As part of my ‘rollercoaster ride’ I have experienced huge ups and downs over the years.
A husband and four children comes with challenges but nothing out of the ordinary accept one child was born deaf and needed additional time and support.
The deafness diagnosis brought challenges within the family as along with looking after two young and active sons there was an array of appointments to deal with and rarely enough time in each day to get everything done.
Thankfully back then I had a husband with a flexible job and a very understanding manager, parents who were very hands on and an amazing support system in my area.
There were a few fights for support in school but nothing that wasn’t ironed out quickly.
Molly was born deaf, she knew no different and was a happy child who just wanted to be able to communicate she made parenting her an enjoyable challenge.
Each little achievement was rewarded with a smile that made all the hard work worth every single moment.
Deafness was not a misunderstood condition, there were audiologists, teachers of the deaf, social workers for the deaf, deaf clubs and events and all locally.
For me it was all about putting in the time, listening to my child, to the experts, lots of patience, oodles of encouragement and watching my little girl thrive and thrive she did.
As the rollercoaster went for us it was like a child’s ride deafness was ok, it wasn't frightening, there were lots of deaf children, it was doable, time, support, help and belief and we reached the end of that ride without tears.
A confident youngster achieving that of her hearing peers, great job.
The killer blow for me as a parent was the Usher Syndrome diagnosis, my deaf child would become blind, possibly the most frightening thought of all. We were all plunged into darkness, literally it was more like the ‘haunted house’ ride.
Few had heard of Usher Syndrome and if they had had not met anybody with it let alone worked with a child with it. There were no others with the condition in our area, the support required now was very specialist and it was not available.
There was panic, there was a gaping hole in support services and this hole would need to be filled by specialists direct from Sense.
Nobody was trained to work with Molly, more departments became involved all sympathetic often overly so but their way of supporting a young person very individual / unique in her needs was sadly very makeshift and dare I say trial and error.
It was the most stressful time of my life.
There were now more appointments than ever and very few local. Lots of travelling a very unhappy and confused child and nowhere to turn.
I remember being very thankful of a visit from a lovely lady from Sense who would work with Molly. Molly’s support team locally and put together a specialist report incorporating her needs.
One person who really could make a difference, a lady who made a huge difference in our lives, sadly Molly would only see her once every 6 weeks and yet her whole education relied upon her input. I am very thankful of that support however it wasn't really enough to educate not Just Molly but everybody that worked with her.
It didn't feel like it was enough and so here my tenaciousness took a hold of me, it was not ok to just make do, it was not ok to feel isolated by a condition, it was not ok that the many professionals around us seemed to more feel sorry for Molly than support her and enable her, it was not ok to just do nothing.
I set about learning as much about Usher Syndrome as I could, each appointment be it audiology or ophthalmology I would question, question, question, research online. I made myself known to Sense, I began networking to find others living with, working with or with knowledge of Usher Syndrome, I attended conferences. I became the ultimate pain in the proverbials - I was a parent on a mission and my child would succeed.
As it turns out I was very wise to do all of those things, along with working and nurturing my other children. I was prepared for the oncoming battles, every single one should be completely unnecessary if people are more aware and finally it would appear there is a way for this to happen.
I have fought with the education system, with the DWP, with Student Loans, with Occupational Therapists, with ATOS and why?
Quite simply they expect my daughter to be something she is not. They assume she is incapable of very much, they do not think outside of the box.
People in these departments are decision makers, they are making decisions that can change the lives of vulnerable individuals and yet they do not know enough about the condition and we cannot expect them to know everything about everything but they do need to listen to the experts, the person they are often assessing and to consider how and why a person functions the way they do.
When I tell you one ATOS doctor that assessed my daughter told us he had ‘googled’ Usher Syndrome the night before you will understand how unacceptable the system really can be and it is not good enough.
For those who have met my daughter, heard her speak, seen her do things, her passion about making a difference need to remember a few very important facts.
The only reason she can function the way she does is with the right support, the right technology, the right equipment an environment acceptable to somebody who is deafblind and a huge amount of effort.
