Insight: Unexpectedly having a deaf son changed my perspective on life (BSL)

It took my partner and I a good few years to get pregnant with our first child. When he came along, we naturally loved him at first sight. They say you learn a lot with your first child and we certainly did. We noticed he was ‘different’ compared to our friends children. He was uninterested in sports, fascinated by very unusual topics, struggled with particular sensory things and found social events hard.

He was later diagnosed as being on the autistic spectrum with ADHD and for a time there was a period of grief where we struggled to get our heads around the unique needs our son had. It sounds strange – grieving for parts of a child – but I knew that that was what my partner and I needed to do to process how we were feeling – to grieve for what we thought we were going to get but didn’t.

We thought our son would be the sporty type, playing football every Sunday and going for bike rides and loving family gatherings. Instead we had a bright, curious child who wanted to learn more about astronomy and mathematics than we could possibly give him and struggled with meltdowns when he felt overwhelmed.

We carried on as best we could and then when our first son was five we fell pregnant – unexpectedly – with our second son.

Our second son was born with a severe hearing loss in both ears – a type of deafness that was picked up on the newborn screening and confirmed with numerous further tests. I remember feeling absolutely devastated – I had never had anything to do with deafness in my life and the prospect of parenting a deaf child left me feeling overwhelmed, confused and a failure.

I had already found it difficult to come to terms with the needs of our wonderful neurodiverse first child. Yet now we had a child with a completely new set of needs to think about.

Nothing really prepares you for the torrent of emotions you feel when you grow, birth and meet your new child. So when it turns out not as you expect – it is hard. And even harder when your friends are having their own children – who are exact copies of themselves with no additional needs or differences.

I kept asking myself ‘why us?’

I fell into deep periods of depression where I felt unequipped to give my sons what they needed and it was during a GP visit that it was suggested I find a support group or a parent group for those going through the same.

I found two groups in particular that supported me through this really dark time. One was a parent carer SEN group – for those looking after children with all sorts of additional needs. And the second group was a local deaf children’s society with other parents who had young deaf children.

I found that – like me – most of these parents were doing this with no experience or prior knowledge. I made some really good friends and through our conversations I felt like I had started to change how I looked at things. I remember one parent whose child has severe learning disabilities, she told me ‘don’t forget to enjoy them’ – and it was like something inside just clicked. A lightbulb moment!

I had been so worried about not being able to support my children to ‘fit in’ with society or communicate or achieve, that I had forgotten to just enjoy them for who they are. I needed to respect their needs and honour them but also love and support them – not try to change them or make them the same as everyone else.

Once I got over this feeling of initial sadness and grief I started to notice the beauty that both of them had really given me. My eldest taught me about accepting everyones hobbies and interests. He still teaches me now about patience and working with his limitations so he doesn’t become overwhelmed. And if he does have a meltdown, it’s not the end of the world – it doesn’t mean anything about me as a parent.

Then my second son, who is deaf, has amazed me by how flexible and resilient he is. He uses hearing aids and a mixture of speech and sign language to communicate, and through it all, he laughs so much at everything! He truly is a bundle of joy! When we started learning signs together, I had another epiphany that I never would have learned to sign if it wasn’t for him and so it really was a gift.

Funnily enough our second son is incredibly sporty and loves nothing more than a kick about with his Dad and his friends at school. So we did get the sporty child we envisioned, we just didn’t realise he was going to be deaf!

As the boys are both still at primary school (although they attend two separate schools which individually cater for their needs) I am remembering to enjoy them both still being so young and reminding myself to look at things differently.

If I could go back in time or give myself a message back when we found out the boys diagnoses, I wish I could tell myself that it wasn’t my fault, that they had done nothing wrong and that everything was going to be okay. As a parent I have slowly had to learn this for myself.

My second son has also amazed us both by how accepting and straightforward he is in his thinking. Someone at school had recently asked him why his brother went to a different school and what was ‘wrong’ with him? He answered that there was nothing wrong with him – he was just different. And he shrugged it off and carried on with his day.

That’s what I’ve learnt from my boys if nothing else. There’s nothing wrong with them – they’re just different. And that’s okay!

I hope if any other parents are reading this and struggling to come to terms with a child’s diagnosis – please be assured that there is support out there for you and you are not the only going through this. Everything will be okay.

This blog has been written anonymously as part of the Insight series where readers are invited to share their story or news about their interesting job with The Limping Chicken. If you have a story to share please email rebecca@rawithey.com

Image courtesy of i-stock photos.