The Inclusion Institutes at Syracuse University
Surviving

 

I was asked to meet with and explore facilitation with a young woman who was then in an adult day program with her evenings being spent in a group home. She was perceived to be a person who was extremely sensitive to anyone touching her or, for that matter, going near her. She was completely nonverbal and from staff descriptions, was in perpetual motion. She was also reported to engage in a great deal of bizarre, ritualistic behavior such as licking the floor, crawling under tables, screeching, grabbing at people, and sometimes aggressing toward others and herself. The agency that was providing her programming had purchased therapy services for her from another organization to help "desensitize" her to physical sensations, touch, proximity to other people, etc. I was also informed that unless you had known her for a very long time there was little likelihood of making any kind of connection. The staff could only think of two people who could dependably engage this young woman and they had been around for ages.

After I spent quite a bit of time with the team (six people at that point) gathering information and deciding logistics, the young woman and I were introduced. She was in a busy, noisy, day room with lots of "materials" and people engaged in a variety of activities. The staff was excessively nervous about what was going to happen. I think they thought the young woman was going to either run away and become "upset" or become physically aggressive with me. It was a bigger job calming them down than it ever got to be with the potential speaker!

I went through the introductory remarks that I usually make and we were still standing while I did this. When I asked if she would like to find a seat and explore the possibility of facilitation for her communication she reached out and took my hand and led me to a nearby table. I could hear the murmurs of disbelief grow behind me as the staff expressed their incredulity at what they were seeing. We sat down, began typing and two hours later, I had to hang it up. My hand and back just gave out. She required quite a bit of resistance to her hand and arm movement and, consequently, I ended up standing beside her to get enough leverage. The conversation ran the gamut of inquiring about hair styles to wondering how to go about getting support in her house to type.

Throughout the two-hour session, at odd intervals, I explained to her that I was going to just explore the possibility of using touch on different parts of her body: head, back, shoulders, sides, etc., while she typed. I wanted to see if it would help her maintain her physical control. Some speakers have reported trigger points that respond favor- ably to pressure and appear to increase their ability to focus. And truthfully, I did want to find that out. But I also wanted the staff to see that she was a reasonable person and wasn't going to fall apart. So, while my right hand was busy providing her the necessary resistance to slow down her letter selections, my left hand began a systematic exploration of the effects of pressure from the top of her head right down through her lower back: neck, shoulders, front, back, sides, and hips. I even gave her reassuring pats on her knee from time time just to let her know (and underline it for the onlookers!) that things were going REALLY well. She was great ... nothing bothered her. We kept right on talking. Contrary to finding a trigger point on this person who "hated to be touched," my exploration with touch had no more effect on her than a gnat on an elephant!

When we were finished ... or rather when I finally folded ... the staff members were very eager to discuss their observations. Many on the team had worked with this particular individual for several years and had never seen her:

  • sit for such an incredibly long time (or sit period!)
  • tolerate physical touching (and I admit I went overboard with it but I had a purpose!) and
  • tolerate a stranger in her presence ... forget the touching!

Obviously, this encounter held a great deal of meaning for the young lady. She was totally attentive during the whole two hours. There was no move to distance herself nor did she in any way indicate that she found my touch to be unpleasant. Everything that happened in those two hours defied 26 years of exhaustive recordkeeping and observation.

I found myself wondering how such a delightful young woman (with such a difficult reputation) had managed to survive all those years. How do any of the people who are "silent" manage? It is a thought that consumes my waking and sleeping hours. How many times have I encountered a resilience that defies description? How is it possible to endure that isolation and live completely within your own mind? I suspect more and more that the saying "we only use a small percentage of our capacity" is more right than we could ever know. The people who navigate this unique internal landscape have developed incredible coping skills and mental vigor. They have survived under circumstances that would baffle most, if not all, of us who are considered typical. We are the fragile ones in comparison!