Preaching to the Choir - or Maybe an Empty Room

I haven't got this figured out just yet.  It's been over 22 years, and I still don't know how to best share the good news that people who don't speak are often in fact full of knowledge, ideas, creativity, and feelings just like the rest of us.

In the early days, it was easy.  We invited anyone who might be interested to visit our classrooms and see for themselves what was happening.  Sure, there were skeptics.  It was a revolutionary change in our thinking and perfectly natural that some were more reluctant than others to see these kids in a completely new light.  For the most part, it was the kids themselves who helped bring about the shift in most of our visitors.  If one of our young students would allow a new person to take their hand, and then point to letters on a letterboard, what they had to say almost always brought about astonishment, excitement, and cries such as "This changes everything!"

But of course it didn't really change everything.  These same kids still needed lots of help and support in virtually all aspects of daily living.  They still got frustrated and acted out, and they still did lots of things that parents and teachers wished they wouldn't do.  As far as communication goes, they still couldn't speak in a way that matched what they typed, and they could only type when they were given physical support from a trusted facilitator.

Personally, I was ready to shout from the rooftops - it really was THAT exciting!  My whole professional career was turned upside down, and my whole life was being affected.  But it didn't last long.  All too soon, the controversy took over and many supporters of Facilitated Communication (FC) lost heart, became discouraged and/or afraid, and called it quits.  The rest of us became quiet, talking about our experiences only among each other or with family and friends who had remained supportive - we were comfortable only preaching to the choir.  I lost my teaching job over the issue, but I used that down time to write a book about my experiences.  With the book published but sales  almost nonexistent, I started giving the book away to anyone who showed an interest.  Not many did.  I wondered if anyone was actually reading my book!

Then, after many years of silence, some stories began to emerge.  Thanks to brave souls like Sue Rubin, Sharisa Kochmeister, Jamie Burke, Payton Goddard, Lucy Blackman, Larry Bissonnette, Tracy Thresher and others, videos were produced, books were written  - and word got out ever so slowly to the general public that something really impressive was going on.

So, even more slowly, I ventured back into the water.  I submitted proposals to autism conference program committees, I offered free presentations at local libraries, I toyed with ideas for training facilitators, just in case interest would return.  Results have been mixed, at best.

A recent example:  After a couple years of talking about it and making plans, I was invited to give a presentation at a locale just over four hours away (driving time).  My husband drove along with me, and as we pulled into the parking lot of the hotel, we noticed immediately the monstrous sign in front announcing that an "autism speaker" would be there that evening.  Ha!  That would be ME!  We snapped a picture to share with folks back home and went inside to be welcomed by the hotel staff, who graciously welcomed me as the person they were expecting.  The two great women who had made all these arrangements took us out to dinner and we all returned to get ready for the presentation.   A large coffee urn was ready to do, ice water and cookies were available and tables and chairs were set up to accommodate about 70 people.  I hooked up my computer, booted up the PowerPoint slides, and waited.

As the announced starting time approached, it was all too evident I'd be talking to the two organizers, three family members of theirs, my dear hubby, and two surprise guests - childhood friends (with no connection at all to autism) who had read in the local paper that I was going to be speaking in their area.  That was it!  I went through the presentation as planned, struggling somewhat with a scratchy throat and voice (emotional reaction maybe?) and answered most of their questions.  But I had no answer for the last question of the evening.  "So, what can we do to help?"

I have been thinking about this ever since, and I have been thinking about the families I have met over the past 10 years or so with kids who have limited or no spoken language.  Only a few of these families have even asked about FC for their children, and only one has ventured far enough to ask me to evaluate their particular child, their particular situation, to see if typing might help.  In that case, it really DID help, but I can count about 10 other young people who could also benefit - all in very close proximity to where I live and work. 

What is holding everyone back?  Why are people so afraid?  Why don't they want to hear more about this? What can I do to help???????

Taking a Break

If you are a regular follower of this blog, you have no doubt noticed that I have taken frequent breaks from writing.  That doesn't mean I am not thinking about things to say, but it does mean for extended periods of time I simply do not sit down and put my thoughts into writing.  I can then return re-energized and invigorated, full of ideas to share.  So, here I am!

Nothing refreshes quite like taking a break from routine activities.   We all do much better if we can fit breaks in on a fairly regular schedule.  Even an active toddler needs a nap - or at least quiet "down time" throughout their busy, active day.  Not to mention the parents who are trying to keep up with that super-energized youngster!  It is infinitely easier to be patient and loving when you are rested.

It is interesting that for many of our people on the autism spectrum, one of the things they have to learn when entering the work force is how and when to take a break.  For so many of them, this has always been defined for them.  Parents are told to have set routines in the home, and of course schools have regularly scheduled times for recess and lunch.  For others - those who seem unable to follow any regular pattern that is established for them - what they are doing throughout the day looks a lot like a never-ending "break" to those who prefer more structure in their lives.  Once you are an adult (or older teen maybe) and have a real job, you are expected to know how to navigate between work periods and break time.  It isn't always easy to do.

