Jake was diagnosed with bilateral profound sensorineural hearing loss which we found out was caused by a mutated gene called Connexin 26, it meant he easily met the criteria for cochlear implantation.

He was fitted with his Advanced Bionics Naida Q70’s at Great Ormond Street Hospital when he was 20 months. He was ‘switched on’ a month later and on the way home from the hospital that day was awoken by a passing car sounding its horn, it was very exciting as previously he wouldn’t have heard a jumbo jet taking off next him.

Finding out our first-born son was profoundly deaf at just a few weeks old was devastating, all the things that go through your mind when having a baby; would he want to be a firefighter like his daddy and grandad when he grows up or play football; would he love dancing like me or play an instrument.

Those first few weeks and months were extremely difficult, back and forth to the hospital and different clinics, for various tests to try and find out what had caused his deafness and whether he had any further additional needs, while also adjusting to just being a mum. I’d made some lovely new ‘mum’ friends while pregnant but couldn’t always face joining them at the baby classes they were attending, everything seemed to involve reading or singing, which Jake couldn’t hear, and left me feeling upset and isolated. 

Thankfully where we live in London, we had the invaluable support from an early support service for deaf children and their families, called EaST17. As soon as we found out Jake was deaf, we had a visit from one of the EaST17 parent support coordinators. Being a parent of a deaf child herself, she was able to provide us with valuable information and insight into the world of deafness, and more importantly at the time, a shoulder to cry on.  

She introduced us to their weekly coffee mornings where we had the chance to meet other parents of deaf children and meet deaf adults. Our children could play with other deaf children, while our family had the opportunity to learn some basic signs taught by a Teacher of the Deaf. This gave us a great foundation to communicate with Jake, while we made the decision to have him fitted with cochlear implants.

I first heard about Auditory Verbal UK through the EaST17 coffee mornings. I was having trouble getting any access to a local speech and language therapist and knew that a lot of work was needed for Jake to get the most out of his implants. We were introduced to a 10-year-old who also had cochlear implants, his speech, listening skills and confidence blew us away. His mum had been through the AV programme years earlier, and recommended it, and we knew we had to give Jake the same opportunity.

I called AV later that day and from our first session our experience has been fantastic, everyone we have dealt with has been extremely helpful and welcoming. Jake loved attending his fortnightly sessions, he had a great relationship with his therapist Noel. It always amazed me how he could keep his attention for a whole hour, but to Jake each session was great fun, playing games and reading books.

Each session gave us the skills and the confidence to turn every day activities into listening opportunities for Jake, we were given clear tasks to focus on for 2 weeks, which were also shared with his nursery and Teacher of the Deaf. Each session was filmed and then watched by Jake’s grandparents and nursery key worker so we were all working towards the same goal. Each session could also be tailored to what Jake needed the most at that moment, from learning to share to help with potty training. I honestly believe this has helped Jake to become the confident and social little boy he is today. 

AV’s help didn’t stop at the end of the fortnightly sessions either, they have attended information days we’ve held for the local deaf children’s society I helped set up, and they continue to hold training sessions which Jake’s school teachers attend at the start of each school year.  

I do not know what we have done without AV, and it’s always one of the first things I mention and recommend when I meet another family with a deaf child. 

When we started the AV programme I was on maternity leave with Jake’s twin brothers, so our money was being stretched further than we had planned for, so thankfully the bursary scheme was there to help us fund that first term. Then eventually after quite a fight with the local authority, and with lots of support from AV, we managed to get our therapy funded through Jake’s Education and Health Care Plan.

Jake is a very happy, active and fearless little boy. He has thrived in our local mainstream primary school, he loves to learn and is always reading, especially history and science books and loves to test us with interesting facts that he has read about. 

He loves his sport and plays football and cricket for local teams at the weekends, always giving 100% in everything he does, and has made some lovely friends at school and through these activities.

He is now looking forward to starting senior school. Our local mainstream senior school offers lots of sporting opportunities and also has a deaf support department, and Jake is excited to be going there with lots of his existing friends as well other deaf children. 

I’m excited to see what the future holds for him and know that he can achieve anything he wants to, and that is all thanks to the amazing support we have received for him from the beginning, and AV is a massive part of that and I will be forever grateful. 

Emma- Jake's Mum