Jennifer’s Story

Then – 10 years ago when Jennifer shared her story

Hi everyone!

I have been asked to write a mini “autobiography” for Chattering, so here goes…!

Mmmm…where do I start…? I feel like I am about to embark on a long detailed description ensuring that key “vital signs” are being addressed, so apologies in advance for the witty comments.

I originate from Rochdale, Greater Manchester, and was born in the year of 1988, when Kylie Minogue was taking the world by storm with her single ‘I should be so lucky.’  I was the first child to be born in the family, (I have a brother who is fifteen and is hearing) so as you can imagine, I was reasonably spoilt by my parents and relatives!  I was a very animated child and would happily get lost in my own little fantasy world, playing with my Barbie dolls, trying on my mum’s high heeled shoes (Posh Spice in the making!), exploring in the garden and pretending to cook meals on my chef stove whilst babbling away to myself!  Looking back, the signs were there, but it was just my nature to be inquisitive and to do things independently.  It wasn’t until I was two and a half years old, when my family began to query why I was not developing any language.  Of course, I had the usual baby talk, but it began to transpire that I was not formulating words.  It was my Grandma that brought it to attention, as she was a nursery teacher and thus started to compare my language to other children in the nursery class.  

After having a number of hearing tests and listening exercises at the hospital, (which I can remember all too clearly, having to put little wooden figurines into carved out holes in a wood block!), I was diagnosed of being severely deaf.  This came as a huge shock to my parents as I was the first deaf person in the family.  However, my parents wanted me to have a normal upbringing and for me to interact with the hearing world.  

I was three years old when I received my first hearing aids and I took to them immediately, for the first time I was exposed to NOISE!  It just so happened that on the day of receiving my hearing aids, that evening I attended a school disco that the nursery was affiliated with.  Mum remembers that I just stood on the dance floor in complete awe – talk about amplification!!!  Being the curious person I am, I wanted to listen and to explore sounds.  A whole new world has opened up to me! My Mum and Grandma would work together, with Grandma utilising her teaching knowledge to come up with ingenious tools to help me to develop my listening and speaking skills.  

One year, when I was four, we went to the Isle of Lewis, Scotland, for a holiday. It was here where I fell in love with a cat puppet that I saw in a shop!  I pestered my parents to buy it for me and subsequently called it Lucy.  I believed in Lucy, you see, my Grandad had this magic touch, and when he put his hand into the puppet and started talking to me, I genuinely believed that Lucy came alive!  We would talk for hours (poor Grandad!) – with me talking to Lucy, but really just talking to my Grandad’s hand!  Looking back with fond memories, these experiences put the stepping stones in place for natural auralism.

I had the excellent support of Mrs Stone, a Teacher of the Deaf who had faith in me from day one, she could see that I was keen to learn and she strongly recommended that I participated in mainstream education.  Mrs Stone was a big believer in providing opportunities for speaking and listening.  I was encouraged to create a scrapbook about my experiences, travels and hobbies which provided lots of opportunities for me to develop my communication skills.  From an early age, I never wanted to be singled out as “different”, in fact, it never occurred to me that I was deaf, I wanted to “blend in” and if anything, I was bit of a headstrong young lady wanting my own way!

I am very fortunate to have had an enriching childhood, filled with travelling opportunities to many countries as well as living in Paris for eighteen months when I was nine years old.  My father’s job involved the family being relocated many times, and here is an interesting fact – I attended six primary schools, including Mary Mount International School in Paris that provided an American curriculum.  I have to admit that at times it was hard, just when I was beginning to settle at a new school and getting to grips with its structure, the call came along, that once again, we were on the move.  In some ways, this lifestyle made me very independent, as I had to learn to stand up on my own two feet, and to be able to make new friends as well as catching the school bus from the suburbs of Paris (La Celle St Cloud) to Neuilly-sur-Seine!  Being on the school bus was the highlight of the day, particularly on the way home when everyone was so happy that school was over!  There was always banter taking place on the bus, and I would sit at the back so that I could mingle with the teenagers, who I thought were cool!  We would eat sweets away from the eyes of the bus driver as eating on the bus was strictly forbidden!  I always felt so naughty!  

Once a week, I would stay behind at school and attend Girl Scouts (the American equivalence of Brownies) and thus would get the bus home later on in the evening.  On one occasion, after Girl Scouts had finished, there was a different bus driver, and he missed my bus stop and continued driving on, this was back in the days when children didn’t have the luxury of mobile phones so I was not able to communicate with my Mum!  The bus driver was French and spoke minimal English, therefore, I had to put my French speaking skills to the test and tell him (whilst he was still driving!) that he has missed my stop and that my Mum would be waiting for me!  The driver had to continue dropping off the remaining children on the bus route before being able to return back to my bus stop.  Let’s just say that it was dark when I finally got off the bus and was reunited with my distraught Mum!  It was certainly an adventure for a nine year old!