My whole reason of putting this blog together is not really to talk about my life history but to indicate how hard things have been made over the years and how not everybody has the energy to fight these battles and in effect are let down by the system, however, after visiting Maneesh Juneja’s VR Workshop in London I see the way forward is right there.
Already there is VR of dementia so lets have VR of Usher Syndrome it would make the lives of all from patient to professional so much easier.
VR would bring empathy and understanding to those working in healthcare to the decision makers and to families all of whom would then be able to make more informed decisions and provide relevant support and assistance and an end to the never ending battles so many face.
Often described as tenacious and on occasion a ‘rottweiler' by Molly, the truth is all I want is the best for my children just like any other parent and so like everybody else I will continue to ride that rollercoaster until I can safely get off!
I had never heard of Usher Syndrome until I worked with a girl who has it.
If I’m honest I saw her come in and out with her guide dog and she appeared to be ok, never asked for help, seemed to cope as well as the rest of us.
I didn't know the girl very well but she was popular.
I feel bad admitting this but I was kind of suspicious of her as she seemed so ‘normal’ that I googled Usher Syndrome and was surprised to learn she was deafblind and that deafblind doesn't mean hear and see nothing which then explained why she spoke and why she has a guide dog.
I was really curious, I should have just asked her but it seemed rude, looking back I should have just asked rather than wondering how she coped.
Anyway, she and I became friends and I told her about my first impressions and how I found it hard to believe she hd a disability even though having a guide dog should have confirmed it and that I felt terrible about it, she told me not to, it was nothing new, she just wanted to get on with her life, be understood and wanted absolutely no sympathy, “It could be worse” she said!
Sadly it seems I am one of many who needed to be educated, my friend told me how she often finds the ignorance of others more challenging than her condition which really is very sad.
She told me she was used to this sort of thing and tried not to let it trouble her, even though it can be difficult.
I remember we met in the April and we got to know each other really well through the summer, she was great fun, we laughed a lot, she even laughed at herself when she tripped or had what she called “an usher moment’ not sure I would have been quite so jovial living with her daily challenges.
I learnt a lot from my friend, she rarely complained, just got on with life occasionally asking for help but nothing much.
However as winter came, the nights drew in she changed, was almost a different person.
I didn't understand why she always wanted to head straight home, never wanted dinner or even a drink after work, always seemed in a hurry to get home, was strange.
It seemed she only came out sociably if she was with a friend she had from school days, I didn't get it, actually felt a little pushed out so this time I confronted her and asked why she was so off with me, she was shocked I felt that way and sat down and explained why she behaved differently.
On top of the tiny window of vision is night blindness and bright lighting in shops, the changing lighting everywhere as well as bright summer sunshine which make her challenges even greater, I hadn’t considered any of that, again it was me feeling silly but it was so strange.
The happy go lucky person she was through the summer became like a Jekyll and Hyde, a Cinderella rushing home before dark!
How cruel is this condition?
Its completely misunderstood, I googled it and still didn't understand it properly because the only ones who truly know are those who have it and live with it day in day out.
Just wanted to get that in writing just in case it helps others understand.
For me the worst thing about having Usher Syndrome (or any disability I'm sure) is the constant battle for understanding.
A little bit goes a long way.
In my own personal experience I have spent more time explaining myself and my condition for people to say they understand and will support me, to later find out they have no understanding at all even though I'm still blue in the face from my explanations and therefore it gets put on their back burner.
When you have to repeat yourself and remind yourself on top of your daily reminders you have difficulty makes you feel degraded, embarrassed, lowers your non existent confidence and makes you less inclined to want to battle on just getting on with everyday life.
All I ask is, say what you mean, don't placate me or try to empathise when you have no intention of doing anything. If you have questions I will answer them.
There is nothing worse than false hope to be sideswiped or knocked back again. This applies to all walks of life, even down to the health professionals who we have to sit down with and 'prove' we struggle in order to receive help.
My aim here is not make you feel depressed but enlightened that the small gestures you might make to help someone. ...... MEAN THEM!
