Following on from Deaf Awareness Week, which ran from 1st to 7th May, we’re honoured to feature a personal account from our guest blogger and local mum, Tess. She discusses her journey of raising a deaf child, offering practical advice on finding support, reflecting on lessons learned, and sharing her honest perspective on what she wishes she’d known earlier.
My experience of raising a deaf child
Have you ever sat in a soundproofed room? It’s a strange place to be. There’s no natural light. Sounds seem to hang in the air, unclaimed. Everything feels flat.
When we found out that our son was deaf, we had been sitting in a soundproofed room for nearly 2 hours. It was 2021 so my husband and I were both wearing masks. We had to guess one another’s emotions from the look in each other’s eyes. In my arms was my 4-week-old baby boy, Lucas. On his beautiful sleeping head were various stickers holding wires that were attached to a machine on a computer desk. A kind audiologist, hidden behind her own mask and wearing a plastic apron, was tapping at her keyboard reading a graph on a screen that we didn’t understand; a graph that held information about our son.
No one had spoken for 45 minutes. Everything was silent.
When she finally had all the information she needed, she turned around. We sighed a collective sigh of relief that Lucas had managed to stay asleep and quiet for the whole test. His little inquisitive fists hadn’t pulled out the wires and the test had been “successful”.
Yet she looked sad. I can’t remember her exact words but I clearly remember the words “significant”, “profound” and “hearing loss”.
Our son was deaf.
Now what?
90% of deaf children are born to hearing parents
Like the majority of parents who find out that their child is deaf, we had no experience of deafness. Most of the time, parents find out about their child’s deafness in a clinic or hospital which automatically gives the impression that deafness is something to be afraid of or worried about.
The medical profession has a long way to go when it comes to giving parents the right information when their child is identified as deaf.
Here are 5 things that I wish I had been told at the time:
1. Feel all the feels and take a breath
Before you can focus on anything else, you need to look after yourself and accept whatever emotions you are feeling. I remember feeling very empty immediately after the appointment and unable to process it all. I blamed myself for a very long time thinking that I had done something during pregnancy to damage his ears. I grieved all the things that I thought we would miss out on and worried constantly about his future. As if that wasn’t enough, I also felt angry with myself for feeling sad and for judging my own child in this way.
Everyone processes their child’s diagnosis in different ways, and whatever feelings you have will ebb and flow. Thanks to finding some great resources and a community of other parents, I started to feel more positive about a month later, but don’t be surprised if those feelings last longer. Everyone is different and that is absolutely fine.
2. Build a village of support around yourself
I have had the pleasure of making many new friends while navigating the (sometimes bumpy) path of Lucas’s deafness. I have written a separate blog about all the places you can find support and friendship when raising a deaf child.
Home-Start are also able to help so if you feel like you might need extra support, get in touch with them. You can find out more on their website.
I have also set up an email account specifically for parents (or other relatives) of deaf children to contact me if they need to chat. I’m happy to share more about our experience or elaborate on any of the points in this blog post, or just listen to how you’re feeling. Get in touch at TessAndLucasSayHello@gmail.com.
3. Get to know the Deaf Community
One of the best things you can do to help reduce any fear you have around “deafness” is to get to know your local Deaf community. There are so many wonderful things about deafness that we just don’t appreciate in our hearing world. I wrote about this for a popular deaf blog last year. There are some really friendly Deaf communities in Cambridgeshire and Hertfordshire who would love to meet and support you and your children such as The Cambridgeshire Deaf Association and The Phoenix Group for Deaf Children and Young Adults in Stevenage.
4. Learn British Sign Language
Before I started learning about the Deaf community, I incorrectly assumed that British Sign Language was something that Deaf people had to resort to using; that it was just a way of translating spoken language into signs. British Sign Language is so much more than this. It has been used since the 1500s, and has its own grammatical structure, regional variations and history. It is proudly used by the Deaf community.
It is a very natural way for deaf children to communicate and gives them access to language which is essential for confidence and development in those early years. There is also a lot of evidence that sign language helps deaf children to acquire spoken language once they get access to sound through hearing aids or implants.
British Sign Language is becoming more and more popular to learn within the hearing community too, with a BSL GCSE being introduced to the curriculum as early as 2025. If you are interested in learning to sign then here are a few places you can look at:
Where can I learn to sign?
- If you have a very little one, then TinyTalk and The Signing Company are great toddler groups to join. Try to avoid Baby Sign or Makaton which don’t use British Sign Language.
- The NDCS have a family sign language course which you can sign up to on their website if you have a deaf child in your family. You can also access their videos on YouTube.
- Some adult learning courses run by the local authority offer free BSL courses. We attended one run by the CAM Academy Trust but there may be others nearer to you.
- You can also study for BSL qualifications which is accredited by Signature. I am currently studying for Level 2, and my husband has done Level 1. There is a lot of teaching hours covered in the courses so they are expensive, but there are funding options that you can explore with the Cambridge Deaf Association and through the Birkdale Trust.
5. Enjoy your child
I’ve put this point at the end of the list because it is such an important one to remember. It is easy to instantly immerse yourself in research and spend time worrying about whether you’re doing the right thing. So much so that you can forget to enjoy all the wonderful moments with your child.
The day we found out Lucas was deaf, we still drove home with the same wonderful child, but we just happened to know a bit more about him than we had before. We knew that he had no access to sound but we still didn’t stop talking or singing to him.
Your child still wants to interact with you in the same way they always have. Don’t stop doing all the things you would have done before your audiology appointment.
One tip I would give is to make sure your child is able to face you when you play with them or talk to them. Deaf children are incredibly visual (it’s one of the many superpowers you will discover your child has), so get down to their level to allow them to see all of your wonderful expressions.
Everything is going to be okay
I hope this blog has been helpful. If you are a parent who has just found out that your child is deaf, I hope you now feel less alone if you’re feeling overwhelmed or concerned. With your love and support, your child is going to thrive. Surround yourself with support and information and please do get in touch with me if you would like to talk about anything.
Remember to take a look at my other blog with all the sources of information and support you can access.
