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My Communication Story - Kate Norton - Living With Ataxia

My Communication Story - Kate Norton - Living With Ataxia

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Published by Scott Orn
Early this year I wrote an article about my experience with AAC (Augmentative and Alternative Communication), from learning to sign at 16 when I went deaf to learning how to use a Lightwriter communication aid recently.

I never heard anything back so didn't relaise they had printed it in their April Journal until someone recently sent me a copy via email.
Early this year I wrote an article about my experience with AAC (Augmentative and Alternative Communication), from learning to sign at 16 when I went deaf to learning how to use a Lightwriter communication aid recently.

I never heard anything back so didn't relaise they had printed it in their April Journal until someone recently sent me a copy via email.

More info:

Published by: Scott Orn on Nov 14, 2009
Copyright:Attribution Non-commercial


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VOL 23 NO 1 APRIL 2009
My Communication Story
Kate keeps a regular blog at:
The last seven years have taught me a
lot about people, not just others but alsomyself and my ability to cope with what-ever life throws at me.Although I had a slow start and disabilitiesas a young baby/child (due to having been born with my thyroid not working at allwhich was not found out until I was nearlytwo, and epilepsy), I went to a regular pri-mary school and I remember hearing, being physically able to run about and ride bikes with friends and so on. I could speakand hear, and learnt to communicatepretty much the same way as most peo-ple. I know I owe my experience of a‘normal childhood’ to my parents whowere very dedicated and determined.When I lost my hearing at 16, it seemedlike I had moved to a parallel universe!Words, even if I could hear them with hear-ing aids in, made little sense. They were just a serious of sounds and it was liketrying to decipher a foreign language un-less someone provided you with thewords to read so you knew what they had just said.Visiting the doctor, bank or anywhere withthose glass panels at the reception be-came somewhat similar to visiting anaquarium as the lips moved silently upand down on the other side of the glass,doing fish impressions! Which, althoughquite amusing at times, was also frustrat-ing so I soon learnt to carry a paper andpen with me, to ask others to write downwhat they had said.My own speech was still clear at this stage.Other people had no problems under-standing me, and often didn’t realise atfirst that I was deaf. But by the end of myfirst year of mainstream local college Iwas struggling to keep up in classes, andwith no knowledge of how to lip-read orcompensate I was soon miles behind.My parents decided I would be better go-ing to a college for the deaf to learn tolip-read otherwise I was never going to beable to hold down a job if I couldn’t com-municate with ‘the rest of the world’. Ithink it was a hard decision for them af-ter fighting to keep me out of specialschools so far, but I am glad I was allowedto go. I went to Doncaster College for theDeaf whose philosophy was ‘Total Com-munication’, i.e. using all available meth-ods to make sense of the world andcommunicate with others, for exampleyou were encouraged to use any residualhearing you had left, as well as develop-ing lip-reading skills and using signs toassist learning.I learnt a lot from other kids who had beendeaf all their life, and I adapted quitequickly. I was fluent in sign by the end of the first term (it was residential so I wasexposed to signing all day every day) andalthough lip-reading took longer to mas-ter I was quite good by the time I left andable to follow most people. The other deaf kids taught me other compensation strat-egies and I learnt to be aware of drafts,vibrations, reflections off any reflectivesurface and anything that might signifysomeone else was behind you or some-thing else was happening based on otherpeoples body language and where theywere looking, etc.I found I could lip-read some people moreeasily than others; some just naturallyhave better lip patterns that are easier towork out. I also discovered that lip-read-ing is a bit of a misnomer, as you aren’t just reading lips. You have to learn to putvisual clues together like a jigsaw: facialexpressions, body language and the con-text of what you are talking about alsoplays a big part. Some words look identi-cal on all lips, for example
 job, shop, chop 
VOL 23 NO 1 APRIL 2009
In this situation you just have to guessfrom the context which word is the mostlikely.Rather than pure BSL (British Sign Lan-guage) which has a completely differentgrammatical structure to English, at Col-lege I used Sign Supported English (SSE).For example “What is your name?” in SSEwould be signed in the same order as spo-ken English (subject, verb, object)whereas in BSL it is topic, comment -‘Name you what?’ emphasizing the coreof what you are talking about. BSL is a veryvisual language and for that reason is dif-ficult to follow at first, after having beenused to English grammar all your life.The SSE gave me the vocabulary of signsthat I needed and I also learned BSL frommy roommate who was deaf-born and anative BSL signer, which was very usefulfor later accessing University, somethingI wouldn’t have been able to achieve with-out an interpreter.It certainly kept your brain sharp if youconsider the speed lecturers usuallyspeak; the interpreter had to translate thatinto BSL (quicker than SSE) and sign it tome, I then had to translate it back again inmy head.My situation seemed to bring out the bestor worst in some people. Some peoplewere just shy but curious, and others wereplain ignorant! Their body language toldme which was which. One lecturer wouldpraise the interpreter, and she would haveto explain she was just translating my an-swer. Another lecturer asked if he mustput up with ‘this