Tag Archives: nonverbal Autistic

“People Do Not Believe Me”

“People do not believe me” was what Emma wrote on our last day in Texas last week.  Prior to that sentence she wrote a message to Richard and me that left me in tears because it expressed her gratitude for believing in her and for fighting for her right to be thought competent and intelligent.

One day my daughter will be able to write what she feels and believes independently, of this I have absolutely no doubt.  When that day occurs, she can choose what and when she wants to write such things, but for now, I will keep this post to my own views and opinions.

As many of you know, it was not so very long ago that I was one of those people Emma was referring to.  I have a great many feelings as I write that sentence, but as I trace back what was going on and why I didn’t or couldn’t or wouldn’t believe in all, that it turns out, she is capable of, it wasn’t that I didn’t want to, it wasn’t that I didn’t hope, it was that everything I saw, heard and thought was muddied by what I read and was told and was confirmed by what I thought I was seeing.

When I met people face to face (as opposed to reading their words or hearing of them) like Barb Rentenbach, Tracy Thresher, Larry Bissonnette, Amy Sequenzia, young Nick, Joey, Jamie, Jenn, Mark, Tito, Sarah and countless others who do not speak, or whose spoken utterances are not in keeping with what they write, I began to question what I once believed.  It was during a presentation Barb Rentenbach and Lois Prislovsky gave at the Autcom Conference in the fall of 2012 that I thought, okay, maybe, just maybe, my daughter is not saying what she intends to say.   At that same conference I went to another presentation with Larry Bissonnette, Tracy Thresher, Pascal Cheng, Harvey Lavoy where a young boy, younger than Emma, typed on his iPad extremely insightful comments pertaining to the topic and again I thought, maybe, just maybe my daughter is like that boy and I just have to find a way to help her communicate.

It was the first time I’d really considered the disconnect between speech and intent.  It was the first time I began to wonder whether all this energy being placed on output of spoken language was the best way to help her communicate.  You see, up until then I bought into the idea that if we could just get her to talk, we would be giving her the tools she needed to say what she thought, that the words that came out of her mouth were indicative of what was going on in her mind.  We even would give her spoken prompts, say a sentence and have her repeat it, as though if she could just repeat the words, even though they were dictated and not her words, they would make sense and the connections would be made.  And when they didn’t seem to build to a critical mass, instead of questioning the push for spoken output, I questioned what was going on in her brain.

This was a huge mistake, it turns out.  Huge.  But I didn’t understand.  I didn’t see the error in this thinking.  I could not believe.  Not yet.

And then I met these wonderfully resilient, creative, intelligent people who did not communicate through spoken words, but instead wrote beautifully, poetic words that put together made equally gorgeous sentences that spoke of insights and wisdom and hope and strength and courage and compassion and I was blown away.  At first I thought each person was an anomaly.  I told myself they couldn’t possibly be representative of many, they had to be one in a million… and then I met more and more and eventually, even I could no longer doubt what I was seeing and witnessing, this critical mass… this unleashing of hundreds of voices, each unique and yet all…. all were communicating what was in their minds and many spoke of that disconnect that occurred between a thought and what then came out of their mouths.

“my mouth constantly talks different from what I think…” Emma wrote.

“People do not believe me.”

“Yes,” I told her, “but that is changing…  that will change.”

It is my promise to my daughter.  I will not stop writing until it is no longer necessary to say these things.

Lois Prislovsky, Barb Rentenbach and Emma

L,B&E copy

Less Than A Year Ago…

If I don’t immediately take notes during and after my typing sessions with Emma, I would wonder whether the words she typed were a figment of my imagination. There is something almost magical seeing and reading the words typed from someone who does not, or does not easily, communicate with spoken language.  It reminds me of the time I went to a lecture given by Soma Mukhopadhyay with her autistic son, Tito who began answering questions from the audience.  Tito is non-speaking and has a great many stims, yet translates his beautifully eloquent, poetic  thoughts into words and has no problem answering any question posed.  It’s often a disconnect for the neurotypical person watching someone who isn’t able to verbally say what they are thinking, yet has no trouble writing their thoughts, which in no way match the presumptions we, NTs tend to make.  If you’ve never witnessed something like this, it can be pretty mind-blowing, which says more about the limitations of neurotypical thinking and the constraints we unintentionally place on others who seem different from us than anything else.

