After a healthy pregnancy, Orson was unexpectedly born three months early. It was fair to say that after 61 days across intensive and neo-natal care we had gone through every possible emotion and we were ready to leave hospital.

So when we were told they couldn’t get a reading from one of Orson’s ears at the newborn hearing test we didn’t really worry. "It’s pretty common" was the response that we were given.

Fast forward three months, sitting in a dark room, Orson had the first of many hearing tests. The devastation when they told us Orson had mild-moderate hearing loss was immense. Weirdly, it felt worse than him being in hospital strapped to monitors and breathing apparatus, because we knew this time there was nothing anyone could do to reverse the diagnosis. 

Orson experienced a protracted glue ear and the consultant and audiologist were initially unable to confirm a baseline reading for any permanent hearing loss. Over the next year we came back and forth for eight further hearing tests, each time they were able to uncover a bit more information. Just after his first birthday he had grommets put in, and finally, at 18 months, his bilateral hearing aids were fitted and he was officially diagnosed with moderate-severe high frequency sensorineural hearing loss in both ears (his hearing loss has been caused by a mutation on the Connexin 26 gene).  

We were aware that there are many different forms of communication available for deaf children but we felt very strongly that we didn’t have the right to take away any potential choices for Orson before he was able to make the choices himself. So, we took the decision to ensure Orson could learn how to listen and speak so that had the opportunities that other hearing child had.

We had an upsetting response from some people in the Deaf community. We heard from many Deaf adults that hearing parents of deaf children should have no right to make decisions on behalf of their deaf children. That all deaf children should be able to sign as that's their 'key' language. This angered us as we felt that to be able to provide support for Orson, we needed unbiased information, so that we could make informed choices for our son. Over ninety percent of deaf children are born to hearing parents (just like us) so without unbiased support and information it is a scary journey.

In Orson’s first two years we got no emotional or well-being support. We had hearing test appointments and meetings with the audiologist and consultant to discuss the practical next steps. We didn’t meet our teacher of the deaf until Orson was almost two and a half. By that point we were frustrated, dismayed and pretty lost with the professionals that we had encountered. We learnt that unless Orson was classified as developmentally behind in his speech and language we were not a priority. I was told "he’s fine", "he’s doing well for a deaf child" but that was the issue for us. 

Whilst Orson would always be deaf, we did not want his opportunities and future to be defined and restricted by his deafness. Being deaf is not a learning disability.

I spent what was left of my maternity leave searching the internet, reading PhD theses, articles and contacting children’s charities to understand what I could expect from having a deaf child, what their future could hold and what technologies and therapies were available.  

My cousin in Australia told me about Auditory Verbal therapy and we found another parent who had been on the AV journey ten years ago. We did lots of further research on the benefit of AV before contacting Auditory Verbal UK.

We started Auditory Verbal therapy when Orson was 2 years old. It has become part of our daily lives and Orson loves his bi-monthly sessions with his therapist Frances. Orson recently had his Preschool Language Scales assessment. This assessment evaluates children’s understanding and use of spoken language. Aged 4 years 3 months, Orson is actually tracking at 5 years 5 months. This is an incredible achievement for a young boy who cannot hear the sound of a bike bell, birds singing and the doorbell ringing without his hearing aids. We are so proud of everything he has achieved so far but it’s by no means the end of the journey for us. We’ve got a huge amount of speech therapy ahead to help Orson learn how to use his tongue when pronouncing certain sounds but the key is Orson now has the tools to understand how to listen and associate the sounds he can hear into language. 

We want Orson be a kind and confident boy, who has the resilience to overcome set-backs, who understands his hearing loss and is able to communicate his needs to his friends, teachers and family. Most importantly we wanted to equip him with the skills and knowledge that he can achieve whatever he wants in life as his hearing loss will never hold him back.

The value that AVUK brings to the table is more than just helping the child learn to listen and speak like their hearing peers. It's been much more rounded for us. We’ve learnt how the auditory part of the brain works - the role of theory of mind, it's importance in communication and children’s mental health and the role of executive functioning in day to day learning and life.

I also think that AVUK helps children understand their deafness and what they can achieve – from public speaking, to fundraising and raising awareness. The ability to discuss what’s on your mind is key to the mental health challenges that are so prevalent in deaf children. We were shocked to find out that 40% deaf children are likely to suffer from mental health problems.

Over the Easter holidays Orson went to a tennis camp. We had spoken to the coach and we had spoken to Orson too. We told him where he should stand, what to do if he didn’t understand or if he missed something the coach said. His response was “Mummy, it's okay, I know how to talk to the tennis teacher”. Watching him talk to children and adults that he didn’t know and explain why he was wearing hearing aids made us very emotional. Our son was growing up and it highlighted to us the importance of giving your deaf child enough tools to have the confidence to help themselves.

At the end of the day, hearing or not hearing, life is challenging and you need the resilience to pick yourself up, try again and ask for help. The ability to discuss how you are feeling is key to the mental health of our future generations.

Auditory Verbal UK has been our lifeline, our emotional support and has certainly kept our mental health in check! They’ve gone above and beyond to help us as a family, Orson and his nursery. We will be forever in debt for their support and we are looking forward to getting Orson more involved with the charity as he gets older to help younger deaf children and their families.

- Avril, Orson's mother