My advice to newly diagnosed parents…
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 you 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 am 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 would like to share some of what I have learned so far…
Firstly; let go of the guilt and accept things for what they are
For the first few months after B’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? (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.
Secondly; Be brave
Before B was diagnosed I would never have spoken to strangers or initiated conversation with people I did not know. 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.
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 of your strength for supporting your little person on their hearing journey.
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 hideous, adult sized, hearing aids on his tiny ears instead of 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 B.
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 genuinely 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 am not confident and proud of my children’s equipment, how will they ever be?
Thirdly; Try not to have any expectations
This has been, and still is, the most challenging thing for me. As a teacher I am constantly assessing and comparing progress. As a parent I am no different.
However I have had to try not to expect anything.
Try not to put pressure on B.
This is something, with regret, I don’t always get right.
B is a confident, happy, almost 4-year old who 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 would not know that he is 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 is easy to forget that he is deaf, and how tiring it is for him to listen.
Something I am well aware of yet I still, at times, compare his progress.
I often need to remind myself that his speech isn’t always perfect and yes he struggles with the pronunciation of some words (like most 3 year olds do) and that is ok. I try to accept that he is learning at his own pace and that it is ok if everything isn’t perfect straight away. However, the perfectionist in me struggles with this immensely.
Lastly; 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 is 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 the OH, and I, that we did not treat B differently to any other child. This is something I am proud to say we have achieved and will continue to do with both B and F.
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.
I am a lifestyle blogger from Northumberland, United Kingdom, and the mother of two profoundly deaf boys.