Emma's Blog - Introduction

INTRODUCTION

HI EVERYONE,

MY NAME IS EMMA AND I AM 21 YEARS OLD, AND I AM FROM NEWPORT IN SOUTH WALES WHERE I LIVE WITH MY FAMILY. I HAVE A MULTI-SENSORY IMPAIRMENT WHICH AFFECTS MY HEARING AND VISION, THIS IS DUE TO ME HAVING A GENETIC CONDITION CALLED DONNI BARROW SYNDROME WHICH IS VERY RARE, I’LL EXPLAIN MORE ABOUT THE CONDITION LATER ON IN THE BLOG.

I HAVE LOTS OF HOBBIES AND INTERESTS SUCH AS HISTORY, LISTENING TO AUDIO BOOKS AND NEWSPAPERS, COOKING AND SOCIALISING WITH FRIENDS. MY FAMILY AND FRIENDS ARE VERY IMPORTANT TO ME AS THEY HAVE BEEN MY ROCK OVER THE LAST 20 OR SO YEARS, I MET MOST OF MY FRIENDS AT THE ROYAL NATIONAL COLLEGE FOR THE BLIND IN HEREFORD WHERE I STUDIED FOR 3 YEARS ON THE YOUNGER LEARNER PROGRAMME THAT THEY RUN AND AGAIN FOR 6 MONTHS ON THE SES PROGRAMME (SPECIALIST EMPLOYMENT SCHEME) WHICH IS RUN BY THE DWP, THIS PROGRAMME HELPS ADULTS 18+ TO GET BACK INTO WORK AFTER LOSING THEIR SIGHT LATER ON IN LIFE OR WHO HAVE ALWAYS BEEN VI, BUT NEVER HAD A PROBLEM BEFORE.

THE SUBJECTS THAT I AM GOING TO COVER IN THIS BLOG SERIES

1. EARLY LIFE AND EDUCATION

2. LIFE AFTER RNC

3. DONNI BARROW SYMDROME (DBS)

4. HOW IT HAS AFFECTED MY LIFE

5. MY STRUGGLES WITH HEARING AND VISION IMPAIRMENTS

6. HOW I COPE WITH DBS

I WILL BE ADDING TO THIS BLOG ON A WEEKLY BASIS, BUT PLEASE GET IN TOUCH WITH ME VIA THE VISION LINKS OFFICE. OR VIA FACEBOOK!

I LOOK FORWARD TO HEARING FROM YOU!

Early life and education

i was born on the 22nd of August 1998 at the University Hospital of Wales in Cardiff, when i as born my parents thought everything was fine with me but it wasn’t until i went for my first hearing test at the age of 9 months that the doctors noticed that something was wrong with my hearing and gave me a hearing aid to try and said to come back in a month time, so iwent back when i was 10 months but there was still something wrong with my hearing so they gave me another hearing aid and took the first one away to see if there was any different. after 2 or so months of discovery, the doctors gave me 2 hearing aids to wear at the age of just 1 year old in both of my ears, you can imagine giving a little girl at 1 year old 2 hearing aids to wear, it was going to be hard for my Parents to keep them in my ears when all i wanted to do was just take them out and think that everything was normal for me but it wasn’t, meanwhile when i was going back and for to have hearing tests my parents noticed that my distance vision was getting poor so they took me for an eye test were they discovered that i was very short sighted so i had my first pair of glasses to try so not only now i had 2 hearing aids to wear i also had a pair of glasses to wear as well, life was going to be tough for this young little girl who didn’t understand what was wrong with her.

At the tender age of 3 years old i welcomed my little baby brother into the world, life was going to be even harder for both of my parents having to not only look after a little girl with hearing and vision problems but having to look after a tiny little baby as well. Life was going to get even harder for all of us when my brother was taken ill and he had to spend a while in hospital, this meant that my Mother needed to bring me up on her own as my Dad was in hospital with my Brother, During these time i was undergoing genetic testing to find out what was coursing my hearing and sight loss.

When i was younger my education was not the best but i really enjoyed going to School especially my local church school as i knew some of the children who came to church with me, but when i got to year 3 i was moved to a different school that had a special needs unit attached to it and i didn’t cope there as well as i did when i was in my first school. When it came time for me to go to high school my family had a battle on with the local council as my parents wanted me to go to a mainstream school with a hearing impairment unit attached but the council wanted me to go to a local school that had a special needs unit within it but we didn’t want that but finally the council allowed me to go to the school that my parents wanted me to go to in the first place, i made some new friends and learnt a lot whilst i was in high school but as my eye sight was getting worst, i was starting to really struggle and keep up with the amount of work that i needed to do but i managed it with help from support staff from the unit and an support worker from a local VI service who helps young people in school and with their independence living skills and Mobility, after spending 5 years in high school from 2009 to 2014, myself, teachers and family decided that i needed to attend a specialist college for the Blind where i could get more support with my learning and independence whilst living away from home, so at the end of 2014 we applied for me to study at the Royal National College for the Blind in Hereford.

i needed to go through a lot of different processes to get my place at the college which i so desperately needed after so many years of struggling in high school, so the battle with my local council started all over again fight to get funding and to get my social worker on side to support me and my family with getting a place, as well as my social worker i also had careers Wales and the School involved with the process, it wasn’t easy but in April of 2015 we had a phone call that we have all been waiting for, i had a place for that year funded by the Welsh government as my local council was taking their time to decide whether to fund me or not, the funding that was coming from the council was for my residential provision and the government was providing the educational funding but in the end the government gave up waiting and said we’ll pay all of it and the council can pay us back. In September of 2015 i started studying at RNC which changed my life for the better, i spent 3 years there before my time was up in 2018 which made me sad as i really enjoyed myself and made lots of new friends, after spending 6 months at home without any luck on getting a job i turned to my local Job centre for help and they got me on the SES (specialist employment scheme) and i started back at the college under the scheme in January of 2019, where i made even more friends and got help to find a job, they helped me find a job and now i work at Herefordshire Visionlinks which means a lot to me as i can give back the support that i received whilst at the college and help those who are coming to terms with sight loss.

i hope you enjoy reading my story so far, the next blog will be about my life after RNC.