Yesterday, the boys went to choose their hearing aids. As I mentioned previously, along with progressive kidney damage, a typical symptom of Alports Syndrome is sensorineural deafness, caused by the ongoing breakdown of the collagen membrane found in the ear.
We knew that Joseph had hearing problems and it turns out he's moderately deaf in both ears. His hearing loss includes the tones used in everyday speech, so it's no great surprise he was struggling to keep up with conversation. Evan is also moderately deaf, but at the moment his hearing loss only affects one ear.
So yesterday was hearing aid day. This involved lots of laughing at one another whilst having ears filled with purple putty to create an ear-shaped mould, as well as the serious business of deciding what colour of hearing aid to choose. In typical understated fashion, Joe's are bright orange and Evan's glittery green. (As you do!) They now have to wait about 4 weeks whilst they're being made, as each one is created especially for the wearer.
The whole experience has reminded me just how brilliant kids are at dealing with things that we adults might consider a big deal. As far as Joseph is concerned, he's "hearing impaired, not deaf, deaf makes people think I can't hear anything, when actually I can." Fair point! For both of them, wearing hearing aids is a simple answer to a simple problem. As Evan put it, who wouldn't want "robot ears?!" And personalised robot ears at that. I'm not dismissing the seriousness or significance of hearing loss, I'm just saying that the boys have been surprisingly matter of fact about it all. I daresay this attitude will serve them well with what's likely to happen in the future with this disease.
The audiologist directed me to this website, where you can hear what the world sounds like to someone with hearing loss.... http://www.hearinglikeme.com/facts/what-hearing-loss/hearing-loss-simulator-understanding-mild-and-moderate-hearing-loss
Have a listen and see what you think! The speech sounds in particular were quite a shock. I'd imagined that sounds might be faint or indistinct, but I hadn't considered how muffled things would be. I realised that the world is organised primarily for the benefit of those who hear well, at the expense of those who do not. Tannoy announcements, for example, are usually made in crowded places with lots of background noise such as train stations, and are very difficult to understand when you're hearing impaired. Joseph told me how in class, he can hear his teacher as long as he can see him (thanks to the benefits of lip reading.) If a lesson involves the use of a whiteboard, then depending on where his teacher stands, this can create problems as he has to choose between either looking at the board or hearing his teacher! Simple things like that could be easily overcome, but unless it's brought to the attention of the teacher, they might not even be aware that it's an issue. I'm sure there are many more examples which I've previously never considered but will soon learn. I was advised by the audiologist, for example, that negotiating traffic and cycling can be more difficult for hearing impaired kids, as they don't have the added input of sound to help them judge distances.
I'm glad the boys will soon have hearing aids to help with some of these issues but I'm also thankful for the reminder that not everyone has full hearing.
