The Secret Deafie: “I want to hear more, Mummy.” The most difficult decision I’ve ever had to make

Posted on October 22, 2012



The Secret Deafie is a series of anonymous columns written by different writers. Today’s Deafie tells us about a life-changing decision she had to make.

We were so happy when our baby boy was born. Even though we are both deaf, it didn’t cross our mind that he could be deaf, we were just so delighted to have a healthy baby.

When he was six weeks old, he had a home test arranged by the health visitor. He had wiring across his head, but luckily he didn’t have any hair to worry about! He didn’t respond, but she told us that it was fairly common for boys to fail their first test.

But a week later, we were at the hospital for a proper hearing test. The audiologist was a nice man, patient and, surprisingly, deaf aware (they usually mumble and look the other way). He explained everything, went through every stage.  Then he tried again. Our baby woke up before he could test the second ear.

The audiologist explained that one of our boy’s ears didn’t show any brainwave responses to sounds. He was so careful with his words. I had to ask him straight out  if this meant our baby could be deaf. He said yes.

We were so surprised, as we weren’t expecting this.  We went home speechless. We agreed not to say anything to anyone yet, not till after the second test, so that we could take it in ourselves.

I was so distracted. I started thinking about the future – what was the local authority like? Would we get a teacher for the deaf from hell, believing in only the oral method? Or a nice kind one who’d be happy to support BSL? What would his education be like? His school?

I was not worried about him being Deaf, nor about language, as I knew with his deaf parents he’d be ok, but I was worried about the attitudes around us, partly because we’d only just moved.

Our baby slept through his second test. His brainwaves showed no responses to sounds, and it was confirmed that he was profoundly deaf.  We were to come back again in few weeks for new hearing aids after his first ear molds were made (they were so tiny!). They would refer a teacher for the deaf to us.

A teacher for the deaf came on the following Monday. To my relief, she was a lovely teacher and signed little bit! She wasn’t a teacher from hell! Even better, she told us that the Local Authority supported whatever the parents wants for their deaf child!!!

So I could relax a bit, and focused on building my bond with our baby again.

We were delighted when I realised I was expecting again. We knew that the new baby had 50-50 chance of being deaf, but we didn’t mind either way.

Our baby was born, a boy again! The newborn screening test was being used in hospital by then but I refused it point blank. I believe people need time to focus on their baby first.

I believed that he was hearing but my husband strongly thought he was deaf as he wasn’t responding to sounds, which made me think again. A few weeks later, he had the test. The audiologist turned round saying that he’d got through 80 decibels …. so I was right, more hearing than his brother….. then 70db….60db……..50db…….40db…..30dz…….20dz……..

He wasn’t deaf.

Again, we were stunned and speechless on the way home.

From then on, we were a happy little family, our two little boys – one deaf, one hearing – always playing next to each other, the eldest trying to read books while his brother tried to grab them from him!We had regular trips to hospital for new ear moulds as our eldest son kept out-growing them. When he was young, the hospital staff and our parents tried to encourage us to think about Cochlear Implants for him because he was profoundly deaf and wasn’t really benefiting from his hearing aids.

We told them to back off as we believed that it was up to him when he was older and we felt it was against our morals.
Although he wore his hearing aids at nursery, every time he arrived home he always took them off. We didn’t mind too much as he had wonderful sign language. He also loved asking questions or being asked questions – he was a curious child.One afternoon, while the baby was having a nap, I was in the kitchen and noticed my eldest sitting on the floor by the door with a serious face.

I went over to him to see if he was ok, then he just simply said to me – “I want to hear more.”
I was taken aback as it was out of blue. He was only two years old, so how could he think like this? I didn’t know how to respond, so I distracted him by playing with him. But I started to think about his response, asking myself ‘what if he really does want to hear more?’
A few days later, I asked him if he really wanted to hear more or if it was just a thought. He replied yes straight away, which was unusual as he usually thought for a while before answering any questions.  I felt really uneasy.My world started to turn upside down. What should I do? Ignore this just because it was against my morals? Or should I listen to him as a mother about what he wanted?

My nightmare had begun.I started to explore all the options, finding out what Cochlear Implants were like nowadays. We didn’t tell our families,  because we wanted to be sure, without their views clouding our decision. We spent hours on the computer, asking professionals for more information, looking for reasons why we shouldn’t go for it.

The NDCS were really helpful, giving us unbiased leaflets on young people’s views on CIs, which helped because I was from a different generation. We spoke to other parents.
A few months later, I asked my son again. Once more, he responded “yes” straight away.
We spoke to some of our Deaf friends. Some were positive, and some were uncomfortable. Every day, my stomach churned, and I couldn’t sleep well. Changing our views was one of the most difficult things to do.
One year after the first time my son me he wanted to hear, after dozens of appointments and tests, our boy gave the same answer. After hours of discussions, we decided to give him what he wanted – a CI.
He was so brave after waking up with a bandage on his head. He wanted to go to the playroom to play with cars, even though he was still dozy after the operation.
Now it’s three years later.BSL is still his first language, and he still signs with his brother. He is doing well at school, and continues to use sign language to access the curriculum. He loves to learn. He loves to read, have guitar lessons, dance, and listen to music. He once told me that when he is grown up he wants to be a rock star during the week and work on his computer at the weekend!

He knows that he is deaf. He is proud of BSL, yet he is also proud of his CI.
One day as we came back from school, I saw him joking with his brother about children who’d just arrived at the school thinking he was hearing, even though he is deaf. They joked together in the back of the car about them both being able to sign, even though one of them can hear, and one is deaf.
That made me feel good, because I could see that they are sure of their identities. This was one of the most valuable lessons I’ve ever had – that it is the attitude around a child that can take away their sense of identity – not technology.
This was one of the most difficult things to go through, making that decision and and changing our moral ground.
It was the right thing to do, because it was what our child wanted.

Do you have a story or experience you’d like to share? If you’d like to write a Secret Deafie column, just email thelimpingchicken@gmail.com

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