Having a baby during the pandemic was hard enough for many families but having a baby diagnosed with profound hearing loss created a whole host of additional challenges.

“Coping with the news that Eliana was deaf was compounded by having to attend appointments without her Dad because of Covid. It was so stressful and I just felt very alone.

Once we had the diagnosis confirmed I set about finding out as much as I could about hearing loss and what the options were for deaf children. Various sources pointed me towards Auditory Verbal therapy including a friend whose son had AV therapy in America.

Eliana started her sessions with Auditory Verbal UK (AVUK), the only UK-wide charity providing Auditory Verbal therapy, when she was just three months old – seven months before she received her cochlear implants. From the first session via Zoom it made perfect sense to us and the strategies become second nature to use in everyday life with Eliana. She is currently thriving on AVUK’s family programme, is already exceeding the listening and spoken language skills of children her age

and speaks in both English and Russian.

Despite Covid I was lucky to meet a number of other families with deaf children and I know what a difference that made to me. It made me realise I wanted to create a welcome for other families on AVUK’s programme to share stories and offer support.

With the help of the team at AVUK we hosted our first parents evening at our home in June 2022 with both families currently on and who had graduated from AVUK’s programme joining us to share their experiences.

It was wonderful to meet in person – everyone has that commonality and we can all understand the issues being faced. Having a newborn with hearing loss is very different to having a baby with typical hearing. Having families whose children are now older join us to share their experiences and reassure us that the future is positive, was also incredibly helpful.

From this first event we created a now thriving Whatsapp group where everyone is supported, not judged and free to ask any question or query that comes up. Friendships are forming and our community continues to grow. Together we are family ambassadors who can provide support and guidance to others. As well as hosting a second parents evening, we agreed a daytime event for the whole family including siblings would also be really helpful. It was like a big play date and it was so wonderful for the children to interact together and see others with hearing technology like their own. Their siblings also really benefitted from meeting other deaf children who are just like their brother or sister. 

It is fantastic that so many AVUK children attend mainstream school, but we all know that being deaf and wearing hearing technology has its own challenges and to meet others who face these same challenges provides that welcoming community I have dreamed of creating. To give both the parents and children a platform and opportunity to share experiences is ideal.

I want the parents’ evenings to continue and grow, welcoming both old and new AVUK families. I really want deaf children to have the opportunity to meet and benefit from peer-to-peer relationships. To this end I and another mother of a CI kid plan to launch a pilot run of an after-school club of performing arts for children with hearing technology in September.

I know that meeting other people in the same situation as me has made my journey so much less stressful and I’m so pleased that by establishing this community we can help ease the stress of the journey for others.”

To find out more about the family group or speak to an AVUK Family Ambassador who can give a personal insight into the specialist programme provided by the charity, please contact [email protected] or call 01869 325000.

You can also find out more about Auditory Verbal UK at www.avuk.org/

The article first appeared in CICS July 2023 Magazine.