Wednesday, December 21, 2011

What to do in the Meantime

Suppose you have become interested in Facilitated Communication, and are considering trying it with someone you know and care about. You've read a story or two, watched a video, read a book, or maybe even met a person who uses this method to communicate.

You probably find yourself a little skeptical and very unsure of where to start - or even whether to do so. You have probably heard that training is required to become a facilitator and that may require a trip to Syracuse, NY or Whittier, CA - something that seems entirely out of the question. It is not likely anyone close by is offering such training, and even if they are it might be several months in the future. What to do in the meantime?

Let me suggest the following, keeping in mind that not all of these suggestions may be feasible in your particular situation. Feel free to adapt the ideas to fit your circumstances.

(1) Presume competence. This is not an original idea of mine. It is the unofficial motto of almost all the autism conferences I have attended over the past ten years or more. Dismiss all entrenched ideas that people with autism are cognitively impaired (mentally retarded). I give you permission to look for glimmers of intelligence and then believe them when you see them. Regardless of any professional evaluations or test scores, start to see the person as capable of learning. Based on my many years of experience, I can assure you that all of these people are learning all the time - with or without the assistance and support of teachers. Borrowing yet another common phrase, this is always the "least dangerous assumption" when we meet a new person who is unable to speak, or limited in their abilities to function or communicate.

(2) Watch carefully how you speak and what you say. This follows naturally from the presumption of competence. It follows, but that doesn't mean it happens automatically. This will require some self-reflection and the changing of some long-standing habits. It happens on all levels; we might as well admit it. We don't always remember to speak at an age-appropriate level when we are talking to folks with "differences." (Perfect example: I typed "disabilities" and then decided there was a much better word to use). I have been working on this personally for about 20 years now, and still need to remind myself. We don't always remember to include a non-speaking person in the conversation. We talk about them in their presence as if they were invisible. We talk to caregivers or parents rather than to the persons themselves. And what we have to say is not always pleasant for them to hear.

(3) Look for ways to let the person know you believe in them and want to know more about what they are thinking. Say those words, or anything like those words that feels comfortable to you and fits the situation. Try talking aloud about what you have read or seen about the amazing people who are typing to communicate and then add that it would be wonderful to know what the person you care about might have to say if/when they learn to type. "WOW! Sue Rubin's story is amazing. I can't wait to hear all YOU have to say!" "I just know you are full of great ideas, and probably lots of questions too. Some day we'll find a way to get them all out." Watching one of the videos available or reading aloud from one of the books - the ones that tell of the many success stories of those who have learned to type - can be very effective, in so many ways! Do this over and over again, if possible.

(4) Never miss a chance to give the person meaningful choices. We find that so many of these young people have had people making choices for them most of their lives, so that even teens and adults - when they start to communicate - aren't sure what THEY really like. This might apply to food preferences, what clothes to wear, learning or leisure activities, what color they want their room painted, or just about any aspect of their lives. You don't need to wait for them to start typing; use whatever means of interaction is already in place to give choices frequently throughout the course of an ordinary day. Involve them in the decision-making process at every possible opportunity.

(5) If it's not already established, work on a reliable way for the person to give a yes/no answer to questions. A nod, or thumbs up, pointing to a smiley face, or maybe giving a smile, can all mean "yes." The trick is to be sure the answer is reliable and meaningful. Lots of these folks seem to be programmed to please the adults around them (yes, even those whose actions might seem totally meant to drive us to frustration much of the time!). They really DO want to please us, and they tend to give answers they think we want to hear. We want to undo that, and help them get in touch with their own feelings and preferences. This might seem overly simple and for some who think their kids are already controlling the lives of all family members by their behavior, it might seem totally unnecessary as a point of discussion. Again, my experience is that most kids need our help to learn not only how to ask for what they need, but more basically how to identify what they need or want.

(6) Help other people who are significant in the person's life to make these same changes. If you are lucky, others will learn from your example. Or maybe you will have to do some teaching, gently prodding them and moving them along on the continuum toward complete acceptance of this person as someone who is to be seen as capable, competent, compassionate - and worthy of our respect.

(7) And, if you dare, try holding their hand firmly, pull back - also firmly, at first - and just see if that helps them point or spell to answer a basic question in a meaningful way.

The advice is free, so I can offer a money-back guarantee that you will see results if you are able to make the changes in (1) through (6) above. Number 7 is a bonus for those who feel ready.

Have fun. Stay positive. Let me know how I can help!

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