Friday, January 11, 2013

Why I Do What I Do

It all started with an innocent question from one of the grandkids.  I think I have written before that they do seem to ask a LOT of questions. (Link here) And of course I love it.  The teacher in me is always eager to deliver just as much information and wisdom as I can whenever the opportunity presents itself.  Over the years I have had to humbly accept that these opportunities are all too limited.  They may be asking lots of questions, but they don't really stay tuned for much of the answer.  It pays to be quick and very concise!

So, the question was something like this: "Grandma, why do you do what you do?"  And as I remember the situation (details could be wrong - the memory isn't quite what it used to be!), the questioner was somewhat disappointed that I wasn't going to be available for something she had in mind for me to do.  I had another commitment, and it had something to do with that part of my life where I work with kids and young adults who type to communicate.

My short answer was that I really love what I do and get so much out of the time I spend with these very special young people - just as I love and enjoy my time with all of my grandchildren.  And, oh how I could go on and on talking about how important this particular experience has been for me - but she had already moved on and her next question was totally unrelated to the topic at hand.

It got me thinking.  I sort of stumbled into special education as my college major - there was a new program starting at the university, scholarship money was available, and I was struggling with both issues - what to declare as a major and how to pay for the rest of my education.  It was a perfect fit, but I had no idea of that at the time.  I was very, very lucky!   And then, once in the field, it was again fortuitous chance that led to the learning experiences that forever changed my life both personally and professionally.

I was a teacher for about 30 years, and loved it.  Well, not every single minute or every single day, but I can honestly say it was never the kids who caused me to wish I could stay in bed some days - it was always some other part of the job (those long meetings, never-ending reports, clashes with administrators who just didn't get it!).  And then I retired.  Still healthy, very happily married, kids all grown, and a growing number of wonderful grandchildren just waiting to be spoiled.  It's a great life!

But something was missing.  I had worked with some very special children who had taught me so much, and along the way many of them had used their newfound means of communication to ask me to tell the world how smart they are.  They had used my hand to support their typing and had spelled out over and over again, NEVER STOP TRYING TO GET MORE PEOPLE TO BELIEVE.

So, I am back in business (literally, since forming my own LLC a little over a year ago).  I have access to some office space where I now see "clients" for about an hour at a time, maybe once a week or twice a month, depending on their family's schedule and mine.  When not at the office, I am here at my computer, following stories of others who type to communicate and trying to find more ways to get the word out that these are some amazing individuals who deserve our respect and attention.

"Do they pay you for what you do?"  Ah, yes, she is well aware of how our capitalistic system works, and she LOVES having money of her own to spend. So, I answered honestly that I do get paid for some of what I do, but not all.  I have one young man I see on a regular basis just because I want to be a part of his life - as a friend, rather than a paid support person.  I serve on two different autism-related boards, because I feel I have something to offer, and certainly want to do what I can to support their great efforts.  I offer my services to train new facilitators at a nominal cost because I see how great the need is for more people who can provide this particular service.  I am honored to volunteer in a fascinating yoga program for individuals on the autism spectrum. 

And then, let me use this forum to try to explain in greater detail just WHY this all means so much to me.  I have been privileged to be part of a sea-change in the way we view autism.  The individuals with whom I now work (and have worked with in the past) could all too easily have been placed in institutions and removed from society for their entire lives.  I am convinced if that had happened they would indeed fit the picture we used to have of just how devastating the condition of autism was.  But they were lucky to be born in more enlightened times, to parents who wanted what was best for their children and were willing to fight for appropriate education and other services.  These particular parents can also look back to those who went before them and faced down the stigma of the "refrigerator mother" theory, and everyone who fought to close down the institutions.

A very few of us professionals were lucky in the early 1990's to learn about Facilitated Communication, and then had to be strong enough to stick with it through all the skepticism and controversy that soon followed.  There weren't many of us then, and there are even fewer now.

But there ARE more people with autism, and they all have stories to tell.  Because I do what I do, I can be part of their stories.  I work mostly with individuals who are completely nonverbal.  A few can speak, but are unable to express what they are thinking or maintain a conversation.  Thanks to FC, they are able to tell their parents what they want/don't want for Christmas, or what they like/don't like to eat, wear, do, etc.  The older ones are learning how to take charge of their own team meetings and direct their own lives.  Several of the young people I work with have expressed a desire to attend conferences and give presentations so they can tell people what it's like to have autism, be unable to speak, and be considered cognitively disabled when in fact you are really highly intelligent.  They told us that's what they wanted to do, and some of them are actually doing it.  We have formed a social group that meets monthly so they can get to know others who type to communicate, share their dreams and frustrations, and support one another in whatever difficulties they might be facing. These young people have come such a long way, and have taught all of us so much.  How many more are there just like them who might benefit from having access to a letter board, with someone supporting their wrist so they could let us know the depth of thought and compassion hidden inside?

How could I ever turn away from this part of my life?