Tuesday 5 May 2020

My youngest girls story. Auditory Neuropathy! #DeafAwarenessWeek

Looking at Ellie my 12 year old you would never guess she is deaf in one ear. She just gets on with it and deals with it! This week is Deaf Awareness Week and I thought I couldn't let it pass without writing something. Sharing Ellie's story.

Ellie was born with some hearing loss in her right ear. It was discovered when we took her for the newborn hearing test. They still weren't a 100% sure about the degree of hearing loss and for a few years we were at the hospital every six months for more tests. They couldn't get a clear result until she was about 3 years old. 

We went through all the baby tests where she had the probe things put in her ears. Then the toddler ones where she had to wear headphones and they would play a noise in them and the Audiology people would note down if she reacted then the one's where she had headphones on and had to pick up a toy if she heard a noise.

Ellie was about 4 years old she was diagnosed with Auditory Neuropathy

Auditory Neuropathy is a hearing disorder in which the outer hair cells of the cochlea are present and functional but sound information is not transmitted sufficiently by the auditory nerve to the brain. Hearing loss with AN can range from normal hearing sensitivity to profound hearing loss. The consultant explained it to us saying everything works but there is just a loose connection somewhere. My girl really does have a screw loose. lol

When Ellie was a toddler she had 95% hearing loss in her right ear and it progressed. By 2014 she was totally deaf in that ear. To Ellie her hearing loss is normal. She has always been mostly deaf in her bad ear. When she was little she did have some issues with her speech and had speech therapy which helped a great deal. Now I would say she talks the clearest out of the whole family.

The specialists said she could try a cochlear implant on her but the chances were that it would make no difference and they said that they could do tests, an MRI scan to see where the nerves are not working and maybe find out why. It would help with the research of the condition but the results would not make a difference to Ellie. There is no fix for her ear so I have always said no. I would love to help with their research but after heart surgery I don't want to put her through anything else. If she wants to be a guinea pig when she is older she can. She has had her fair share of hospital visits and stays with the problem with her eyes, ears and her heart. If there was a chance they could restore the hearing I would have said yes but not just to aid their research. 

We had got to the point now where we would only go to the hospital once every couple of years just to make sure her good ear isn't losing any of it's hearing.

There were times were Ellie has struggled at school especially if there is a lot of background noise but each school she has been at has been pretty good in helping her. We did have a few issues over the years, especially at the start of a new school year in her primary school where her medical information was not passed on. I complained for about 3 years running that the new teacher hadn't been informed about her hearing loss and she had been seated at the back of the classroom. When she started secondary school she was under the care of one of the special educational needs teachers and she was well looked after. That teacher would do checks and if Ellie was at the back of the class the teacher teaching her would be told to move her and why.

Ellie was bullied for her hearing loss and because sometimes she couldn't hear what people are saying. Sometimes it was for the best that she couldn't hear but I have realised that when a child is bullied for a physical disability support is given but for a hidden one there is less support which is a sad shame. 

I have another post later this week about how things have gone with her hearing loss and care since we moved house.

There are over 45,000 deaf children living in the UK.

90% of deaf children are born to hearing parents with little or no experience of deafness or knowledge of how to communicate with a deaf person.

Four babies are born deaf every day.

Research suggests that more than 77% of school-aged deaf children in the UK attend mainstream schools where is no specialist provision and in which they may be the only de
af child enrolled.

Deafness is not a learning disability. There is no reason why the majority of deaf children should achieve any less than hearing children.

Ellie doesn't let her deafness hold her back. To Ellie being deaf is normal. There are times when she plays on it. She only has to stick her finger in one ear when she doesn't want to listen to me and pretends she hasn't heard me when I ask her to do something. Cheeky so and so. hehehe

1 comment :

  1. I love posts like yours. They raise awareness so well by telling a true story. How disgusting your daughter was bullied for hearing loss. What is wrong with the world? Glad she has shown strength and love how she can sometimes use it to her advantage #MMBC