I have thought for quite some time about creating a forum/discussion group where people can chat about ANSD and CIs. Particularly one for us folk in the UK as the Yahoo group is pretty US centric – that’s not to say it should be solely for us Brits! So I have done just that. If you follow the link HERE it will take you to the forum. There is also a new tab at the top of this page. I am sure it will take a while to get going, but as we get so many questions through the blog, most of which we have no answers to, I thought it would be really useful to have a place to discuss our hopes and fears. Let me know what you think.
You’ll need to register first, but do pop along and say hello.
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!