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The Experiences of Molly Watt and Her Mum

May 7, 2010

by Molly Watt

November 06 I got diagnosed with Usher Syndrome Type 2 at the age of 12. 

Just before I finished year 6 at primary school (nearly 4 years ago) I was experiencing a lot of daily migraines and headaches. We didn't think much of it, but it started affecting my daily routine. After mentioning it to various people, they all suggested that I should get an eye check and perhaps receive a pair of reading glasses. 

This is a picture of Molly and her mom. Both women have blonde hair and Molly's mom is hugging Molly from behind.

Figure 1: Molly and Her Mum

At this point, since birth I had been hearing impaired. So the eye opticians asked why I was deaf, but we didn't really know, it was just unexpected. So having been at the opticians for the majority of the day, doing lots of tests, with more and more colleagues coming in to have a peek as they were all so curious. At the age of 12 I really wasn't too sure what was going on. After a while, the eye optician pulled mum aside and we were lucky that this guy had been reading about ushers, so he knew of it, but advised us to go to get some other special tests done to receive official diagnosis.

To be perfectly honest, I didn't find out about the diagnosis, I was just given glasses to be worn all the time so I didn't think it was anything serious. After a while, when we had attended Moorfield Eye Hospital a couple of times, I did start to wonder why I was going to a specialist eye hospital. So that summer of 2007, I started asking questions and it got out. I didn't really understand it, bottom line though, I just thought I had a rare eye problem that none of us were really sure about! I didn't at this point know that it meant my eyes were going to worsen and I was now classified as 'blind'. In fact thinking of it now, I never really properly understood any of it 'til late last year really! I did little research, but I avoided doing that most of the time, because it just scares everyone, and every usher is slightly different, and I'll find out in my own special ways how it is. Because we live and learn!

Since the diagnosis I think it boosted everyone's positivity. 2006, for my family was a very stressful, upsetting year. My nan got cancer, and died in the August. She kind of taught us a few lessons, because she was amazingly positive! So since the diagnosis and all the grief my family got that year, we thought, Hey! We only do have one life, we've got to live it, be positive and have fun, whatever we have on our plate! As long on as we have each other, nothing will really bring us down. We fight together.

So I think that it has made me a stronger, more positive individual. Although it can bring me down some days, it teaches me to rise above this, and live life, and not let anything stop me from doing what I want to do.

Being diagnosed for almost 4 years has taught me a lot of things. But I wouldn't say it has changed my life. In some ways it has affected what I thought of life, like for example, since I was little I have always loved yellow Beetle cars, and always wanted one "when I was a big girl!" but I have figured, I will never be able to drive so I don't think I'll be getting one of those! But to me, not being able to drive isn't the end of the world, but knowing myself, I know when it comes to that time when all my friends are learning to drive I may get upset. It's just one of those things that just cannot be helped. But I have my strategies of learning to overcome these things.

When I was little I used to tie my hair up on the top of my head and expose my hearing aids to everyone. Little did I know that that was the actual reason why I had so many people staring at me constantly. So when I started secondary school I became more conscious of them and started wearing my hair down. Having glasses as well didn't bother me at all. I think just now, being 15 almost 16, I'm more or less like any other typical teenager. I get moody, I wear make up, I like to dress nice and I like boys! Having ushers has changed my attitude to life. Sometimes I get upset when I can't see in the dark at parties like everyone else, but I still go along to see my friends. And having friends that actually help out and care for me are so worth living for. So whether my life has changed or not, having ushers has definitely has improved my positive thinking.

During phases of research, it often said that type 2 is severe hearing loss, and at late teens the eyes start to deteriorate over a long period of time. It's different for all ushers because as I said, we're all slightly different! But my eyes have changed/worsened/deteriorated a lot faster than I thought, which has surprised me.

And my eyes are very sensitive to bright light as well as dark light! That took me by surprise at first too I guess.

I did expect to receive more help at school, have more modification done, and in the past year, the preferred font size has increased in size rapidly, I wasn't really shocked at that at all...

Life goes on, I still have my family and friends, so I'm happy!!

Molly's Mom
by Jane Watt

Molly has usher syndrome type 2 - this means Molly is severely deaf and has retinitis pigmentosa (RP) an eye condition which causes night blindness, glare blindness and tunnel vision.

This means Molly is deaf, blind and deaf/blind.

