Tag Archives: frustration


Yesterday we had an interesting discussion about the word “intention.”  The word was brought up innocently enough.  It was used in the context of asking about a larger project Emma has been working on.  “What does having intention mean to you?” Emma was asked.  

“To have intention is a skill.  To have intention is a hurdle to jump over,” Emma typed.  

I was sitting in the room as this conversation occurred, but was not part of it yet.  I was surprised by Emma’s answer.  I have never thought of intention as a skill or a hurdle.  Instead I’ve always thought of intention as being goal oriented.  Then Emma wrote, “the mind does not always process it correctly.”  

And I realized I have a very different idea of intention.  An idea of what it means to set out to do something and then to do it.  I come at the word from the point of view of someone who has not grappled with intention as daunting.  I have not experienced the word as a series of frustrations, not typically.  Sure every now and then I intend to do something, I set out to do it and find I do not have enough information or am not skilled enough or realize I need to do a whole list of other things first before I can accomplish what I had hoped.  But this is different from what Emma was talking about.  

“Is intention easier for you while you’re going through it, or later afterward when you are looking back?”  Emma was asked.  

“If I think too much about it the fear is anxiety,” Emma wrote.  

Richard said that what he was hearing Emma say was that the word “intention” means something that we do not necessarily mean.  He went on to say that if someone who speaks and says things that they don’t mean a great deal of the time, he could see how “intention” would be anxiety producing.

And as I listened to this exchange I reflected on how I define “intention” from my perspective of relative ease with spoken language.  As someone who has never considered intention a “skill,” but instead as a given and even an expectation, one I’ve not spent much time considering, my daughter has once again given me a great deal to think about.  This is the very essence of privilege.  Having something, being so used to having it that I do not even know I have it…  unless it was taken away from me or when someone else reminds me of how much easier it is for me than it is for them.

“To have intention is a hurdle to jump over.”


Emma Discusses Biting

Emma bites herself, occasionally pulls her own hair and less frequently will smack her head into the wall or punch herself in the face.  I hesitated writing about this on such a public forum because… well, because it is so public and people come to this topic with a great many strong feelings.  But Emma asked me to “put it on the blog” so I am, though with some ambivalence.  I ask that anyone who chooses to comment do so with the love, care and compassion you would hope others would have for you, were you to talk about things that are so deeply personal.  I will just add that Emma is incredibly courageous and I have nothing but admiration for her desire to speak so publicly about a topic that brings up so much distress for so many.

I asked Emma if she would be willing to discuss what is going on when she bites herself.  This is something that has happened nearly every day at her school this past week.

“I am anxious about angering those who are watching, but can’t control my aching feelings of distress.

“Biting my arm is helpful in giving those difficult feelings a pain I can control.  Getting mad at me makes it worse.

“Trying to force me to stop does not change how badly I feel, just adds to shame I already have.

“I know it upsets people, but it’s not about them, it’s about not being able to describe massive sensations that feel too much to tolerate.

“Fear takes over.

“Stress becomes impossible.

“I need helpful thoughts of calming kindness.  Reassuring words of understanding, instead of irritation and impatience.”

*I asked Emma if she could sense people’s emotions and if that added to the overload.

She wrote, “Yes, it makes it worse.”

Emma ~ 2011

Emma ~ 2011

Related Posts:

 Self Injurious Behaviors ~ Let’s Discuss

Different Neurology, Different Perception

A Short Interview With Emma

This is a short interview I did with Emma this morning about speaking, writing, and words.  

Ariane:  Do you have an inner dialogue?  You know, where you have a running conversation in your head?

Emma:  I do not think in words.

Ariane:  So that must make it hard to articulate what you are thinking and feeling.

Emma:  Yes, it is frustrating.  I am often unable to express myself even in writing.

Ariane:  Any suggestions for those of us who think in words?

Emma:  Do not think so much.  Empathy and love are not conveyed with words.

Texas ~ September, 2013

Texas ~ September, 2013

“Be Patient With Me…”

“Be patient with me, Mommy.”

