Kirsten Abioye: Why I’m part of the ‘Families failed by Lothian Audiology Action Group’ (BSL)

I’m Kirsten, a hearing wife and mother to two children, from Midlothian, Scotland. My youngest son is profoundly deaf.

Looking back on the time between my son’s birth and his deafness diagnosis almost 3 years later, I feel full of sadness and guilt. I knew something was going on with him, but I didn’t know what and therefore he wasn’t getting the support he needed.

I trusted health professionals who told me that he had a temporary hearing loss and that he was “fine,” that I was just an anxious mum, that he was likely to be autistic, that we should watch and wait before intervention.

I even had one particularly patronising professional clap in the face of my (sighted) son, and because he then reacted, they proclaimed “See?! No problems with this child’s hearing.”

When I asked for repeated testing I was made to feel like a pest. One day, out of the blue, I got a phonecall from another health board’s cochlear implant centre offering to test his hearing again. When, after a long day of hearing, speech and language testing, they gave his diagnosis I cried huge tears of relief, knowing that I could finally start to support him in the way he needed.

I now know that failures in testing of our local paediatric audiology were at fault for his misdiagnosis, and for the misdiagnosis of many children, because a British Academy of Audiology audit found that to be the case, in a report which was initially published in December 2021.

My knowledge of deafness prior to this was almost nothing. I had done a local “intro to BSL” course run by a deaf mum at a local primary school so I knew that I needed more BSL as soon as possible as our son had no speech and needed language access. I felt worried about his future, guilt over his language- deprived early years and relief that I finally knew what was going on with my wee boy.

The effects of language deprivation were clear in my son’s frustrations- huge outbursts and meltdowns at changes to routine, for example. Giving him basic language access was immediately helpful. This was stressful for me as a parent because I didn’t know the language and struggled to find where to even start.

Sign language courses are expensive and I didn’t know how I’d manage to get to a class with a child in school and a 3 year old in tow. The NDCS ran a family sign language course which our family were signed up for, but timings meant a three month wait and I was panicked knowing that his brain development window for language acquisition was closing.

Thankfully my son has a brilliant Teacher of the Deaf who came for regular sessions at home and worked closely with us. She put us in touch with someone organising a meeting of families affected by the audiology scandal. This meeting was overwhelming, with other families who had gone through the same and professionals who cared.

It was my first experience speaking to a Deaf person with an interpreter and looking back I know I got it all wrong. When she explained that she is a BSL tutor I asked if she could teach us, and she turned out to be not just an amazing tutor but also a mentor and support.

The group became FLAAG (Families failed by Lothian Audiology Action Group) and we continue to campaign for better support for our children. We had a round table discussion at the Scottish Parliament which led to a debate in the Scottish Parliament.

The group offered peer support and a place to share information as we all muddled through this unknown pathway of supporting our deaf children. It also offered the insights from professionals who are either deaf adults or working in the field which is so helpful when deafness is new to you, like it is for my family!

We wanted our children to have peer support in the way we were finding FLAAG to be, and together we developed a weekly meet up for families of deaf children locally. Our BSL tutor teaches and supports our BSL learning, Teachers of the Deaf come along, as well as an advisor from the NDCS, and parents and grandparents can have a cuppa while the children play.

Lothian Children’s Deaf Club has become such a lovely local network and a real support system in what has been an incredibly difficult time.

I’ve continued to learn BSL and almost completed level 2 through Deaf Action who are an Edinburgh-based charity that run courses from beginner level. My son has a Communication Support Worker, as well as a Teacher of the Deaf, in nursery.

After a painstaking decision, my son had cochlear implant surgery earlier this year and is now using a mixture of BSL and English. Cochlear implants aren’t a fix (because he doesn’t need fixing!) but a tool and we aim to ensure that he can use them when he wants, but always have language access regardless – so we want to be a bilingual/bimodal family.

If I could go back in time (hindsight is a wonderful thing!) I’d learn BSL earlier. It has been the most impactful part of our journey in deafness. I wish that all families with newly diagnosed children all could meet a Deaf adult who can offer advice and support!

There’s a popular saying “it takes a village” that is talking about raising children and from my perspective as a hearing mum, I think it’s especially important when raising a deaf child that this village includes deaf adults and other families of deaf children.

Kirsten is a thirty-something year old living in Midlothian, Scotland with her husband and two children. She has a degree in Psychology and is interested in the field of mental health, dogs (especially Collies), and people watching while in coffee shops.