Having been born deaf Molly did not speak very much until she was 5 years old. Her deafness caused a significant speech and language delay and she therefore attended a mainstream nursery that had a hearing impairment unit (HIU) from the age of 3. The support she received in the nursery was amazing and indeed we were able to move her to our local mainstream primary school once the necessary support had been put in place.

Molly had a Statement of Special Educational Needs from age 18 months.

In accordance with her statement the local mainstream school had to put in place various things to enable Molly to attend.

The school had to provide Molly with an acoustically hearing aid friendly environment. This meant, replacing the windows, replacing the old blow heaters with quiet radiators, providing soft furnishings like curtains and carpets in order that Molly's access to the curriculum was enabled.

Molly was given a teaching assistant for the academic subjects, English, Math and Science - a total of 13 hours per week initially.

The teachers assistant was responsible for making sure Molly was accessing the curriculum that she was learning at a pace suitable to her and that her equipment - hearing aids and radio aid were working and maintained within school.

That a specialist teacher of the hearing impaired visited twice a week for an hour at a time to support Molly, the teaching assistant and any teachers involved with Molly.

Also that a Speech and Language therapist see Molly fortnightly for an hour.

This system worked very well in Primary School and there was no reason for consideration to be given to a special school.

It is our opinion that Molly has learnt amazing life skills and strategies from being in mainstream school as she has been taught alongside hearing children with the necessary input and support.

On entering secondary school things are quite different, the main initial issue was the sheer size of the school and also educating so many teachers about the required support for Molly. Clearly having a teaching assistant to intervene between Molly and the teachers was a very good idea.

The teaching assistant would basically be responsible for meeting Molly's additional needs within the classroom, thus enabling her to work to the best of her ability alongside the other pupils.

Again the teaching assistants would be supported by the specialist teacher of the hearing impaired and the specialist Speech and Language Therapist.

This system worked well until Molly was diagnosed with usher syndrome and the blindness began to become obvious.

Molly could no longer access the curriculum without her work being modified and or enlarged. She now needed to sit in a certain position within the classroom and had to be in the correct lighting conditions. Molly could not see people around her, could not see below or above her eye level and indeed she began walking into things and people and falling over objects in and around the school.

It was now very evident that life in mainstream was both difficult and challenging and that we needed to consider other options.

Molly was at an all time low, she did not understand what was happening to her and she was exhausted, emotional and very afraid - she felt for the first time she did not fit into mainstream school, but did not know where she belonged.

Molly made the decision to go to a special school for the deaf as she felt she needed to find where she belonged. There were a couple of other children there with usher syndrome, however, the majority are just deaf. The small classes appealed and Molly felt safer and more able to continue her education without being 'The Odd One Out.'

However, this has not been the case. Molly is very much 'different' from the other children and the deaf children were almost jealous of her for the first year or so. They seemed to resent this new person arriving at their school and needing to sit in a certain seat, needing to have the curtains drawn rather than allowing the bright sunlight in, needed extra attention from the teachers with regard to modifying and enlarging her work, that she had many visitors accessing her additional needs, indeed this part of Molly's life was indeed stressful and upsetting and very hard for us as parents.

The specialist school for the deaf were able to cater for Molly's needs as a young deaf person, however, there is still need for a specialist visual impairment teacher and also a multi sensory impairment teacher, to support Molly and the staff who work with Molly.

The deterioration is Molly's sight now means she has a full time note taker and also is learning Braille. Molly still feels she does not fit in this specialist school as she is different.

Molly does not have learning difficulties, indeed she is an incredibly intelligent young lady and she copes extremely well but only because she has the necessary support.

For Molly the specialist school has offered her small classes (maximum of 8) which has made accessibility easier. There are less people around, so less obstacles for her to navigate around. Mobility for a deaf/blind person is incredibly difficult and they rely on memory and being taught safe routes etc. In mainstream this would be made far more difficult due to the volume of people.

For Molly, the benefits of mainstream school have made her aware of 'normality' and this has equipped her with invaluable life skills, which a lot of children who have always been educated in special schools do not have.

Molly has always been a very happy child and even with the onset of her blindness, from 12 years old she has on the whole amazed us with her ability to deal with everyday as a challenge and to grasp life with both hands and to laugh at herself. Indeed she is an inspiration to all.

I believe Molly can be a great ambassador for usher syndrome as she will show people a positive side of a very cruel condition.

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