Ethan and his family live in Northern Ireland, where there is no local access to Auditory Verbal therapy. However, thanks to our Belfast project with parent group The Hearing Hub, Ethan and his family were able to access our programme at a distance through a combination of visits and Skype appointments. Ethan's mother Krystal shares their story below. 

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When Ethan was first diagnosed at 10 days old as profoundly deaf I would spend hours online looking for options and some light in what I felt was an ocean of darkness. When Ethan was five months old we were given the news that hearing aids would never give Ethan enough access to sound for him to acquire spoken language and we were referred to the cochlear implant team in Belfast.

My husband and I were devastated at the thought of our son never speaking and threw ourselves into the cochlear implant process hoping Ethan would be found to be a suitable candidate. As we researched options for cochlear implants we found AVUK. I was amazed at the video clips of profoundly deaf children listening and speaking just like their hearing peers and felt immediately this was the answer I had been looking for.

Ethan thankfully was found to be a suitable candidate and was implanted at 14 months, his ‘switch on’ followed one month later, and in June 2013 we flew over to London to meet the team at AVUK.  

We began our journey that day and have never looked back!

When we had our first meeting and session with Louise I knew we had started an incredible journey. We came away from our first visit full of hope and excitement. AV therapy is so unique in that the sessions are directed as much, if not more, for you as a parent. The parent is trained as the child's own AV therapist. When we began our sessions via Skype I was nervous as I didn't know how Ethan would respond to sitting and listening but I can honestly say that every Skype session was a success. Even when things didn't go to plan we benefitted from our precious time with Louise. 

There was definitely challenges with learning over Skype but I can genuinely say that these challenges helped improve Ethan and my communication with each other. Ethan found his voice during our sessions with Louise via Skype. In one session Ethan wouldn't sit at the table. He ran to the stairs and I felt lost because at that time this was becoming more and more common with Ethan. He was shutting down and running away from me refusing to use his words and communicate with me. Louise stayed completely calm and turned the session around. She asked me to speak to Ethan and in giving him several options, she gave him a voice. Ethan and I sat on the stairs with Louise sitting on Skype and we talked about why he didn't want to play the game. He was tired and found the game too hard he was frustrated and annoyed that he was finding the game too hard. Ethan wanted to play the game a different way. Step by step he was given the language to explain his thoughts, feelings and ideas. As his mum I just didn't think that was what he needed, this scaffolding of language, but that was such a turning point for us as a family. What a break through and what a day for us all! Ethan now doesn't stop talking and telling us all about his thoughts, ideas and feelings. He's a chatterbox hehe!

I would highly recommend distance learning for families who are unable to access AV in person. You work with Louise/Your AV therapist setting the plan/goals for each session and have achievable take home messages at the end of each session.

AVUK are an amazing team of professionals who look after your deaf child and family in any way possible. When I came to Louise with concerns over Ethan's mapping and his limited access to certain sounds, Louise immediately took those concerns on board. At a time when I wasn't being listened to Louise listened to me and believed me, she organised for us to meet with Josephine Marriage, Audiologist at Chears, and a report was written up and sent to Ethan's implant team. Changes were made to his maps and rather than presenting with a disordered sound system with unintelligible language, just over a year later we are here with Ethan graduating from AVUK at age five years and 10 months with the language of a child aged six years eight months!

I am just so grateful we were able to access AVUK via Skype and would say to any parent considering to start their journey that they couldn't be putting their child and family into better hands. If you stick with it there really are no limits. Reach for the stars with your deaf child, the feeling when you reach them, it is more than you could have ever hoped for! 

Written by Ethan's mum, Krystal, in June 2017