Franklin's life with facilitated communication began back in the spring of 1993 when Pat Wilson made a significant and extremely difficult decision. She left her small hometown in Indiana and moved to suburban Chicago, Illinois with her son. She was seeking inclusive schooling, a philosophy and an educational practice that promotes equality and aims to provide services to students with disabilities in general education settings.
It was at this time that I met Frankin and Pat Wilson. Pat came to visit Kruse Elementary School, the school where I served as a special education teacher. Pat toured our classrooms and thought the model might be better for her young son. Franklin had demonstrated literacy abilities for several years and Pat was desperate to cultivate his acquired skills.
Franklin was also going through a lot of anxiety and uncertainty at this point in his life. This is how he remembers the transition to an inclusive school: "When I used to live in Indiana I never got to learn in a classroom that taught academics but I was all ready to learn. It made me feel so sad and angry.".
Franklin experienced a lot of success in his first inclusive school. Before long he was engaging in challenging curriculum, making friends, and running track after school. One year later, he finished sixth grade and moved on to middle school. During his years in middle school, he made great strides and experienced a few challenges. At times, he had to ask for more complex curriculum, better curriculum adaptations, or increased opportunities for social interactions. When he moved on to high school in 1998, he was ready for new opportunities and anxious to introduce his new teachers and classmates to facilitated communication.
Today Franklin is a high school junior at Sandburg High School in Orland Park, Illinois. He is the recipient of a school-wide algebra award, is a member of the school basketball team, and has developed relationships with a number of classmates. None of these accomplishments happened by chance, however.
Franklin and his mother, Pat Wilson, have worked hard to educate teachers and administrators about facilitated communication throughout the years. In the following interview, Franklin and Pat share some secrets of their success.
PK: I know that you have spent a lot of time thinking about your own education and that you have fought successfully to be educated in inclusive schools. Please share your thoughts on why inclusive education is important to you.
Franklin: I want to say that in the self contained classroom I really did not expect to learn. All the activities were the same and I was bored. I want to say that I never got out -- that's why they called it self-contained. The deserving people with disabilities have to be treated the same as everyone else and have the same ways of learning with books and teachers and students. The people of society need to also learn that it is wrong not to give us a chance and how would they like it if they stayed in a room all day with nothing to do? We should try that some day and see if they could learn. I should be in regular classroom because I am smart and I want to learn and I want to go to college. All the people with disabilities can learn and want to learn. We need to learn with everyone else because if we don't then how will the world ever know we exist and are smart?
PK: You are such a strong advocate both for yourself and for others. During your "schooling career," I know that you have taught many people about both inclusive schooling and facilitated communication. What strategies have you used to educate others on these topics?
Franklin: When I was in health class I did a report about the brain and autism and FC. This helps to educate the other kids and the teacher.
In addition, my mom and I did a "questions and answers" presentation (about me and FC) for all the teachers this year. I also did a presentation for [a university course] and the students were going to be future teachers. They were great and they believed me. I was also was part of Indiana FC coalition and did questions answers and I hope the OT who was there got it.
PK: Pat, can you think of any other strategies that you or Franklin have used to teach others?
Pat: First, you need to gather all relevant FC information and keep it handy. I never go anywhere without documentation. Usually I have the FC Institute's FAQs (Frequently Asked Questions), Franklin's FAQs, words other FC speakers have written, and a portfolio of Franklin's writings and presentations. Also if needed, I bring video tapes and books. If you are up against someone who may be resistant, make sure you have current research to share, along with names and phone numbers of current researchers or others who may be able to offer useful information. You will probably not share all the information you have, depending on whom you are speaking to, but make sure you pick out what you think will have the biggest impact. Franklin wrote a letter to Mrs. Clinton a few years ago and got a reply. We have a copy of both his letter and her response -- this usually impresses people!
When speaking in person, I think it is very helpful to show an unedited copy of typing along with an edited copy. When Franklin writes, he has his own "style" which helps to validate that they are his words and not mine.
Recently, I made Franklin's principal a deal he couldn't resist! I paid for a full day workshop on autism, movement differences, and FC and he released appropriate staff to come to the workshop. We invited general education teachers, assistants, the principal, the speech therapist, the psychologist, the occupational therapist, the transition supervisor, students, and whoever else wants to come. It was a huge success.
PK: What advice would you give to teachers about supporting students who use FC?
Franklin: I want to first tell everyone that I am very intelligent. Then I want to tell teachers to do their homework. That is what they should do to learn what it is all about.
I would also like to tell them that they should always talk to me really and not to my aide. Then they should ask me questions about the things we do in class and they should learn the technique.
Pat:
My answer to that question is a "top ten" list:
Pat: A Million Dollar Question!!! The IDEA 97 clearly states that parents are equal partners in their child's education, but unfortunately this concept of partnership is difficult. Somehow, somewhere, an invisible barrier has been built between school and home. We all need to realize how much we both are an integral part of our children's education. What is done at home impacts what is done at school. What is done at school impacts what is done at home. This is such a critical component of FC and I can only dream that this could be a reality for all FC users. Their progress would soar if we could all be on the "same page."
