May plays host to Deaf Awareness Week (2-8) May and they are celebrating 10 years since the launch of new-born hearing screening (NBHS).
This is something that is close to our heart because it was during Leo’s New-born hearing screening there was fears raised about his hearing.
I (mum) have decided to write a bit about our families journey so far..
As mentioned above Leo failed his NBHS when he was hours old which came as a great shock even tho I am profoundly deaf myself I was always told that it was due to a childhood illness and that it wouldn’t effect any children I had. Our first born Oliver passed with flying colours so I was expecting the same for Leo.
With the NBHS you get the results in a matter of minutes they put some little headphone looking things in their hears and take some readings. When Leo’s came back as a fail we were quickly given facts and figures about how many babies failed the test but then go on to have nothing wrong with their hearing and at the same time given an appointment to return in two weeks time where they would recheck his hearing doing the same test.
As anyone knows the first few weeks of life with a baby are a blur but getting him home I remember deep down I knew he would fail his second test but tried to keep positive and hope that he was in the high percentage of babies that went on to pass.
We returned to the hospital a few weeks later to be met by the same lady. It soon became apparent that he was going to fail this test too and she finally told us she had to refer him for more testing.
I would like to say my tears that day were because of my hormones (which didn’t help) but truly I was devastated. Once again we were told that a high percentage of babies go on to be fine and have normal hearing but at this point I knew, it was too much of a coinicidence given my hearing loss.
We were told an appointment would be sent in the post but because of how upset we was the nurse phoned and got us an appointment for a week later (thank you).
This week was spend fending off peoples well meaning advice and well wishes which although meant in good nature to try and keep us positive we (i) could have done without having to repeat to people that the chances are Leo was deaf.
When the appointment came round my mum came with me while Richard looked after Oliver. We were shown to the room and very quickly Leo was hooked up to the computers and the testing started.
Even now I remember the moment when I knew and the last bit of hope I had was put out. We weren’t that much into the testing and the audiologist left the room to get a pen. Something simple and most people wouldn’t think twice about but I knew because whenever I had my ears tested (100’s of times over the years) I have seen my audiologist dot down on their pads at what level I heard a sound and what sound/ level to recheck. So I knew he had come across a sound that needed rechecking therefore a sound he couldn’t hear at all levels.
I couldn’t say anything because you have to be quite while they are testing, so you are just sitting in silence watching it all unfold. It was when Leo started stirring, the baby needs to be a sleep for the test that, I could finally speak and ask the dreaded question “so how’s it looking so far?” Of course I knew, he knew I knew so after a weak go of trying to fob me off with “let’s complete the test then we will talk” he told me there was some hearing loss.
*more tears from me*
Once the test was completed it was an overload of information about people we would be seeing, appointments we needed to attend then I had to choose which hearing aids Leo was going to have and what colour they were going to be.
Leo was checked over by the consultant and I was asked loads of questions regarding my own hearing (thank god my mum came) a chart was quickly drawn up showing where Leo’s hearing sat in the “speech bubble” then lastly Leo had his ear moulds taken and we were asked to return in 3 weeks for them to be fitted. The drive home was silence until I step into my house and saw my husband making the tears flow again..
Why the crying..
I was and still am often told that “you know Leo will be fine because look at you, you cope well”
“your lucky you have been thru it, you know what to expect”
“there are worse things he could have wrong”
“things have improved since you were young”
All this is true, but having been thru it makes things worse plus I have never been the mum.
Yes people might think I’m fine now but growing up I never knew I would be “fine” and what even does “fine” mean? I left school without any GCSEs because I fell behind after not having enough support in school. I struggle in loud social situations to communicate with people so tend to avoid them. Doing some simple tasks are long and drawn out because I am unable to hear on the phone. For example I can’t just ring and make a doctors appointment I have to wait for my husband to do it or go down to the doctors. These are a very small sample of things I struggle with, I know they are not life limiting and people go thru worse things but they are not what I would choose for my son if I had the choice.
And yes I have been thru it. I have been thru peoples small mindness and peoples total lack of knowledge towards deafness ( no shouting won’t make me hear you) people telling me not to worry the 3rd time I have not heard what they are saying, people laughing at me mispronouncing something. People forgetting and talking when your not looking, again not something I would choose for my sons and not something I want my son to experience but Leo will experience this but hopefully with mine and his dads support he will cope better, brush off people’s comments better and be “fine” like so many people tell me I am.
I have read countless post on support pages, on blogs where people have experience the things I don’t want Leo to experience the things that have meant to have improved since I was younger. So the tear was because of this not because he was deaf because the world we live in at the moment has no deaf awareness making life ten times harder then it needs to be.
The first few months was dark. I uttered these words and meant them ” if I knew I would pass my deafness on to my kids I wouldn’t have had kids” but now I look at Leo who on the whole is such a happy, strong willed boy who brings so much laughter to our home along with his brother Oliver And already is stubborn and can stick up for his self and I couldn’t imagine life without them and yes leo will have some tough times but with with us around him and the support from our family and friends we will help him tho them. A year on and Leo has a great network of professionals around him helping him every step of the way ready to step in as soon as he shows any signs that his falling behind with his hearing/speech skills. They might just be doing their jobs but to us they are more like friends and a soundboard where we can say all our worries and fears. Just like my audiologist is to me. They really are a great bunch. His hearing aids spend more time in his mouth then in his ears but I’m told this stage should soon pass I’m hoping it happens sooner rather then later. The appointments are slowly cutting back sometimes we go two/three weeks without a appointment sometimes we have two in a week. I would just like to say here
Thanks to my mum for going to all my appointments with me up until I was well into my mid 20’s I would like to say without moaning but it was non stop moaning lol but now I understand why she had over 20 odd years of the appointments. I have only had a year of them lol.
For now Leo is thieving, I don’t want him to feel ashamed about his hearing aids so it’s made me much more open about my CI I don’t think twice about wearing my hair up something I wouldn’t do before Leo was born because it meant you could see my CI And speaking out more against rude people trying to educated people.
The next fight in the battle will be when he starts nursery/school but we will deal with that when it comes on doubt there will be many more tears but we will deal with them..