CHAPTER I: PEOPLE ARE NOT MACHINES: THE MORE YOU TRY TO DEFINE AND CONTROL THEM, THE MORE CREATIVELY THEY WILL ELUDE YOU!

Understandably, many people have no interest in responding to skepticism and rebel when asked to prove themselves. Rather than seeing this as a source of frustration, perhaps we should celebrate this strength of spirit that has allowed so many people to survive despite suspicion and misunderstanding.

• Freed -- Mark Reeves, speaker
• Back to the Future -- Colleen Huber, parent, facilitator
• Surviving -- Mary Lapos, facilitator
• Maybe Someday -- Anne and All Reeves, parents
• Facilitating Inclusion -- Susie Shumate, parent, facilitator
• Memorable Christmas:  A Letter to our Family and Friends -- Karen Wise, parent, facilitator

The stories that are included in this chapter give us insights into some of the strategies and the thoughts that people have employed in order to survive in their isolated circumstances. The first account comes from a man with Down syndrome. His name is Mark and he frequently speaks about the way that other people perceive him. Because his set of circumstances (Down syndrome) creates very definite, unmistakable physical characteristics and traits, it is difficult NOT to make judgments and assumptions. He is very clear about the pain that those perceptions hold for him.

Freed

I had asked Mark to discuss his feelings about the past years. As with most facilitated exchanges, there is a need to stop the typing or writing from time to time to clear up word usage, check on the intent of the phrases, make sure the facilitator understands what is being expressed, etc. Anyway, here is my question and his response.

Facilitator."What was your thinking in the years before anyone knew who you really were? How did you cope?"

Mark: "got rewarded. got crazy. retarded feared. just heresy that your greater thinking hurt. just heresy that your goofy kind of thoughts got rewarded. got deadened. not grew. great reward not. just hoping kill kill, get rhid of"

Facilitator. "Get rid of what?"

Mark: "the problem. get rhid of the problem. Retarded hurt."

Facilitator. "Please say more. I want to understand exactly what you mean by 'retarded hurt.'"

Mark: "word."

Facilitator. "What word?"

Mark: "retarded word hurt. just you think about [it]. felt girded then. freed from retarded now."

Facilitator.- "Freed means?"

Mark: "let loose. flying. great."

Mark is not one to willingly spend time correcting or editing his communication. So, at this point I summarized my impression of what he had typed. It was as you read it above. He listened as I went over the words. "Now, " I asked, "did I get it right? Just tell me yes or no " (he often corrects me!). Mark smiled and looked off into the distance, turning the ideas over in his mind. Then he looked back at me, reached for my hand for support (we are typing with support at the elbow at this point) and with conviction typed simply: "Verified thoughts."

In the next account, a parent recalls the process of living through this "survival" period with her son. While Mark spends a great deal of time thinking backward over time and tries to come to terms with all the frustration and pain, Ryan, the youngster in this story, has a comparatively brief history as he is only in fifth grade. Still, it is apparent, how powerful are the forces that can shape our lives and how devastating the perceptions of our fellow beings can be.

Back to the Future

I've given this letter much thought and now that I sit down to write it, I am not sure how to begin.

My son, Ryan, has always been a bright, tender, wonderful treasure to his father and me. He readily won the hearts of family and many friends. Ryan received much support. Everything he did or said we responded to with applause and praise that led to very, very high self-esteem.

I was always sure Ryan would be "high functioning"; I could see it in his eyes and the way he responded to all of us. Ryan would repeat a task over and over again until he did it once correctly to near perfection. But you couldn't ask him to show you again. Ryan seemed to be saying, "I've done it ... you've seen it ... let's move on." Ryan knew his name, age, body parts, their location, and where Mommy was, and would show (others) such skills once per person. This did not go over well when he was being tested. He especially hated those "one-inch blocks."

My husband, Mark, and I were OK with this, although it was frustrating when we wanted to show the world that, "YES," Ryan was doing well. We continued to believe he was near normal in his development.

When Ryan began school, things started to change. People continued to tell us Ryan was slow but "above" profound retardation. We continued to disregard these opinions ... they didn't fit our ideas of our son. But Ryan's self-esteem started to crumble. He began acquiring undesirable habits like grinding his teeth, sucking his tongue, twisting his hair, and most concerning, his behavior became unpredictably violent with temper outbursts, hurting family members for no apparent reason. He would throw things and knock laundry baskets over. He would be literally bouncing off the walls after coming home from school. All of this change happened very gradually.

I sadly remember a day in 1992 when I received a home visit from the school psychologist. He told me I needed to accept where Ryan was intellectually. He then wrote "Retardation" in capital letters and proceeded to create a graph showing several levels of retardation. Then he placed Ryan's name just above the quarter of the graph that indicated the lowest functioning people according to this scale. After that visit I first felt that maybe they were right. Maybe I was in "denial." I was devastated.

