'We sign so Charlotte can understand the world like her brothers... and I want to be able to say I love you to her'
Ever since little Charlotte Gilpin was born profoundly deaf five years ago, her family has worked hard to give her the best life possible. Her mother Sara, from Portadown, tells Leona O'Neill about the amazing effect cochlear implants have had and why she wants everyone to learn sign language
A Co Armagh mum whose daughter is profoundly deaf says she would love everyone to learn sign language. Sara Gilpin's little girl, Charlotte, has lived with deafness since she was born five years ago.
Sara (39), a teacher who lives in Portadown with Charlotte, her nurse husband James and their three other children, Sam (12), Matthew (9) and Oliver (7), says sign language has opened up a whole new world of communication to her daughter and her family.
She admits that when her daughter was diagnosed as profoundly deaf at six weeks old it was a shock, but one the family absorbed very quickly.
"I had a perfectly normal pregnancy and Charlotte was born deaf," she says. "She failed her first test when she was 10 days old. As she was my fourth child, I was allowed home the same day I had her so she didn't get her newborn screening until over a week later.
"We didn't notice anything different and when she failed the test we just thought it was one of those tests babies fail sometimes and pass the next time.
"They did it again and she failed again and they did the detailed test at six weeks old and she didn't have any responses to any of the testing. So she was given her first set of hearing aids at 12 weeks old. They were so tiny.
"It was a big shock for us at the time. Neither my husband nor I has it in our families. It has actually since been discovered that Charlotte's deafness is caused by a genetic issue called 'connexin 26'. It is one of those things that you have to have the gene from both your mum and your dad to have the problem."
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Sara says the family decided that implants to help their little girl hear was the best course of action.
"Charlotte went for surgery to have cochlear implants put in when she was 10 months old," says Sara. "Her deafness is so profound that hearing aids just don't work for it.
"We thought the implants would be a good opportunity to allow her to hear. So they basically put a device inside her head, into her inner ear that has a magnet attached on the inside. So then she wears a little piece on the outside called a processor - it looks like a hearing aid - and it has a magnet attached to it that looks like a disc.
"And with the two magnets attached she can hear. But when you take the outside bit off again, she can't hear.
"There are controversial views on the implants. Some members of the deaf community believe that you shouldn't go for hearing because you were deaf and you were meant to be deaf.
"There are even some very staunch views that say it is child abuse, because you're putting a child through surgery, and you've cut them open when there was no need to do it. They are just deaf, there is nothing wrong with them.
"Charlotte had no hearing at all and we just thought it would be a good opportunity for her to see if she could hear.
"They don't work for everyone, but thankfully they have worked for her.
"She can hear really well with them and speak really well with them, and it has meant that she can go to the same school as her brothers and the same scout group.
"When they were first put in, it wasn't this YouTube standard moment where she reacted when she heard my voice. They put them in and then start the volume off really low so as not to startle them.
"They turn the volume up over weeks and months. But there were some lovely moments we have captured where we are banging pots behind her and she turns around.
"Charlotte still likes being deaf and if she is in a temper tantrum she will take them off and close her eyes so that you can have no communication with her whatsoever. She knows how to work it!"
Sara says that using artificial hearing can be exhausting, which is another reason Charlotte sometimes prefers to be deaf.
"We are teaching her that, yes, she is deaf," she says. "But that she can hear with these magic ears - that's what we call them at home - but that she can take them off at any time and just be herself and get rid of the noise. And that is what she does.
"Sometimes if it gets too noisy or she's tired, she prefers just to be deaf. It can be exhausting for them to listen. It's like an artificial hearing rather than a natural one so they have to work harder to listen than we would. It's amazing technology, but it's important to remember that it's not a cure for deafness.
"It's not like you put these things on and you are fixed. There is a lot of rehab to do and learning to listen."
Another hugely important aspect of life with a deaf family member is learning sign language. Sara says that she always wants to keep the lines of communication fully open.
"We all, as a family, have learned sign language," she says. "Because when Charlotte doesn't have her ears on, she can't hear anything and I didn't like the thought of being able to talk to her brothers and not being able to have exactly the same conversation with her.