charade’, and a complainthad to be made about his attitude.I never really considered how importanteverything I had learnt at Doncaster Col-lege was, until I had a job working withadults with severe learning disabilities. Inthe group I was in most of them were non-verbal - they all had different ways of communicating, and with one person (shehad autism) you had to guess what shewanted or what was wrong as she hadnever spoken and wouldn’t even point tothings. It made me aware of how totallydependent they were on someone else’sinterpretation of what they wanted orneeded. They relied on someone know-ing them well, which profoundly restrictedtheir ability to communicate with theworld. My heart went out to them - it washard enough just being deaf, I couldn’timagine what their world was like.My world involved a lot of guesswork andpiecing together bits of information towork out what was happening or beingsaid. Some days were quite exhausting - Inever had problems sleeping! It was niceto relax in the company of other signerswhen communication was much easier.At this time my circle of friends weremainly all deaf with a few hearing studentswho were interested in sign and hung outwith us because they wanted to learn.Coming back home and finding work withnew people to learn to lip-read again wasa new challenge, but I was quite an expe-rienced lip-reader and my speech wasstill understandable to others.This lasted until my early thirties when Isuddenly started experiencing sight prob-lems. These were the first signs that mythyroid wasn’t working as it should (al-though undiagnosed at the time) butluckily the sight wore off again after fourmonths.Those four months really shook my con-fidence in communicating and gettingabout, as having been deaf since 16 I re-lied on my eyes totally.My vision went in and out, subtitles weredifficult to read on TV and lip-reading wasdifficult - I’d get bits, then the rest would be blurred. It was like someone playingwith the buttons on a zoom lens andthings going in and out of focus.I started learning Braille but to my greatrelief the visual symptoms went away af-ter a few months.But I was getting stiffer in my back andlegs and by the following February (2003)I woke up barely able to move I rang my brother who took me to doctors. I wasadmitted to Neuro ward for further test-ing for MS, MND, etc.Hospital is awful at best of times, butwhen you are in a ward full of people youcan’t understand, and then nurses com-ing - flapping their lips at you then stickinga needle in you or something withouteven checking I understood what theysaid they were doing - it wasn’t much fun!The TV didn’t have subtitles and it wasvery boring. I managed to stick it out untilafter the MRI then discharged myself asit was Friday and I didn’t want to be stuckin there all weekend doing nothing.By June I needed a walking stick (age 33)and was using a mobility scooter to walkmy dog Inca. Getting through the day wasexhausting so I didn’t go anywhere otherthan taking Inca out.They eventually found my T3 levels weredangerously low. Basically your thyroid(when it works) produces a hormonecalled thyroxine that the experts call T4then your body converts it to T3 to feedyour cells/organs, etc. make everythingwork. If your Thyroid levels are too lowyour Thyroid Stimulating Hormone (TSH)will send messages to say you need tomake more. As my thyroid has neverworked from birth it couldn’t respond tothese messages so my TSH levels weregetting higher and higher whilst my T3 lev-els were dropping in spite of the thyroxinedrug I took.I was struggling with my speech by thisstage but was told once they sorted mythyroid levels out my symptoms would goaway. Some symptoms went, like the ex-hausting fatigue and constant pins andneedles but the Ataxia symptoms stayedand then started progressing despite get-ting thyroid levels back to normal again.Having successfully adapted to beingdeaf, when I later had to start using a wheel-chair, I told myself, ‘it can’t be that hard, just get on with it!’I met a few people who were paraplegicwheelchair users, who taught me a lot. Iwas reassured that they still lived inde-pendently, so I could too – I just needed afew adaptations. After getting a mobilityscooter I was soon managing the dog walk-ing and shopping myself again.About a year after moving into an adaptedproperty I started noticing other difficul-ties; my bladder was always playing up andI was clumsy with my hands, knockingplates off worktop, etc. Also, people Ididn’t know seemed to be having moredifficulty making out what I was saying, andI seem to get more tired just from trying tospeak - especially long explanations.Typing was getting frustrating, as I’d hitthe wrong key and sometimes the samekey several times. This was a problem fortext phone use.I searched on the Internet for a solutionfor me to be able to type as fast as I usedto, which was a futile and impossible mis-sion really considering I was trained inBusiness Studies and touch typing andused to type over 200 words per minute! Iswitched to an iMac computer with Key-strokes, (assistive software that providesword prediction, abbreviation-expansionand on-screen keyboards etc) and a spe-cial joystick so I could move cursor asfast as I used to be able to use a mouse.I developed an intensive exercise routineto try to stop the ataxia progressing. Insome respects this has worked, but onthe other hand it hasn’t stopped my armsfrom getting more ‘jerky’ movements tothem, (though I guess it might have beenworse if I wasn’t doing as many hand-eyeco-ordination exercises everyday). I’mstarting to reach stage where I am usingwrist weights to steady hands so I canchop vegetables safely without taking myfingers off and they are useful for keep-ing arm steady when I need to iron or wantto paint or draw. They are tiring to wear forlong periods though. I have mastered theart of controlling an electric wheelchairwithout needing fingers and fine motorco-ordination, using a big sponge ball on

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