Not long after this visit, I received a request from Ryan's teacher to come in for a conference. When I got there, she shared with me what she had been exploring with Ryan. Other students in the class had been successful with a process called facilitation and she had introduced it to Ryan to see how he would respond. He was using facilitation to complete second-grade academic assignments.

Ryan proceeded to show both his father and me his stuff. I have never felt such joy! I could see the light come back in his eyes. He was finally opened. I always knew he was intelligent; we just needed the right key. A flood of information and feelings from Ryan followed.

Facilitation has been a modern-day miracle for our whole family. Ryan's behavior has improved every day. His temper is well under control ... HIS self control. I am able to look back on particular incidents and they make complete sense. Ryan was frustrated; he was having to trace his name, date, and lunch choice over and over again, when he was capable of so much more. I can't imagine how he put up with all of us. Now that I look back on it he handled it very well!

To me, Ryan, and our whole family, being able to communicate has allowed us to know that we were right about this child. It means that all the tests he endured were literally pointless. It means that Ryan and I had the bond I thought we had. It means that Ryan DID understand all those books I read to him. It means he DID know what I said to him when we rocked to sleep at night.

Facilitation has helped my other children see that their brother is indeed their OLDER brother. We've all made the jump in our conversational levels with him.

Facilitation has allowed Ryan to now be doing very well in fifth-grade science, social studies, and reading. We are still trying to see at what level Ryan's math ability lies. We have homework! And I can hear the doubters' questions already. Just so the whole world knows ... he started taking his tests independently ... no facilitation ... he doesn't always get 100s, but he gets good grades. They are grades that any of my children would be proud to receive!

As you can imagine, being successful in school has given Ryan back his pride and self esteem ... he is soaring. His speech is becoming clearer. This past December, Ryan was invited to his first-ever birthday party. He was invited to play at a friend's house and I have that friend over to "hang out." The quality of Ryan's life has improved greatly!

He has been able to express very profound thoughts that have touched us so deeply. He is going to receive his First Holy Communion this May and I am confident that he has full understanding of the meaning of his religion. I can still see Ryan sitting under the oak tree in the back yard reading the Bible. At the time I thought he was "looking" at the Bible. Now I realize it was Ryan's prayers that have been answered.

Once again, I am confident that "YES!," Ryan will do well.

It is not a new observation that the younger people are, the more they seem able to adapt to pressures and stress that are imposed on them by the daily grind. Even though Ryan had started to develop some serious "behaviors" in the face of his difficulties, once relief was offered he quickly bounced back. However, he was a 10-year-old. It's not so easy to adjust as you become older (and who among us would deny that?). The baggage accumulates from year to year and even when solutions are at hand, adults (all of us) struggle with our past. How people deal with their past is unique to each of us. Individuals who are using facilitation employ different methods to ensure that they feel safe in the face of their internal difficulties as well as the external issues of perceptions and expectations of others. In the two stories that follow, one person "keeps safe " by physically distancing herself and another "protects " by emotional distancing.

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!

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Maybe Someday

Our son Mark, 26, is labeled as a person with Down syndrome and assessed to be in the trainable range of mental retardation. He is also nonverbal and has been his entire life. Through the years we have always felt that somewhere there was a "key" to open Mark's abilities since he couldn't express himself. When you looked into his eyes you knew there was a reasonable intellect in there. Just trapped. So we held out hope that "maybe someday" the key would be found and Mark could express himself and overcome the limitations of the labels that have been placed on him.

That day did happen! January 26, 1993, Mark was introduced to facilitation and that key opened Mark's ability to communicate. And communicate he did, even on that first day. It was amazing then and continues to be as we learn simple and complex things about our son that we never knew. "I like yellow ... I hate brown," "You're too much in control, mom!," "I need to have some friends."

There has been much joy with this experience but also a lot of pain as Mark expresses his frustrations with the past 24 years. We realize that even though he can communicate very well using facilitation, not everyone believes in him or his abilities. He is very sensitive to people's attitudes toward him and refuses to type with those who are skeptical. This does not help him prove his abilities but he says "They're not worth my time."

There are other difficulties involved with his ability to communicate now, but we are so happy that the key was found that it helps us tolerate the rough patches. At least Mark now has the opportunity and means to express himself and the worth of that has no price. Often he chooses not to "talk" as a means of controlling his life and the people's lives around him. That makes it hard but it is understandable. If he chooses not to "talk" it is his choice, not his disability of being nonverbal that prevents communication. Mark has much to learn about interactions with people now and needless to say much catching up in emotional development. We sometimes feel like he is stuck in the teenage years with social skills yet living the life of an adult in all other respects. We are working on those areas daily and are confident that in another year or maybe two, Mark will be communicating independently and be emotionally mature enough to accept his responsibility to communicate with everyone.

While adults can be maddeningly circumspect in addressing the difficult issues in their lives, children remain refreshingly direct (if at times overbearing!). little Patrick actually advocated for himself when he was confronted with an unacceptable set of circumstances. His behavior became unmanageable at school. It was a very strong, clear, and unmistakable message. However, had there been no avenue for communication, his behavior might have simply been interpreted as noncompliance or willfulness and responded to accordingly. Happily, in this case, his ability to type words and his behavioral messages complemented one another and led to very positive changes in Patrick's life and circumstances.

