Monday, July 29, 2013

Independence - It's a big deal!

Those of us who have been involved with Facilitated Communication since the early days are all too aware of the importance of independence in communication.  Sadly, our silent typing friends find that their words are often dismissed if they are in need of total physical support in order to get their thoughts out.  Amazingly, sometimes the skepticism is so great that even those who learn to type with no one touching them are subject to doubts.  Yes, they may need a trusted person close by, but how is it even remotely possible that the "support" person is guiding their communication with no physical touch? (And if you think it IS possible, well, I think that certainly warrants further investigation.  Is this mental telepathy we are talking about?  How exciting would that be?!)

So, many of our friends who begin to communicate with full support soon learn that independence is the way to go.  Some work diligently at it, while others express their frustration that they have deep thoughts and want or need a firm, steady grip on their hand or wrist to help them get to what they are really thinking.  It's hard work, and requires a huge amount of determination and practice in any case.  Some FC users, and often their facilitators as well, come to the ultimate conclusion that independence - at least in typing - is vastly overrated.  It's so much more satisfying to provide whatever support may be needed so that conversation and thoughts can flow easily.

But that's not really what I set out to discuss today.  I have in mind a different sort of independence that I think might be even more important to think about.  But it definitely IS related to all that is opened up once a person finds their voice through FC, or any similar method.

In those glory days of old, I was working primarily with young children, some as young as four years of age.  We'd start with typing their own name, then names of family members, classmates, school staff, etc.  Even the youngest could spell color words, or the names of familiar animals.  Most knew the days of the week, or words related to the seasons and weather.

And then, with practice, we'd gradually move up the ladder of complexity to more open-ended conversation.  If family members were present, and I would ask if there was something they wanted to say to moms, dads or siblings, one after the other typed I LOVE YOU or TELL THEM I LOVE THEM.  And the tears flowed freely.

Another common response when these early, young typers were asked if they had anything they wanted people to know was TELL THEM WE ARE SMART or some version of I AM NOT RETARDED.   Over and over again, this message was pounded out on letter boards or computer keyboards, so often that I am now expecting it every single time I encounter a person of any age who is new to communicating.  And I then apologize for myself and anyone else in their lives who may have underestimated their intelligence.  It's always a humbling experience, and their anger - if it's expressed - is well-founded.

I am mostly working now with young adults, and their messages are similar in some ways, but surprising in others - at least to me.  They too want to express love for family members and other care-givers, and they want everyone around them to recognize and respect their intelligence.  No surprise there.  What has caught me off-guard is how often an FC user has typed, with my physical support, that they have a dream of living on their own some day.

Please keep in mind that most of the people who use FC with me do not speak at all, and those who do have a very limited repertoire of spoken words, which may or may not serve a functional purpose.  In addition, they are all dealing with a variety of other limitations, mostly related to neuromuscular disfunction.  Their sensory systems are out of whack, they are "wired" differently, and they type about the ongoing struggle of living in bodies that don't do what they would like them to do.  They tend to need help and support in every aspect of their lives.

But, just like their siblings and others their age, they want to live as independently as possible.  As I hold their hand, wrist or forearm to allow their thoughts to flow, I put on my counseling hat and try to reassure them that none of us lives truly on our own.  We all have friends or family who help us in various ways.  We all need various kinds of help and support throughout our lives.

And, then I try to help family members understand that this is not rejection, not a lack of appreciation for all they have done for their child, nor for all they continue to provide.  But it is a normal state of affairs; and needs to be respected for what it is.

Moving out of the family home may not be an option right now, but it is always possible to focus on activities that could be done more independently - daily dressing or grooming tasks, household chores, getting around the neighborhood, taking public transportation, operating appliances, shopping, cooking, etc.  Even a person who appears to be a committed "couch potato" may be wishing inside that someone would push them to do more, or challenge them to take charge of their lives in new and different ways.

If you are a parent, sibling, caregiver, or just a person who cares, think about how you might help a nonverbal person raise their level of independence.   Look for ways to challenge them to do more on their own, providing needed support and encouragement along the way.  Even if the person in your life is unable to express this desire themselves, I think it is safe to assume they too want as much independence in their lives as possible.  In fact, I would consider this one of those "least dangerous assumptions."

The opposite - learned helplessness - is indeed dangerous, leading to stagnation, boredom, low self-esteem, and possibly a miserable existence.  We can do better!

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