Where does our story begin..... Alice (now 16) was born profoundly deaf. In Oct 17 at a routine eye test (Alice has always worn glasses) they picked up an issue all we were told is she had black spots in her retina it was nothing to worry about!! That she would be refered to the hospital.
On returning home I did what most of us do and used good old Google my heart sank I had a panic attack and didnt know who to turn to.
Fast forward to February after local appointments we had an appointment at Gosh where we were told Alice had rp and combined with her hearing impairment she has Usher1 syndrome (I knew as I had already been doing alot of research) just needed the formal diagnosis. Alice was registered sight impaired on that day and many appointments were booked. It was then on speaking with Paula the eclo we first heard of Molly Watt. On the train home both me and Alice watched videos and read articals by Molly it's then that we reached out. From day one Molly and Jane have been amazing.
Jane (Molly's Mum) has been a huge help to me as a mother who is that bit further ahead of Alice and I on the usher journey. The information she has given me has been invaluable to getting where I am today.
The Usher Road for us has been a very rocky one. School was awful they couldn't or wouldn't except Alice had issues because she used he residual vision so well despite 6 months after diagnoses being registered severely sight impaired. They even refused to allow her to use her cane in school!!! Jane guided me through many a minefield and eventually Alice got the support needed. As a result of her guidance pointing me in the right direction and letting me chew her ear off as well a many sleepless nights on my part fighting the local authority trubunal Alice now has a place at The Royal National College for the Blind.
Alice has a special bond with Molly and really looks up to her she is an amazing role model and advocate for Usher. We both follow one of the first things Molly said to us when we met her..... Focus on the can dos and not the can't dos. As a result Alice did complete her gcses including art. Also as a result of meeting Molly and Jane we now have so many new rp/usher friends (family) who I am now able to be there for if needed.
Molly and Jane thank you for the last 2.5 years helping both me and Alice learn and understand that anything is possible being deaf/blind having Ushers........ Exciting things are awaiting Alice now ❤️ #ushfam #rpfam #deaf/blind #inittogether
I have been asked over and over why I didn't complete my initial dream to be a primary school teacher and for some time it was a sore subject, however, today I can say once again that things do happen for a reason.
My education was anything but easy after my Usher Syndrome diagnosis, even those who professed to know about the condition proved only that they had heard of it, based on the support I got!
I had a few shining stars through my senior education (14yrs - 16yrs) one was the lovely lady from Sense, sadly I did not see her after moving to college.
Then at the college I went to Strodes College in Egham, Surrey had the most amazing staff and a SENCO (special educational needs co-ordinator) Nick, a man I will always be very grateful to.
Nick was fantastic for lots of reasons but in the main he was very honest and had a great attitude.
On meeting him he told me he had no experience of Usher Syndrome, not even heard of it. Not only that Strodes had not supported anybody with significant hearing loss or blindness and they had certainly never had student with a guide dog, however, having seen my academic ability based on my GCSE results he offered me a place and then began considering the support I would need.
Nick found me a personal assistant who would modify materials for me, liaise with my teachers and the area support worker, email me anything I needed ahead of lessons so I could access easily on my macbook and be fully prepared for everything coming up. All sounds easy - it was, the team around me were totally professional, completely organised and they made my access to learning fully accessible and to them it was no big deal, I did not feel awkward or a burden like I had been made to feel at the previous school!
They made it that easy that guess what? Not only did I get fantastic A level results and got into what at that time, I was told one of the top three universities in the UK for primary education but I got my confidence back, I made new friends who saw me simply as Molly and they just accepted me the way I am. Those college days were some of the best days ever.
Sadly once again the rollercoaster of my life was to hit another major low and this time at university.
I felt so proud of myself having made it not just to university but to this particular university who offered me a place the same day as my interview, I was elated, sadly it was all to end very badly.
In March of 2014 the university offered me a place, subject to A level results which I felt fairly confident about thanks to my support at Strodes and also the mandatory ‘Skills Test” an online test that I could not access, yes, a Government website inaccessible, that was my biggest concern!
Once again I had to rely on my Mum making telephone contact to advise I could not access the tests,! as back then I could not use a telephone!
Thankfully between my Mum and Nick at Strodes College an alternate test was set up for me and executed by the College, totally unacceptable but hey, we did it and my exam results confirmed my place.
Teachers inspire the next generation, I was and remain very capable of that, however, my feeling this confidence was to be crushed once again.
Before arriving at the university it was arranged for my lecturers to attend a pre start meeting to discuss me, my support requirements and guide dog Unis - I’m told nobody turned up!
I was so excited to be starting university, I was following both of my older brothers and I felt incredibly proud, especially after all I had endured especially in the hideous school I went to between 14 and 16. I had nothing to prove to anybody accept myself.
