To blog or not to blog?

To blog or not to blog? That is the question. For a long time, I have wanted to share my experiences of parenting a deaf child in order to help other parents starting out along a similar path and to exchange views on how to approach the many tricky situations and decisions we all face on this remarkable but tough journey. My hesitation to do so until now has been the consideration of our children’s privacy. My husband Ian and I have twin daughters, Sala and Onna, currently six years old. Onna is profoundly deaf, Sala is typically hearing. When they are old enough to understand, how will they feel that their story has been online for anyone and everyone to read? Ian and I have discussed this at length, and in the end the answer was quite clear to us. This story is not one of shame or regret, it is one of pride and perseverance – of daily challenges and daily triumphs. We’re not kidding ourselves - we still have a long way to go on this journey. And yes, there have been some extremely difficult times, and there will be again (it can be a rocky road at times), but ultimately there is nothing here not to celebrate and share, especially if it can help others.

When Onna was first diagnosed with profound sensorineural hearing loss and auditory neuropathy spectrum disorder (ANSD), there was much information to be found on the internet – I would mention the National Deaf Children’s Society website in particular as a reliable source – but the stories I really wanted to read were the personal ones. How did other parents deal with a similar diagnosis? Were there stories of hope out there that we could latch onto? Were there any pitfalls that we needed to be aware of? That’s when I found a blog called Alice’s Ears, which not only reassured me that success stories are out there (I was so new to all this at the time, I did not realise that success stories actually abound!) but it also made me realise that there is more than one option when choosing your child’s communication approach. The blog also pointed me in the direction of some useful additional information about ANSD, which remains a tricky condition to diagnose, even today.

Studies like this one published in 2019 suggest that peer support is extremely useful as part of a multidisciplinary approach seeking successful outcomes for deaf children and their families: “…63% judged that a parent who had a shared experience was the person best placed to offer help and advice immediately following the diagnosis of childhood deafness….An overwhelming 97% would recommend peer support as being useful.”

Having said that, I don’t think many of us parents need studies to convince us of the value of parent-to-parent support. Face-to-face meetings are great if you happen to live near other families with deaf children (and are able to do so with current COVID-19 restrictions), but I find online support equally helpful, where the net can be cast much wider resulting in a broader range of shared experiences.

Several years down the line now, with almost seven years of parenting a deaf child behind me (and still learning new things every day), I am a member of many online communities where we support each other, help each other out on the hard days and celebrate our children’s breakthroughs together. Of course, all children are individuals and no two situations are exactly the same, so we are all taking slightly different paths, some of which are bumpier than others but, essentially, we are all in the same boat. Therefore, we have a unique understanding of each other’s experiences, in a way that parents of a typically hearing child may not fully comprehend. Recall the inordinate joy you felt when your child could distinguish /s/ from /sh/ or could suddenly say the /k/ sound. Or the first time they asked for milk by saying “mi”. Or (maybe after months and months of your seemingly fruitless efforts), the first time they turned around when you called their name.

When your child rips off their hearing aids thirty times a day, or can’t distinguish /d/ from /g/, or comes home from school hyperactive (or dog tired), isn’t it helpful to have someone to turn to who has been there before, who can share tips on how to face each new challenge, no matter how daunting or seemingly trivial? And on the days when you feel you simply cannot cope any more (let’s face it, we all have these days from time to time), when perhaps your family or friends don’t completely understand what it’s like to be in your shoes, isn’t it comforting to be reassured by other parents in the same boat that this is just a phase we all go through… and that, despite everything, you will soon get up again and carry on being the best mother or father you possibly can be?

There is no doubt in my mind that this kind of parent-to-parent support is invaluable. It helped me out in the turbulent early days of our daughter’s diagnosis, it is still helping me out today. And that is why I have decided, yes, I am going to start blogging about this journey, and I hope that you will join me along the way. If you too are the parent of a deaf child/children, I hope my family’s stories will help you in one way or another, and even inspire you to start sharing your own stories. Please feel free to leave comments and observations, and even questions, which I will attempt to answer according to my own personal experience as a parent of a deaf child and her hearing sibling, but not as a professional speech and language (or anything) therapist, which I am not!