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Faith's diagnosis story

Published Date: 20 Apr 2023

I still remember the day my daughter was diagnosed deaf. The audiologist could see I needed time to process the news, so she left the room to give myself and my husband some privacy. I looked at my husband and the tears just came. He hugged me in silence and then said that she would be fine as we knew exactly what she would need growing up. You see, my husband and I are also profoundly deaf. Faith is our fourth child and the only child to be born deaf as our three boys are hearing, so it was a complete shock when we discovered she was deaf.

Many people are often surprised at my reaction, but it was a combination of many things. We had spent the pregnancy worrying as our third son was born with significant complex needs and needs 24/7 care. He has a syndrome without a name (SWAN) and is currently going through genetic testing, and we were told that they couldn’t say for sure Faith would be born without disabilities. Also, my husband and I know exactly what it's like being deaf in a hearing world, and to be honest, I didn't want that for Faith. But my husband reminded me that technology had come a long way, awareness was better than when we were children, people were slowly accepting British Sign Language (BSL) as an official language, and that we had more rights, more protection than when we were younger.

Faith's first year flew by in a whirlwind of appointments, and soon we amassed a team around her to ensure she was getting all the support she needed from speech therapists, her Teacher of the Deaf, community paediatrician and several more. I felt completely overwhelmed by it all as all her appointments alongside her brother’s own team of specialists meant we literally spent most of that year traveling from one appointment to the other. Due to my husband's work commitments, I was often on my own, but he completely supported me and constantly would text me to check I was OK.

Once Faith had her cochlear implants at 16 months old, things started to calm a little. We still had so many appointments, but I now became better at saying, “We need a break. Let's rearrange the appointment to a later date.” It's so important when you have more than one child with additional needs to look after yourself and recognise that it's OK to take a step back when needed.

We’re currently navigating the school system, and luckily Faith is in an amazing school who supports her brilliantly. She does also have a selective mutism diagnosis which complicates things at times. There are still issues, but we’re slowly finding ways to resolve them. With my husband and I being deaf, we know exactly what it's like being a deaf child in a hearing mainstream school with no signing support. I hope to educate others on exactly what it's like for deaf children and how to make things better and more inclusive for them.

In an ideal world, I would love BSL to be introduced to all schools in Scotland as part of the curriculum. It would definitely benefit children like Faith to have staff and children able to sign as well as speak as it’s so easy for a deaf child to miss out on many things that are being said while in school. It would help with the frustrations that we see in Faith when she comes home from school exhausted from trying to constantly listen to her peers and staff, frustrated that she didn’t understand something or misunderstood something. It’s a process, but we’ll hopefully get there one day.

Jenni

Jenni and her husband Warren are both profoundly deaf and have cochlear implants. They're parents to Leo, Lucas, Reuben and Faith. Faith (6) is profoundly deaf and wears bilateral cochlear implants. They use a combination of British Sign Language (BSL), Sign Supported English (SSE) and speech at home.