Theme
12:56am October 4, 2014
Anonymous asked: I've noticed in your writing you mention issues with communicating, and that some nonverbal people can struggle with picturecards and soundboards. What are alternate methods of communicating? Are sign language and musical cues valid methods, in your experience?

Just about anything can be communication.  There can even be inadvertent communication:  Children who smile when they are happy aren’t trying to tell you they’re happy, they are just doing what their body says to do when they’re happy.

I would strongly recommend a copy of Dave Hingsburger's First Contact: Charting Inner Space: Thoughts about establishing contact with people with significant developmental disabilities.  It’s short, and simply written, but densely packed with useful information about understanding the communication of people he describes as “a linguistic minority of one”.  And it’s usually pretty cheap.  I got mine for $5 (USD) at a developmental disability conference.

I would also recommend Ruth Sienkiewicz-Mercer’s book I Raise My Eyes To Say Yes, as an example of how one woman who was consigned to the “mat wards” Hingsburger describes, coped with the situation, when the only thing keeping her from communicating was that her parents’ note saying that she raised her eyes to indicate “yes” was lost in the shuffle when she was admitted and diagnosed with a profound intellectual disability.  Her stories of how she found ways to communicate with other inmates despite enormous communication barriers, resonate with me so much, and the whole thing is a really important read.  (And yes, she wrote the entire thing using that one eye signal.)

You basically have to get really creative in both communicating with and understanding each person’s communication as an individual.  And never make assumptions about what they do and don’t know.  I see even Hingsburger making assumptions from time to time of “they probably don’t know what you’re saying, but…” and you can’t make that assumption either.  When someone is diagnosed with a severe or profound intellectual disability, they’re at the point where communication is so impaired that it would be very hard to ascertain what they do and don’t know.  I know people who benefited from a sudden assumption that they were competent.  One such story is here (and I know the woman involved, she even shows up in one of my poems, wonderful woman, she has mild Rett’s and was diagnosed with a severe intellectual disability and autism growing up until she had a child with more severe “classic” Rett’s and was tested for the gene):

How To Teach… It Really Isn’t That Difficult!