• Parents’ evening…

    November 21, 2011 By in an/ad, ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant, hearing loss 3 Comments

    So last week we had Alice’s first Parents’ evening; a chance to talk to Alice’s classroom teacher about how she is getting on.

    We both came away full of tears. Regardless of her progress, it was so wonderful to talk about Alice rather than Alice’s deafness. We have always said that we didn’t want Alice to be defined by her hearing problem and here was the eveidence that, for now at least, we are winning.

    Alice is getting on really well. In academic terms she is spot on where she should be and she is a popular and chatty member of the class. She is learning to read – something we thought she would really struggle with, and is something of an artist. We are trialling a dynamic soundfield system in her classroom at present, so I hope this is helping – it moves around the school with her and the teachers are reporting good things – she has certainly managed to learn the songs for the nativity….

    Anyway, a snippet of Alice showing off for you…

  • Calling all Parents……

    November 14, 2011 By in an/ad, ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant Leave a comment

    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!”