As every parent of a deaf child will know, an alarming barrage of choices face you when your child is first diagnosed with hearing loss, decisions which feel (and are) truly momentous, affecting—as they will—your child’s entire future. Nonetheless, how lucky we are to have choices, with modern technology and different therapy approaches offering so much hope and so many different options to so many families. I am acutely aware that some families do not have the same choices, either because they live in a country where access to technology is prohibitively expensive (or nonexistent) or because their children are on a different path, which leads them in one prescribed direction. That is why, despite our daughter’s diagnosis, we still count ourselves very lucky.

In my capacity as a Parent Ambassador for Auditory Verbal UK (AVUK) and author of books for deaf children, I was asked to write an article for the March newsletter of the Cochlear Implanted Children’s Support Group (CICS). Some of you may have seen this article posted already on AVUK’s site or indeed in the CICS newsletter itself, but for those of you who haven’t, here is a copy of the article:

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“Who on earth diagnosed this child?” asked the specialist. My husband and I looked at each other and then back at the specialist, realising in that moment that we had some tough news coming our way.

Our daughter, Onna, was almost two and a half years old. Of course, we had noticed that she was having trouble hearing and was not developing early speech, but we had been assured that this was due to glue ear, which would self-rectify in due course, so we had nothing to worry about. Onna would be fine and would have no problem catching up with her chattering twin sister, Sala.

We were living in Kenya at the time, but our story started in New York City, where Onna and Sala had surprised us with their unexpectedly early arrival into the world – they were born at 28 weeks and spent over 60 days in the neonatal intensive care unit (NICU). Some few months later, we were able to fly home to Kenya with them. They had both passed their new-born hearing screening before being discharged from the NICU so, two years down the line, when we were told not to worry about Onna’s hearing, we made the mistake of doing exactly that. Because she had passed her new-born screening, we believed the glue ear diagnosis must be right. We had no reason to doubt the diagnosis until, a few months later, we were on holiday in UK and decided to seek a second opinion, just for safety. That’s when our lives were turned upside down.

We discovered the truth, that Onna had severe-profound sensorineural hearing loss and auditory neuropathy spectrum disorder (ANSD) in both ears. Her only chance of ever learning to listen and speak was to get bilateral cochlear implants and undergo intensive speech and language therapy. Without hesitation, my husband Ian and I decided there was only one thing for it: we would change our lives completely in order to provide both our daughters with the best life chances possible – and there was no time to lose. So, having arrived in England for what we thought would be just a 10-day visit with family, the twins and I suddenly found ourselves house-hunting and starting a brand-new life in Cambridgeshire, while Ian went back to Kenya to close down our entire life out there. Onna had bilateral cochlear implant surgery just as she was turning three years old. At that point she was completely nonverbal.

We had been thrown into a completely new world about which we knew absolutely nothing, but our initial research us told us one vital thing: early intervention is key when teaching a deaf child to listen and speak. We learned (to our dismay) that the first three years of a child’s life are critical for the development of language, but you still have a pretty good window of opportunity until they are five. After that, things get much tougher – not impossible, but tougher and slower. Onna, aged three and only just having gained access to sound through her cochlear implants, was classed as a ‘neurological emergency’. We had to start stimulating her auditory brain as soon as possible. Ian and I had no idea of the scale or nature of the task ahead, nor what precisely it would entail, but we knew we would do whatever was necessary to help Onna develop speech and language and all the cognitive, emotional and social skills that go alongside. Our ultimate goal was that she should be able to access the same opportunities in life as her hearing twin sister.

We respect every family’s right to choose their own communication approach for their deaf children. Everyone has different circumstances and different values, and it is a very personal decision. We chose to pursue a listening and spoken language approach with Onna for many reasons. We believe a child needs to be surrounded by fluent language in order to learn language, and with the best will in the world, Ian and I were not going to become fluent in British Sign Language (BSL) quickly enough to give Onna the language support she needed straight away. Plus, we believe that being able to listen and speak will open up far more life choices for her in the end. Let’s do the hard work early on so that her life is easier later on, we thought. We would never stop her learning sign language as a second (third or fourth) language if she wanted to when she was older, but to start with, we were going to focus 100% of our efforts on spoken language.