One of the many lessons I learned the hard way is how important it is to help my students recognize when they needed a break, and then find a way to do just that without causing disruption, or even injury.   When students were in my special education classroom, this was seldom an issue.  Our room was filled with a variety of materials that could be  chosen for "free time" activities - and in between all that free time (when I truly believe they were almost always doing something constructive like processing everything they had heard or seen that day, or learning how to self-regulate, for instance) they might be asked to spend a little time with me on something that looked more like school work.  Work time was limited, free time was abundant. 

But of course that's not how typical classrooms operate.  When I accompanied a student to their regular classes, I often missed a warning sign that we'd been there too long, or there were too many stressors in the environment, or too much/too little activity, or whatever.  The result might be an outburst of screaming, or pinching, or hair pulling or throwing things - whatever it might take to get us removed from that setting just as quickly as possible.  I experienced all of this and more, before I realized there must be a better way.

My preferred method of helping students learn about breaks was to give them control over the process.  It worked best to have a printed sign (I NEED A BREAK, for example) that was always readily available for them to touch.  And then it was critical that I respect that request.  For so many of my students, initiating an action - at least an appropriate, socially acceptable action such as pointing to a printed sign - did not come easily.  If they in fact made that effort, they certainly deserved that break. Many had learned to ask to use the bathroom, and that worked too, but it seemed preferable to identify the real need - leaving the situation to find a way to self-regulate and then return.

But I met with resistance from many of the regular classroom teachers and administrators, who didn't like it that I was giving up my authority and letting a student call the shots.  According to just about everyone around me, breaks should be scheduled by me at regular intervals.   It didn't help that in the beginning of this process it seemed as though taking breaks was all we were doing.  But I wanted them to learn the routine, and they needed to trust that I would respect their requests.  Learning a new skill takes lots of practice and repetition.   We NEEDED to take lots of breaks in the beginning!

As for those regularly scheduled intervals, well, the autistic body just does not operate that way.  When a student with autism, or other sensory struggles, begins to feel overwhelmed we are all better off if they can safely and comfortably remove themselves from the situation before losing control.

I have not been able to follow my students into adulthood, but now that I am interacting with a new group of young adults on the spectrum, I can see that their bodies do become more regulated as they age, or maybe they have learned some useful coping skills.  For the most part, they can sit for longer periods of time, are less easily overwhelmed, and with some help from those who provide support, can learn to take breaks on a regular schedule, finding appropriate ways to use that break time so that they can return to their job-related activities.  

But they all - young and old - do need and deserve our help, and our respect, as they learn this process. 

Inspiration from Aaron in Alberta - Guest Blog

An update from Aaron Greenwood, from Alberta, Canada, who wrote to the folks at AutCom when they gathered in Milwaukee, Wisconsin in the fall of 2010.  Aaron has autism and does not speak, but types with his Mom's support using Facilitated Communication.  See Aaron's earlier message

Well I am writing again after many years since my last article.  I have changed since then and now I greatly feel it is time to share more of my opinions of autism.  I remember how I shared how my life began with my family loving me for who I was.  And now as I have grown older most definitely that has remained the same.  I dare say they love me more as our journey becomes truly one that is steadfast.  It has been a journey that has been dearly difficult at times, very stressful. 

Freedom greatly falters never when you have a path to follow.  Yes it greatly each day was a time when my family knew that great dedication was needed. Sadness was certain to be our destiny if we did not stay true to our great mission. Never was it an option for my family to feel that my life was to be a life of beast filled nothingness.  I knew that they would most dearly remain my true believers and supporters.  I knew that my life was meant for more than just sitting silent and not contributing to a world that needed most definitely a certain hope and resilience against those who say nonverbal autistics are not worthy of a place in this world.  Really? It assuredly asks the question really we are not worthy? Each day I have thought of this question and I get angry each time that I think of how much we have to contribute certain I am of that.   

It is a crime to let our minds sadly waste away to a point of no return for some.  And then they ask why are they angry? Why do they scream? Why do they dearly run?  I am seeing more and more of my dear friends fight each day to stay sane.  I am boldly saying friends even though I have not met many of you.  It is a crime to hold so many of us in a life that has no purpose.  A life meant to be rich and fulfilling a life that God sadly sadly does not agree with. He did not mean for us to be sitting idle we were meant yes meant to be engaged individuals meant to live a life of purpose.   

Dearly dearly always know that there is a path meant for each person and we are no different because of our autism. It has always been my most passionate purpose to awaken my body.  I know that for many a body that does not listen to a powerful mind is a dear curse.  It has been my experience that a body that is strengthened by the right foods and supplements is a body that can supremely be a person strong in this world.  A world that needs to know that a person with autism allowed to be active in opinions and beliefs is a person that dearly has a great contribution to make to our society.  Was there ever a point to not giving each of us a chance in this world only because you felt that we could not be of any value?  I know that this is a dear reality for sadly many of us and it would be a true miracle if more families would follow a path that my family is on.  It is a path that is very worthwhile and I know would be a path worthwhile for many more.  It is a path that frees all and awesome a life with freedom is.   

