Tag Archives: Typing

Autism And Stress

Lest you think this post is about stress felt by parents, let me quickly say, it’s not.  This post is about the stress I have observed my daughter experiences.  The stress she feels and that I (often unwittingly and unknowingly) exacerbate.  This is not about  beating myself up, but is an honest look at how my reactions can make matters worse.  As I’ve said before, it is my hope that as Emma’s mother I continue to make progress in my parenting, but also as a human being.  Just as I hope and expect my daughter to learn and progress, I hope the same for myself.

“We have to minimize her stress.”  This was something Soma Mukhopadhyay said during Emma’s most recent session with her.  It was in answer to my question about when to graduate from using a letter board to a computer keyboard during her RPM (rapid prompting method) sessions.  During the session Emma pointed to a letter, then Soma wrote the letter down, Emma pointed to another letter, and on it went until Emma had written an entire sentence.  This technique, of one letter pointed to, one letter written down, helps with Emma’s impulsivity, which is amplified when she’s feeling stress.  It was during this same session that Emma answered Soma’s question about whether she could feel colors, with, “Of course.  That answer, those two words spelled out so easily by my daughter, made me laugh and cry at the same time.

My daughter types and does things that astound me.  It doesn’t matter how much I believe in her competence, I am continually astonished, ecstatic and heartbroken all at the same time.  Astonished because of the ease and confidence with which she will say something like, “Of course” in answer to a highly complex question, heartbroken because for so long these were words I never imagined I’d hear, let alone learn what I am now learning about her.  I no longer believe these feelings are mutually exclusive to each other.  Now, instead of wondering whether it was all a dream, I celebrate the exquisite beauty of my child and all she does that constantly reminds me of just how vast and incredible the human mind is.  I am humbled, on a daily basis, in the best possible way.  I would not trade the awe I get to feel when in the presence of my child for anything.  Seeing my daughter defy every limited idea about her that has ever been uttered, including my own thinking, gives me tremendous hope for this world, for my own growth and for humanity.

I witness greatness when I watch her work and it is a beautiful thing.  So when she expresses upset, which I now am able to identify as stress, it breaks my heart in a way that it didn’t, before I understood.  What I used to think of as stubbornness or a temper tantrum or a form of manipulation, I now see as a product of the enormous stress she feels.  And I have to wonder, exactly how much stress must she cope with?  I have talked about what I perceived to be her “resistance” in typing, but am now beginning to think of it as less “resistance” and more stress.  Stress from how very difficult it is.  Stress from expectations, stress from making a mistake, stress from doing something different, and those are just the stresses I can easily come up with and relate to.  I’m guessing there are many more I am completely unaware of.

Stress is something that, when she is gripped by it, all systems seem to simultaneously crash.  To make matters worse, my stress level rises in direct proportion to hers and I am confronted with how unhelpful I am when I allow my stress to overwhelm me as was the case the other day.  My response to Emma’s panic was to panic too.  So much so that I could barely breathe.  “You have to calm down!” I instructed her, while my own sense of calm, shattered so completely, was a perfect example of what NOT to do.  It was the antithesis of modeling behavior sought and it reminded me of something my father used to say to my siblings and me – “Do as I say and not as I do!”  I think he thought it amusing, however I remember it as anything but.

There are times I cannot predict, when something happens, things I don’t know or understand, and suddenly my seemingly placid, happy child is in a turmoil of upset.  There is often a sensory component I’m unaware of.  During these times sentences are repeated that are obviously meaningful to her, but that I find confusing.  As her stress escalates, her ability to verbalize what’s going on plummets and my frenzied request that she “type it out” does nothing to alleviate the situation.  The longer all of this goes on, the more I feel completely ill-equipped to keep my stress level from going into the red, let alone help her with hers.  That Emma seems convinced I am, not only capable of pulling it together, but will be able to help her, is an example of my daughter presuming in my competence, which makes me all the more determined to work through my own issues and do better.  I owe it to her.

September, 2009

September '09

The Complexity of Life and Change

*Emma gave me her permission to write about this.

Yesterday Em was having a tough time.  She has been talking about an indoor playground that closed some six years ago, expressing her upset that it’s now a store and asking that we build a new indoor playground exactly like it.  We have discussed the idea that places go out of business and that we can’t bring them back, we’ve talked about what is required to build an indoor playground, but that it will not be exactly like the one that closed.  We’ve discussed the concept of same and different.  We’ve gone over the preliminary steps needed to be taken in creating any sort of space.  Joe even thought she might like to build a model playground, complete with running water and electricity, but none of this has helped.  She remains very upset.  So much so that I began to feel certain her upset was not actually about this specific playground, but that this playground has come to symbolize loss.

“I want playground.  I want to build it.   Will take out the store and build a different playground has slides and a bouncy castle.”

I explained again that we couldn’t do that.  Em then repeated how she wanted to build a playground and then said, “Bertie kitty can’t eat pancakes.  Bertie kitty, the animal vet doctor, says no.  Might get sick.  Bertie kitty died.”

I nodded my head and said, “Bertie was old, Em.  He didn’t die from eating pancakes.  He died because he was very old.”

“I want to take it out!” Em pulled at the palate expander in her mouth and began to cry.

“I know you do, Em.  But we can’t take it out yet.  The orthodontist will take it out eventually.”

“Soon.  I want to take it out now.  I want to build it.  I want to build new playground.”

It’s easy for me to get caught up in the literalness of Emma’s words.  To get swept up in each upset individually, as it shows itself, veering from the closing of a playground, to the death of my cat, to the desire to have her palate expander removed.  If I take each of these concerns separately and at face value, I can quickly become lost in each one.  This is something I continually struggle with, not just with my daughter, but in life.  I take things pretty literally and often try to compartmentalize each thing so as not to get overwhelmed.  So in instances when Emma seems to be racing from one upsetting thought to the next, it isn’t my first thought to look for the common thread.  But I am fairly certain I’m correct about my interpretation of what’s going on here.  I think Emma is working through a number of difficult concepts that in her mind are all related.  The playground closing and being replaced by a store that holds no interest for her, the death of my elderly cat Bertie, whom she loved, and the palate expander that she dislikes and wishes would be removed.  I could be wrong, of course, but it seems to me they are all connected.  They all fall under the heading of permanence and impermanence, or death.

As Emma learns to communicate better through both typing and verbally, we become better at listening and understanding her, her anxieties are becoming more obvious to us.  As her communication skills increase, so does her obsessive compulsiveness, or so it seems to us.  It’s entirely possible that Em has always had this degree of anxiety, obsessiveness, coupled with compulsivity, but we are only now becoming aware of just how difficult it is and how often it overwhelms her.  Leaping from one upsetting scenario to the next is something I do too, particularly when I am tired.  With Emma it’s all about things that are impossible to have, things that are gone and won’t come back or, as is the case with the palate expander, about change, literally physical change as she looses the last of her baby teeth and her permanent teeth appear.

As we continue to support Emma with her typing, we have noticed she is becoming more verbal.  As she becomes more verbal she is expressing her anxieties, her concerns, as well as her desire to be heard.  The more we listen, the more she has to say.  Yesterday as we worked on her typing, I asked, “Em tell me two things you like doing and one thing that’s hard.”

Em typed, with my hand barely touching her forearm, “I like to bounce on the trampoline.  I like to bounce on the bouncy castle.  It is hard for me to work with mommy.  You could help them work with mommy.”

“Thank you for telling me that, Em.  Who should help me so it’s easier for you to work with me?”

“Pascal.”

Emma and Pascal take each other’s photographs  – April, 2013

*Pascal

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