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Joining a local group: Kate's story

Photo: Speaking to parents who have experienced similar things to your family can boost your wellbeing.

"When we first discovered Harry had a hearing loss, I was devastated. Harry had a very difficult birth and spent his first week on a ventilator. He wasn’t expected to survive the first 48 hours initially and we were told to prepare for this. Harry then failed his newborn hearing screening and, when audiology said he was deaf, I felt that it was more bad news on top of what had so far been a very difficult start to life. As a family, we didn’t know what to expect or what his future would look like. I still hadn’t recovered from the horror of almost losing a child and I wasn’t sure I was strong enough to deal with this new news being still so fragile.

As I went to a school with a hearing impaired unit, I had a friend who was deaf and he helped me see that it would all be okay. He advised me to do British Sign Language (BSL) Level 1, which opened up a world that my son could be a part of and he was very much welcomed into the Deaf community. In the middle of this rollercoaster journey, my son Toby (now 14) was diagnosed with a permanent hearing loss too after having glue ear.

Our Teacher of the Deaf (ToD) invited me to join the Cornwall Deaf Children’s Society (CDCS) committee, and here I found I could be a part of something useful. Sharing our stories really helped me stay positive and pointed me in the right direction when I had to fight for what my child needed and deserved.

Since then we’ve enjoyed forest school sessions, a trip to the zoo, a beach day, a trip to a theme park, a weekend at an outdoor pursuits centre, a signed session with Santa at the Eden Project and a Neon Christmas Disco. The group started with six people and now we have over 100 members!

All of us on the committee have deaf children and have lived with the struggles they face. The support we have from one another makes the battle that little bit easier to bear. We live in a county where services are scarce and those that do exist are suffering from terrible cuts in funding. Many deaf children in Cornwall don’t meet other deaf children other than through our events. There’s nothing more rewarding than watching a group of deaf children together enjoying themselves and feeling a little less isolated or different. As parents, we support one another too.

Recently one of our parents was chatting with us at an event and describing a problem. We discussed how some of us had been through the same thing and she said that she felt so much better knowing she wasn’t alone. These experiences make a huge difference to a parent; they allow us to talk to people who know where we’re coming from and the advice given can be invaluable.

My journey with Harry’s hearing loss in particular has been a rollercoaster. Born with a moderate hearing loss, we gradually saw his hearing deteriorate to a profound loss. He went from using hearing aids to becoming a cochlear implant user. We’ve grieved along the way; no parent wants to watch their child struggle. Just as we felt we had learnt to deal with what we had, another change would present itself. CDCS has provided the support to help us get back up, brush ourselves off and carry on. It can be easy to focus on the negatives but being proactive with CDCS has helped my mental wellbeing. It can be terrifying to join a new group but CDCS is much more than a group, we’re a family."

Check out our map to find a local group in your area. Whether you want to join a group, become a volunteer or even set up your own group, we’re here to help. Email the team to find out more.