We chose to enrol Onna in Auditory Verbal UK (AVUK)’s auditory verbal therapy programme because we liked their aspirational, diagnostic-led approach, which mirrored Ian’s and my attitude to life in general: reach for the stars while keeping your feet firmly grounded in reality. We knew Onna was going to have to play catch-up and work very hard, as she had missed out on three years of hearing, which put her a long way behind her peers in speech and language. She also had ANSD to deal with, so there was an awful lot for her brain to figure out before she could start putting it together and make sense of it all. Later on, we discovered that both her implants were failing, so she had been contending with that too. It’s no wonder, perhaps, that Onna initially made slower progress than anticipated. She worked hard, we worked hard, progress was coming but slowly, slowly. At times, we know that people wondered if we were making the right decision to pursue a listening and spoken language approach with her, but we kept seeing small but definite indicators of progress, especially at home, even if she would not always “perform on cue” when at Nursery or during her therapy sessions. These glints of progress gave us hope, and we continued to trust our gut feeling that Onna would get there in the end – she would do it at her own speed, but she would get there. And then, after about 18-20 months of auditory verbal therapy, Onna suddenly seemed to turn a corner, and her progress since then has been exponential. She has recently undergone revision surgery to replace both her failing implants. She sailed through the surgery and recovery much more smoothly than I thought possible, and the new implants are working wonders for her. There are many seminal moments I could share with you from our journey so far, and I’m sure many of you will recognise them from your own journeys – the first time your child said, “I love you” or, before that, the first time they turned to their name. These may seem like small steps for some people but are huge strides in our world.

Onna has always faced her challenges with such determination, courage and joy. She is a happy child and this, above all, is our yardstick. If she were miserable or frustrated, we would question the choices we have made and are still making for her. She is now seven years old, is a complete chatterbox and has age-appropriate reading skills (she is a bookworm). She loves music, football, swimming and riding her bike, is forming strong friendships and attends mainstream school alongside her twin sister. She is still speech delayed compared with her peers, but she is catching up fast. Her progress now is remarkable – her strides forward take our breath away and make us proud every single day - but she still has to work very, very hard. Subjects like maths, which (ironically) require such attention to the subtlety of language, are extremely difficult for her. But I’ll never forget the evening when, after bedtime story, Onna turned to me and said, “Mummy, please don’t go. I want to talk. I love talking. I want to talk all night.” For me, that incredible moment vindicated our decision to go down this difficult path, to keep striving for what had once seemed almost impossible.

Nonetheless, when I think about the mountain Onna has had to climb and is still climbing, it’s hard not to think of the “what ifs”. What if we had taken her to see a specialist sooner? What if she had got her cochlear implants two years earlier? How much easier would it have been for her? These are questions which can drive you crazy. We are where we are. But whenever the parents of newly diagnosed, profoundly deaf babies ask me for an opinion as to whether they should get cochlear implants for their babies straight away or whether they should wait and see if things improve, or even whether they should wait until their children are old enough to make the decision for themselves, my answer is always the same: do it now and start therapy to stimulate their auditory brain as soon as possible. Do it as soon as you can because the longer you leave it, the harder it is for your child.

And my second piece of advice (should it be asked for!) is this: as a parent, be prepared to immerse yourself in your child’s hearing loss journey, for this offers your child the best chance of success. There is no better guide, no stronger advocate, no greater champion of your child than you. This was another thing that attracted us to auditory verbal therapy: it puts parents in the driving seat. Your auditory verbal therapist will check in fortnightly with your child to monitor their progress and set appropriate goals, but above all they will train you as the parent to guide and inspire your child along their listening and spoken language journey. No-one has a greater incentive to see their child succeed than the parents, no-one spends more time with their child when they are young, and no-one knows their child as well, so parents are ideally placed to drive their child’s progress. Auditory verbal therapy constitutes more than just a schedule of therapy sessions; it becomes a lifestyle. For it to work best, it needs to be integrated seamlessly into every aspect of family life. This is not as hard as it sounds – your therapist guides you every step of the way and very soon it becomes second nature. Onna left the AVUK programme almost two years ago, but I still use auditory verbal strategies every single day at home, both with Onna and her hearing twin, Sala.

Since graduating from AVUK, Onna has continued to have an incredible support network around her, including dedicated professionals from the NHS and Cambridgeshire SEND Services, as well as her school, which has always provided such a nurturing, inclusive and motivating environment for her. When it comes to the people who have worked with Onna in the past, and those who continue to work with her and our family, I feel like we have won the lottery. It is thanks to all of them that Onna is now making such fantastic progress – combined with her miracle technology, her own hard work, her twin sister’s utter dedication and all the family’s wholehearted commitment - but I still trace back the root of her current progress to the foundation built by auditory verbal therapy, which four years ago opened a doorway in Onna’s auditory mind and taught her first and foremost to listen, as the basis for later learning to speak. It’s a long road, it’s a hard road and it can be bumpy. We still have a long way to travel along it together as a family, but now that we are on it, I wouldn’t change it for the world.

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For International Cochlear Implant Day on 25th February, I made this video of Onna talking about her ‘magic ears’. To me, the sheer joy that she feels at being part of the hearing and speaking world makes it all worthwhile - all the hard work, the endless hours on the road to and from auditory verbal therapy appointments, the hours of speech and language therapy, the agonising choices around communication approaches, the moving of our entire life from one continent to another, a complete career change. I just feel so grateful that we have been able to help Onna to find her own voice…and so much laughter.

It was an honour to be featured both on radio and TV during the week of International Cochlear Implant Day and World Hearing Day. You can listen and watch here:

BBC Radio Cambridgeshire - International Cochlear Implant Day

ITV Anglia - World Hearing Day