When we came back to the UK, we moved to Oxfordshire and I had two terms at the local primary school before starting at the local secondary school.  I have been living in Oxfordshire for thirteen years now (the longest time in one place!), so have settled into somewhat a normal routine.  When I was in year 11, thankfully a few months before my GCSE exams were due to start, I had a skiing accident where I collided into another skier travelling at speed.  Ironically, I had been wearing a skiing helmet, but on the last day of the skiing holiday, I decided not to wear it as I didn’t think it was particularly stylish and always made my hair a mess!  Unfortunately, it just so happened that I had to have the accident on the day when I opted not to wear my helmet – an important lesson has been learnt that safety comes before vanity!  When I hit the other skier, the force of impact propelled me forward at such speed that my skis’ unclipped and as I result I did a somersault across the snow – I actually got snow in my mouth!  

When my parents and other skiers came to my rescue, in a disorientated state, I was complaining that my head hurt.  Thankfully, I didn’t have any immediate injuries other than severe bruising on the right side of my body, however, I noticed that my hearing had dropped and it felt like cotton wool has been stuffed into my ear blocking out sound.  Over the forthcoming weeks, I had vertigo and was constantly feeling dizzy and experiencing nausea.  My hearing still hasn’t improved and subsequently I lost my confidence, as one day I answered the telephone (the first time since the accident) and couldn’t distinguish a single word that the caller was saying to me.  I thought it was a female caller and I was so embarrassed that I couldn’t hear that I hung up the phone.  It actually turned out that it was my Father calling to say that he was on his way home from work but it really hit home the severity of my hearing loss and that I didn’t recognise my own Father’s voice, which upset me.  I am now profoundly deaf and I can only communicate to close family members on the phone with the loudspeaker on.

After endless trips to the Doctors, it was agreed that I was to be referred for a CT scan.  It was then diagnosed from the scan that I had Large Vestibular Aqueduct Syndrome (LVAS), which means that the fluid filled tube within the aqueduct is enlarged and subsequently there is potential for the fluid contained in the tube to flow back into the hearing structures causing problems.  In other words, any impact to the head will cause irreversible hearing loss.  However, this was not the end of the story; the Consultant informed me that considering I had LVAS, I was likely to have another syndrome, known as Pendred Syndrome, which is a genetic condition.  After DNA testing, it was confirmed positive that I had this medical condition.  To my Doctor’s knowledge, at the time of diagnosis, there was only me and one other patient registered at the hospital with Pendred Syndrome thus making it a rather rare condition that only accounts for about five to ten percent of hereditary hearing loss.  

All in all, the skiing accident brought it to light, the reason why I am deaf, which had been a mystery up until that point.  I now know that I have to be extremely cautious and to avoid any contact sports that may lead to head injury and to wear head protection when engaged in bike riding and skiing.  However, I am a bit of a daredevil and like fast rides at theme parks!

Interestingly, I have never been a big fan of swimming.  My mum enrolled me on swimming lessons just before I started primary school as she thought it would be important that for my own safety I would learn to swim.  Unfortunately, it was a waste of money as I would scream the place down!!  It later transpired that I developed a phobia of water because I didn’t like being without my hearing aids and I didn’t feel safe being in water.  This made me and my family realise, that within such a short space of time of getting my hearing aids, of how dependent I had become on my hearing aids and even today, I am not comfortable when I am in a situation where I can’t use my hearing aids.  

Bringing this autobiography to a close, I have recently graduated with an MSc in Spatial Planning at Oxford Brookes University following on from achieving a First Class Honours in City & Regional Planning.  I am looking for a job as a Planner, but in view of the highly competitive market, I am currently doing an Internship with Campaign to Protect Rural England, which heavily monitors planning applications and developments that will impact upon the countryside.  I have no idea at present, where I will end up living and working, but it is a challenge that I am very much looking forward to!

I really do feel like I have got the best of both worlds! I am a Senior Planning Policy Officer at Adur & Worthing Councils and I am responsible for the long term development planning such as housing growth and making sure the necessary infrastructure such as schools, roads and GP surgeries are put in place. There is a lot happening on the climate change front so it is rather an exciting time as we are proactively exploring how as an organisation we can meet our carbon emergency pledge of being carbon neutral by 2030. In early March last year, we hosted a Climate conference with over 300 delegates. I am very proud to say that I project managed a workshop on how the planning system has an important role to play in climate change. It was quite nerve wrecking delivering a presentation and overseeing the workshop so it was a huge relief to see delegates showing enthusiasm and interest! 

Given that we are living in a global pandemic, this has impacted on my work patterns and I am presently working from home. I have found this quite challenging as I do appreciate interaction with my colleagues and having a banter over a cup of tea and cake! It is rather strange conducting team meetings virtually and I have found communication hard at times. Fortunately, I am able to use ‘Google Meets’ for internal meetings with provides live captions but for external meetings, I have to use Zoom which sadly doesn’t have captions. I am currently in discussions with senior management staff and the IT department to address accessibility issues with a guidance note being recently circulated to all staff with recommended tips to support deaf participants during virtual meetings. It is a learning curve for us all as we adapt to the new ways of working. 

Sadly, I have had to hang up my travel boots for the time being but I am very fortunate that I have been on some incredible adventures over the years such as visiting Japan, the Falkland Islands, interrailing around Europe, Australia and New Zealand. I have created lots of lovely memories, experienced amazing cultures as well as developing a wider appreciation for the amazing planet we live on! 

I wonder where my life journey will take me to in ten years time?

If you are interested in finding out more about what I do at Adur & Worthing Councils, then please do take a look at my staff blog: https://www.adur-worthing.gov.uk/our-stories-your-councils/jennifer-ryan/