Thank you for taking the time to become more knowledgeable. :)
I always wanted to work, I'd never considered that getting something part time around my studies would be an issue because "I know my own capabilities" clearly few others understood or wanted to understand, at least that's how it felt.
Both my brothers had part time jobs in local supermarkets whilst doing their A levels, both are sighted and hearing and neither had a problem getting employment.
Neither particularly liked the job but it was pocket money and as my Dad always says "Good grounding" working with the public.
They were both employed to work at the checkout which meant sitting at an electronic till that scanned and did all the adding up, totalling and even told them how much change to give to the customer.
I know fully well I could have carried out that job with only minor modifications and a little consideration for myself and my guide dog but I was never given the chance.
I applied for job after job to be told, I'm sorry not hiring or my application just completely ignored. I began to feel despondent and very negative about myself.
My friends all had part time jobs and as a result they also worked during the school holidays and made new friends, once again my condition, although invisible isolated me from people, things and experiences.
The feeling of rejection as a teenager was very painful and although I wanted to just give up something inside told me not to.
Then just after my 18th Birthday the local pub had a new landlord and was looking for bar staff and after an interview of sorts he, knowing my condition decided to give me a chance, I was so excited and absolutely loved that job.
Fully aware of my disability and my guide dog the landlord was very accepting. There were a few broken glasses and calamities but, I think on the whole all went ok until two things happened!
The first one was that winter came and the dark nights, the lighting in the pub became incredibly difficult but I enjoyed being in the pub, meeting people, being part of a team, it felt good to be out there doing it.
Then I went on holiday with my family and when I came back my job had gone!
Sorry no hours for you Molly, followed by no replies to my texts and that was that.
I was devastated and to this day do not know why I was ignored and rejected in this way. It was painful and crushed my confidence and totally unprofessional an attitude.
It took me quite some time to get my confidence back and to start looking for part time work again but in the meantime I worked for my Dad when I could and always happy to carry our charity work to keep busy.
Then I was fortunate enough to learn of a job with a well known local retailer and to get an interview, I was delighted but so nervous as I knew my disability had to be explained and I also knew how few people understand Usher Syndrome.
The common misconception that deafblind always means hear nothing and see nothing and the shock that I can speak too! I can also communicate with BSL and tactile signing but neither are my chosen method of communication, however, I learnt it to communicate with those who sign as a first language.
A long chat with my parents and friends made me feel better and up for the challenge.
I was very nervous on interview day and it didn't help that I arrived slightly late and the hotel receptionist didn't have a clue where the interviews were being held but after some discussion with a colleague directed me by saying and pointing "You go up there and round the corner and its a room down there" - I'm blind, I couldn't see where she was pointing and where is "there" anyway?
After asking for better instruction I got where I needed to be and in I went.
It was a group interview and I could sense people looking at me.
Thankfully they were a friendly bunch and I was made to feel at ease.
The interview certainly made me think a lot, not just about my responses but to the responses of the others at the interview.
I found myself feeling quite confident and able to be myself.
At the end of the interview I was quite sensitively asked about my disability and I have to honest I'd rather be asked and give an honest answer to any question than for others to assume.
I wasn't sure how the interview went but I decided positive or negative result this was a good experience for me as if nothing else I had made each of the people at the interview aware of Usher Syndrome and that has to be a good thing.
Being invited for a second interview was great for my confidence but this time I was nervous not just because I really wanted the job but that my guide dog and I had to negotiate London in the rush hour which is quite a challenge in itself.
I won't go into great detail about the interview except to say as nervous as I felt I was able to be myself and to explain myself, however I was very anxious about my journey home!
As a result I did leave the interview without staying to ask questions which I wasn't happy about, however, I did take the time to email my questions and explain my reason for not staying behind at the end.
I was offered the part time position, both myself and my guide dog feel very welcomed and accepted and I thoroughly enjoy the job.
I feel a valued member of staff, I just wish all companies were as open minded as this one.
Sadly there is too much ignorance of disability in the workplace and it needs to change.
Awareness and understanding is all it takes and we can do the rest.....
What is Multi Sensory Impairment?