I had amazing flatmates who on day one I sat down and did the whole ‘this is what Usher Syndrome is” was as simple as that and they were fantastic, goes without saying Unis was a favourite from the beginning.
Sadly the university staff were far from understanding or considerate let alone organised. Most would comment on how gorgeous Unis was then didn't consider me any further.
It was clear there was no consideration for me or the other deaf girl on my course, lecturers would continually speak with their backs to us and even though I have little vision I had learnt as a deaf child to always sit towards the front to give myself the best chance of lipreading, reading body language and gestures and basically fill in the gaps, nothing new for deaf people, just a part of the coping strategy learnt from very young.
Over and above the “back facing me” bad practice there was often the use of look ‘here and there’ when referring to slides, what that means to somebody blind is ‘WHERE?’ not a clue.
It was so clear none of the lecturers using these methods had attended the awareness class set up for them.
On top of that bad practice lecture after lecture came and guess what? No reading material often followed by its on the Moodle (university intranet) another of those wonderful websites I couldn't access, simply couldn't enlarge the content so snookered from the beginning and it didn't matter how many times the various staff members were told nothing changed. The best response was ‘we will allow you more time for your assignments Molly’ not at all useful for me. Besides the fact I get totally exhausted just being me having a build up of work and being behind played havoc with my anxiety - nobody was listening.
My MSI (multi sensory support) worker did her best but I don't think she was listened to either.
Visit after visit to the disability co-ordinator did not resolve anything in fact the first one was replaced by a man with a guide dog, blind but not deafblind and my only memory of him is nothing to do with my course or support but that his guide dog and Unis had some sort of confrontation and she was never the same thereafter!
I coped up until the half term (late October) with the support of my flatmates and new friends I had made. I really enjoyed the independence of living away from home with Unis and the social life that I was completely involved in, again thanks to my friends but the very reason I was there was not working and I Knew people were not listening.
After a week at home and some long conversations and soul searching I decided I would need to take things further as without a doubt I was behind and still very little reading material and several assignments not complete.
It had been part of the agreed support that all reading material would be provided ahead of lectures, that it would be modified to my personal requirement, that i could then read it ahead of a lecture meaning I could then sit and completely concentrate on each lecture - listening and concentrating with Usher Syndrome is enough of a task without having to try to listen, follow a lecturer and read, far too unreasonable to even assume it possible.
Pretty early on my return to university I was told my first school placement would be in a nursery, I was horrified, not that I don't like little children but from a safety point of view little children are small and new to school and school rules so often a little unpredictable and having just 5 degrees of vision I wanted to avoid any possible accident. I voiced my concerns and also my desire to work with children of junior school age (7-8 upwards) for the reasons I have stated - fair comment I thought. I was told if I didn't accept the placement I might not get offered another, as if I should feel lucky followed by the flippant comment ‘how do you think you can be a teacher if you can’t work with little children?’ I don’t know how I didn’t cry that day, I felt totally crushed.
Instead of complaining I spoke to my ‘MSI’ and agreed to visit the school, sadly it was with the same university assistant who had decided I was incapable.
The journey was awkward and on arrival at the school it was even worse.
The rules were:
Unis would not be allowed in the classroom, she would need to be in an allocated room along the corridor (I would have to find my own way)
The children would always come first (obviously).
There would be 30 minutes for lunch, that would include me attending to Unis. (No parks were within 5 minute walk radius.)
When I did outdoor gross-motor activities with the children (LOTS of this in nursery) Unis would not be with me, but in her 'room'
The last one, my favourite, NOT:
In the event of a fire the children would come first, again,
obviously - If Unis was indoors in the specified room and I was outside with the children and the fire alarm was to sound I would not be allowed back in the building to get Unis for safety reasons. My automatic response was that I would give anybody inside
permission to take her lead and escort her out! The response: ‘We couldn't guarantee that, the children are our priority.'
Whilst of course children are always a school's priority, they had set
unacceptable rules, firstly distancing me from my guide dog, my mobility aid and secondly had not considered my need or her worth in any shape or form.
I have Unis for a reason, it is not for others to set unacceptable rules but to consider us as a valuable package and a package that would add value to any working environment.
Just ask the Headmaster at Oldfield Primary School, Unis and I
volunteered there for six months, she was a very treasured member of the team and they were sad to see is go.
Not once did the university speak up for me. Not one of the ‘rules’ were acceptable and clearly nobody had had the hindsight to contact guide dogs for the blind to ask what is and what isn’t acceptable. My safety was never considered in the workplace, nor was it ever questioned.
I was devastated to the point I felt not just bullied but discriminated against. The drive back to the university was in silence.
I went home that night my confidence in bits.
