22
April, 2022
Being a deaf/hoh mum
When I found out I was pregnant with my daughter I was ecstatic, my own mini me. I’d always wanted a little girl, I grew up wanting to be a Mum more than anything. Despite the excitement, there was one thing that weighed heavily on my mind. Would I even hear her? Would she even hear me?
I decided to share my experience with being a deaf parent and asked my deaf friend, Saphron about her experience too.We hope this blog will help new parents of deaf children or help ease deaf parents becoming parents for the first time.
MY HEARING LOSS HISTORY
I was two years old when I was diagnosed with Otosclerosis, a type of hearing loss that causes abnormal bone growth in the ear. Unfortunately, my hearing loss was severe and I grew up wearing hearing aids that did nothing. Finally, at 14 I got hearing implants that changed my life and get me the ability to hear clearly. As time has gone on, my hearing has worsened and worsened. I now only have 5% hearing in total. My implants are a saviour, but there are still many sounds I can’t pick up.
The anxiety I had for expecting a baby was mainly for when I’m not wearing my implants. I don’t wear them to bed. What if I don’t hear her crying at night? What if I’m in another room and my implants don’t pick up on her cry? What if her cry is that quiet, I don’t hear it the moment she is born? What if I’d passed on my hearing loss to her?
WHEN WILLOW WAS BORN
On the 11th August 2016, my beautiful baby girl arrived after 28 hours of labour- she didn’t cry. I remember thinking it was because she was so quiet and my implants couldn’t pick up on her. Turns out she was just too busy sucking her fist. When she was placed on my chest, I could hear her little gurgling noises. I was so relieved because if I could hear that then I’d definitely be able to hear her cry. Except I didn’t. In the first few nights,without my implants on I had to be woken by someone else. I couldn’t hear her tiny wails. It broke my heart completely. I wanted to be an independent ‘normal’ Mum but I couldn’t be. I felt like motherhood had been taken from me in a way as it wasn’t how I’d imagined it. My Mum coming into my room to wake me up, so I could see to Willow, often with the bottle made for me. I was devastated.
However, as time went on my ‘Mum instincts’ kicked in and I started to wake up before she did. She’d start to stir in her cot, I’d get up and make the bottle downstairs and return just before she started to cry. It was like clockwork and somehow I just knew she was going to wake up. It gave me that Mum independence I so desperately wanted. My Mum journey was back to how I pictured it, snuggled on my bed feeding her the bottle that I had made.
AS SHE GOT OLDER
Due to my hearing loss, Willow was tested every two years. She also had a hearing test when she was first born. Every test came back clear, she didn’t inherit my hearing disability. It was more likely she would be a direct descendant of myself but she was like everyone else in my family. Willow was around 1 years old, when a deaf friend of mine suggested something called ‘Makaton.’ Makaton is a sign and symbol system to support speech- perfect for toddlers. I ordered a book on amazon and started to learn with her.She picked it up amazingly fast and it made things easier. If she woke up in the night- she could now sign to let me know what it was she needed. Whenever I had sensory overload from the noise I’d switch off my implants to give me a break. Willow could now sign to me during those hours in the day too.
MASK MAYHEM
In 2020, masks were introduced due to a global pandemic- Covid 19. This made going to the shops and communicating with people extremely tricky. I could never hear Willow’s teachers at the end of the school day if they tried to speak to me. I could never hear people who were asking for directions or asking me where something was from. Many people weren’t comfortable with removing their masks to allow me to lipread. It felt very isolating but Willow understood, she would do her best to communicate what was being said. Half the time I didn’t even know someone was talking to me and little Willow would tell them that I was deaf.
My fear and anxiety was put to rest, I adapted just like with every other hurdle I faced growing up with a hearing loss.
ADVICE FOR PARENTS OF A DEAF CHILD
From personal experience as a deaf person I’d say to learn sign language, even if it is just the basics. There are courses available online and you can find classes nearby if you’d prefer a face to face tutor. It can open up many doors, help with communication and I think it’s important to note that signing is becoming increasingly popular and not just for the deaf community. Many people with learning and speech difficulties use sign to communicate too. Wouldn’t it be lovely if less people felt isolated by their disabilities?
Pay attention to what sounds they are and aren’t hearing, it’ll be able to tell you a lot about their ability and restrictions. I went years without hearing a thing in class, I missed out on years of my education because I couldn’t hear. I didn’t know because it was my normal, I was used to not hearing.
Reach out to the deaf community, if like my family you’re all hearing and experiencing the deaf world for the first time don’t be afraid to reach out for advice. It is easier now more than ever as there are facebook groups for everything.
SAPHRON’S STORY
Growing up was quite hard as bullying took part in my childhood. Whenever they saw my implant they would pick on me alot. I’d wear my hair down in an attempt to hide it from everyone. It took me years to get over it and realise my life was worth living. That I was perfectly fine just the way I am. I struggled with anxiety and felt overwhelmed by every noise in the background as I had to concentrate on what people were saying. I missed out on quite a lot like concerts and just being able to hear without having to tire myself out with lipreading and concentrating extra hard on what was being said.
I was really excited to become a Mum, I couldn’t wait to meet my son but I was worried about not being able to hear the baby crying or wanting something. It was nerve-racking but I learnt how to work around it with the support I got from the TPA (the prevention alliance). They provided me with specialised equipment, a radio near the baby’s cot which alerts a vibration pad (under my pillow ) and a flashlight (on the bedside table) to wake me up when the baby is fussy/crying.
My eldest Jaxson knows quite a few signs like ‘thank you, please, bed, food, drink, hi and bye’. He knows to tap on my arm if I can’t hear him to get my attention. He is very aware as I teach him how my cochlear implant works with it on and off.
I would advise parents of deaf children to learn sign language and make sure they know they’re loved for who they are. Show them every deaf or disabled role model, it really helps them to keep their heads held high and think positive. It’s just a barrier but it is possible to have an amazing future. Also ensure you have equipment suitable for deaf children to make them feel more comfortable and relaxed. For instance a vibrating alarm for waking them up for school, flashing doorbell and fire alarm- anything that will make their lives easier.
For additional support and information check out the hearing link organisation.
https://www.hearinglink.org/connect/useful-hearing-loss-organisations/useful-organisations-uk/
For more real life stories on our blogs click here.
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