Born with an undiagnosed genetic condition that affects her ears and facial anatomy, Nova (2 this month) has conductive hearing loss. The best way to describe it is her hearing is like hearing a conversation from 2 rooms over. You may have heard of Treacher Collins Syndrome (TCS) if you read or saw the movie Wonder, Nova has a similar condition as the lead character Auggie Pullman.
Nova has had numerous surgeries with more planned in the future including bone anchored hearing aids which will be performed around the age of 5. Along with very reduced hearing, Nova also has a cleft palette and tiny jaw which affects her speech. The result an entirely verbal family, including Nova by learning New Zealand Sign Language (NZSL) so they can communicate.
Nova’s Mum Acacia is incredibly proud of the progress Nova is making “It took a while for Nova to pick up NZSL but she is just about to turn 2 this month and her sign language has taken off in the last month or two.”
Acacia is ensuring the whole family assist in giving Nova all of the tools she may need in the future – if one day she decides to remove her hearing aids and communicate fully through sign, they want to give her that option. “We just want to give her the chance to make her own decisions.”
NZSL doesn’t stop with parents, the entire extended family is learning NZSL along with Nova’s maternal Grandmother Viv. “Our goal is to support them (Nova and her parents) in whatever way is helpful for them. As a family we want to make sure she has access to everything in our family and to communicate. For Nova the best way for that is sign language.”
NZSL became one of New Zealand’s 3 official languages (the other two are English and Māori) in 2006 which is also when NZSL Week began. NZSL is used daily by more than 20,000 Kiwis with around 4,000 of those people who are Deaf.
Learning NZSL has required a bit of help for Grandparents on both sides through classes organised through First Signs. “My husband and I and Nova’s grandparent on the other side have been to sign language classes.” Says Viv “We sign to other grand kids so Nova can sign with cousins. We are enjoying learning something new and that we can help her.”
Due to Nova’s condition only a few people can help look after her, Viv is one of them. “It’s nice we are starting to communicate like reading a story or songs. I need to look up how to say certain words. Doing ABCs and colours, the rainbow, animals. You just enter a child’s world and for her it’s being able to sign.”
Nova is turning 2 this month so it’s full steam ahead on plans for her birthday party. She also has her own Instagram page and has modelled for New Zealand children’s brands including Jamie Kay. She is also starting to boss around her younger cousin with NZSL ensuring the childhood tradition of I am older, I know better is well and truly continued. Acacia couldn’t be more proud “She is blossoming