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My advice to newly diagnosed parents

Published Date: 13 Jan 2022

Anyone who has a child with hearing loss will undoubtedly remember the feelings they experienced during diagnosis. Feelings that you will most likely never forget but will learn to accept with time.

Raising deaf children in a hearing world is challenging and brings a rollercoaster of emotions.

It has changed me for the better. I’m a stronger, more tolerant, person because of it. I have learned so much that I never knew. I have experienced situations I would never have encountered, and I have found strength that I never knew I had.

I’d like to share some of what I have learned so far.

Let go of the guilt and accept things for what they are

For the first few months after Baye’s diagnosis, I felt enormous guilt. Could I have done things differently? Should I not have gone to that rock concert? Was he too hot? Did I overheat him? Did I take too long during delivery?

Thousands of questions went through my head. I was convinced I had done something wrong and that somehow I had ‘made’ my little boy deaf.

The truth is, whether you get to the bottom of why your child is deaf (as we did through genetic testing) or you never know, it certainly wasn’t your fault.

Deafness can be caused by a number of conditions, illnesses, syndromes or genes. Sometimes an answer can be found and sometimes it cannot.

Once I had accepted that it wasn’t my fault, it became easier to focus on moving forwards. This is vital as you will need all your strength for supporting your little person on their hearing journey.

Be brave

Before Baye was diagnosed, I would never have spoken to strangers or initiated conversation with the public. I would never have questioned or challenged professionals. I would have felt embarrassed if I felt strangers staring at me or my family.

However, being the mother of deaf children has forced me to grow a thick skin and encouraged me to find confidence that I never knew I had.

Having a child who wears equipment on their head, especially from such a young age, will inevitably cause stares and sometimes questions from strangers. People cannot help but look.

At first I hated it.

I wanted the ground to swallow me up. I hated that my baby was being gawped at because of these adult-sized hearing aids on his tiny ears instead of ones for the cute little newborn that he was.

Yet deep down I knew I had to be brave. I had to expel confidence despite the weakness that I felt.

I learned very quickly to get in first. Instead of returning the stares with a dirty look or red face, I smiled and introduced Baye and explained he was deaf. People have lots of questions once that ice has been broken, and although you get the odd looks of pity or sympathy, most people are generally interested and amazed.

I have learned to embrace the most intimidating situations and to use it to educate others. I have learned to be brave and to take control of those inevitable stares.

If I’m not confident and proud of my children’s equipment, how will they ever be?

Try not to have any expectations

This has been, and still is, the most challenging thing for me. As a teacher, I’m constantly assessing and comparing progress. As a parent, I’m no different.

However, I’ve had to try not to expect anything. Try not to put pressure on my boys. This is something, with regret, I don’t always get right.

Baye is confident, happy, and speaks very well for a deaf child. He is keeping up with his hearing peers and has always done exceptionally well with all of his hearing tests since implantation.

If it wasn’t for his special ears, you wouldn’t know that he’s deaf. This, however, can put pressure on him, and there becomes an expectation that he should be able to do things or understand things that a hearing child does. It’s easy to forget that he’s deaf and how tiring it is for him to listen. This is something I’m well aware of, and yet I still, at times, compare his progress.

When he was younger, I often needed to remind myself it was ok when his speech wasn’t perfect or when he struggled with the pronunciation of some words (like most toddlers do). Even today I try to accept that he’s learning at his own pace and that it’s ok if everything isn’t perfect straight away. However, the perfectionist in me struggles with this immensely.

Enjoy your child

It’s easy to get lost in the foggy whirlwind of hospital appointments, visits from professionals and the constant strive to ensure equipment is in good working order. It’s easy to become so focused on the tests and assessments that you forget to enjoy the little person behind it all.

This is something I vowed to avoid from the very beginning. It was extremely important to Marc and me that we did not treat Baye differently to any other child. This is something I’m proud to say we have achieved and will continue to do with both Baye and Flynn.

My advice to you…

Get out there and enjoy your child.
Go camping in the woods.
Splash in puddles whilst singing in the rain.
Take them swimming in the sea.

Do every single thing you would do if they were not deaf and enjoy every minute. They are only little for such a short time, don’t waste it fretting about how well they are doing – enjoy them and they will thrive.

Carly and Marc

Carly and Marc are parents to Baye (6) and Flynn (2), who are both profoundly deaf and wear cochlear implants. They run the business HEAROES, which sell skins and accessories for hearing equipment. You can find them at www.hearoes.co.uk, on Instagram at hearoes_uk and on Facebook at www.facebook.com/hearoes.co.uk.