Advance warning: I ask quite a few questions in this post as I want to hear your stories, so please do leave a comment!
When you or your little one were diagnosed with a hearing loss, were you offered any counselling or emotional support to ‘deal’ with the new diagnosis? I’d like to see how many say yes. Even people born with Treacher Collins Syndrome or parents of children born with TCS, there is no immediate emotional support offered, so where is the empathy in these situations?
I have spoken to many people about this topic and they have often said that a listening ear would have lifted a great weight off their shoulders, whether they were a ‘sufferer’ or ‘carer’. A common occurence these days, is that at diagnosis you are given any number of information leaflets. Your given lots of help on picking the right hearing aid and communicating, but what about the emotional & social effects?
In the UK, a child with a new diagnosis of hearing loss is soon afterwards seen by a Teacher of Deaf to help guide them through the long journey. Thankfully, these days there also a number of charities to help you on your way, e.g. The Ear Foundation, Action on Hearing Loss and the National Deaf Children’s Society. Deafness can be very isolating because of the difficulty in communicating. (Combined with having a facial disfigurement, there many more challenges to face). Having a hearing loss isn’t easy, there are many things to take into account which many hearing people take for granted. Something which even I’m guilty of. If you have a hearing loss, do see you yourself as an extrovert or introvert? I class myself as the latter; shy and quiet are words often used to describe me. Speaking up doesn’t come naturally to me, but with the support of family, professionals and friends, I get a little more confident each year.
I’m not sure how old I was, but I was quite young when I realised I was ‘different’ from my friends and family. I wanted to know why I had my condition and hearing aids. As I looked different, I didn’t want people staring at my BAHA too, so it was often hidden away. Wearing a hearing aid makes you a brave person. It takes a lot of courage to go out in the big world and proudly show off your hearing aid. On this extremely hot day (by English standards), I’m sitting here with my hair tied up and my BAHA on show, I wouldn’t have done that at school and maybe not even at the start of my Uni years.
Many young people will go through a phase where they’ll wish they didn’t have to wear the hearing aid and will try their best to hide it away. I’ve come to accept that it’s a part of me and it’s not going away. Sometimes I wonder if I had someone help me understand this fact, like a role model – someone who’s been in my shoes, would it have helped? I wouldn’t have life without this hearing aid, my TCS makes me the person I am, so if I don’t accept it, how will other people?