|Part 1: Roadmap for families
When your young son or daughter has been diagnosed with a unilateral hearing loss, it is not an easy time for families. The diagnosis often comes as a shock. Most parents know little about hearing loss in children and there is a lot to learn.
My daughter was diagnosed with a profound unilateral hearing loss in her left ear when she was 4. It did not come as a bolt out of the blue - she had been slow in talking - but the diagnosis consumed me for a while. I tried to imagine what the world must sound like to her. I thought of all the stories I had read to her that she had probably never heard properly and I thought of all the times I had whispered "I love you" in her left ear. A thousand questions ran through my head - the biggest one being about starting school. I wanted a crystal ball to see what the future might hold.
What I have learnt is that while I worried about her, she simply got on with the job of living a full and independent life. With our love and support along the way, she has followed her own dreams and become the person she wants to be.
All of our stories are different. Whether we find out our baby has a hearing loss through newborn hearing screening or later in childhood, we need information and knowledge to guide us to make decisions and help us raise a happy, confident and independent young person. Living with unilateral hearing loss is different to living with a hearing loss in both ears or hearing in both ears and it is evident from the messages posted to the Aussie Deaf Kids online group that finding information about unilateral hearing loss, its impact on a child and how to successfully manage the hearing loss has been difficult for families.
This is a guide to help lay the foundations for your child to grow into a healthy adult - a person who works, plays and loves. We have drawn on the current research on unilateral hearing loss as well as the experiences and thoughts of families who participate in the Aussie Deaf Kids online group.
Thank you to the parents in our online group who have shared their thoughts and wisdom. Aussie Deaf Kids could not have produced this information booklet without assistance of the Inger Rice Foundation. We are very grateful for their support.
Ann Porter AM
Founder, Aussie Deaf Kids
P.S. We have used the abbreviation UHL (unilateral hearing loss) throughout; it is a term you will become very used to.
'What does it matter that we've taught this girl to read and write and spell,
and to do all the things that we think are essential,
if no one along the line taught her the sacredness of being alive and
taught her the dignity and the wonder of her own personal self worth?'
The information in Sound Waves was developed by Aussie Deaf Kids, an organisation dedicated to improving the outcomes of children with a hearing loss by providing support and information to families raising a deaf child in Australia.
Thanks also to the experts who have reviewed the 2014 update of the booklet - Dr Teresa Ching, Alison King, Monica Wilkinson and Rosemary Douglas. Your guidance and expertise is much appreciated.
A special thanks to the parents in our online group who have provided their experiences and insights into the information families need in the journey with their child with a unilateral hearing loss.
© Aussie Deaf Kids 2014
You may download, display, print and reproduce this material in unaltered form only for distribution to families with a child with unilateral hearing loss, your personal, non-commercial use or use within your organisation.
09-Dec-2015 5:22 PM (AEST)