Trying to Get the Feeling

 One of the many myths or misunderstandings about autism that has led us astray for so long is the belief that folks on the autism spectrum don't experience the same emotions as neurotypical (non-autistic) folks - or maybe don't experience them in the same way.  In my early introduction to autism, I remember a journal article about "Joey the Mechanical Boy."  As the title suggests, Joey was described as a boy who saw himself as some sort of robot, absent human feelings or any desire for human interactions.  Similarly, the very term "autism" was said to be derived from "auto" or maybe "alone" - again, leading to or from the assumption that these individuals (they were all kids at that time; no one was giving any thought at all that they might become adults some day.  See how much we had to learn?) don't really have feelings like the rest of us.  They existed in "their own world" and many of them were left there, alone and withdrawn.

 Based on lots of personal experience, plus the spoken, written or typed reports of many, many people on the autism spectrum, I am convinced they not only experience similar emotions, many of them experience these feelings to a significantly greater extent than the rest of the population.  My students always knew when I was having a bad day, when I was tired or worried, sad or upset.  Some would show this by touching me in a tender way, but more often it happened that my "off" mood caused them great distress that was more than they could handle and we encountered what was so often referred to as "behavior problems" ---  unexplained, of course; we had no idea what was setting them off!

 In addition to being easily overwhelmed by taking on the feelings of others, it is common that kids (and adults as well) with autism are unable to identify their own feelings or emotions, and often can't express how they are feeling in any sort of typical fashion.  One of my students from years ago got reprimanded by our principal when he laughed at a highly inappropriate time.  I don't remember just what sad news the principal delivered that day, but laughing was not the response that was expected.  That principal (and just about everyone else in our school setting) had little or no understanding of autism.  I was a little farther along in my education as a teacher, and I KNEW this particular student didn't mean to laugh or be disrespectful; he understood clearly what the sad news meant, but he was overwhelmed and his body was not within his control at that moment.  Instead of crying, he laughed.  I have seen it happen many times since then.

 Recently in a communication session with L, he typed forcefully, "Help me be more normal" - one of his more common opening remarks in our sessions.  I launched into my usual pep talk about loving him just the way he is,  there is no such thing as "normal," adding for good measure that he doesn't need to change, but maybe we can help those around him understand his autism better so that he can fit in more comfortably.

 For the most part, L is a low-key, easy-going sort of guy who doesn't show much in the way of emotions.  If he is having an off day, he might decide to lie on the floor.  If he is upset about something, he might become agitated, make loud sounds of protest or even bite his hand. In his home setting there is a history of breaking things, with some signs of joy when he does this.  But in all of our typing sessions, he has not been able to use any of the typical feeling words to explain what might be going on.  

On this particular occasion, L remained seated and generally on task, and I proceeded with a typical conversation, trying to engage him in something that might be of interest - the weather, an upcoming holiday, a visit with Grandma maybe.  I was so focused on the keyboard and his typing that I failed to notice a trickle of tears flowing down his cheeks, and a look of agony on his face.  

I wiped away the tears and offered my hand for support. When he was ready he typed, "Please just help me be more a man."  L has often begged me to tell everyone about his intelligence, and has complained that too many people still treat him as a baby.  When he asks to be helped to be more "normal" he knows his appearance fools people and they forget all too easily that he is in fact an adult and deserves to be treated that way.  Still not using any of the feeling words I may have suggested, but the tears made his point very clearly.

 And then at our very next session, with several members of his team present and all of us wearing masks as Covid precautions, L started to smile, then burst into infectious laughter - something I have never witnessed in all our years together.  We all joined in the laughter, couldn't resist! - and asked him to explain.  He looked around, making direct eye contact with each of us and still laughing, then typed, "You all look funny!"  From sadness to joy, and able to tell us why.  This is real progress, folks.

Earlier stories about L:     http://grandmacharslessonslearned.blogspot.com/2017/09/ 

                                          http://grandmacharslessonslearned.blogspot.com/2019/

"You talk; I listen"

I think my favorite lessons learned are the ones that bring together more than one aspect of my life.  Here's one example, from our early years of marriage, when the kids were young, and my teacher-husband shared some of the wisdom he had learned on the job.  Instead of directly praising a child for something they have done, it is often more effective to tell another adult about their accomplishment when you know they are within hearing range.  Telling Grandma over the phone that you are so pleased that her grandchild is willing to try a variety of foods, or has learned to ride a bike, or just finished cleaning their room - well, it works magic!   

Working with kids who struggle with just about every task they undertake - the kids with "special needs" - taught me that direct praise might even backfire and cause stress or anxiety that could turn an accomplishment into a disaster.  In my behavior modification training, I learned to say "Good job!" with great enthusiasm and even greater frequency.  All too often, I was caught off-guard with the reaction I got from my students.  Think about it - I was asking them to do some very basic task (usually involving a motor response that took great effort on their part) such as sorting or stacking colored blocks, putting together a simple puzzle,  or handing me the correct picture.    I didn't know it in my early years, but these kids were SMART, and they knew that just about every other kid in the world could do such a task with no trouble at all.  So, when my reaction after they struggled to perform was an enthusiastic "Good job!" -  who could blame them for throwing the block or puzzle piece across the room or angrily pinching my arm!

