The urgent need for early and effective support for deaf children – my appeal as a deaf parent with two deaf daughters

with Rayan Basma, deaf parent of two daughters who are also deaf

As our columnist, Matt Keer has written previously, outcomes for deaf children lag stubbornly behind their hearing peers, largely through the steady erosion of specialist support. One charity working to increase awareness, understanding and access to therapy is Auditory Verbal UK.

Founded in 2003, Auditory Verbal UK has grown to be the leading provider of Auditory Verbal therapy in the UK. The charity aims to raise expectations and outcomes for deaf children by providing services directly to families and sharing expertise with health and education professionals, so many more families can access Auditory Verbal therapy close to where they live.

Rayan Basma is a deaf mother of two daughters who are also deaf. She’s written for us about her experiences

Why we need better support so deaf children like mine can thrive By Rayan Basma

Growing up in Sierra Leone as a deaf child, there was little access to support. Nobody really understood what deafness was, let alone provide support to me when I was young.

But I was one of the lucky ones. My parents, especially my mother, never gave up on me and taught me that nothing comes easy unless you fight for it. Despite the lack of support for me in those important early years, my mother always had high expectations for me – despite what others thought - and was determined that being deaf would not limit my life choices. Without her, I would not be where I am today.

Becoming a mother

Fast forward a few years to living in the UK. When I became pregnant with my first child in 2013, I knew there was a strong chance that my child would be deaf. But, even knowing this when, at three weeks old, Mia’s bilateral hearing loss was diagnosed I was utterly heartbroken and inconsolable.

I feared my daughter would always be underestimated, the expectations of her would be low like they had been for me, and she would be isolated and unable to chat on the phone or enjoy music or the theatre.

But once again my own mother inspired me. She said: “You are the best thing that has happened to your father and I. Mia is a blessing and will be the best thing that ever happens to you. Be strong Rayan, she will be a star.”

And so the hard work began the next generation on. There were huge differences from my own childhood. The UK’s newborn hearing screening allowed us to know early on that Mia was deaf and advances in hearing technology also meant a whole range of options for Mia and for us. We were determined to ensure Mia got the support that was right for her and us as a family. We did a lot of research and sought a number of opinions. We agreed we wanted Mia to learn to listen and talk, and learned all about cochlear implants. I began to wonder whether I could also benefit from cochlear implants and how they might improve my quality of life. I was learning so much more about my own deafness as I was learning about my daughter’s.

Cochlear Implant surgery for me and my daughter

My surgery was a month before Mia’s and it was not easy to begin with. Having the implant later in life meant I struggled to adjust and was overwhelmed by sounds I could not make sense of. But sounds did gradually become more identifiable and I could hear things like birds singing, the washing machine cycle ending and most importantly my baby crying in the other room.

Mia was implanted and had her first ‘switch on’ just before her first birthday – there was no magic moment initially but at her second switch on her eyes widened. I knew that this was a significant step but just the beginning of the journey, I began to appreciate how and why my own mother had spent so many hours talking with me.

Rayan and one of her two daughters

It’s not all about hearing technology – support is needed

It was explained that having hearing technology like hearing aids or cochlear implants doesn’t magically allow children or adults to hear – our brains need to be supported to make sense of the sound we are receiving. But I knew that Mia would have a very different experience from me. Her brain would have access to sound from a very early age through the implant.

Some people told me that the implant would change everything, but it’s not so simple as plugging in the device and then you can hear. You have to really work at learning to make sense of the sounds and as you do that, you start to develop your listening skills and your language skills. With support, I knew that she would be able to do many of the things that I couldn’t do. This is all because there is a really key period for children learning to listen and talk. Getting support early, ideally before the age of three-and-a-half when the listening part of our brain does most of its development, was really important.

Auditory Verbal therapy – the right option for us

I found out about Auditory Verbal therapy from our teacher of the Deaf and after research, knew that this was the right approach for Mia. It would help us make the best use of her implants and learn how to listen and talk. The only place we could find offering the therapy was the charity Auditory Verbal UK (AVUK). We were so fortunate that their London base was accessible for us and that they also offered support with the costs, because at the moment there is no Government or NHS funding for it. We joined the charity’s family programme when Mia was 19 months old and she loved it!

The programme is all based on the children playing and the parents learning all the skills to support their child to listen and talk. That’s why Mia loved it and so did we. We were encouraged every step of the way by our therapist, Noel. He helped us to understand what we needed to do and how the different strategies could be incorporated into our everyday lives.

After three years of the programme, which we attended for an hour fortnightly, Mia achieved the same spoken language as a typically hearing child of her age. Mia is now nine, at a mainstream school. She loves music, dancing, and singing and has ambitions to become a vet. She is also an amazing big sister to Gabriella, aged two, who is also profoundly deaf and is currently on AVUK’s family programme doing really well.

Since having the girls I have even more admiration for my own mother and for the work and determination she put in to ensure my deafness did not hold me back. Her words when Mia was born inspired me to work for both my girls, but it should not be this way.

Early and effective support not widely available

Mia and Gabriella are very fortunate. So many deaf children do not have the same opportunities as hearing children because they don’t have access to support or know what is possible for their child.

Some families want to use sign language; some want to use spoken language like we did and some want to use both. We know how important it is that all families have access to the support they need. For our family, being able to get Auditory Verbal therapy was so important for Mia and Gabriella. If a family wants their child to learn to talk like Mia has done, they should be able to get this, wherever they live.

More specialists are needed to support deaf children to achieving their potential

That’s why I want to use the fight my own mother instilled in me to push for all families with deaf children to have these opportunities and why I have joined AVUK’s #HearUsNow campaign, calling on the Government to invest in early and effective support for deaf children across the UK.

AVUK wants all families who want their child to learn to listen and talk to have the opportunity to access Auditory Verbal therapy through publicly funded services close to where they live. And to do this there needs to be more specialist Auditory Verbal therapists working in the NHS and local services. For us, our Auditory Verbal therapists encouraged us to think big and aim high. We hope that the Government will have the same ambition for all deaf children.

Calls for Government investment

The #HearUsNow campaign is asking for the Government to have higher expectations for deaf children. An investment of just £21.5 million over the next 10 years will not only support more deaf children to achieve their potential, but it will also provide economic benefits of £152 million over 10 years and £11.7 billion over 50 years. 

My mother was right – my daughters are a blessing. The best thing that has ever happened to us. They are both brave, wonderful and amazing shining stars and we could not be more proud of what they have achieved so far, but we need to fight for all deaf children in the UK – they should all have the opportunity to shine brightly.

Read more about the charity here

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