Sara Gilpin: Our Deaf princess

Let me share a little of my story: I grew up in a hearing world, my family, all my friends and most people I had ever met, were hearing.

I worked as a children’s nurse, but even then, the deafness I had encountered to this point was either in older people (during my nurse training) or in children with other multiple disabilities, of which deafness was not a focus for their care.

On 28th February 2014, that was to change, I gave birth to our fourth child, a little girl after having three boys before. We always wanted four children and this was now our family completed: the pregnancy had been painful and exhausting, the labour very long and tough, but we were overjoyed to meet our Little Princess, who was born in “the caul” (inside her amniotic sac, like being born in a bubble), which was our first experience of how unique she was going to be.

As she was my fourth child and was born mid-morning, I was allowed to go home with her the same day, meaning that she didn’t get her ears tested at birth as would usually happen.

We were called to the health centre when she was 10 days old for her newborn hearing test – she failed. We didn’t bat an eyelid, we just assumed she would pass the retest in a few weeks.

But, she didn’t. Another fail – “don’t worry, it’s probably fluid and all will be fine, just give it another few weeks and we will test again” (said the audiologist).

When Princess was six weeks old, she failed more tests, including the ABR (auditory brainstem response) and bone conduction testing – she was Deaf, but they didn’t use that word, they said she “did not demonstrate any responses to testing” and they would refer her to ENT (ear, nose, throat).

Thankfully, I am pretty decent at using the internet and managed to find NDCS (National Deaf Children’s Society) website along with their helpline and their contacts for local support groups.

The rest has become history, our lives changed forever and definitely for the better!

We joined the Deaf community, who welcomed us with open arms. We have made so many new friends and learnt so many new skills, we will be forever thankful that our lives took this unexpected turn.

We have made many choices along the way, the first was our desperate desire to learn sign language straight away – I didn’t want to be holding a baby in my arms who couldn’t hear my voice and I had no method of communicating with her.

Other people said, it’s ok, she will see your face and feel your touch and know she is loved, which was of course very true – but why on earth would I not want to communicate fully with my daughter like I had done with all of my sons?

So, I set about finding an internet course to learn BSL – unfortunately there aren’t a lot of Northern Ireland signs out there and I ended up taking a course in English BSL, which was really useful and got me started, but I also had to relearn all my numbers and colours when I later started learning at the local college.

So far, I have managed to achieve my Levels 1 & 2, my husband has his Level 1, our whole family has been learning “family” signs with Deaf tutors along with my parents learning Level 1 via a local charity.

We have been extraordinarily lucky that we have managed to receive all of this by charitable or local government funding, which has taken a lot of pressure away, unlike many families who have had to fund learning sign themselves.

Another decision we made, was to get Cochlear Implants. Our little princess had surgery and activation just before her first birthday and loves her “magic ears” but also loves to be Deaf and we promote that choice daily, letting her know that she can chose when to wear her “ears” or when to take them off.

We chose the implants mainly for educational purposes, we didn’t want to send her to a school a long distance away from the age of 4, we wanted her to have choices for her education like her brothers had.

The implants work very well for her, she is able to hear a lot and produces very clear speech (most of the time), they also mean that she attends mainstream school and is able to communicate with all of the students and teachers who do not use signing.

However, we are totally open to the idea that implants are her choice and should she decide not to wear them or to use BSL as her primary communication, that we would change her method of education to suit that better.

We have insisted on getting an assistant in school to help with her hearing technology and provide repetition, teaching of new vocabulary and give individual attention. We have stipulated that her assistant must be trained in BSL and use it whenever Princess needs it, which was a fight as the Education Authority still believe that oral education should be our only priority.

Our Princess (sign name for our daughter as she was the only girl after three brothers!), is clearly very intelligent, she has a fast brain, but I have also noticed that she has a Deaf brain – it works in a different way to mine: she is so very visual, she processes things differently.

I have had to learn how to explain things so that they make sense to her – I thought I knew how to parent, but she has made me search for new methods and develop new skills, which have been so beneficial in so many other aspects of my life too. I am determined that she will not experience any barriers to her education because of lack of Deaf awareness, communication needs or my limitations.

Although Princess very rarely uses sign, we find that it seems to be her natural first language, she prefers visual communication from other people, although she herself loves to talk.

Signing has been essential when explaining new words, instructions or concepts to allow her to understand them. We are also very keen to never stop learning sign or using it following conversations with several Deaf young people & adults who told us about their experiences of growing up Deaf, especially in environments where their parents, siblings, friends and professionals did not use or promote sign language.

That has made us determined that princess shall never experience a world that prohibits her signing or refuses to acknowledge that as a Deaf person, it is her right to sign (or not) and to know about her Deaf culture and community.

Due to the strong belief we have in the importance of BSL for all Deaf children, I have also organised a local course for Level 1, which is currently running for some other parents of Deaf children, other family members, a speech & language therapist, some classroom assistants and a swimming instructor.

I have managed to secure Big Lottery funding for the next round of classes which so far include Level 1, Level 2 and Level 3.

Hopefully we can work together with others to ensure that this becomes a permanent funding commitment from the government for all Deaf families, but in the meantime, I will continue to pursue all means of fundraising and grant applications to make sure that people who need to learn sign language in my local area, will not have to pay for it.

I am so thankful that the Deaf community have welcomed us with open arms, always willing to befriend us, help us learn BSL, support our choices and teach us all about Deaf culture.

We are so lucky to be in a position now to be part of both the Deaf and Hearing worlds and are continually promoting Deaf Awareness, inequality issues and sign language.

Sara Gilpin is a hearing mother of a Deaf daughter aged 5 years, she is involved in her local support group Sound Friends Deaf Children’s Society and also writes a blog about her experiences on FaceBook – Deaf Princess and Twitter @deafprincessNI