Indirect praise was infinitely more effective once my very patient teachers helped me learn a new way to do things.  Once they  established that they were much more intelligent than any of us had realized, we could stop with the "baby work" and move on to things that were more appropriate to their cognitive level.  One of the happiest times in my classroom was when the kids were all going regularly to general education classes with their age peers, and using Facilitated Communication to complete the same work that others were doing.  I proudly displayed their typed work on the walls outside our classroom and didn't have to say anything at all.  Having other adults in the building stop by to express their pleasure was the best reward of all.

In my more recent work with adults, we have at times set up visits where two or more of our typing friends can get together to chat.  At times, the conversation lags and I realize that we - the communication partners who are there to provide needed support - have taken over, wandering off topic into things going on in our lives, or current events in the news, or (best of all) the lessons we have learned over the years from our silent typing friends.  At first, I felt guilty when this happened.  It was supposed to be THEIR social time, not ours.  And yet, I realized that something interesting was going on.  These folks really liked hearing about our family life, they appreciated learning about events in the news, and they really, really liked hearing that we were finally catching on to what they had wanted us to know about them all along. They silently voiced their approval by listening to what we were saying and letting us continue.  We talked, they listened, and they approved.

Fast forward to my current situation in these days of Covid-19.  I am no longer meeting in person with my typers, with just a couple exceptions, and instead sometimes find myself in a group online meeting as part of a team trying to make the best of these difficult times.  Recently in such a meeting with one young man, a non-speaking FC user participating from his own home, he became rather restless after about 30 minutes of interaction.  We had been asking him questions and he was supported in using FC to give us some insights into how he was doing.  The group leader suggested that we could quit at any time if he was ready, and he typed his response: "No. You talk. I listen."   And so we continued to do just that.  He stayed in the room, happily listening to the rest of us as we talked about how we have been coping with the stress of having our lives changed so dramatically.

It makes so much sense.  For years these individuals were misunderstood and underestimated.  Many had little or no academic instruction.  And yet, they were learning all the time.  Many have told me via FC that they hear everything and remember everything as well.  So listening is a strong suit, and if what they are hearing confirms that the people around them recognize and appreciate their intelligence, they can relax and continue learning - and continue teaching all of us.

The Cruelest Month

"April is the cruelest month" ---  from a favorite poet, T.S. Eliot, and from my almost forgotten college days.  It really WAS a cruel month in the year 2020, but March, May and now June are not far behind.

In line with the general theme of this blog, I will focus here on lessons I have learned - mostly from kids, my kids, my grandkids, the kids I have taught --- kids of all ages (many are now adults) who have taught me.

I am trying so hard not to complain, not to wallow in self-pity, but it isn't easy.  When Covid-19 shut down most of the country, really most of the world, we all suffered great losses in our lives. I have been at home for about three months now, keeping a mental list of all the things I miss in my life.  I am quite sure most everyone has a similar list - having places to go, seeing friends, hanging out in a coffee shop, library or park, eating in a restaurant, going to the movies.  Do you play the game with yourself - if the virus is declared gone, and life can resume, where do I want to go first?

I have a brand new great-grandson, born on May 6, and I yearn to hold him, to see him in person.  When might that be possible?   As a family, we have already celebrated several holidays and birthdays via Zoom meetings - not quite the same as gathering in person, but better than nothing.  Thank goodness for modern technology to help us stay connected.

The blessings of family, a peaceful home in the country where I can remain "safely at home" for the duration, the financial security of retirement benefits, miracles like Netflix, Zoom and Facebook make all of this infinitely easier for me personally than for many others.  I am healthy, my family is healthy, that baby and his parents are doing just fine.

Gratitude for all my blessings in life goes a long way to soothe my restlessness, and then I think about my amazing grandkids. Back in early March, Kid #1 was at the peak of her gymnastics season.  She had an outstanding performance in a competition on a Sunday afternoon, and was filled with hope and excitement about the meets that were still to come.  But of course never did.   Kid #2 was preparing for similar competitions in karate, plus turning 16, getting his driver's license, and having braces removed.  The birthday came and went with little fanfare and everything else is still on hold. Kid #3 is a high school athlete, hoping to play college football.  There was no spring football, there will be no summer camps, and the fall season is doubtful.  His restaurant job came to an abrupt halt, so plans of saving for college and possibly getting a scholarship have vanished for now.   Kid # 4 finished college with no graduation ceremony, and no parties.  She is now a nurse, so she has a job - but of course Grandma is both proud and very worried about her health and safety.

