Getting LOUD – A father’s story
Thank you so much to Colin for allowing us to share his story. Details on how to donate to Rentwest’s LOUD SHIRT DAY campaign are at the bottom of this post.
Most parents don’t have to be told that both your children were born deaf. Those frightening words came to me when my twin boy and girl were almost 2 1/2 years old. What next you think? How will they cope, where did we go wrong? All the thoughts you shouldn’t be thinking but do, such as how will they be of accepted, school, relationships, marriage. It all goes through your mind. So many what ifs and maybes?
That was back in the UK in 1998 when Archie and Katie were diagnosed profoundly and severely deaf due to congenital deafness. So from birth they were deaf, we didn’t know, how do you tell? Back then tests were not performed as they are nowadays. Archie and Katie were born 5 weeks premature at 4lb 14oz and 2lb 9oz’s and all was fine at birth other than a little breathing trouble with Archie. Katie arrived screaming and hasn’t really stopped since. Along the way, their late development was put down to being twins, they develop later, they have twin speak, everything will be fine, and we were told. As time went on, concerns were arising that something just wasn’t right. Doors would slam, dogs would bark, nothing would seem to frighten them or shock either of them. They had tests and they always coincided when one of them had a cold or wasn’t well. For 6 months the 160km round trip was made was made over and over to try and find out the answers, were they? Weren’t they? Some times Archie would pass, Katie would fail, next time Archie would fail in the opposite ear, Katie would pass. No conclusive answer for 6 months, until finally they were sedated and an electronic test was performed. Finally we knew the level of deafness. Thinking back now, how many times as a parent do you close doors quietly not to wake them, tiptoeing into their room to make sure they were asleep. All that wasted time and they couldn’t even hear us 🙂 Funny when you think about it now, but hey, I can make the deaf jokes.
We were then thrown into a great program where they were both fitted with hearing aids and the weekly support and “learning to listen and talk sessions began. From there, for the next 3 years everyday life was full on, in a routine of helping our kids learn new sounds and how to listen. Archie was found to be less responsive to hearing aids so was put forward for a cochlear implant. A huge decision to be made because if the implant didn’t work, that ear cant then go back to using a hearing aid. We made the decision and Archie went through all the tests and scans to see if he would be accepted. Archie was accepted and became the first child to be implanted at the Freeman Hospital in Newcastle, UK in the year 2000 at the age of 5. From then on he grew leaps and bounds in his hearing, speech and confidence. Excelling in soccer and anything sporty and continues to do so, to this day. Katie being slightly better at hearing and her exceptional use of lip reading managed with hearing aids until the age of 10, when she too was implanted. Katie too gave amazing immediate results and progressed well.
On arriving in Perth from the UK in 2010, Telethon Speech and Hearing were contacted and we started to develop that vital relationship with the great team that they have. Support and regular audiologist appointments followed, with re-tuning sessions always striving to gain that little bit more clarity and volume needed, to be able to follow everyday speech patterns.
We always dreaded the day when the implant would breakdown. It happened in 2011, Katie’s implant broke down and all hearing was lost. The unthinkable had happened. Katie was going great at school and enjoying her sports. Katie was already scheduled to have her left ear implanted and now a decision had to be made to bring forward that operation and perform both implants together, with the added complexity of removing the faulty one. After almost 8 hours in surgery the bilateral implants were implanted with great success at the St John of God Hospital in Subiaco. As Katie was the only teenager to be fitted with an Advanced Bionics implant in Western Australia and the only bilateral implanted person for Advanced Bionics in Australia, she had all the tech guys in the theatre with her, one came from Sydney, one from Singapore and the other from Pennsylvania, USA just to ensure all went well. Backed by the Telethon Audiologist too, the room was full. All the staff and surgeons were amazing. If not for the support and help from Telethon Speech and Hearing, this would not have been possible.
Now a few years on, Archie and Katie will be 19 years old on the 31st October of this year. Archie has an apprenticeship as a grounds man back in the UK and Katie is attending Notre Dame University here in Perth and striving to be a PE teacher. The most difficult times of their past are hopefully behind them now. They struggled through the learning to listen, learning to talk, socialising with others their own age, the teasing and bullying at school for being different. In the end they have come out the other side all grown up and now young adults that I, as a father, can say I’m proud of their achievements. To achieve this though, requires constant support from the family in all aspects of daily life. But the family is also taught new ways of how to deal with deafness and how to overcome the obstacles and frustrations of raising children with deafness. For the latter part of that journey Telethon Speech and Hearing were there to help our family.
The support and assistance from Telethon Speech and Hearing to our family can only be appreciated to the highest level. Please help now, to give a little something back by supporting this great cause. I will be proudly wearing my loudest shirt on October 17th with the iCheckit Team. Hopefully you will too. Thankyou for taking the time to read a snippet of my story.
All donations towards Rentwest’s LOUD SHIRT DAY are so very welcome. Help us make a difference in the lives of kids with hearing impairments. Donate here.