As a parent, I feel that at times I've had to beg, borrow, and steal my way into the system. Unfortunately, the reality of "politics" is what I believe is the inhibiting factor to develop real partnerships. I do believe we are beginning to make progress in this area. Through numerous conversations, stating the importance of collaboration and the complexity of FC, we are beginning to work together, (staff/parent/student) on techniques and assignments. If I would ever be granted one wish to come true, it would be that a school/home partnership be identified and developed on the IEP prior to any goals/objectives.
Franklin: First they need to work together. Each one- the home and school- knows that if they don't work together then we can't learn together. We have to learn treat each other with respect. We really need to trust each other. My principal is helping us work together. For example, we are doing a presentation for the English class and I wrote the speech. We are also having a meeting with the basketball coach so I can help out on the team.
PK: Pat, I know you have worked extensively with people who do not have any experience using facilitated communication. Can you talk about how you introduce FC to a person who does not have much experience with the strategy?
Pat: Always acknowledge that FC is controversial and that many people do not have the most updated information on research and technique. Also explain that because of the complexity involved, that you cannot explain everything in a short amount of time. Stress that if people do not have appropriate training and experience it is very difficult to implement. It is a very individual and complex form of communication, which takes practice, patience, and time. However, the truth is that it allows FC users to have a voice about their lives, their dreams, their opinions, so the time and effort is well spent.
Explain what FC is not. It is not just "typing". It may look the same, but try to explain the neurological functions and how the resistance is an organizing factor. This has been a difficult part for me to explain. Usually a handout to share is helpful.
Whenever I have attended any conferences or workshops, I have always sent the information to staff, and afterwards gave them copies of packets and other information from the conference. We share information with everybody-- principals, general education teachers, special education staff, psychologists, superintendents, counselors and Franklin's peers.
I think communication is important, as well. Franklin is currently developing a relationship with the transition supervisor via e-mail. When I first spoke to him I told him that the most important issue Franklin wants people to know is that he is a very intelligent person and wants people to know his thoughts. We came up with the idea of e-mail and it is working very well. It is a nice way for a new person in Franklin's life to get to know him- they learn about him through his words.
PK: This question is for both of you: can you give a few examples of effective adaptations that the school has implemented to maximize Franklin's participation and learning (or that you two have implemented)?
Franklin: I think that the best one will be when I do my English presentation about FC. We will do a Power Point presentation and one of the other students will read it aloud. In algebra we use the alpha smart and I do equations on it. The teacher does know I am smart and makes comments on my papers. The teacher's confidence is the adaptation.
Also, when you have autism you need to be able to say when you need a break and it is very stimulating and noisy and disorganizing for me so I need to get used to new places and have a schedule.
Pat: For the most part, I do not have an active part in making or suggesting adaptations in the classroom. (I wish I did.) I know that extra time is allowed, especially for tests. Franklin has two resource periods to use for that. We have asked that teachers directly ask Franklin questions at the beginning of class, and allow time for his response, then get back to him later during the period for his answer.
We have made up special "math cards" that have been very helpful, which are used at school and at home. Basically they were formulas or phrases or symbols that he could use and point to, that decreased the amount of time it took to type everything out.
He's had some interesting research assignments and we came up with some creative ways for him to do them. My favorite was for his Health Class Project "Natural Highs". He had to find ten community activities that kids could engage in instead of doing drugs. He used e-mail to contact people and asked them to work with him, asked a friend to go running, asked a friend to visit a college (he ended up doing a mini FC presentation for the class), invited a friend to a movie, Borders, fishing, and a workout. He also asked them for a brief statement describing their participation. Out of 110 points he got 120. In his foods class he had to research an appliance. He had prewritten the questions and then presented them to the salesman, and they responded very well.
A new thing we recently started is the use of "cue cards." They are words or small phrases attached to the letter board that he often wears around his neck. For example, at the gym where he works out he has to sign in his number. He can use his card with 5519 and show it to staff, then eventually he is able to verbalize it. These are used for specific and consistent situations, like buying crickets for his lizard.
PK: Franklin, I'd like you to have the last word in this interview. What is your primary role in making your education a success?
Franklin: I like to remind people to do more, to expect more from me. I would like to do more word problems...I want to do more fc and not "easy" questions... I want to be an author, so I need to be writing more significant papers. I also would like to learn how to give speeches because I have a lot to say.
At school, they are still wishing that I would do more verbal talking and I am but I have more to say with FC. The best thing about FC is that when I am given a chance I do have a lot to say and when I am not given a chance then I don't have too much to say because when I talk only the things that are at the top of my brain are coming out. I like school but I wish we would do more with FC because I have a lot to say.
I also want to tell you about respect. It is very important you know because if a person with a disability does not feel they are respected, I think it is not a good relationship. Sometimes I need help and when you are helping then you need to understand that it is my brain not doing what I want it to. That does not mean I am stupid. I will respect you if you respect me.