"Persons are regarded as deafblind if they have a severe degree of combined visual and auditory impairment resulting in problems of communication, information and mobility".
One severe impairment e.g. severe hearing loss, accompanied by partial sight or moderate sight loss still constitutes deafblindness. The reason the later or secondary loss only requires to be moderate before compounding effects are felt, is that the second sense has been relied on to compensate for the first loss. Normally a profoundly deaf sign language user who becomes partially sighted will have inherent problems with communication, access to information and mobility. In a similar manner, a hard-of-hearing person who has always lipread, when vision deteriorates at all will have problems. Equally a blind person who has relied upon sharp hearing will have real problems if hearing substantially deteriorates.
So how should somebody of school age with this condition be supported?
A teacher of the deaf or teacher of the visually impaired is not enough, there must be a multi sensory impairment specialist involved.
In our area we found support for deaf children outstanding. At the beginning it was very full on, literally bombarded with information, weekly visits from a teacher of the deaf, meeting with speech therapist, groups to attend to meet other parents and deaf children, audiology appointments regularly, details about claiming Disability Living Allowance, details about our local Deaf Children's Society and the Charity DELTA (Deaf Education through Listening and Talking) who's ethos I absolutely recommend and details about SEN (Special Educational Need) and Statementing.
It was daunting but looking back how lucky we were to have so much support and input from the Hearing Impairment Team and particularly the Teacher of the Deaf (TOD) and great input from the Speech Therapist.
We also had consistency and accept for two or three visits Molly had the same TOD from pre-school through to almost 14 years old.
Lots of hard work went into supporting Molly on her journey as a deaf youngster and the results are clear.
Molly caught up with her peers, her speech developed beautifully and she often describes her happiest times where at nursery and primary school.
Then came the "Usher Diagnosis" at senior school.
Confusion best describes the next chapter:
Deafblind, no qualified teacher to work with the deafblind but there are Visual Impairment Specialist (VIS) teachers, Molly will have a senior one!
All well and good but a TOD and a VIS do not add up to a Multi Sensory Impairment (MSI) Specialist.
There was the honesty that neither the Deaf nor VI teams were familiar or experienced in supporting somebody with Usher Syndrome - somebody needed to be trained' it would take 3 years for somebody to be qualified!
In the meantime MSI support had to be bought in from Sense to support not just Molly but the team around her and that was to include teachers and teaching assistants at the school as well as advise the TOD and VIS.
The one thing that became ever obvious was the sheer exhaustion deafblindness brings along with mobility issues and acceptance.
Acceptance made ever harder by the ignorance surrounding the condition.
For us there was a grieving period, which was very painful, particularly when there is continuous questioning "You're not blind" "You're not deaf" even by those who should know better.
The cruelty of an invisible disability makes acceptance all the harder, the continuous questioning often leads to a very unhealthy and unacceptable denial which again has its problems.
The desire to just "fit in" never goes away and then the need for acceptance from all.
Acceptance and understanding in education, acceptance and understanding in the work place and acceptace in general is required and it really isn't a big deal to know the basics.
I cannot and nor would I want to speak for the entire Usher Community but where my own daughter is concerned she wants to get on with her life, to achieve what she can and more important than anything she wants and deserves to be happy.
In order for her to have those few things all she needs is to be accepted as the person she is and to be understood and what is more she is the expert on herself!
At this stage direct support can be achieved by simply asking!
In the workplace potential employers should be aware of the diversity and unique skill set people with usher syndrome can have, how much value they can bring to any workforce.
Like us all they just want that chance.
I think they call it "Thinking outside of the box".
I will at every opportunity try to raise awareness of RP, Usher Syndrome and Guidedogs.
Our Journey – The Other Half
This is quite a long story so be warned there is a bit to read here!
Apologise to those who find staring at a screen for long hard but I just needed to get everything off my chest.
I am Dan and I'm 21 years old and I am Molly’s boyfriend and here is my story.
2013 was a strange year for me, I had turned 20 and at the time I was working part time in Sainsbury.
I had been through some personal stuff and wasn’t happy at all, I had no motivation and often felt low.