"I didn't want her to be different. Especially when she was a baby, I didn't want her to look up and suddenly I wasn't in the room.
"I wanted to be able to tell her that I was away to the shower or that I was going to the shop and that granny was in the kitchen. I also wanted to be able to say 'I love you' to her.
"I wanted her to understand the world the same way her brothers did. The unfortunate thing is that education and health services are still saying that it is fine if you are wearing hearing technology, you don't need sign language.
"But that is not the reality. For instance, when we get up in the morning at 7am and she wouldn't put her ears on until we are going out the door to school - after she's had her shower and breakfast and done her hair, there is an hour and a half that I need to be able to talk to her.
"I have taken a couple of classes and have done my British Sign Language level one with the National Deaf Children's Society and level two through government funding.
"My husband has done his level one and is doing his level two next term. We have also used a lot of charity programmes to learn in the house, where a deaf person would come to your house and teach a group of us sign language.
"We've had the grandparents and Charlotte's classroom assistant at school come to classes. So we have been really pushing for this. It is so important for her to be able to communicate."
Sara says that she feels it is important that schools, health professions - in fact, everyone - learns sign language.
"In an ideal world everyone would know how to sign," she says.
"That would be fantastic. Deaf people are kind of in a lonely world and sign language will open that up to them. We noticed that very early on.
"And we were determined that we were going to sign very early on.
"We believed it is right for our family. I think it's a very personal decision for families.
"Even though she speaks for 99% of her day, sign language is her native language.
"Signing just really captures her mind and helps her to understand what is going on, where people fit and all of those explanations of new things.
"It has opened up a whole new world for our family. But to her communication it is vital."
Sara writes about her experiences on her Facebook page Deaf Princess and hopes that it helps other families to feel less alone.
"I started writing the blog just to reach out and let people know that they aren't on their own," she says. "But also to educate a little bit.
"When Charlotte was diagnosed we knew nothing, we hadn't a clue.
"So I used Deaf Princess to show what I have learned along the way. I would outline things that we had tried as a family and that had worked and encouraged other families to give it a go. I would put up a few sign language tips to make communication easier.
"I would share things that might be useful about deafness and communication.
"I have hopefully accomplished what I had set out to do, which was to raise deaf awareness and also to reach out to members of the deaf community - people who believe that deaf people are deaf people and should always be deaf people.
"I have been very open and said that this is my daughter, she is deaf.
"She has cochlear implants but at any stage in her life she might want to be deaf again. But we are also making sure that she is in the deaf community and having access to sign language and other deaf people.
"We are in a lot of support groups alongside deaf children younger and older than her as well as deaf adults and she sees them signing, she sees them speaking, she sees some of them wearing technology and some don't.
"And she knows she has always got those choices in her future. And that was very important to me."
Sara says that she hopes other people embarking on the same journey as her family know that 'things will be okay'.
"A lot of people go through a grieving process," she says. "With any diagnosis people think that this is my perfect child and then, as they see it, there is a problem. With Charlotte we see it as who she is. She is our deaf princess.
"We had three boys and then our girl and she was called princess before we knew anything about her being deaf.
"I would just say to people: remember that this is your child, this is your baby.
"Don't worry about the rest of it. Get support from other local families who are in the same position. There is nothing like someone sitting down beside you and saying that they know how you feel, that they have been there too.
"I would also say to people to read all the information they can get and make a choice for your own family."
Sara has been doing fundraising to support people to learn sign language.
She was recently awarded a Big Lottery Grant of £10,000 to fund sign language classes. Sara also thinks that a Sign Language Act would boost the availability of interpreters.
"There's such a huge deficit in interpreters. If the act was passed, there would be more and people would have access to places to train," she says.
"There should be a guaranteed pot of government funding so everyone can have access to sign language.
"I think a Sign Language Act is really important because so many deaf children are born to hearing parents and you need to be able to communicate with your own child. It's a basic human right."
- You can keep up to date with Charlotte's journey on her Deaf Princess Facebook page. For more information on support available to deaf people and their families visit www.ndcs.org.uk and click through to the Northern Ireland pages