KidsAudiologist

Weekend for families of children with ANSD

Posted on: May 7, 2012

This weekend it was my pleasure to be involved in an NDCS weekend for families who have children with Auditory Neuropathy Spectrum Disorder (ANSD). NDCS has an established family programme including ‘newly identified’, ‘pre-school’,  and ‘pre-secondary’ weekends and we’ve recently been trialling some new ones. In 2008 NDCS funded some research carried out by Manchester University looking at the experiences of parents of children diagnosed with ANSD. You can read the full report (2011) here but some of the messages from parents was that they felt isolated, that there was a gap in information available for them and that deaf organisations such as NDCS weren’t meeting their needs. In response we embarked on a training programme for staff, have started updating current resources, will be publishing ‘ANSD; From parents to parents’ from the research in the near future, and piloted a new weekend for families in January.

Staying in a hotel, with a creche and children’s activities, information sessions, and lots of opportunities to mix with other families means that we have a relaxed environment where parents can ask questions of NDCS staff, the invited presenters, and one another. More importantly they get to talk to other families who understand their situation and feel less alone in the world. Children, who are often in mainstream education and have never met another deaf child before are often surprised to meet other kids who sign and/or wear hearing aids & cochlear implants.

As soon as we started taking bookings for the pilot weekend in January we knew it was needed – each weekend takes 12 families and it was 100% oversubscribed. Taking on board all the feedback from parents at the first weekend in January the second was even more successful. The information sessions included the medical aspects of ANSD with Dr Glynnis Parker (Consultant Audiovestibular Physician, Sheffield Children’s NHS Foundation Trust), my session on making the most of the hearing you have and technology you use, a session on communication with Susanne Harrigan (Speech & Language Therapist, The Ear Foundation), and one on environmental & assistive listening devices including FM equipment with Jeremy Hine (Connevans).

Already we have 20 families on a waiting list for the next ANSD weekend. Although a date hasn’t yet been set for that there are lots of other free events & weekends taking place – click here to see what’s happening in your area.
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