Calling all Parents……

Kirtsy Gardner-Berry, a diagnostic and research Audiologist from SCIC has been in touch, through the blog, with the message below. Do please post your thoughts and comments on this thread so we can pass them on to Kirsty – a fantastic opportunity for parents to have a voice….

“I am an audiologist in Australia with a particular interest in ANSD. I am keen to promote awareness of this type of hearing loss and improve the way audiologists, early intervention specialists and medical professionals respond to the needs of parents, which is what brings me to this site today.

I’ve done some searching on the Internet to get a sense of the sorts of problems parents of babies diagnosed with ANSD frequently face, and have been trying to listen carefully to the families that I work with. I’m in the process of working with a couple of parents to help develop resources that may help to guide parents through the ANSD decision-making and management pathways so I thought it would be interesting to gain the UK parent’s perspective!

I’m particularly interested in what parents feel they need during the first 0-6 months, 6-12 and 12-18 months because this tends to be a period where there are still many unknowns and there are a multitude of different assessments taking place. I’m also interested in the block of time between 2-5 years of age where parents of children with a lesser degree of hearing loss on an audiogram may find themselves in a position where they need to consider a cochlear implant because it is becoming apparent that speech distortion may be playing a significant part in delayed language development.

If there are any parents out there who would like to make suggestions that could be put to professionals to make the management path smoother we would love to hear from you.

What would your “wish list” to professionals look like?

Those of us Down Under look forward to hearing from you!”

A Fresh Start

My apologies to our followers have have visted the site over the past day or so. We have decided to update the site and to give it a fresher, more functional layout. This has meant a number of changes to both the look and the format, so please bear with us – hopefully you’ll still be able to find your way around!

In addition, we are moving the focus away from purely being a blog (although we will continue to update it)  and are attempting to transform the site into more of an ‘information site’ and web resource for parents of children with ANSD.

Alice’s mummy gave a talk yesterday to around 35 Audiologists and TODs about ANSD from a parent’s perspective. We were flabberghasted by the number of individuals who already point newly diagnosed families to our site. And so we move on…

Do please let us know what you think and if there are particular things you would like us to add….