Nobody knows me like I do and I would have made a fantastic teacher, a teacher who understands disability, who has a creative mind and a determination to make a difference, however it was not to be.
I visited my GP who was furious about my treatment and wrote a letter of concern to the university and I put in a formal complaint.
I could tell you so much more about how badly I was treated but its going backwards and I am one only capable of looking forward, especially was my level of blindness!
My last visit to the university for a meeting to ‘resolve’ things was the day I knew it was all over. The long meeting just highlighted how inept they were, lots of empty promises lots of stupid excuses for not being organised and really a complete failure to understand me or my condition. Nobody had listened at all.
They offered me a few choices but my confidence with them all was gone and there was no way I could have coped with years of their incompetence to support me.
I left for my own sanity.
My Mum furious at my treatment pursued them and all fees were returned, ‘lessons have been learnt they said’ and I had hoped if nothing else, nobody else would be treated the way I was!
Sadly I now know of two other students on my course, my friend who was deaf and another with various other challenges who have both since left, not being able to complete the course through lack of support and it is this what has led to this blog.
Leaving university was the right decision for me.
I didn't feel a failure, I felt angry and let down but not defeated, I absolutely refuse to be defeated.
I had my charity Molly Watt Trust and various speaking engagements to keep me busy and by then I knew my path was just made to be different.
My skill set are not ones you can study for. Today I am an educator, not in a school but in the fields I am passionate about, the things that educate and enable - awareness of need and assistive technology, both of which should lead to inclusivity.
These days I use my negative experiences to find positives.
I advocate for others who feel less able to communicate their needs.
I call on my own strengths as a young deafblind person and use them to enable others.
I want an inclusive world, I don't want others to struggle or suffer the way I did because the treatment I endured was not necessary.
Strangely as well as my family and few close friends I can now thank the very people who made my life a living hell for making me the person I am today - ‘Determined to make a Difference’.
My name is Anum, I am 20 years old, soon to be 21.
Some of you probably know that I have Usher Syndrome as we went to the same school.
Where can I start?
I was born in Africa, Kenya, some of you couldn't believe that I was born there but I was.
I was born hearing, then when I was about 8 months old, I got meningitis. My family wasn't expecting that to happen and struggled with what to do about me because I was only 8 months old.
We went to the hospital for a few checks up. The doctors told my parents that I was fully deaf and there was no going back. So my father who is currently in Kenya made a huge sacrifice to send me away to England to have a better life, better education and a better future.
So I moved to England when I was about 1 year old with my mum, my brother and sister while my father stayed living in Africa, working hard as a doctor for his whole life. We still do go to Kenya and visit him in the summer of course, sometimes it can be hard because of the distance! Anyways we moved to England and I started a hearing impaired primary school and while there I had some problems, with falling down, banging in something, dropping objects and unable to find things!
My teaching assistant noticed something wasn't right while I was doing games, I kept falling over, being very clumsy and unable to find the ball. After this happened she informed my mother about it. My family noticed as well at home and got concerned. So they decided to take me Moorfield eye hospital for a check up.
To be honest I don't even remember going to that hospital for the first time because I was only about 9 or 10 years old. They told my mum that I have Retinitis Pigmentosa which is the blind part of the Usher Syndrome. This made my life really difficult because my deafness and blindness were linked together.
I was aware I had Usher Syndrome when I was 10 years old. I struggled so much, struggled to see in the dark, worried what other people would say, got so frustrated when I trip over, bump into people, even though I do say sorry to them but they gave a bad attitude back which is dreadful, I get so upset when it makes my life hard but I won't let Usher Syndrome take my life over. I am always try to be strong.
My family and close friends understood it and supported me through it. They also help me in the dark as their guide. I really do appreciate it because I do need some support!
I hated going to hospital for my eyes check up, it was horrible and dreadful. I hated the eye tests and eye drops. Even worst I hate hearing not very good news from the doctors which upsets me. Sometimes when I go to the eye hospital for my check it takes hours, then at the end there is bad news.
I get really frustrated and wonder what is the point of going there because there ain't gonna be any miracle or cure to make my eyes better but what can I do?
What has happened has happened, no one is perfect and we have to be happy with what we got and what we can achieve.
I went to a boarding school for 8 years and met few people who got ushers. They probably felt similar to me. I was glad that I wasn't the only one.
At first I used to let my ushers bother me, stop myself from going out with my friends, used to stop myself from being social, used to stay indoors but then I realised that it was making my life miserable so I decided to do what I wanted to do. I go out a lot, have a good social life.
I go clubbing which involves the dark with lots of flashing lights and I have support from my friends and family who keep their eye out for me and always make sure I am ok.
You mustn't let your ushers stop you from anything. Be happy and do what you want to do and what you always wanted to do.
