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Sue Rubin

Autcom FC Pre-Conference

Nov. 11, 1999

 

††††††††††† I would like to begin by just saying I would rather be able to talk and be an average college student rather than the unusual person I am.That being said, I know I canít control who I am or what disability I was born with, so I will share with you how I have made the best out of about the worst combination of genes I could have been given.

 

††††††††††† As you can see, I am extremely short because of Noonanís syndrome.I naturally would love to be a normal size but must make do with this little body.I also have apraxia with classic autism, so I canít speak well and have the usual foolish behaviors associated with autism like echolalia, aggression, self abusive behavior, obsessive compulsive disorder, failure to inhibit and all the other goodies that make us so enjoyable to be around.Until I began using FC I was also thought to be retarded and certainly acted that way.My receptive language was poor and information was not processed.I really was retarded.I wasnít thinking.I donít mean I wasnít thinking like I do now, I mean I wasnít thinking at all.I know this is different from most people who use FC.They say they were totally aware of their surroundings and just couldnít communicate.

 

††††††††††† When I started FC when I was 13 I was decidedly shocked that I could do it.I began slowly matching sounds of letters with words.I eventually could type well enough to be in regular classes, but my behavior was awful.The support I got at Whittier High was extraordinary.My teachers and psychologist were all making every effort to insure my success in spite of the behavioral problems.I initially had to be removed from class fairly often.As I became comfortable with the environment and had academic success I was removed less and less frequently.I always could depend on my mother to make sure I was doing all the homework and therefore could do well on my tests.At school I sometimes shared an aide, but for my honors and AP classes I had a one to one aide.By the time I was a sophomore it became apparent that I could do college work.My behavior helped me by not disturbing me as much in class.I know you expected me to say I controlled my behavior better, but actually I am at the mercy of my behavior and often it controls the situation.So with a lot of support at school and at home I graduated with honors from high school.

 

††††††††††† When we started looking at colleges we knew I should be in a small school where people would get used to me and not where I would be a constant curiosity.We tried to find a school that would exempt me from the SATs, but none would. My psychologist agreed to prepare me all summer so I would feel comfortable with the testing situation.We did request a separate room and unlimited time.She was my facilitator for the English part and a former teacher was the facilitator for math.There was also a recorder in the room so the facilitator could focus on me.I did well, getting 1370.I was glad we couldnít get the college to exempt me from the SAT because now I know I was accepted to Whittier College under the same rules as everyone else.

 

††††††††††† This is now my third year.I am taking only two courses every semester because of the amount of time the writing takes.I write an essay every week for each class besides completing the required reading and preparing for exams.I have eight books to read just for my African History course.Luckily my professors enjoy having me in class and I enjoy them too.So far I am doing well with a 3.7 GPA.

 

You probably want to know about my support at school and at home.WAPADH, an agency that receives money from the state, employs the people I hire.I have two staff who go to class with me.Each is responsible for one class but they overlap twice a week so I could do homework with either one and they are familiar with the work.They also are responsible for helping me with research for term papers and are note takers in class.When I respond in class they read my typed response.I donít use the Lightwriter in class because I can type faster and completely independently with fewer typos on a Franklin.

As for my home life, I wanted to move out of my parentsí home when I went to college, so we bought me a house near campus.I have a roommate who also works as the FC specialist at WAPADH.She pays half the rent and utilities, but is reimbursed by WAPADH.We get along absolutely famously most of the time.We are both adventurous and like to travel and are crazy about dancing.We go out either by ourselves or with friends, most of whom work at WAPADH, and always have a great time.I would like to get more involved with events at school and will now be able to do that because Lisa, a school support person, just graduated from Whittier College last May and knows everyone on campus.

 

††††††††††† Just so you donít think my life is perfect I must admit that my behavior is still a problem.I no longer have any problems staying in my classes, but I am sadly a mess at home.I make everyone in my happy home master the art of behavior management and CPI, a self defense technique.The support that my staff and psychologist give me is amazing. I believe that if I couldnít use FC no one would be willing to put the emotional energy into helping me as they do now.Not only can I discuss what is bothering me, but FC has allowed me to form very close and personal relationships with my staff.I make every effort to type with them independently so they see me as a capable human being.I really see the independence as essential to this equality.Of course, the independent typing is essential at school.Even when I require minimal support it is in an environment where people have seen me type independently many times.

 

††††††††††† Independence also helps with negating influence.Even when a facilitator gives minimal support at the shoulder or back, I can feel influence.Obviously I donít mean influencing which letter I hit, because that would be impossible with just a light touch on my back; however, the physical touch can influence my typing by having me know what the facilitator wants me to type.I can only verify what I am saying, not describe just how it happens.Being independent doesnít prevent this entirely, but it makes me responsible for what I type.I can more easily reject the facilitatorís awful interference with what I want to say.

 

††††††††††† Quite a few people who use FC are experiencing what I described.We are always patronized and put down for wanting to actually examine this more closely.We are aware of the controversy around FC and donít want to make it more difficult for people to accept, but we are also entitled to be able to explore this area of potential influence..FC has changed my life completely and I wouldnít want my actions to prevent others from having the same opportunities I have had, but I think we should be honest about all aspects of FC.