Let's Get it Straight - A Mother's rant
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".
When Denial Becomes Reality
Retinitis Pigmentosa (RP) has always been something that I've denied but this year as I turned 39 it became clear I couldn't deny it anymore.
I was 7 years old when the news came that there was RP in my family. My sister was the first of us to be officially diagnosed it was the early 1980's and there was very little information around then she recently told me that back then she was informed by the specialist at Moorfields that there was no cure or treatment, she would most likely go blind and not to have any children! However, she now lives in San Francisco with her husband and two amazing children Lauren and James both in their early twenties and both unfortunately have RP.
My memories of that appointment are vague all I remember is having eye drops that made me unable to see for a few hours which I remember was scary especially at 7 years old. From there on I didn't think about it, RP was just an occasional conversation piece that we had an uncurable eye disease in the family that might make me blind but probably not until I was very old!
I continued to live my life and was lucky enough to have an amazing one with many extreme highs and lows enough to write a pretty good book but that's for another time. I travelled the world working as a singer beginning my career as a Bluecoat at Pontin's and eventually becoming a touring cabaret act performing at holiday parks and hotels all over Europe. My travels eventually took me to Glasgow where I began to settle and build a new life. RP was still very much at the back of my mind even though I knew I was struggling with going from light to dark places, by this time I was in my mid twenties. I was building a career in car sales was in a relationship and the years began to fly by without much thought of my eyes.
By the time I reached my 30's my thoughts turned to becoming a father, I never entertained the idea before, nothing to do with RP just down to having too much fun working in entertainment. On November 4th 2007 my life changed when Ellie was born, I took to being a dad as naturally as I take to the stage and as the tattoo says on my right forearm "It's like a song I've never heard I've never sung but know the words" a line from one of my favourite songs which describes becoming a father.
The bond between Ellie and I was so strong unfortunately the same couldn't be said for the one between myself and her mum and the relationship came to an end by the time Ellie turned 3.
At that time I had gone back to singing again driving all over the uk performing as a cabaret again. I made the hardest decision of my life to move back to manchester to be near family and to give up singing again so I could regularly make the long drive to bring Ellie down from Glasgow. By this time even though my eyes would struggle in darkened rooms I could still drive with no problem. As hard as it was trying to start again being so far away from my little girl I knew it was something I had to do, I had a gut feeling that it would eventually work out and that's when I met Amy.
Amy came in to my life and brought with her the promise of a love filled life I thought I'd never find. Amy had two boys Harvey and Louie, Ellie and I slipped into their world like it was just meant to be.
Within 2 years together I had gone back to car sales trying to build our life we were blessed with the arrival of the cutest baby boy you will ever see Austin, he arrived in June 2013 and on Xmas day that year I asked Amy to marry me and she said yes!
We then started to plan our wedding for New Year's Eve 2014. The following year everything changed!
By May this year my eye started to get worse and a check up at the local opticians confirmed my worst most denied fear my RP had started to rapidly progress and my driving days were over. My first thoughts were of Ellie and how was I going to be able to see my little girl? My second was what was I going to tell work?
I told work straight away and they let me go on the spot as I could no longer continue my role without a driving licence.
My little families world began to unravel, I went to the specialist who confirmed me as legally blind and gave no other answers. I then went to the job centre and asked for help. From there on it has been a constant battle to try and get the help we so desperately needed but were plunged into extreme poverty falling behind with bills and just finding it extremely hard to survive due to the horrendous waiting times for PIP etc never mind not being able to see Ellie due to the cost of collecting her from Glasgow.
As the months have passed this year my eyesight has rapidly declined to the point where I have now started long cane training and am on the list for a guide dog to try and get back the independence I have lost as I now suffer with anxiety due to my vision loss my confidence has all but gone and I very rarely go out alone.
The things that have kept me going is getting married to the love of my life on New Year's Eve as planned and meeting an amazing friend in Simon who I met through one of the facebook RP support sites on the advice of my sister in San Francisco.
Simon has Usher Syndrome Type 2 and it was obvious from the start we had so much in common other than our crap eyes. We shared a love of music and the same sense of humour. He is my best man for the wedding. When simon and I became friends he invited me to come round to his house as he had a mini recording studio so I could sing and let off some steam. Here began the start of a little confidence returning and the idea for my RP project.
Simon and I had held a couple of informal meetings with other RPers and that's where we met Colin who also has Usher Syndrome Type 3, a very special person who was equally passionate about connecting those who felt alone.
As time and eye sight went by I became more vocal and passionate about the injustices visually impaired/blind people were going through all over the world and that's where "Stand By Me RP" was born.
I was asked to perform at a meeting for people with RP and Ushers in the north and decided to created a theme song for us that I could share worldwide, I decided to use "Stand by me" http://youtu.be/qxFdmqZoceo because everyone knows it and then I re-wrote the lyrics around the fears a lot of us have. Through the support of the VI community and the amazing people who have responded to the video and continue to keep sharing it the message has reached place and people I never thought I would reach.
Molly and her incredible family and Joanne Milne who's story reduced me to tears in seconds in fact I have written a song about Usher Syndrome for Jo which we will unveil together in the near future. All of a sudden my future looks good again I am determined to take the disease that has stripped me of my confidence and use it with my passion for music to help as many as I can whilst in turn helping me find me again. Amy and I are stronger than ever and our wedding is only weeks away and even the recent trip to the specialist who confirmed that my central vision is deteriorating fast could not dampen my new found spirit. I will begin 2015 a married man and plan to fight to raise awareness for RP and Ushers with your help of course
Falling Into The Darkness
This was another day in my life when Ushers Syndrome had well and truly won.
I’d had my shop for three years after struggling with the demons in my head after taking my redundancy. I’d started a shop selling wallpapers and soft furnishings, I’d had a huge build up of emotions. I’d ran the shop for three years, but Ushers was taking over.
