Serena’s Story – “I have been given a gift”

“My twin daughters, Serena and Kiya, were born at 27 weeks gestation and Serena was born breech. They each weighed only 910 grams at birth. While they were both tiny, Kiya was healthy while Serena had complications from the beginning. She was on a ventilator and I was told she probably wouldn’t survive.

I was only 23 and a single mum when I found out I was having twins. But when they were born, I thought, ‘I have been given a gift’. Serena needed three months in intensive care and another six weeks in the nursery. While Kiya was doing okay, I wanted her by Serena’s side all the time. I thought that’s important for twins. When Serena was one year old, we found out she had a hearing loss. A week later, she was diagnosed with cerebral palsy. Serena had always been very floppy and couldn’t hold herself up. When she was almost two, she had a hearing aid fitted but still didn’t respond to noises. We realised Serena was profoundly deaf in both ears. When she was three, Serena was fitted with a cochlear implant. She doesn’t like it and still often refuses to wear it but she knows it helps her.

Serena is great at Auslan. Her speech has come a long way and now, at the age of seven, she can have conversations with us. We went through a lot of speech therapy and I asked her to repeat the words over and over again from the books I read to her. Now she speaks and signs at the same time.

My Deaf Children Australia case manager Emma has helped us so much. Whenever we need support, she is there for us. She has put together behavioural plans for the girls. They are both still small in size so Emma helps me to encourage them to eat more. She even put together a recipe book with Serena and Kiya which is filled with their favourite meals. She helps me to find out about other services as well.

It was great that Emma organised for us to receive one of DCA’s a CommuniCate kits. Serena and Kiya enjoy playing with it and they show everyone who comes. We use the cards as a memory game. Kiya used to sign a lot with Serena when they went to the deaf pre-school together. Since we moved to Melbourne and they started at different schools, Kiya hasn’t been so interested in signing. But it is Serena’ first language so I think it’s really important for all of us to use Auslan with her. Serena will sign slowly to Kiya and Kiya will speak to Serena in reply but now Kiya is practicing more signs.

My Mum, Dad and sister are wonderful in wanting to learn Auslan and the kit has really helped. They have been coming to our house every Sunday for us to practice signing. I have also told our wider family that I want them to make an effort to communicate with Serena directly rather than relying on me to interpret all the time. Serena and Kiya’s five year old cousin is brilliant in learning some signs and Serena will lip read as well so they can communicate.

I have enrolled for an Auslan course next year and hope to be able to work as an interpreter or in a school supporting deaf children in the future.

At the shops, I can understand what Serena is asking for but shopkeepers won’t have a clue. Sometimes, they say, ‘What’s wrong with you?’ I tell them there is nothing wrong with her. She still has a heart and she is a good kid. Of course there are days when Serena is frustrated but all in all, she is a very smiley and loving child. If someone is crying, she will hug them. She hates to see anyone upset.

Kiya is the tomboy and quite different to Serena in some respects but they are still close. I tell my girls, ‘Everyone is different in some way. Just be yourself’. Kiya will hold Serena’s hand when we are walking and when Serena feels too tired to walk any more, Kiya will sometimes push her in the wheelchair. But it’s fantastic that Serena is now able to ride a bike without training wheels. That is a huge achievement for her.

Serena was receiving physiotherapy after we moved to Melbourne but after a year, the funding ran out and we were on a waiting list. I kept encouraging her to learn how to walk even though she would say, ‘I can’t walk’. My goal was to encourage Serena to walk to the front fence. When she would fall, I would help her up and when she was too tired to walk any more, I would carry her. I told her, ‘You can’t give up Serena and you can’t say you can’t do it. You can’t let life slip away from you.’ Now she is getting around like a rocket.”

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