Tag Archives: nonverbal

“Let Me Tell You…”

Emma gave me permission to tell all of you what she would invent were she an inventor.  *A little background – the quotes from Emma are what she spelled out by pointing to a letter, one letter at a time on a stenciled alphabet board.  No one touches Emma as she does this.  In fact there is no physical contact of any kind during the session, also known as an RPM (Rapid Prompting Method) session.

Emma has been doing RPM daily with me since the end of September.  Within the past two weeks she has begun to answer open-ended questions with me.  However the session I am going to write about was with someone who was trained by Soma Mukhopadhyay (the creator of RPM) and whom she is now seeing a couple of times a week.  This person, who I have not asked permission to print her name and so will refer to as B, has been doing RPM for a while now and as a result is able to move far more quickly into open-ended questions than I am.

In their previous session they had discussed train engines.  At the end of their session B asked Emma to think about what she might invent were she an inventor.  When Emma returned for her next session they began with the question, “What would you think was a really great thing to invent?”

Emma then replied, “Let me tell you that it is not a train engine.”

I have to interject here…   I love how ballsy my daughter is.  I love that she didn’t just answer with one word.  I love how audacious, cocky even her answer was… “Let me tell you…”  Emma spells words out, and I sit watching, literally on the edge of my chair, waiting, wondering what wonderful words will she write?  “Let me tell you…”  YES!  I cannot wait to hear what you have to say!!!!!

Emma continued, “It is more from the future…”

B urged her to tell us more.

“It is a spaceship.”

For all who know my husband this answer has brought a smile to your face.  For those of you who do not, let’s just say he has a particular fascination with spaceships, UFO sightings, etc.  He has logged in many an hour watching YouTube clips of various sightings.   As I sat watching my daughter spelling out these words I kept thinking how much Richard was going to LOVE hearing about this session.  But there’s more…

B encouraged Emma to continue, asking her to tell us more about the spaceship she would invent.

Emma spelled out, “Have you ever seen spaceships in New York?”

Sorry, I have to interject again.  This question… this question is wonderful and defies all that is commonly thought about so many of our kids who cannot verbalize questions like this.  For all those parents who have never had their child ask a question, for all who have bought into this idea of Autistic self involvement, of a lack of interest in others, this thought that our children who are non-speaking or unreliable speakers are “caught” or “lost” in some other world… to all of you, I suggest we rethink these ideas.  My daughter is not the only one writing things like this, she is one of many, many children, teenagers and adults who cannot voice their thoughts, but are writing them.  I have watched her, time and time again, asking questions; this kind of engaged conversing goes against everything we are taught and being told about non-speaking/unreliably speaking autistic people.  

B answered Emma’s question saying that she had not seen a spaceship in New York City.  She said she’d seen a great many different types of transportation in New York City, but never a spaceship, to which Emma then wrote, “You never have to wait to go anywhere.”

B then asked her how you could get a spaceship and Emma wrote, “You buy it on your own or you get a monthly pass.”  (In New York City most of us take advantage of the terrific subway system.  To use the subway you need a “Metrocard” which you can purchase for a single ride, multiple rides or for those who commute daily a monthly card of unlimited rides.)

B observed that as parking in New York City is already limited she wondered where a spaceship would go.  Emma wrote, “No parking needed.  Once they have landed they become invisible.”

B then asked her,  “How do you call for one?”

Emma wrote, “You have a button to press and it arrives right away.”

Let me tell you…

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Facing the Skeptics

It’s snowing.  In New York City.  Right now.

“Look Daddy!  It’s snowing!”  Em said this morning.

There’s nothing particularly spectacular about that comment, except to us, it’s not only spectacular, it is exciting and yet another example of how my husband and I continue to underestimate our child.  (This is less a criticism of us and more a statement of fact to illustrate a larger point.)

“Em, do you know who the president of the United States is?”

“Yes,” she spelled out.

“What is our president’s name?”  I asked.

“Barak Obama,” she spelled.

“Do you know our vice president’s name?” I asked, thinking this might be taking things too far.

“Yes,” she spelled again.

“What is the name of our vice president?” I asked.

“Biden,” she wrote matter-of-factly.

“Communication is the most essential use to which spelling should be devoted.  It should not be used as a test or an exhibition piece.  Try being confined to a sentence a week and see h ow you feel about using that sentence to answer some stupid question about whether you live in St. Nicholas.  If Rosie had spent all her time giving tests we would not have had time to use spelling for our own communication.  Crushing the personalities of speechless individuals is very easy: just make it impossible for them to communicate freely.” ~ Anne McDonald from the book Annie’s Coming Out

This is what we are striving toward.  Annie’s comment here is one I have read and reread and yet find so difficult to apply because I am in a near constant state of disbelief when it comes to all that my child is capable of.  I write often about presuming competence, I write about how we dehumanize Autistic people with the language that is commonly used to describe them.  I write about how important it is to treat all people as equal.  I talk about human rights and how the rights of those who are Autistic, particularly those who do not speak reliably or at all, are dismissed, ignored or simply not acknowledged.  And yet I underestimate my child’s ability constantly and without meaning to.

On a daily basis she writes something that blows my mind.  EVERY DAY.  Read that again.  Every.  Single. Day.  It’s like living in an alternate universe.  Every day I feel excited to know what the day will bring.  Every day when I sit down with her I am prepared to feel that mixture of excitement, surprise and overwhelming gratitude.  Every day I think, will I ever stop being surprised?  How long will it take?  I don’t know.  But here’s what I do know – everyday I am overcome with emotion, respect and profound joy in  all that is my daughter.  I am sincerely grateful to read what she tells us, and grateful to all the people who have made it possible for her to do so.  Grateful doesn’t cover the emotions, but it’s the best I can do at the moment.