Facilitating Inclusion

"This is too easy!" "I'm bored." "I don't belong here!" "I need to be in a regular class in my own school."

These are the facilitated words of our son Patrick in the spring of his kindergarten year in a segregated special education class outside our district. The following fall, after paying attention to what his words and his behavior were saying, we managed to convince the home school to accept him in full-time regular first grade. He was right- he didn't belong in "special ed." Just ask his first-grade teacher. She told me at the end of the year that inclusion is what Patrick needed. How good that was to hear!

Lest you think Patrick is an easy child, he isn't. He has autism. He has poor social and self-help skills. Fine motor skills are very weak. Impulsiveness runs high. Speech is coming ... much faster since [placement in a] regular education [class- room]. Aggression can sometimes occur. Patrick had a full-time aide, a "quiet room" (a converted storage area) to get away from the sensory overload from time to time, occupational therapy every other week, and a very patient teacher.

Patrick did it, he succeeded in first grade! I was told it went better than expected. He was happy. He did the school work by being facilitated. He was part of the mainstream and he improved so much!

Yes, we had rough spots. At times his behavior made us brainstorm for ways to change it. But all in all, it was a success. He talks so much more now. Facilitation is needed less. Behaviors improved a lot. Attention span improved and he is less impulsive. Second grade here we come!

Making the best of your circumstances appears to be an area where facilitated speakers excel! The strategies they employ are as varied as their personalities. In the last story of this section, Chris actually " creates " a disability to distract others from what he fears most.

Memorable Christmas.- A Letter to our Family and Friends

December 18, 1993

Christmas last year was a lot different than any I will ever experience again. A year ago, and for the last 17 as well, I thought I knew my son who had been diagnosed as profoundly hearing impaired and retarded. He was also viewed by one and all as a very "stubborn" person.

Christmas 1993 brings a rebirth of sorts. In February 1993, we were blessed with the awesome discovery of Chris's ability to communicate. He had been introduced to facilitation as a means for him to interact with the rest of the world. We are now getting to know the real Chris Wise, the person who has been such a mystery to all who have known him.

You could say that he is self-taught, having learned all that he knows by observation and reading. Yes, he has been reading since the time when all kids usually learn to read. We are now experiencing his personal success by communicating with him at an adult level through facilitation. Chris will be very quick to tell you he is smart, not retarded. In his own words, "I want other people to know I am not retarded or deaf. I am very wise and understand." Chris is defying every definition that was ever associated with him and other folks who use facilitation. Chris's autistic tendencies had blocked him from connecting with our world on OUR terms. Now we know our son from a different perspective and continue to be amazed at the profound understanding of life that he possesses.

This has not been easy ... not at all. In fact, the emotional unravelings have been most overwhelming at times for both him and me. We continue to "sort through" 18 years of emotions as they surface.

The benefits are uncountable! He now tells us when he is upset, sick, happy, and he can make life choices . . . a birthday or Christmas present for instance. Take a guess as to how fast his Dad and I got to the Main Street Bike Shop to order a new bike to HIS specifications. Eighteen years was a long time to wait for such a simple joy, but to have finally experienced it makes the past seem but a moment.

Have I mentioned that Chris has normal hearing???!!! What courage it took for him to reveal that he has always been able to hear and comprehend. He indicated to us that he "made a conscious decision" to pretend he was deaf when he realized he didn't have the ability to speak. He felt he would be more openly accepted. We rejoice in this knowledge and now enjoy the benefits of sharing ... with detail ... our feelings, actions, and knowledge of events.

One of my greatest challenges has been Chris's behavior. It has embarrassed, humbled, puzzled, and frustrated those around him for 17 years. I'm thrilled to say today that even though those behaviors have not all disappeared, I have a greater understanding than ever before, and that is true assurance that there's always hope! We can now manage those behaviors together in a much improved fashion because we have the means to discuss good decisions, bad decisions, choices, and ramifications. Through facilitation, he has expressed 17 years of pent-up emotion that I never knew he comprehended: apprehension in changing classes, fear of parents' deaths, dislike of clutter, and bitterness in being labeled retarded. These emotions, that would have at one time sent him into a series of obnoxious behaviors, can now be managed much better with a "let's talk about it." No, the behaviors have not completely disappeared, but relief is here, right at Chris's fingertips!

Chris continues to struggle in facilitating with me at times. He says that I'm "hyper." Does he have me pegged or what? In a recent discussion about this matter, I shared Grandmom Overly's thoughts that just as I had to accept him and his inability to speak (and I have), he must also accept me as I am. This was his reply:

"You are you, and I am me, and as you cannot change who you are, I cannot talk. But we need to live together and help each other get along in life the best we can. I love you."

I think he's said it all! What appropriate words as we look ahead, beyond our Christmas celebrations. May God bless you all in the coming year, as He has blessed us.