They all miss school and miss their friends.  The older ones live on their own and are mostly working from home, and then staying at home at a time in their lives when socializing is how they usually spend whatever free time they might have. Their lives have changed much more dramatically than mine, and I have heard not one word of complaint.  They even listen patiently when I point out that they will surely have stories to tell their children and grandchildren in the future, and I am sure I have repeated more than once that this current situation really is a big deal - it is something none of us have experienced in our lifetimes, and none of us knows how the story will end.  Bless them for tolerating Grandma's rambling thoughts and words of wisdom. 

My most dramatic loss is probably the regular contact I had with my nonspeaking friends who type to communicate.  I try to stay in touch with their families and it is very reassuring to know that everyone seems to be doing as well as might be expected under some very difficult circumstances.  Day programming came to that same hard stop and everyone's schedule was severely disrupted.  Situations vary, but all of these folks need someone to support them 24/7.  Parents and home staff are indispensable, and it is critical that everyone stays healthy and safe.  Just exactly how they are all managing this is beyond my imagination.  But again, no one is complaining.  They are just doing what needs to be done.

So what are the lessons?  We all need to do what we can with whatever life sends our way.  Being grateful for our blessings is essential.   Complaining, or worrying, accomplishes little or nothing.  Life goes on and while it may never be quite the same, there surely will be better times ahead.

And from my typing friends who have special insights into such matters: Love will win in the end.  Stay strong.  Stay well.

"If Only They Could Tell Us"

In my early days of working with children and teens who didn't speak, we "jabberers" used to joke that we'd really be in trouble if these folks could ever talk - and tell stories about US!  And now, I can't wait to hear what they have to say when they have the needed supports.  Today I am going to share a random assortment of very important messages I have received from some of the great people I work with.  It has been over five weeks now since I have met with any of them --- I am very lonely, and my hope is that this might be just what they want me to be doing with all the time I have available to me.

Without identifying anyone, let me just say that these comments come from men and women roughly between the ages of 25 and 65, most of whom have no spoken language at all, and many of whom have had no formal academic instruction in their lives.  Added note:   All of these were shared with me over two years ago.   I apologize to my typing friends for the delay!

Concerning intelligence:
My mind is good.  In my mind I know much more.  I wish my mouth could say what I am thinking
Get more people to see my intelligence.
Please look into getting more people to understand how intelligent we are.
I will tell you that I am very smart.
Just tell more people that we are intelligent.
Please lets talk about knowing much more.
I know so much.  Help me show people.
We all are very smart. Try to make people see how intelligent I really am.

About feelings:
My feelings get out of control.
Hopefully you can read more about the love in our hearts.
Very much I hope we might find love in this world.  Help the world be more loving.
Everyone needs to feel real love, See if some day the time will come that we are all seen as intelligent.
I just think I have so many fears. I am afraid of most new things.
Love is our only hope.  Please help me find hope.
I get so mad because people think I don't know anything.

About movement:
Please understand I have lots of energy. I think you are my best friend because you understand why I need to keep moving.
I want to tell everyone that my body is my enemy.
Please help me be comfortable in my body.  I hate my body because I look crazy.
You need to help me be more in control.

The importance of typing:
I just hope I might be able to keep typing like this.
Free my from my prison.
I hope to type by myself.
Just know I need more typing.
Help me be able to type my thoughts.
I love typing.
I wish we could type all day.
Right now I just need you to type with me every day.
You just need your dear tiny finger helping.
Typing changed my life.

Concerning boredom:
I want you to help me just have more in my life.
I want to know more about just everything.
Just know I hope I might be able to get my life more interesting.
You have to help me have more of a life.
Get more things for me to do.

Respect:
You really give my heart hope.  You see my intelligence  Try to be my helper.
How you think about me can make the difference between life and death. I just need you to see that I have much more to tell you.
Just look into our souls to see how good we really are.

Advocating for others:
Understand that many more people just like me are needing to find their voices. Help them see that typing might open new doors for them.
I just need to be sure people know there are many more people like me.  We all need more opportunities to let you know that we have much to say. Try to imagine other kids like me who look like they don't know much but really have much on their minds. By giving them opportunities to type, you open up lots of doors that have been locked.

And, an added bonus to anyone who has read this far:

Higher level awareness:
Please help me move into the new dimension.
Look into more undertaking of my new dimension.
Please be more loud in telling your story. You must not wait. There are too many people planning to be really bad. The most evil people are in charge of our government.  We might be too late. There are too many evil forces out there. Please more on the evil in the government.  We better work fast because time is running out. 
Just know I might be reading your mind.  Just know you and I have holy powers. I can read your mind, but you cant read mine.
We need to be open to new knowledge.  New knowledge is coming. Be open.
Understand that mighty things for all of us are going to be happening.
Let people know about my ability to read your mind.
Look into more about moving into new dimensions.  Please get hopeful becuz (sic) I might be moving to the fifth dimension. Then I can help more people. I hope to help people learn to love. Understand I might be in the light now.