One night I went to Smokey Joes Nightclub in Maidenhead and met Molly, at this point I was not aware of anything and had never heard of Usher Syndrome and didn’t know anyone Deafblind.
Molly was with a friend who I did know and we were introduced ‘’wow’’ I thought as I saw her ‘’she is beautiful’’ I muttered to myself, but as I spoke to her it appeared that she was ignoring me….. I didn’t know what to think at the time but I persisted in trying to chat, however at this point her friend mentioned that she was deaf and most probably couldn't hear what I was saying!
I could t believe it, I was confused and shocked, it certainly makes you think that you could walk past and try to talk to someone at any time who could have a condition or a problem.
I soon moved on to party with my friends, however, Molly and I added each other on social media and we talked for a bit but nothing was ever mentioned.
One summer evening Molly decided to have a few friends over and asked if I'd like to come.
I was just chilling after a workday and thought why not. When I got there we all had a good laugh and Molly and I seemed to bond, at this point I was still not fully aware of Molly’s condition and we carried on talking through text as friends casually chatting about all sorts of things, nothing out of the ordinary.
Around this time one of Molly’s friends was having a Birthday and she was having a night out in Reading.
Several of us all got ready together and had drinks and a pizza before heading out, it was at this point that this 'hidden disability' began to become more visible.
Molly was mentioning assistance for her during the night and eventually it was said when I queried it, I didn’t know how to respond I mean how would you?
A girl you are interested in and are good friends with has a progressive eye condition, is severely deaf with hearing aids and cannot see in the dark. You can imagine my brain working overtime trying to process this information and that night I noticed she was being helped around.
It did not out me off at all.
Now for those who don’t know Molly and her family they support Everton FC and I support Liverpool! Yes imagine the banter, Molly was going up to the north west to see her Grandad and asked if id like to join her which I did.
It was during this time that I really saw the condition, having to repeat myself and during the night helping her up and down the road to the club where Her Grandad went for a drink it was safe to say at this time we were both tested as I tried to understand and come to terms with reality and Molly almost distancing herself as though to protect me from her condition!
After the trip and a few days later we started seeing each other and On August 13th we became official so to speak.
So now we are an item what next?
One of the most hard conversations I have ever experienced - Molly spilled the beans and explained everything, her sight could get significantly worse, she can’t go out alone especially in the dark and that she has a guide dog (Unis) who btw is one spoilt but loved dog (more later).
I broke down in tears I mean what a cruel condition no cure nothing. I felt truly blessed for having both senses – you can imagine the guilt and emotions I was feeling. Molly admitted to me she felt this would push me away.
I am, I guess, a typical man and deal with these things my own way showing little emotion – I would go to the gym for long periods or have some alone time but nothing was telling me to finish things.
After this we got stronger, I haven't stopped learning… admittedly I often walked off ahead or said ‘’did you see that over there’’ in which Molly would remind me time and time again! It sticks now and I don’t do that but could you blame me at the time? Still there was a few times karma came round and smacked me one which Molly never forgets, guiding Molly across the road near her house I told her to ‘’mind the curb’’ she did……. I didn’t! Molly burst into laughter and after I looked around to make sure no one saw I noticed Molly felt a lot better around me and more comfortable – was this because I tripped? I was learning?
Many have asked how I told other people like family and friends. I came out with it straight away. My mum was the first I told along with my Dad, Stepdad and Sisters, they reacted positively (my mum and older sister have posted blogs so check them out) and I felt confident in telling everyone I knew. I told my friends and they all said they respect Molly for all the videos and events she does and I am the same she makes me very proud, I have seen her talk and she’s amazing at what she does! She is a great role model for anyone with Usher who needs some support when they are down and to all those with Ushers believe in yourselves there is nothing you cannot do!
So 15 months in and we are going strong. Of the future, who knows?
I intend to support Molly on her journey as much as I can while she studies at university.
Not forgetting Unis, who isn't just Molly's guidedog but she's everything to her. I know she found it difficult in the early days but she's moved on so much and when all three of us go out together, I have one hand and Uni has the other, she is very much a part of our relationship.
There is much more to say but another day...