Last night I began Emma’s session with a question.  It’s the same question I always ask her.  “Hey Em, how about after you sing this song we do a typing session together?”  And Emma answered, as she does every time I ask her this question, “Yeah!  Typing session with Mommy!”  Emma’s excitement, in and of itself, makes me incredibly happy.  That she’s interested and (I think) looks forward to our sessions as much as I do, makes me believe we are on the right track.  When we went into the room, now dubbed, “Emma’s office” I tried to think of a question it seemed likely Emma would know the answer to, but that if she typed it out, I would be surprised.  As we are leaving soon to visit her Granma for the holidays, I said, “When we fly to Granma’s we have to first take a taxi to an airport.  What’s the name of the airport we usually go to?”  Without hesitation, Emma typed, “La guardia”.  Wow!  Just wow!  I then asked, “There’s another airport near La Guardia, we don’t usually fly out of, but what’s the name of it?”  Emma, again, without hesitation, typed, “kennedy”.  Whoa!   Then I threw her, what I thought would be, a curve ball and asked, “When we fly out of La Guardia we always take the same airline to visit Granma.  What’s the name of the airline we always take?”  Emma wrote “United”.   EEEEEE!!!!!  Snoopy dance.  Give me a moment while I hyperventilate.  Whooooo, whooooo.

Emma went on to tell me what state and city we live in, the name of the state we were flying to and when I asked, “What’s another name for the city we live in?  It starts with an M?”  Em immediately typed “Manhattan” though she forgot the h and one of the ts.  I followed up with, “And what’s the neighborhood we live in?”  Emma, again without hesitation, typed, “Chelsea.”  Taking another deep breath.  For those of you who are doubting what I’m writing, I understand.  Really.  I do.  As I wrote above, I actually had to take notes during our session, because I knew I would come away as if in a dream.  (Ibby suggested I record our sessions together and I keep forgetting to do that, but I have to remember to from now on.)  That’s what it feels like, a dream.  I absolutely believe in my daughter’s competence.  I believe she is far more competent than most people who come into contact with her do.  I do not for a second doubt that she has a busy, complicated and fascinating mind, filled with thoughts, ideas and knowledge I can only guess at.  But to know this, to believe this, is different from being shown this.  I don’t mean to offend any of you reading this who are non-speaking and communicate by typing.  I don’t mean to offend, really I don’t.  I hope that were Emma to ever read this she will understand what I’m trying to say.  This is not about Emma’s limitations, either intellectual or otherwise, this is about my own.

For all you neurotypicals who can speak, humor me for a moment.  Think about how you would feel if you could not speak.  Think about all the things you know, but couldn’t say.  Now imagine if you were told something simple, like the city and state where you lived over and over, repeatedly, day after day.  Just think about this for a second.  Close your eyes and try to imagine what it would be like to not be able to speak.  Imagine that well-meaning people tried to help you speak through repetition and you were not allowed to move on until you were able to say these things being “taught” aloud.  Imagine how you would feel were you never able to say these things, so you weren’t allowed to move on.  It was assumed that because you couldn’t say them, you must not KNOW them. And yet, all this time…   all this time you really did know these things.  Not only did you know these things, but you knew so much more.  But no one believed that you did.  No one treated you as though you did.  Less than a year ago I assumed Emma did not know.  Less than a year ago I assumed Emma did not understand.

Less than a year ago…

Emma waiting for the school bus with her string

*Em

A Little Gratitude And Love

I have to begin this post with some gratitude.  Angela, whose blog – Half Past Normal – a wonderful blog I hope all of you will visit, reached out to me yesterday with a lovely comment.  As with all the comments people leave, I was left feeling so fortunate to be among such a wonderfully vibrant and diverse community.  Thank you Angela for thinking of me and reaching out to me.  It made me very, very happy.

