Saturday, August 21, 2010

Facilitated Communication - Understanding the FC Dilemma

At start, I want to emphasize that mine is just one experience, which may or may not overlap others'. The psychological especially, is unique to each of us, but seeing my thought process may enlighten some to possibilities previously unconsidered.

I started facilitating under duress. FC is not something I would have volunteered for. I think it is an important point. FC will not be openly received by all. Sometimes an answer is not obvious at first sight or the problem is seen from a different perspective that escape other's reason. My perspective was conceived of rational thought as applied to interpreting false sensory input. As autists our data base differs from neurotypicals, even too other autists. Behavior that looks nonsensical may be perfectly reasonable when seen in context of another's data base reality.

I had no sensory awareness of my physical form. My identity was tied to thought. I believed expressing my thought would result in a lessening of self; the physical equivalent of cutting off a limb or draining off life's energy flow. When forced to FC I was so angry I shared the thought, telling Mom "Go to Hell". An Epiphany followed from the experience - I was still me. Sometimes it pays to have something stronger than the autism to grapple with. For me, that is my Mom. She is an irresistible force.

Mom just asked me if I know "What happens when an irresistible force meets an immovable object?" The answer is transformation. I have engaged in a lot of transformation these past few years, both forced and voluntary. Forced is just that. It may be necessary, but it is forced nonetheless. And forced breeds anger and animosity. It comes at cost and leaves its scars. Understanding this is the best deterrent to useless force. I understand sometimes it is the only way, but most times it is not.

I learned to type using spelling words not shared thought. Sometimes a slight adjustment in approach reaps huge rewards, both mentally and physically. Voluntary cooperation may be harder won, but it is worth the added time and effort to develop it. ABA is the biggest lie that way. Because they pretend work is play and rewarded, that work is cooperation. It is not. We sit and respond like puppets to directions of the puppet master. We are not free willed participants. We are not free to get up and walk away, or say "No,this is a dumb activity". It is a false perception they convey in suggesting it is a cooperative process and child cooperation is the outcome. We are slaves. You can put whatever picture face you want on us, but we are slaves in it and we know it.

FC was the first opportunity I had to say "no" and mean it, to express my rage at the injustices done me. I tell you this because the parent expecting to hear "I love you" may not. My first words to Mary Lapos were "I am smart" and "do you understand our love of God?". That is the importance of true communication. It is the communicator's choice of what is important to them. We need our facilitators to blank out, like a clean sheet of paper absent expectation of what scrawl will unfold on it. Relaxing is key; to give up your control to us as conductor in the music of words.

To fight my fears, my body, and your thoughts is too much all at once for me. Each presents as its own obstacle. The value of the spelling words for me was that it isolated the battle to my body alone at first. Subtle communications in answer to "Do you need a break?" or "Is there something you need?" slipped in after. It was need based communication, not emotion shared based communication that was most successful with me at first. It was a palatable start for someone who feared sharing his thoughts and did not understand or have control of his emotions.

For some, FC is freeing. For others it is tremendous work. For still others it breeds tremendous responsibility in trusting in God's plan and men's open hearts. I trust God's plan, but fear men's hearts. It is partly why I started with this goal rather than another.

You approach us like trust is an expected thing, but it is not. Trusting another's movement, motive and memory are each a separate issue we face outside our own. Sometimes you are our first hurdle. Recognizing it, acknowledging it, sets the tone for truthful exchange. Whether you do so by thought or word, it makes no difference. We hear you in your thoughts and actions. Keep them compatible. Your words and actions combined are the greatest reflection of truth. Truth that speaks of honest interest to help yields willingness to venture outside our comfort. It is the first step in FC, stepping beyond our comfort.

Friday, August 20, 2010

Temporarily Untitled

Telling about a life takes time. I hope my readers have the patience and interest in it.

I want to start with facilitated communication because it is the conduit that enabled me to not just share my thoughts, but find them. You don't need to formulate thought from emotion absent the need to share it. So much of my beginning communication is raging because it is what I felt at the time, anger at the injustice you call therapy, anger at myself for my inadequacies, anger at my parents for their lack of understanding and sympathy. Like a human experiment I was in ABA directed therapy, torture in my words. Absent an understanding of their directions I fought and sabatoged their efforts to control me. My lack of control was my control.

Facilitated Communication is a form of control for the disabled. It serves to remind our caretakers and ourselves of our humanity. Seeing myself as a rage is what helped me change directon. Seeing my Mom cry at my words showed me my impact. Seeing Bill Stillman gave me another path of opportunity. He showed me a better way. He took his pain and turned it into something positive for other's benefit. Bill saved my life.

But, seeing the end goal and getting there are two different things. For me, Facilitated Communication (FC) is the means to Bill's end. FC needs to be developed as a technical skill and I can help with that in defining my path to independent typing. I have overcome so many hurdles both psychological and physical. I still have a few more too, even at my stage of independence. The psychological are best approached as ignorance and epiphany, realizations on the part of the autist born of positive experience. The physical are best addressed by sensory aware occupational therapists.

Tina,I would love your input and comment additions for training suggestions. To those of you who FC, your individual experiences are invaluable. My thought is that someone could take and consolidate the information as a guide later to helping others progress in the process.

I will start to think and compose tomorrow. Guest entries are most welcome, less work for me (smiles).


Thursday, August 12, 2010

Silence Speaks

I have been on vacation from work. It is only fitting after 20 years of therapy that I finally had a break. Mom says it is time to rejoin the effort on behalf of the silent.

Silence is akin to death as communication goes. To be without a voice is to objectify oneself. We lose our humanity, become pieces of furniture to be moved about, dolls to be played with, puppets to our caretakers. The soul is trapped like life in a seed, waiting for its nutrients and release. Are you the sun and water and earth to your child or desert sand? Putting humanity first is the first priority in treatment.

Silence is not an excuse to forget our humanity. Even silence speaks. It lends direction to the breeze. Can you hear it? No. But you can feel it. So it is with us. Like the flower, we lean into the light. Our actions point the way. Start by listening through all your senses and you will hear us speak, even in our silence.