The Inclusion Institutes at Syracuse University
A Recipe for Success: Sue Rubin

 

Sue Rubin's keynote, "A Recipe for Success," was presented at the October 1997 Facilitated Communication conference held in Orange, California

Good  morning.  I am going to speak about the elements that were present and allowed me to attain the success I have.  As you may know I recently graduated from Whittier High school with a 3.97 GPA, having taken a college prep course and several honors classes.  I also scored 1370 on the SAT and am presently enrolled in Whittier College as a John Greenleaf Whittier Scholar.   Because I will take longer than the usual four years to graduate, the college will spread the $38,000 that accompanies the scholarship over my college career.

Although all of us are very different and only share our method of communication, I believe that all the factors that were in place for me are necessary for anyone with a severe communication handicap to succeed.

Also I realize that I have been very fortunate to live in Whittier, a community that has always been accepting of people with disabilities and has had a Special Education system that has always been open to new ideas.  Even though not all severely handicapped students are in regular classes, it is an option for parents to choose from in all grades.

Once I started facilitated communication when I was in the eighth grade, my parents chose to send me to Whittier High because they were already doing full inclusion. We had a regular ed counselor at my IEP so we would be sure I signed up for all the courses needed to graduate with a regular diploma.

Although at the time we did not know I was capable of doing honors work, we chose honors English because we thought there would be fewer distractions in the classroom.  Faculty had never had severely handicapped students in the honors classes, but were used to autistic and other severely handicapped students in their classes.
 
 The principal was new the year I started school and my mom spoke to him about me.  He said the school was there for all students and she should come to him if there were any problems, especially with honors students' parents.  There never were any problems and the parents were happy their children were in class with me.

The element really important for me was a special education staff that was very adept at dealing with sadly awful autistic behavior.  Because the school was set up for full inclusion the special education  teachers and aides were not in separate classrooms, but supported students in regular classes.  In fact, they are called support staff at Whittier High.  I usually had a teacher or an aide in the class with me, although I sometimes shared this person with one or occasionally two other students.   Sometimes I was supported by a fellow student.  When I had an outburst in class I was taken out until I was able to return to class.

On some occasions I was taken to a small room to lie down until I was calm.  The psychologist was always on call and rushed to my school when I needed her.  My psychologist, Jackie Leigh, was the person who introduced me to  facilitated communication six years ago.  She has been a very important person in my life ever since then. She happens to live across the street from me, so now she is also a neighbor and friend.  She has a lot of experience working with  people with autism and understands what helps us and why we do the things we do.  She is an important factor in what success I have had and I wish each of you could have someone like Jackie in your lives.

Another very important element was a special education administration that believed in facilitated communication.  Each special education district in California has some amount of independence in how state funds are spent.  In Whittier the amount of money spent on administrators' salaries is small so more money can be spent on aides in the classrooms.  Also our director is very  friendly with his staff and listens to what is happening every day in the classrooms.  When Frontline caused many districts to stop using FC, he knew the problem was with Frontline, not FC.

This doesn't mean that every person I came in contact with believed I was doing my own work.  My eighth grade principal was a skeptic and some of my teachers were doubtful;   however, by the end of each semester they became convinced it was my work and even allowed me to do tests at home when I needed more time or my facilitator was not able to type well enough with me to let me do a test without influence.

This brings up the question of stable support.  I really don't believe I had the right kind of support. The Special Education staff thought I should type with as many people as possible so I wouldn't become dependent on one person.  However, with a different support person each period of the day, I was not able to type really well with most of them.  I could type social conversations but couldn't do difficult academic work.

It was not that I needed them to do the work for me because I could actually type things independently at home but not type the same things with a facilitator at school.  I think I should have had two facilitators at school and have had them over a few years.  As it was, I had to start each year with several new facilitators.

The people I now type best with are those who have been consistent in my life, my mom, Jackie, and my speech therapist, Darlene Hanson.  Having the consistency of my mother typing with me three or four hours a day to do homework was not only important for developing my skills using facilitated communication, but was also necessary for my thinking skills.

I am very autistic and all the information I had been absorbing over the years was all mixed up in my head.  When I started typing it began to become organized.  I don't know if other people with autism or people with other disabilities are like this, but in my case I am sure autism prevented me from thinking or being aware of what was around me.  Autistic people are as different from each other as non-autistic people, so some autistic people may not be as involved as I am and facilitated communication will be easier for them to use.

It is because of my autistic behaviors and motor problems and past diagnosis of mental retardation that made it so hard for people to believe I was doing my own typing.  Over the years I validated my typing many times by typing something my facilitator didn't know, but I knew if I really wanted to be believed, I would have to type independently.  When I saw the video of Sharissa and Lucy typing independently I knew I could do it too.  For months I thought about it and was assuming I  was able to but I was afraid and was lazy. All my instincts were telling me to do it, but my body was listening to my autism.  Finally in July, 1996 I was able to type quite easily without physical support with my mom.

Although I only type independently with a few people, I find it much easier now to type with support with many people.  At WAPADH [Whittier Area Parents Association for the Developmentally Handicapped] monthly workshops I often type with strangers.

Now that I am living away from my parents and attending college, I am finding that my needs are changing.  My mother always know how to make autism go away so I could do homework.  Also, in high school, I was in class seven hours a day.  Autism got buried because I was so busy.  Being in college is a very different experience, especially since I am taking only two classes.  I am quite horrible around my support staff.  :-(  What I need is a lot of structure in my life and support staff who are firm, fair, and confident.

As for facilitated communication, I have found it quite easy to type with new support staff as long as they want to do it.  I did have to fire one person who never wanted to type with me.!!

I would like to acknowledge all the people who have been instrumental in helping me.  That includes not only my family and those closest to me, but also the regular ed and special ed teachers and administrators in the high school district, and Whittier College professors and administrators who have really gone far beyond legal requirements to make me welcome at Whittier College.

I would also like to thank WAPADH, the agency supporting me at home and at school and my friends, both old and new who live with me and help me daily.

I firmly believe that I am not an exceptional person.  I was just lucky to have all the elements necessary for success, in place.

Thank you.  :-)