Rachel's story

Rachel is mum to Max (3), who’s profoundly deaf. This is her story.

“Max was born by C-section and when there was no clear response from his first hearing screening, we were told it was quite common and nothing to worry about.

Finding out Max was deaf a few weeks later was a massive shock. I went down a rabbit hole and worried it was because of something I’d done during my pregnancy or because I’d had a caesarean. We later found out Max’s deafness has a genetic cause.

I’m a teacher but hadn’t come across many deaf children. Max was having lots of tests and I went on a downward spiral. There was a lot to take in, but looking back, I was stronger than I thought.

We quickly found the National Deaf Children’s Society and called their Helpline. I wanted to know everything would be OK. Most deaf children are born into hearing families, so there’s a fear of the unknown.

When Max was two, I started training to be a Teacher of the Deaf, a specialist teacher working with deaf children. There I met another parent with a deaf child of a similar age. She’d applied for an Education, Health and Care Plan (EHCP), which is a legal document that outlines how children’s support needs will be met. She suggested I talk to the National Deaf Children’s Society about it.

Emma, one of the charity’s advice and guidance officers, helped with the application. But unfortunately, just before Christmas we had a letter saying it’d been rejected. In our area, it’s unusual for a child of Max’s age to be awarded an EHCP.

Emma said she would support us to appeal against the decision. She checked through everything I was sending, provided more evidence and attended the meeting with me. She thought of things I hadn’t, like data showing how important support is in the early years. Emma really knows her stuff and I believe her information was one of the things that tipped the balance.

There aren’t any specialist resource bases for deaf children in our area, so the support has to be right. Now, because he has an EHCP, Max will have extra checks of his listening and learning, he’ll get pre-teaching of phonics, and phonics will be taught both visually and orally.

I know there will be times when Max will question things. But right now, he has age-appropriate language, is confident and sociable and has lots of friends. It’s definitely not as scary as it was at the beginning.” 

The work of our advice and guidance officers in North West England is supported by a grant from the Eric Wright Charitable Trust.