There are days I feel so down but I try to do lots of things to keep busy and avoid being negative. I used to be negative but now I am not. Good days and bad.
For those who have Usher Syndrome, you are not alone, try not to let it bother you. Sometimes I get dreadful headaches, eyes aching, feeling dizzy, flashes, tired and weak. Sometimes I get very clumsy and fall over or trip over and my friends would laugh at me and I would laugh at myself because I don't let it bother me! I am glad I am not alone and totally understand you guys feeling! BE STRONG AND DON'T LET YOUR USHERS BOTHER YOU even though it's a horrible condition! Keep smiling
Hey my name is Jodie, and I am any normal eighteen year old except having to cope with this cruel condition too!
So here’s my story.. I had no clue what RP or Usher syndrome was until I joined secondary school, and had a friend in my year who was diagnosed with it, I learnt bits from her just by asking her questions about how she coped and what it was like. I knew she struggled in the dark a lot because she always asked someone to guide her around the school. I always thought to myself how brave she was coping this condition at such a young age and that I was the ‘lucky’ one that I didn’t have it. She sadly left by the end of year seven and then forgotten about Usher as I got on with my life. The Halloween night came by and I was out trick or treating with my friends and my sister, then there was a low brick wall with a street lamp above it, I just happened to walk straight into it and tripped over and bumped my head, of course my friends laughed and my mum got bit concerned about it because anybody would have seen that. Weeks went by, I began to bump into things or trip over the objects and I chose to ignore it and thought I was just being clumsy child. My mum wasn’t having it so she took me to opticians to have my eye tested, I didn’t really know what was going on and just thought I needed glasses. But until the lady said that I could be diagnosed with Usher syndrome and needed to transfer me to the hospital for further tests. I just sat on the chair froze and thought to myself this is impossible? I was only 13 years old .. My mum went hysterical and burst into tears, so we both walked out the opticians and told my dad and my sister the news, my dad fought back his tears and tried to stay strong for me while my sister started to cry. They already knew little bit about the ushers because I told them about my old friend I had in my school.
When we got home, my mum researched more on the computer about the ushers, and I used to get really angry at her and telling her to stop looking it up and that I ‘don’t’ have it, I guess I was in denial at that time believing that the lady at the opticians had got it wrong. Then it was the day I had to go to John Radcliffe Hospital in Oxford, my hands was shaking and my thoughts were all over the place but I had to stay strong for my parents. When we saw the doctor, she tested my eyes with field vision tests and I remember the first time I had eye drops in, I hated it! Then the consultant came in and started explaining about the Usher syndrome and gave my parents books and leaflets. I just sat on that chair just blanking everything out and thinking this must be a terrible dream. I went home later on that day, and I knew I had to tell my friends at school, so I started to tell my close friends that I have Ushers syndrome and they were very supportive and already knew little about the condition. So I was little more relaxed around them because they treated me like normal and only ask if I needed help to get about in the dark. I used to be so stubborn and say ‘No’ I can cope with this all by myself and pushed my friends away when they asked if I needed help to get around in the dark, as I walked in the dark by myself, I struggled so much and got so terrified because I didn’t want to walk into something and get hurt. So I ended up telling my friends to help me get around in the dark and they understood that I wanted to be independent teenager but only needed extra help.
Now my family and friends are all aware of my condition and learnt that they don’t need to go over the top about it and just take one day at a time, I still go to hospital appointments and yet I still moan about going or I didn’t want to do the tests and I still get frustrated when I trip over things and bump into something but that’s something I have to live with I guess? I had no one to talk to about my usher similar to my age until I met this lovely girl Molly who also had the condition. I just remember the first time inboxing her on Facebook and asking how to open up to people about my worries and I kept bottling things up inside me because I didn’t want to upset anybody and wanted them to think that I coped fine. She replied back and she was so calm and reassured me that it wasn’t good holding things in and it’s better to let people know how you’re really feeling. So I took that advice and opened my worries to my close friends and boyfriend and they were really supportive, especially my boyfriend took his time to research the condition and try to understand that I needed little support at night times and not to wave the sides when I can’t see very well, he even goes to the hospital appointments and coped my complaining about the eye tests that I had to do. He was there all along just by holding my hand and making sure everything is ok alongside by my family too.
You should never let usher stop you doing things you want to do in life, even though it may be hard but try and achieve it with extra support, I am very glad that Molly had set up the website and blogs where I can happily read people’s stories and feel a lot better about it when I know I’m not alone in this cruel condition. So I would like to say great big thank you to Molly and her family for taking their time to do this amazing website/charity to get more people to be aware of the condition. Lastly I like to say big thank you to my family for being so supportive and being there when I need it.