MAINSTREAM

Tuesday, 09 December 2014 00:00

Coping with Usher Syndrome in the US 1940's and 1950's to date

Born profoundly deaf. 78 db and 83 db. . ( 1948) Speech therapy started 1951. Had to be mainstreamed in kindergarten cause I was imitating the kids in a local deaf school. Absolutely no ASL anywhere. Hearing aid ( body aid) in 1st grade. Two BTE in 3rd grade. Short story on my schooling. We just did not talk about handicaps. My 3rd grade teacher remembered my hearing loss. ( an OLD friend of Mom's) . It took me years and years AND YEARS AND YEARS to realize that people forgot my hearing loss. ( that was a compliment but I needed the help!!!) Telling a teacher at the beginning of the year. They totally forgot it. I never knew they were talking while they facing the blackboard and writing. If students answered in the classroom. I was searching for them to hear/see what they said. Hated it when the teacher said " I do not go by the book." AWWW Geee, listening. Some walked all around the room. I got a long neck from watching them. Tutors , we found some. But they were not with the school system. They would say " I think this is important." Maybe my teacher did too. Very very very discouraging. At church school 1st --5th grade. We had Spanish. Always had to start over for the new kids. 5th grade, we learned The Lord's Prayer. Repeated 5th attending public school. Later 9th and 10th, I took the required language. Spanish. Again, my tutor in 10th grade had her method. ... All of the above in school for me was " sink or swim." Yeah I did go through a few depressions. ( I did not understand what was going on, or why I had these deep and sad emotions) .

A HOH friend , 10 years younger than me. Speech is good. Tiny lisp. Went to the Academy with all the nuns. They did NOT want a failure on their record. You bet they tutored her in Spanish the summer before school. She knew exactly what to expect. Of course, she got on the Spanish Honor Society. I found this out a few years ago.

Another friend , one year older than me. You don't forget her hearing loss with her deaf voice. She got A's in Spanish.

I still get irritated thinking about this. I attended school like a hearing person. Barely passed.

I was a plain little wall flower growing up. My Dad saw an outside activity. I started riding horses. We later bought ( total of 3 horses , one at a time) . I was showing American Saddlebred all over Florida!!!!! Expensive, yes. Dad split the monthly bill 3 ways. Dad, Mom and me, we 3 loved it. Showed 7th--12th grade. I did not do too bad. Got some blue ribbons. Dad 's goal was for me to look back and think " yes I was good at something!!!!!" I really treasure my memories. Any competitive sport would do the same. Boost some confidence in us.

All of this was just with the hearing loss. Started noticing blind spots in my mid 30's. So my journey is not the same as your Molly.

American's with Disability Act has helped and there is so much more awareness . We have come a long and positive way. !!!!!!!

Sunday, 26 October 2014 01:00

Jack and Usher

My lovely son Jack has usher type 2. Way back when he was small we were concerned about his hearing. He seemed to fail all the hearing tests but the health visitors didn't action anything. it wasn't until we moved to Germany at we finally got a diagnosis that Jack had a severe hearing loss and needed 2 hearing aids.

Jack coped really well with aids and we were fortunate that he had had enough residual hearing to achieve perfect speech. even now, if you could not see his aids you would not realise he is deaf - the reality though is that his hearing declined around the age of 8/9 and he is actually profoundly deaf.

At one point he was offered cochlear implants, but when we went through all the testing they decided he would not get as much out of them as he does aids, so he remained aided.

When Jack was around 7/8 he started to get crippling migraines, little did we know that this was was the beginning of our journey with Ushers!

When he was 11 we noticed that he was struggling in the dark, we got referred to Ophthalmology and after a lengthy process we got the diagnosis

!Life has certainly been different since that!

Jack is a very bright boy and took his 11+ exam and passed it which meant that he went to Grammar school. His additional needs were quite a challenge for them as they have very few students with SEN. but we got there in the end and he left with good results, and is now studying Law and Sport at college.

Jack's achievements outside of education though are very impressive. He proudly carried the Olympic Torch, has been Sense's Young Deafblind Person of the Year, Young Deaf Sportsperson of the Year, Nationwide Disabled Sports Award Winner, and he is currently on the England TASS scheme (Talented Athlete). He is currently on the Great Britain Visually Impaired Judo Squad and competes all over the world. His senior ranking is no 9 in the world! His sights are firmly set on Rio 2016 and it is well in reach for him. Already in the pipeline for next year are competitions in Brazil, Azerbaijan, Seoul, Austria and France - he's a busy boy!

He also competes in mainstream judo competitions and just today he has won a bronze medal at a mainstream event in Belgium. He also achieved a place on the mainstream England Judo Squad.

Jack has had a few part time jobs and currently works at McDonald's. He likes going out with his friends, and does everything that a normal 18 year old does. Thats not to say it is always easy, but he just adapts things as he goes along. He has a lovely girlfriend and plans to take a year or two out when he leaves college in June to train full time at the Judo Centre of Excellence. Long term plans at the moment are University to possibly be a PE Teacher or Physiotherapist!