So far with this blog, I’ve strived to be different in my approach to writing about my experiences. I don’t want Walking The Divide to be just another deaf blog amongst the masses. From the very beginning, I had a few ideas in mind for the site, to give it something special. This blog post marks the beginning of one such idea.
As you may have noticed, I’ve now included a new section for the site titled Interviews which will now appear at the top of the website along with my other two current categories, Experiences and Blog. This category is designed to feature interviews with people in my life as well as prominent people in matters concerning the deaf as I develop the contacts necessary to do so. I hope it offers an insight into my life and perhaps other CI users’ lives too.
To debut this new section of the site, I interviewed the person who has experienced the joys and pitfalls of deaf life along with me, as well as having to face the cochlear implant decision when I was little. My Mum.
Julie Fox is a retired finance manager who worked with Durham County Council for over 20 years and has put up with me for the last 22 years! Julie is also registered blind, having lost the sight in her right eye and diminished sight in her left eye. She contributes to a local support group for the blind, Blind Life in Durham.
So without further ado…
How did you find out that I was deaf?
When you were born, obviously we didn’t have the inclination [that you were deaf]. As you grew older, I would say when you got to about three or four months old, we couldn’t believe that we had such a really good baby. You would sleep through a lot of loud noises. You actually slept next to the stereo in the living room in your pram.
We started to realise that maybe it was too good to be true, so we started to test you out by making loud noises behind you and hoping you would turn to react. You didn’t. We did this for quite a while but being young parents and not having the internet to look at or talking to anyone we didn’t realise the seriousness of it.
We though maybe your hearing didn’t develop until a bit older so we waited until we took you to your hearing test at seven months old. We knew the outcome really but we were just waiting for it to be confirmed.
What was the hearing test like?
It was similar to what we did already at home, they had speakers on either side of you and they played noises through them and just waited for the reaction. You didn’t react to the noises, you just sat there and kind of in your own little world.
They quite quickly diagnosed you as having a hearing problem. At that point we didn’t know quite how serious it was until we went to Sunderland General Hospital and the audiologist confirmed you were profoundly deaf. You had a profound bilateral hearing loss.
What were your feelings at the time?
You feel pretty helpless, gutted, shellshocked. It’s your baby and in the ideal world you want your baby to be perfect. You want to them to have the perfect life and for them to do everything they want to do, so I suppose not knowing anybody who was deaf and not understanding the implications of a deaf child growing up, my dreams were shattered in a way.
You have idealistic dreams for your child and it takes a while to get your head around the implications. You think of school, jobs, relationships and friends, and they’re just the things you can think of and there’s another hundred things that come into your head when you’re alone.
It was a million and one unanswered questions. You realise you’ve got a long road ahead and it’s going to be a struggle. I just wanted to know what we could do to help. I’m a glass half-full person and it was a coping mechanism. It was “right, my son’s deaf, I want to know everything about it and what I can do to make his life better”.
How did you hear of the cochlear implant?
After you were diagnosed as being deaf, you were visited by a lot of people. You were going to hospital, being seen by social workers, speech therapists. A lot of people initially bombarded me, I got lots of leaflets and advice.
And there was a deaf group that we got in touch with and we took you along to meet other deaf children, we met parents of deaf children. It was after a while, we were told that something very new was the cochlear implant so we asked about it.
We got information, we looked it up, we talked to a family who were going through the process at the time. We then asked to be referred to find out about it and whether it would benefit you or not. We took you to Middlesbrough to get you assessed to see if you could be implanted.
We did take you down to London when you were two and they claimed that you had sufficient hearing, just a tiny little bit and wouldn’t need implanting but we later found out that it was bad advice and it turned out that the words you were saying [at the test in London] were a result of lip-reading. You didn’t say very much, and mainly signed.
Why did you decide to go with the operation?
The decision was really difficult, what you are asked to do at the time is put your child through a process which is massive and that’s over and above the initial operation which can last anywhere up to four hours and surgery has its risks. You were under anaesthetic, they take out your cochlea so they damage any chances you have of hearing. We had all these should we, shouldn’t we decisions, what were the risks of the operation. You had a lot of years of rehabilitation and speech therapy.
It’s a massive thing to get your head around. So we talked it over with the family, me and your Dad talked it over quite a lot. We’d come to the decision at the end of the day that we couldn’t not do it for our own fears. We had to give you the best chance in life and because you’d been born into a hearing family we wanted to give your the best chance of becoming a hearing child.