I wrote yesterday about feeling off kilter, feeling what my father would have termed – je ne c’est quoi – I couldn’t put my finger on it, thought it was from all the travel and jet lag, maybe some overwhelm too, I didn’t know really.  But I’m closer now to what it is.  My friend Ib, whom I adore and carry with me in my heart at all moments, helped clarify it for me yesterday.  She calls it “weltschmerz” and she said, “it is located in your language of erosion of trust… disappointment… the need to help underscored with a note of (in my ears) not being sure it will work or anyone will listen… I think it is weltschmerz and I think it got in your body like it does for us and made your bones tired.”  The “us” she is referring to are all the Autistics who are advocating for change.  They are constantly working to change our thinking, our perceptions and the way Autism and Autistics are viewed and treated.

As I read Ib’s explanation I thought of @Coyotetooth who tweets poems in 140 characters or less and photos of his walks.  He is one of the many brilliant, kind souls who is quietly making a difference.  His post, Unshattered is just one example of his poetry on his blog CoyoteTooth13.  His tweets are the ones I try to find first thing in the morning. Sometimes if I’m very lucky I will come upon his and @AspieChap’s conversations, often conducted in rhyme, the best way to begin any morning, it seems to me.  Then there’s @Aspie_Warrior who is tweeting and blogging (blog – Aspiewarrior) about  what it’s like for him as Dad to AS son and NT family.  He writes, “This has led to me working as kind of translator in my household. Kind of a bridge between my NT family and my son.”

@SpectrumScribe with his wonderful blog, Postcards From the Edge of the Spectrum writes about his journey of discovery, revelation, acceptance and self-reconciliation.  He has wonderful suggestions for books and film in addition to his terrific posts.  There’s @AspieKid whose comments on Emma’s Hope Book have inspired whole posts  and who writes on his blog, AspieKid about his life and what it was like for him as a child.  There’s Laura Nagle, featured in the wonderful documentary, Vectors of Autism: Laura Nagle and gives one of the best monologues I’ve ever heard about what it is to be Autistic.

There is Amy Sequenzia and Peyton Goddard and Emma Studer, all of whom are nonverbal Autistics communicating through typing and whose words are having an impact.  One by one they are changing people’s perceptions of their children and what it means to be a nonverbal Autistic adult in the world.  There are countless others and I will try to include them in future posts, but these are all Autistic people who help me understand, who through their kindness help me forgive myself for the mistakes I’ve made, who have helped me do things differently.  Maybe they already know they are making a difference or maybe this will come as a surprise, but they are and they have.  They have made a difference in my life and by extension in my daughter’s life.

If there is one thing I can do with my writing and with this blog, I hope it is to inspire other parents and organizations to read what Autistics are writing and to interact with Autistic people.  If I can have any impact on the organization – icare4autism – it is to persuade them to seek out the advice of Autistics, to hand the microphone over to them and to work closely with them in moving their organization forward.   We parents can give each other support and cheer each other on, but it is Autistics who can best advocate for themselves, who can explain to the rest of us what it’s like, who can encourage us to not concentrate on deficits, but on assets and who can show us we are not so different.  We are, after all, human, regardless of our neurology.  Perhaps it is in sharing our commonalities, rather than our differences that will encourage people, all people to come together to help one another.

I have to end this post with my friend Ib.  Ib doesn’t have a blog, but she is a powerful presenter and advocate.  She also is my friend, someone who reminds me when I feel discouraged, frustrated, tired or angry that kindness was what changed things for me.  Kindness from Autistics who reached out to me and extended their hand not so long ago.  E. from the blog The Third Glance was one of the first, and I’ll never forget how much her comment on this blog meant to me.  Ib has not only extended her hand to me, but opened her arms in embrace, no matter my mood, no matter my lack of understanding, patiently, lovingly, she has given herself in friendship and I can only hope she feels my love for her in return.

Yesterday evening