It was becoming harder and I was now on the waiting list for a guide dog.
The shop landlord wanted me to commit to another three year lease and also to increase my rent. The time had come to sell up and ship out. My heart was heavy, anybody that knows me will be sure to tell you I don’t do things half heartedly, either all or nothing as if i have a massive point to prove. Turns out all my Usher / RP friends feel the same, as if they struggle for acceptance in the normal world. But what is the normal world?
Back to the Thursday 13th of June 2013, I’d managed to sell most of my stock and had a date to be out of the premises, it was in the two weeks time on a Saturday. I’d managed to sell off lots of stock, but had to get rid of the fittings shelvings etc, this had all been made up in the shop and was too big to take out of the front door. I’d sold some of the display boxes I’d had made for my wallpaper. I’d sold two lots of twenty boxes (these were pretty heavy and made from MDF).
My shop closed at 17:30, so i made arrangements for the display boxes to be collected after that- as you can imagine, middle of June it was a lovely night and quite dazzling on my damaged eyes. I told the guy to bring help but he didn’t and if the truth be told, I didn’t feel comfortable about the whole thing from the word go. The only way out was to slide them along the floor, out the rear fire exit door, then lower them off the flat roof the the van below (which was ten and a half feet). My partner and her father arrived. They watched on the ground as me and the other guy slid them along the roof tied ropes around them, then proceeded to lower them down. It wasn’t easy but we did it.
Thank goddness I thought, took one step back and fell ten and a half feet, I hadn’t seen the hole in the corner. It was a rectangle about eight feet long by three feet wide, but someone had bricked up the wall. So not only had I fallene, but I had no way out!
When I fell I guess I was very lucky, as I had landed on my feet and quickly pulled myself together, but when I fell I didn’t feel right, I’d hit the floor with my hand and elbowed myself in the ribs. Also my glasses had fell off I searched about all the time, all the time I could hear people screaming my name, asking if I was ok. Then as I tried to pick up my glasses with my right hand I felt pain, I’d never felt pain like this in a very long time. I looked again, my right hand had in fact snapped off the end of my arm. I felt physically chlaustrophobic, how the hell can i get out? I thought. I didn’t want to panic anybody, I yelled “I’m ok, I’ve just broken my wrist I think”. Even though I knew I’d done more than just break it. There was lots of panic on the other side of the wall, as they decided to go and get ladders. I should of dialled 999, but I guess it was the Usher /RP that stopped me!
I went for the hard option rather than embarass myself. It felt like an eternity, all the time I was trying to stay awake and talk to my partner’s father on the other side of the wall, I’d even managed to call up A&E and book myself in.
Eventually, the ladders arrived along with a squad of helpers. One thing I didn’t want or need was someone to remind me about RP/Ushers and how I shouldn’t have even attempted this job in the first place. The ladders were now lowered and I was up the ladder before anybody got one foot on the rung, then the ladders were dropped over the other side of the wall. This time they demanded someone went before me, by this time they’d all seen my hand and how yellow i was becoming. They took forever to get me down. I jumped in the car only to be met by a hundred questions. I knew it was bad, because I couldn’t even put the seatbelt on and my partner wanted to throw up. It was a long, very long couple of miles to the hospital. I even called A&E again: “Hi it’s Colin, we are on our way”.
We arrived in A&E only to be met with a glowing, friendly smile and a wheelchair. It was Mark, a guy who used to work for me many years ago. He was brilliant. He took me to A&E and got me x-rayed and scanned, he then told me it wasn’t looking good and would have to reset, but there was splinters. So now I had everybody off the ward as an audience. He injected my hand twice, held my shoulders, and popped my wrist back on the end of my arm. Next I got a million questions about the incident and what did I say? I fell over the back door step, I guess I did this to hide the embarassment of RP Ushers.
I was on very large doses of pain killers and liquid morphine and very very tired. I was admitted to the ward and constantly fussed over by everybody. To be honest I hate that, especially as I kept thinking this is your own bloody fault, and that damned Usher Syndrome got me again!
The medical staff were great. They talked in detail about me but I was with the fairies on morphine, only to wake up two days later to find they couldn’t operate on me in Dumfries, but wanted the top man in Scotland to do it: Mr. Hamed at Gartnavel, Glasgow. They offered me a taxi, but I declined. I arranged my mother and father to take me up. Now I faced a further five days in a single room with Ushers, I was more concerned about that than my hand. I was met by the great man himself, a young guy and a good sense of humour. I was gowned up and ready to go, he said “ It says you fell over the back door step. Now tell me what really happened?”. So I did, I explained about my vision. He promised to try his best, as long as I stayed off roofs and tried hard on my physio.
After a couple of days, he came to see me. He said “You’re a lucky boy, you have 12 titanium pins, but I don’t think you’ll ever get full movement”. Before I left he sent me to physio. They told me five exercises ten times each, three times a day and stay off work for at least six weeks. So off I went back home.
The next day I was at work I had to wind things up, it was very hard. But I did it. I also kept doing my exercises all day. Finally the day came to empty the shop, it was a huge relief and felt right at the time. As if someone was telling me to behave, enough is enough. So I continued my exercises and went back to Mr. Hamed after six weeks he said “how are you doing?” He just laughed. “No more roofs for you. Your wrist is about three inches wide, your neck is half an inch, you’re one lucky boy”. He then laid the backs of his hands on his desk and said “You’ll never ever get this movement back”. I did the same and he was shocked. I told him “You made a promise and I made you one”. I guess I was so mad at the situation, I felt I owed him for wasting his time and being such a fool.
Well I guess the moral of the story is don’t be too proud to let others help, sometimes it is better to just walk away. Life is too precious.
