KidsAudiologist

The new NDCS weekend for teenagers with acquired, progressive, or late-onset deafness and their families  has been a while in the planning and last weekend it finally arrived. As did the snow! Which was a shame because it meant three families weren’t able to make it but for the ones who made it through the snow I’m sure they got a huge amount out of the weekend.

Over the weekend we ran three programmes – one for the adults, one for the deaf teenagers, and one for their siblings. There were opportunities to share experiences, information sessions, and fun activites all in a relaxed environment. I led an information session with all the teenagers and their siblings on the ear, hearing and deafness. All the teenagers had become deaf in the last 18 months and all were using hearing aids or cochlear implants. Many young deaf people know very little about their own hearing or the technology they use and large numbers told NDCS they want more information on these topics.  I have often assumed this to be that, as audiologists and other professionals working with deaf children, we’ve often concentrated on sharing information with families – especially in the early years – and forget to share with children directly as they get older or maybe assume they’ve picked it all up along the way somehow. I was pretty surprised that the teenagers at this weekend appeared to know very little because they were all older when their hearing started to change and we might assume they’d been more involved in their own care. So I thought I’d share an outline of how our information session ran and maybe it will help local services to think about something similar for their kids or inspire new ideas – let me know!

I have a small overnight suitcase that is packed with demonstration equipment. I have a large model of the ear, some laminated diagrams, an otoscope, some old hearing aids on stetoclips, dummy hearing aid and cochlear implants, disposable ear plugs, and my iPad with some ‘drag and drop’ build-an-ear apps. We all sat round in a circle on the floor and basically tipped out all this stuff! They could handle anything they wanted and ask any questions they had. They all loved having a look in one anothers ears and were fascinated by the internal parts of a cochlear implant. The hearing siblings tried out earplugs and listened to hearing aids and they thought this was helpful in understanding their brother or sister’s deafness. A little competition broke out trying to build parts of the ear the quickest on the iPad. We talked wax, how sound moves through the ear, and using the ‘T’ programme to connect to Bluetooth streamers and iPods. Second big surprise was that not one of the teenagers had the ‘T’ programme activated in their hearing aids. In fact one lad told me he’d asked his audiologist for it at his last apointment and had been told it ‘wasn’t necessary because you only have a moderate hearing loss’. Given that the main benefits of using the ‘T’ setting are little to do with the level of hearing and much more to do with overcoming limitations in hearing aid technology (such as hearing sounds clearly that come from a distance, reducing distracting background noise, and enabling use of audio equipment without the need for headphones) this seemed like missing an important opportunity and we’ve encouraged him to ask again!

My session was just one part of the weekend so it was lovely to hear their views at the end when they completed an evaluation activity and shared what they’d done and learned throughout the weekend with their parents (and vice-versa!)

They loved these ear anatomy post it notes (available from Blue Tree Publishing) that they used to write down some of the things they’d learned in my session! And we’re going to be developing some resources for kids who lose their hearing and their families to help address some of the issues they raised – watch this space…