I know that a family with a member that has autism is a family that already has much worried existence.  And I know that these worries are a truly difficult place to be in.  Our family has greatly worried and believe me these worries are stressful.  But I also know that our worries have been dearly relieved by a calmer me. I know that a body strengthened by feelings that are positive and not beast filled is a dear opportunity freeing me each day.  Yes, it is a dearly, dearly certain great work path not without its sad times of course.  But also I know that my family has experienced greater peace and true happiness with my new stronger me.  I know reality is not always felt by many as a gift but more of a curse. And I know that for many families that are struggling this is a cursed existence. Not for all I know.  But for those that are struggling yes listen, autism does not need to be a life of hurt and each day could be one full of possibilities.  And I know it may very well seem daunting but it is possible.   

Never feel like it is both cursed and hopeless.  This is not true.  I am living a life that has known hope and sadness and it is more hopeful now more than ever.  I am each day ready to be an advocate and feeling ready for this awesome autism awesome reality.  I know I am really sad to not know many of you but hope that my letter bridges my dear feelings to yours.  I greatly desire a chance to give hope to more people and each opportunity that I have I am truly thankful for.  I really hope that this letter is the beginning of many opportunities for me to share my awesome life and also give hope to families struggling and certainly answer any questions that anyone might have.  Thank you for reading my letter and God Bless each one of you as you search dearly for your purpose.  

Sincerely your friend in autism,

Aaron Greenwood

Shifting Paradigms

I have written before ( http://grandmacharslessonslearned.blogspot.com/2013/07/independence-its-big-deal.html ) about the importance of independent living for those young adults I see on a regular basis.  But the more I think about it, and the more I learn from these friends who "speak" through their typing rather than their voices, the more I realize we need a major shift in how we provide support.

The people working in the adult sector of the disability field are generally very caring and well-intentioned.  They want to do their job and they want to help their clients.  But, unfortunately and all too often, they are not very well-prepared, nor are they given much in the way of direction or support for what they are doing.

Just yesterday, I spent an hour with each of three of my regular typing friends and all three typed words to this effect (actually I think the words were identical each time):  HELP ME LEARN TO LIVE ON MY OWN.   I am seeing this plea more and more frequently - usually a sign to me that I am not really paying attention or giving them enough indication that I really hear what they are trying to tell me.  And so, I reflect . . .

When young students with autism first entered the school systems back in the 1970's, it was common for a large group of professionals to gather to discuss just how to best provide for their unique educational and social/behavioral needs.   I have written extensively on this blog about all I personally learned  along the way, mostly from the students themselves - and of course their parents and families.  Now it's my turn to learn something about adults with autism, and in particular those who do not speak and still need support for just about everything they do in their lives.

Yes, and that's exactly why this at first might appear puzzling.  They DO need help in so many ways - often in areas of self-care, certainly in getting around the community, finding and maintaining a place to live, handling financial matters, and on and on.  What can they possibly mean when they repeat a desire to live on their own?

How fortunate it is that we now have a way to actually ask them for more information.  I am here to share with you what I am learning in hopes that you might keep all of this in mind and help me find ways to change the way we provide support to these individuals when they enter the various programs that exist to help them be successful and happy in life.

What is it they want?  Well, it really should not come as a surprise that they want something meaningful to do each day.  They like having REAL jobs, they like going places and doing things like others their age.  And yes, in spite of what you might have heard about autism, they want to have friends - again, REAL friends, not just people who are paid to spend time with them.   What might come as a surprise to those who don't really know these folks who type is that they also want to keep learning.   The greatest frustration comes from being treated as someone who doesn't know much, or isn't interested in what is going on in the world around them.  They want everyone to know they are intelligent - often HIGHLY intelligent - and they would like to be treated accordingly.  So, if that day job involves shredding papers or washing dishes or stacking shelves at the library, could we please add an extracurricular activity that is more intellectually challenging?  Could we at least discuss the news of the day, read a paper, visit an interesting web site, have a meaningful discussion?  And if their interests and talents are more in line with being an artist, writing poetry, or preparing a presentation for a conference, can we perhaps find ways to help them pursue that as a career rather than some menial, repetitive task?

They want to do as much for themselves as possible and this differs from the care model that many of our workers are familiar with in nursing homes and other settings.  These young people - and older ones too - need help to become just as independent as possible.  We should not be doing things for them that they might be able to do on their own.  We SHOULD be developing the mind set and the programming that will allow them to continue to progress on the road to independence, in every possible aspect of their life.  Ideally, this is what the school programs have been providing up until graduation, and ideally it should not end at age 18 or 21.

I realize this is a huge paradigm shift for most of us, but I can assure you there are many, many young people in our schools today who will benefit if we can make the shift, and will surely suffer if we do not.  It is worth our time, attention, and energy.