For us that was the best way forward. We couldn’t have lived with ourselves if we got to the point where you asked why didn’t you weren’t implanted and why we left you in the deaf world when you were born into a hearing family.
What was your conception of the deaf world at the time?
Limited. There were small numbers of people, lovely people, I’ve had no problems with anybody in the deaf world. It was just I realised deaf people were few and far between and that you would be brought up in a limited environment which wouldn’t give you the chances that you would get if you were implanted. That would then allow you to hear and speak, both me and your Dad were ambitious people and wanted the best for you and if you could participate in both worlds, that would be amazing.
As I said before, we got to know some deaf people before, a group that we met up and it was a support group who used to meet up for social events, it had about 20-30 families from all over the region [the north-east of England] and it was all different age groups. There wasn’t that many people in the immediate area, there was only one little boy your age who you would’ve got to know and a girl who lived in Durham.
We still took you to these social events after the operation quite a bit but they were all signing and it was the same with your schooling at the time. There were very few children around that actually spoke so for the implant to work fully, we needed you to be mixing with more hearing children.
We stopped going to the deaf group and to be honest it was dwindling, and eventually it disbanded. We started to take you then to cochlear implant groups. So unfortunately the deaf people who signed got left behind and you were speaking which became your predominant language.
What was it like in the early days after I was implanted?
Initially, you waited a month before being switched on and that month was quite scary. You’re hoping and praying that when they switch you on, you’d hear something. Obviously, they had to leave that month for the scarring to settle before they could switch you on.
I can remember taking you in and they started playing the sounds over the speakers, it was obvious by your face that you were hearing things. After everything we’ve been through, it was a dream. Everybody who hears takes it for granted but when your child doesn’t have that sense, it’s the best feeling in the world that you could hear. We knew we had a long, long road ahead and we didn’t know how you would cope after that, but just the fact that the operation worked was a relief. We then made it our mission to help you hear everything going.
Once you started to hear, you were implanted in April [1995] and by September, you were saying words and starting to talk. You were recognising things and listening to things. I wish I’d documented your progress more but when they [audiologists from the cochlear implant team] came out, you were always way above what you should’ve been. You’d passed the three year mark test after two years. You quickly learnt to talk, to read and do everything.
Truthfully, what did you envisage life for me in those early days?
My wild dreams were for you to do what you’re doing now. My realistic dreams were for you to be happy, that was it basically. I just wanted you to be happy. I hoped that you would get through secondary school with either a career or an apprenticeship, a few GCSEs maybe. What you’ve actually done and achieved, sometimes I forget you’re deaf because your achievements are amazing for a hearing person let alone a deaf person.
What made you move me into mainstream schooling?
We did it for one main reason, your academic performance was excellent but what you were lacking in was friends at home. You had friends at school and we tried our best to keep you in touch but the communication was difficult and they lived a long way away. We realised at that age that making friends when you’re different is a struggle.
When you went abroad with us and you played in the pool, your implant had to come off. So when you were mixing with kids and talking to each other, you couldn’t participate in any of that. Boys and girls who approached you got fed up and backed off, and it used to break my heart. You were a loner because of your deafness and your implant. So we hoped if we brought you back home where we lived and put you in a local primary school, we hoped that you would make friends.
Do you think that decision has been beneficial for me?
In most ways, yes. I think you benefitted from going to a hearing school. I think you have been given an advantage from not going to schools for the deaf all of your life. I think it’s given you a taste of the real world and helped you appreciate both sides of the line. I wouldn’t have changed anything. I still stand by that decision. St. Johns [my secondary school and sixth form] was amazing and the help you got there was fabulous.
Reflecting back on the last seventeen years, what are your feelings now about that decision?
I sometimes wish you’d been implanted earlier, we got a lot of conflicting advice when you were two or three. We implanted you when you were five. I wish we did but I don’t think it would have helped you much anyway. I don’t think you could’ve achieved anymore than you have.
I don’t think there’s anything I would’ve changed to be honest. Everything we’ve done was for the best , we discussed it, we went through all the possibilities and I think everything’s paid off. It’s made you who you are today and I don’t think that would be the case if you stayed in the deaf world.
*This article originally appeared in Walk The Divide.*
