Clara O’Donnell: Why I started a blog about having a deaf daughter

My name is Clara and I am the proud mum of a girl called Daisy, she is five and a half years old, and she’s deaf.

I decided to write a blog (read it here) when I realised I spent a lot of time ranting onto a status on Facebook about the different things that have happened on our journey.

The aim of my blog is to assist any parent who has a child diagnosed deaf from birth, and all the other hearing parents of deaf kids and deaf parents of deaf or hearing children, one thing I have learnt since having a deaf member of the family, is there is a massive world out there full of people with stories of hope and despair, there are truths and un truths, there is hate and love, and a lot of misunderstanding on all sides.

Our story began when my daughter was 11 days old, she had been kept in an incubator after she was born, and each day we were promised she was allowed home, and then told, maybe tomorrow.

11 days of maybe tomorrow’s already took its toll on me, separated at birth from my child, not able to sleep in a bed by her cot, and given the choice of a room full of mothers with their babies as my lodgings, with no child next to my bed, I decided I would sleep at home, and spent the next eleven days expressing milk and making the 6 and a half-minute journey to the baby unit sometimes 8 times a day, and throughout the night….

We sat and looked in awe at our tiny beautiful child, who had decided my belly was a great home and had refused to arrive until exactly two weeks after she was due, she was born on my neighbours birthday, which pleased my neighbour greatly.

On day eleven she was given her hearing screening test. The girl who performed the test, was getting married to a friend of ours, we didn’t know her, but she knew us, and before she could help herself she was telling us we were invited to her wedding.

It was quite strange, but what was worse was the machine wasnt showing the result she wanted, she told us not to worry, and that the machine was playing up, and told us we would be invited to a clinic for a re-test, “don’t worry” she said “it will be fine”.

I left feeling confident, not realising the poor girl had felt uncomfortable with the truth, she had just diagnosed a deaf child, but she didn’t have the words to say so, and led us into our first blow, believing everything you are told, “don’t worry” she said, and so we didn’t and when we went to the clinic, fully confident that it was all a technical problem, our false sense of security was ripped away.

I literally felt the world disappear from under my feet when they told us “your daughter is severe-profound deaf, we need to get her some hearing aids, and we will make you an appointment to see a consultant that will explain everything”

I wanted it not to be true, at that very moment my thoughts swam – my first thought was she will get bullied at school, honestly before even think about if she could hear me or how this would affect her life, I worried she would be bullied, my little girl, facing bullies alone, as I had, filled me with fear and dread, and I cried for hours.

We explained to our family by telephone and said we needed some space, and we tried to just enjoy being parents, we sang and played with our perfect daughter and awaited her hearing aid fitting.

It took weeks, and by the time we were ready to try my daughters hearing aids, they squealed loudly when they were fitted, “surely they shouldnt sound like that?” I asked horrified. “The baby wont hear it” they said, and tapping a pencil on the table and watching Daisy look towards it, the woman said “they work, we will see you in a few weeks, and if you need any information, just go online to the National Deaf Children’s Society website, they have all the information you need”. I was taken aback, no advice, no leaflet, or book or instruction, not a jot, just go online, and research deafness from a charity, I wondered how people without internet access coped…..

So far we had met a couple of audiologist’s, and an educational specialist (seemed a bit much to be thinking education at a few months of age) And I admit it, these people in the very beginning just touched all the wrong buttons for me, they had absolutely no “bedside manner” where the tester had told us not to worry, the team of services handed to us, were like a team of worst case scenario experts, they totally took any hope, belief and dreams, and threw them in the bin file.

Some of the things we were told within three months of our child being born were

“She will never speak”

“if you don’t fit a cochlear implant we could take your rights as a parent away”

“she might never read or write”

“your child cannot hear you unaided”

“you are seeing what you want to see”

“you are in denial”

“your friends are compensating for your child’s hearing loss by seeing what they want to see”

“your friends are in denial”

It all seemed quite hopeless if I am honest, but on the first day we took Daisy out with her aids on, she was just  six weeks old, we went to our local cafe, and inside was a deaf lady and her deaf husband.

Her husband did not speak, and they sat signing, eventually I picked up my daughter and took her over, I pointed at her hearing aids, and they looked absolutely amazed, “I have never seen a baby with hearing aids” said the lady, she signed to her husband he signed back, “me neither” they had four hearing children, and we sat and talked for an hour and shared breakfast, our first day taking out our child with her what seemed huge hearing aids, stuck on her head with wig tape, was a good day, but the next few months were challenging.

Our first day out with our hearing aided child had been “direction” as my dad would say, we met that deaf family for a reason, for reassurance, to see an adult, who had been a deaf child surviving in the hearing world, gave us an immediate confidence.

But the look of pity we received several times over the coming weeks was just, well,  horrible, people apologised (what for? I thought inside, it’s not your fault she’s deaf) people asked questions we couldn’t answer, but the lovely thing was all our friends who, matter of fact said, “We have decided we will all go on a signing course, if Daisy uses sign” so gentle and genuine and wonderful to be so accepting and wanting to be part of her life regardless of what path of communication she may take on.

For that I am grateful, it was nice to not have to ask, it was even nicer to know people were so accepting, people we know have just accepted Daisy just as they would any other child, they do not speak louder or treat her differently, when we are outside our bubble of friends and neighbours who accept Daisy exactly how she is, and adore her quirks and personality, things can be a bit more difficult.

But the child who may never speak, who wouldn’t understand reading, and would find it hard to write, and would be behind at school, and might need an operation, was determined to prove all the outsiders wrong, as I write this Daisy is talking to her toy pony “your dress has fallen off pony, let’s get you dressed, its time for the party, it’s sooooo exciting”.

If ONE specialist had given me the tiniest hope that she would speak in sentences at five, the last five years would not have been such a difficult journey, but as my daughter comes over and says “look at rainbow dash mom, can I watch my little pony and rainbow rocks?” I am filled with absolute joy for us as a family, and sadness for those who have been pressured by the system.

“Rrr – Oh -C – Kicking K – S That spells Rocks mom” she tells me as I search for her programme.

Five years ago, this would have been an impossible dream, to have thought it would have been some weird denial of deafness to have hoped it would have been “unrealistic” and “false hope”.

In those first weeks, my mind only coped by thinking day-to-day, I dare not hope for the maybe, the what if’s, I just managed somehow to get through every day, with a smile on my face, and my emotions in the back of my head, and I got on, appointments, comments, opinions flooded me but just getting from one day to the next is what kept me going, that and my Facebook updates….

I have no idea what may have been if I had allowed myself to cry in front of my mother, who wanted to “grieve my daughters hearing loss” or if I hadn’t nodded politely at the person who told me she would never speak, without giving her a piece of my mind. But for a long time, I only spoke up when I needed to.

What’s happened since then, means I need to speak up for the future of all Deaf kids, and adults, as the services are slowly being taken away…

Read Clara’s blog here: https://hearingparentsofdeafkids.wordpress.com/