A Reflection

by Lorna Barry

It’s over five and a half years ago since we discovered that our daughter Maisie was deaf. She was just twenty-eight days old and had failed three different rounds of audiological testing.  The image of James holding her as each frequency and volume was altered, and every time the words ‘No response, let’s try the next level.’ James has described those two and half hours as like watching a car crash in slow motion. There was just no flicker of reaction on the computer screen in front of us.  Both of us fighting to hold it together, knowing devastating news was on the way.

James and I went on a roller coaster ride of emotions over the months that followed. We cried over silly little things. We cried over big things. But we laughed too. We laughed over the fact that every night for a month after diagnosis we continued to whisper when we went to bed so as not to wake Maisie up. But life went on. Slowly it got easier. We learnt to adapt.

That was five and a half years ago and a lot has happened.  Maisie is bright, articulate and energetic; a doting big sister and incredibly loud.  Speak to her you would not know she was a profoundly deaf child. The clarity, intonation and articulation of her speech and her receptive language is immense, better than many of her hearing peers. Bilateral cochlear implants have allowed her access to sound.  Implanted at fifteen months old, the change in her reaction to sound was virtually instant. At every audiological and speech and language assessment since, she has exceeded expectation.

What it is important to remember is that what she hears is electronic, not acoustic as a hearing person. Cochlear implants provide access to sound but do not make her a hearing child.

Maisie enjoys mainstream school. She has an education health care plan which provides the school with additional funding to pay for one to one support for her. Her learning support assistant pre-teaches new language, elements of BSL and social skills work. Deafness is not a learning disability but it can be a barrier to learning. We have never let it hold Maisie back. She is as able as her hearing peers but only
under the correct circumstances, adaptations have to be made. The technology is truly amazing but underneath it there is still a profoundly deaf little girl, who will always be profoundly deaf.

Along our journey we have been lucky enough to engage with a range of professionals, volunteers and other families of deaf children, from the local authority deaf pre-school group to family weekends run by the National Deaf Children’s Society (NDCS) and many other events. We have learnt that we are not alone, and that we have been incredibly lucky with the support that we have received through our local authority, the NHS and the friends we have made along the way.

Our hopes for the future are that people truly learn to understand hearing loss, the impact of background noise and concentration fatigue; and that hearing technology is an aid.  It does not alter the diagnosis. The world is Maisie’s oyster regardless of being deaf.  
 

Lorna Barry is Margaret and Andrew Hill’s daughter, and is a member of St Mark’s.
The photograph is by Margaret Hill. It shows her granddaughter, Maisie, presenting a cheque for £9,000 to Hanna Sturman, from the National Deaf Children’s Society, at this year’s General Assembly Meetings in April. Also pictured is Janet Poole who stepped down as the President of the Women’s League .