Children, parents, and professionals in partnership |
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Family Stories: Sarosha's Story "An AVT graduation – age 4¾" " "Daddy what's a dam?" I'm driving along and the latest in a long stream of questions, chatter and comment comes from my four and a half year-old daughter in the back seat. “It's when a river…,” I begin. “Hang on. Where did you hear that word?” “You just said it.” replies Sarosha. “Oh. OK. Well there's two types of dam…” I go on, as I attempt to explain the difference between my annoyance at the traffic and barriers built across rivers and streams. Some four years ago, when Sarosha was eleven months old and we had news confirmed that she had been profoundly deaf from birth, I didn't know what the implications would be for her hearing, speaking, reading or writing. Everything seemed uncertain – language choices, the exact extent of her deafness, the possibility of related disability and, of course, what kind of assistive hearing device. A few weeks back she started at our local school and she is doing so on a par or even ahead of her hearing peers, in terms of listening, speaking and literacy. I pinch myself and, like every other parent, I am continually amazed at the wonders of child development. Like many children, when it comes to listening and overhearing things that maybe she should not, she does not miss a trick. It has meant that her extensive language and vocabulary does include some words that I might prefer she did not yet know but, of course, it all seems like a minor miracle compared with just a few years back. It is easy to forget what it was like for our family a few years ago. On the other hand, it is perhaps not that easy since the intensity of the experience of learning that your child is profoundly deaf probably never leaves you. That intensity doesn't come from the fact of deafness. In many ways, learning that my daughter was deaf was a source of pride and challenge. The intensity comes from the uncertainty that flows from the news - the potential implications for interaction with a hearing world and the complex choices that lie ahead.
So faced with uncertainty, my wife and I sought to focus on what we could be certain of and quickly realised there was quite a lot:
There are undoubtedly many challenges ahead. But our first goal – that Sarosha should gain listening and spoken language early and should reach school-age without a language or communications deficit – has been achieved. We're in a situation where, with the vital exception of the management of assistive hearing technology and a good auditory learning environment, she does not have any special needs at school. The investment in AVT early on, from diagnosis at 11 months onwards in our case, has saved special needs worries and money later. Two things really amaze me when I look at my daughter aged 4¾: Two things have made an enormous difference to our family – (1) cochlear implantation relatively early on, in Sarosha's case switch-on was at 23 months; (2) a focus on auditory verbal therapy which, from 12 months of age, helped our family ensure that Sarosha knew that sound had meaning, even prior to her having appropriate assistive hearing technology, and made up for the auditory and language deficit that she faced. We'll never forget our years visiting Jacqueline and the others at AVUK. Many aspects of our family life are completely different. Our addiction to the radio as background noise has had to go out the window, every moment from car journeys to shopping trips in the buggy has been turned into an auditory experience and we shall always think about sound and language differently. When I think about our journey with AVUK, tears of joy come into our eyes. They are very different tears to the tears of uncertainty that came into our eyes when we first heard the diagnosis of our daughter's deafness." Dominic Byrne and Shamim Amis Update: Sarosha aged 6 3/4 yrs We are fast approaching another milestone in Sarosha's life, she is due to have her second implant in April, I reflect on what encouraging progress she has made from the time of the diagnosis of profound deafness to the present day. Sarosha attends a mainstream village school and has integrated well with the teachers and other hearing children. She is very happy there and her teacher tells me she is also popular with her classmates. Her reading ability is well above her chronological age, and has become an avid reader. She will insists on finishing the book even though it is late in the day! Her spoken language has also improved, in that she is intelligible to the the untrained ear (individuals who have no prior experience of deafness). This was affrimed when the examiner for her drama test gave her a commendable result for her efforts, as one can imagine we came away elated! Often others have commented on her clarity of speech. We have recently returned from a skiing holiday. One of the other mothers (Jane) shared a chair-lift with her. She asked her about Enid Blyton and which books she liked to read. Sarosha loves the famous five stories and went on to correct Jane on the names of the five children. Jane relayed on the conversation to me, which I thought was remarkable. Sarosha could now have a conversation without difficulty even under suboptimal conditions (a balaclava and ski-helmet impeding listening). What Jane also said was 'that had she not known Sarosha was deaf she would not have been able to tell, just by chatting to her.' Again this filled me with joy to know that all of our efforts had been more than worthwhile. None of this would have been possible if we had not followed the auditory-verbal route for Sarosha's language development. The cochlear implant has benefitted her immeasurably, however without the rehabilitation afterwards we would not be where we are today. Those long hours spent in the car travelling to Oxford seeing Jacqueline and her team have been worth it. We always came away from the sessions revitalised knowing what we hoped to achieve for Sarosha and how to use all skillls in everyday practise. Now that Sarosha is having her secong implant we look to our further visits to Oxford, in the hope that she will achieve a similar level hearing with this as the first. Dominic Byrne and Shamim Amis See also: news from Sarosha in the AVT graduates section
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Her spoken language and her reading. Her language development has not just given her a rich spoken vocabulary but she is able to read to the extent that she can now visit the library and sit down with a book she has not seen before and read it.