TASH December 2003

Session: All Things Considered: Puzzling Support Situations

Challenges and Supports by Sue Rubin

Good morning. I would like to begin by talking about some of the challenges I have conquered and others that I still must face and how great support staff has helped me and continue to do so.

The first challenge, and perhaps the greatest, was being a non-verbal and non-thinking person. The introduction of facilitated communication into my life changed that. The support people responsible for such a dramatic change in my life were the school psychologist, the speech therapist, the special ed teacher and my family. When I moved onto high school the regular ed teachers and special ed staff were essential for my support in school, along with my family.

Even though I remain essentially non-verbal, the ability to communicate frequently with a variety of people has decidedly worked for me. It was extremely difficult to overcome some of my behaviors. When I was in high school I frequently had to be removed from class. With the strong support I had when I started college, it happened less and less frequently. Now it never occurs.

Another behavior I overcame is head banging. I am happy to report I haven’t banged my head in six months. I believe it is because my life is stable and the things that used to drive me to head banging no longer create emotional meltdowns. I believe my bad neurology has been altered. I feel different inside.

Also, the aggressive behavior that used to plague me is totally gone. The support I receive daily at my home and at school is very possibly responsible for the neurological changes I believe have occurred in my head. WAPADH, the agency that supports me, believes in facilitated communication absolutely – and trains staff. They also hire a very high caliber of people. Most of the people who support me are in graduate school. They are also people with strong backgrounds in autism and behavior modification.

I always interview proposed staff. They must have strong personalities and be able to fit in with existing staff. WAPADH does an outstanding job of finding support staff. I believe the agency is successful because they fire people who cannot live with the idea that we people labeled severely handicapped are actually quite bright. Those people who stay are rewarded every day by our successes that they are a part of.

The only challenging behavior I am still working on is echolalia. Whenever I want to initiate speech, echolalia comes out. Assume I hate it and am trying hard to overpower it. Actually, Darlene Hanson, my speech therapist, and I are working on increasing my spoken language. I hope I will be able to overcome echolalia the way I have been able to overcome the other challenges in my life.