, which was reassuring.”
In general, the choices faced by parents of deaf and hard-of-hearing children may be very stark. For instance, should they learn and use sign language? Should they get a cochlear implant? Should they send them to a local mainstream school or a specialist deaf school that might be many miles away?
McDonnell says Sharing the Journey has no agenda other than to respect and support all parents’ decisions in how they raise and educate their children – no matter what they are. It also wants to provide access to objective, unbiased information about all the options available, including the use of Irish Sign Language.
Of course, parents who look for information will also hear many views – many of them strongly argued – about what they should do. But they are, as McDonnell points out, “mainly directed by professionals and non-parents”.
“Sharing the Journey recognises that parents learn, through life experience, that they are experts in their own child’s life.”
She also points out that relationships between parents are equitable in the sense that they share similar experiences, unlike in a professional-client one, and so provide the crucial human dimension of support that professional services lack.
Indeed, based on feedback from those who attend its baby and toddler playdates, parents gain valuable practical tips and a sense of security in knowing there is someone friendly they can call for support. But above all, they experience feelings of empowerment, reduced isolation and even a sense of “normalcy”, says McDonnell.
“Parents say simply meeting with another parent is helpful in itself. They are relieved to find someone else they can relate their lives with and whose similar experiences prove that there is nothing abnormal about their situation.”