So to begin…

Amelia, my daughter

Amelia in her element (Summer, 2013)

Amelia is four. She is my only child: my defiant, cheeky, beautiful, original little girl.

She is also deaf (I use this definition but others prefer hard of hearing or hearing impaired) in both ears, most likely from birth.

In diagnostic terms, her loss is categorised as moderately-severe to profound. In a nutshell, this means that without powerful hearing aids she cannot hear speech sounds clearly or at all, especially in noisy environments.

Because she was not diagnosed until after she turned two, Amelia had barely started to speak when other children of the same age were chattering away – you cannot learn what you can’t hear or understand.

At the time of receiving her aids she could say only two-three words. By Christmas of that year, some eight months later, she could sing an approximation of ‘Twinkle, Twinkle, Little Star’.

She has made gargantuan strides but it is still an uphill climb filled with plateaus and frustrations.

Like the thousands of other families in our situation, the story is a long, drawn out one, populated by an astonishing number of medical appointments and the countless fears, hopes, disappointments and stresses they place on tiny shoulders and bigger ones besides.

The implications of Amelia’s late diagnosis are obviously still with us and the challenges far from resolved.

The diagnosis of Autism Spectrum Disorder was confirmed this year, as her anger, social isolation, hyperactivity, communication problems – her ‘quirkiness’ – are now viewed as distinct from the residual effects of her hearing loss.

Deafness can no longer answer all of the questions we have about our child’s access to the world and her progress in it.

In this blog I will share some aspects of our personal story, both past and present. My aim is to be as honest here as I can be and hopefully write about things that ring true for people in a similar boat.

For more than two years we have been on a journey with lonely stretches that have sometimes isolated us from our friends, family and colleagues.

Through writing I hope to reclaim some of the negative words and feelings of these years and celebrate all of the things that I love about Amelia.

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2 thoughts on “So to begin…

  1. Margot, you are so right – I still think that it isn’t deafness that is Amelia’s challenge or ‘disability’, it is the late diagnosis that has created the tough road we’re on. It took me a long time to stop feeling angry about that. So lovely as always to hear from you. I’d love to know more about your sister and what’s she’s doing now. Thanks for sharing.

  2. I so feel for you all Mel. My youngest sister was three before her deafness was diagnosed, and I often wonder whether life would have been a bit easier for her if it had been diagnosed a bit earlier. It is not an easy road, but Amelia is lucky to have a mum like you.

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