Yesterday in her *RPM session (follow this link to read more about RPM, which is not the same as FC or facilitated communication, though there is some overlap in that they both presume competence and treat the person with the respect most of us take for granted) she was asked, “What else has an engine?”

Emma spelled out, “Lets say leaf blower.”

My smile was like the Cheshire Cat’s, from ear to ear.  Leaf blower?  I LOVE that!  And later she asked for a clarifying question and then wrote a wonderful answer to a question about what changed once we began using automatic train engines.

“Until I could prove that they were intelligent nobody would come and assess them.  Guilty until proved innocent.  The children were profoundly and hopelessly retarded until they could prove they were intelligent.”  ~ Rosemary Crossley from  Annie’s Coming Out

“It was simply too threatening; my discovery questioned the basic assumptions on which care was offered…”  ~ Rosemary Crossley from Annie’s Coming Out

My daughter is one of hundreds of Autistic people who are writing and typing to communicate and in doing so she is proving every day how extremely gifted she is.  We are at the very beginning with all of this.   There are others who are far ahead of us, those who have published their thoughts, with more being published all the time.  Incredibly, what Rosie experienced, those deeply held prejudices back in the 1970s, continue to flourish today, now more than thirty years later.

“This was one of our standard problems:  people who doubted the children were always so sure of themselves that they openly expressed their skepticism in front of them.  It did not occur to them that if they were wrong they were terribly rude, and that they were making it very difficult for the children to respond to them.  How do you talk to someone who tells  you that they are convinced that you cannot talk?  What are they going to ‘hear’ when you try to talk?” ~ Rosemary Crossley from Annie’s Coming Out

We are living in a time when more and more parents, educators, people who work with Autistic people and Autistic people are facing the skeptics.  We are offering continued proof of our children’s and Autistic people’s intellectual gifts, indisputable evidence of all they are capable of.   My daughter is but one of a great many.  As long as she gives me her permission, I will continue to report some of what she is saying here while hoping that one day soon she, and others like her, will no longer be placed in  the insulting position of having to prove their vast intelligence, and themselves, to anyone.

Rosemary Crossley and Anne McDonald

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The Purple Tree

The Purple Tree and Other Poems is a collection of poems by Sydney Edmond who is non-speaking and autistic.  She learned how to write using a letter board when she was ten-years old, two years later she gave her first public presentation  and has presented at a number of other conferences since then.  Now ten years later, Sydney continues to write, present and is the subject of a documentary called, “My name is Sydney

“Lazy, achy lady
lived by the sea.
Lazy, achy lady,
move away, please.

You are always blabbing,
talking long and loud.
You are closing in on
my lovely little cloud.” ~ From the poem, Some Early Poems

One of the most exciting things happening now is the emergence of a growing number of non-speaking Autistic people who are writing.  Thankfully self-publishing and blogs are making their work accessible to the public.  As more non-speaking Autistic people write and publish their work, it will become increasingly difficult for the public to deny that the assumptions we have long-held about Autistic people are incorrect.  Eventually we will have to re-evaluate how we are viewing those who are Autistic and what that actually means.  Our notions of “intellectual disability”, our ideas about what someone is or is not capable of are being challenged and will continue to be until what we think we know now, what is considered common knowledge will be seen as antiquated and our limited assumptions an example of just how ignorant we once were.

“I lack the lovely peace of mind,
lack my always smile.
Who listens to a lonely girl,
Listens to a child?”  ~ From Dear Friend

The first presentation Sydney gave was in 2005, just two years after she began communicating on a letter board.  This poem, Love, Love, Love! was part of her presentation at the West Coast Symposium on Facilitated Communication.

“But Soma came along
and changed my life.
She actually lifted poor little me
out of darkness
and into light,
love,
and lovable, lovable, lovely happiness.

Soma taught Mom
how to communicate with me,
and Mom and I have been talking
ever since.
Now I can choose my own clothes,
make my own decisions,
and make lovely friends out of people.”

For those of us with children who do not speak or whose language is unreliable, or does not necessarily reflect what is meant or intended, we are entering a time of tremendous hope.  There is a great deal of work still to be done, but in publicizing the work of those who are like our children, who are communicating by typing and pointing to letters on letter boards, we will shift how people view not only our children, but all our children and people.  By questioning commonly held beliefs about any one group of people we affect change for all mankind.

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“It’s Good to Be Heard”

It’s good to be heard

These are the words my daughter spelled out yesterday during an RPM session.  She wrote some other wonderful things too, but I don’t have her permission to print them here.

“It’s good to be heard”

Imagine a life where it was not a given that what you said would be listened to, or even understood.  Imagine if you said things you didn’t mean or that people couldn’t follow the meaning and so you were dismissed.  Imagine being treated “like a three-year old” (this was something else my daughter wrote last week) by people who do not understand, cannot understand, are incapable of understanding because it flies directly in the face of all they’ve been taught and know.  My daughter does not have the mind of a three-year old, despite what anyone else may think or assume.

“It’s good to be heard”

Thanks to a number of dedicated people who have devoted their lives to figuring out alternate ways for people to communicate who cannot or do not reliably speak, my daughter is communicating with us.  Much to our surprise she has managed to learn an enormous amount despite the fact that she has spent years of her life in little more than holding tanks, i.e. special education schools where “life skills” classes are lauded as progressive, where verbal speech is seen as the only true barometer by which intelligence can be gauged.

It’s good to be heard”

RPM copy