Support for parents of deaf children

Although we personally don’t refer to deafness as a disability it can be seen as one and does come with its own challenges. Being a parent of a deaf child requires a little more time, patience and understanding of what your child may be going through.

First, coming to terms with your baby being diagnosed with hearing loss can be a highly emotional and stressful time. It can bring fears, questions and a sense of loss, especially if it comes out of no where, like it did for us and Harry. When we found out about Harry’s hearing loss, the first thing we did was turn to the internet. We headed straight for forums for parents of newly diagnosed deaf children to try and understand what this meant for us as a family. To say it helped would be an understatement. I immediately felt a huge sense of hope as I connected instantly to each person’s story. It was almost like we were part of an exclusive group.

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Why the Ability to Hear is not Enough

On the day I chose to have my first tympanoplasty, May 20th, 2004, I believed restoring my hearing would provide a “perfect life” and solve all of my problems. At the time, I was full of rage about isolation from hearing loss and ear infections occurring at least every six weeks. My ability to trust human beings was in the toilet after being bullied by my classmates and placed into special education by the school district. The only thing I trusted was money because it came consistently, regardless of my health, every time I did a favor for someone else.

Old and lonely.

Closing my eardrum, obtaining hearing, and “becoming normal” seemed to be the be-all and end-all to those problems. I believed I would be able to trust people, escape special education, and overcome the infections the moment I had a “healthy” ear. Once all of those things happened, I would “live happily ever after” and skip off into the sunset, where I would suddenly become a popular girl with straight-A’s in the blink of an eye.

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If You’re Sinking, Who Will Save You?

One of the things I love about being part of this community is the international perspective. It’s a real eye-opener learning about the experiences of fellow hearing aid users in other countries. In this post, I’d like to explore the issue of a lack of ‘follow up support’ for adults new to hearing aids here in the UK and I would love to know if you have a different experience where you live. Of course, there may be some great local initiatives in the UK that I don’t know about so, if you have some examples of good practice, this would be a great place to share them!

Lifebuoy
Photo credit: Stephanie Booth

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Thank You to All the Lipreading Tutors Out There

The 8th to 12th September is Lipreading Awareness Week in the UK and so my post is in honour of the Lipreading tutors around the world. Thank you for all you do!

When I got my first analogue aid, I shoved it in a drawer because it amplified everything and the sounds of cutlery or a running tap scared the living daylights out of me. Nobody checked up on me and it was left up to me to ask to be referred to a different hospital where I’d discovered they were (at that time) trialling the use of digital hearing aids.

At the second hospital, I was given an ‘in the ear’ aid and told to ‘build up use gradually from an hour a day to all day’. The hearing aid was set far too loud and the audiologist refused to turn it down to make it bearable (let alone comfortable) and so, it too got shoved in a drawer never to see the light of day again.

I then enrolled on a lipreading class.

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