This is what Emma wrote on the airplane coming home when we were delayed yet again.  This was what she wrote after spending four hours waiting to board the aircraft, an aircraft that never took off, a plane that sat at the gate for another two hours waiting for the pilot to show up, an airplane that we then had to de-plane when that same pilot never arrived, forcing us to stand for two and a half hours in the airline’s customer care line, only to be told we would not be able to get home for three more days, oh and by the way, our luggage was nowhere to be found.  Oops.  Sorry.  Shrug.

“Be patient with me…”

There were tears and a struggle to contain the overwhelming feelings of panic and exhaustion.  Cries and fists that pummeled, teeth that bit, flailing limbs, and I was right there, wanting to do the same.  Wanting to lash out.  Wanting to scream and do something that would make it all go away.  Change reality.  Change these feelings.  Change these circumstances.  Scream.  Disappear into the screams.  Clench my jaw, grind my teeth, breathe, clench, grind, breathe, clench, grind, breathe…

“Be patient with me…”

“You’re impatient,” people have repeatedly observed and thought to tell me.  Yeah.  I know.  That feeling that begins as mild anxiety, builds into an almost impossible feeling of discomfort…  the feeling that if I don’t DO something, anything right now, I will die… that’s my impatience.  I get that now, though I didn’t always.  It used to be I didn’t know what those feelings were called, I just knew I would do just about anything to avoid them.

“Be patient…”

There’s an ongoing irony to parenting.  How many times have I admonished my children to do the very thing I lack or am incapable of?  I remember going to a parent/teacher conference at my son’s school.  He was in grade school at the time and the teacher made a comment about how he needed to work on building his tolerance for frustration.  I replied, “Yup, that’s something his mom’s still working on too.”  The teacher looked at me with surprise.

“Be patient…”  

I try.  I am trying.  But don’t use me as a model.  I’m not very patient.  I tend to be controlling too.  I don’t like when things change suddenly, I feel calmer when I know what will happen next.  I don’t love spontaneity, it messes with my sense of order.  And once I’m in overwhelm, once the feelings are coming at me so quickly, I cannot access my thoughts, it doesn’t occur to me to say to the person I’m with, “Be patient with me…”

But my daughter did.  My daughter was able to get in touch with what she needed from me during a time of heightened distress.  So who was helping whom in that moment?  Was I helping her or was she helping me?

“Be patient with me…”

Em & N. ~ 2010

Em & N. ~ 2010

Emma Refuses To Get Off the Bus and A Self Advocate is Born!

Monday morning Richard and I awaited Emma’s school bus.  I had prepped Em the night before.  “Okay, so Em.  The bus is going to come and it’ll pick you up and take you to your new school, okay?”
Em nodded her head.
“When the bus gets to your new school, it’s going to let you off in the front and there will be someone to meet you.  They’ll take you into the auditorium where your teacher will be waiting for you.”
“Go see Katie!”
“Yeah and Katie will take you upstairs to your classroom.”
“Go with Mommy!”
“No, Em.  I can’t go on the bus with you.  They won’t let me.  But I’ll wait for it with you, okay?”

Emma bounded back and forth on the sidewalk in front of us as we waited.  When the bus pulled up Em ran up the steps, we spoke with the driver, who reassured us we had the correct contact info for her and as the bus pulled away I waved, remarking to Richard how nice it was to have such a friendly driver.

Forty five minutes later the bus driver called, saying Emma was very upset and refused to get off the bus.  “What?”  I heard Richard say.  “Well that’s because you’ve taken her to the wrong school!” There was a pause.  “Uh-huh.  Yeah, well it’s good she didn’t get off because that’s not her school.” Meanwhile I began talking to Richard as though the driver could hear me.  “They have to bring her home and they need to tell her what they’re doing.  She’s probably really upset and confused.  They need to tell her…”  Richard thrust the phone at me.

To the apologetic driver I said, “I’m sure Emma is upset.  May I speak to her?”

I could hear the driver, who was clearly upset herself say to someone, “hand my phone to her. No it’s okay.  Give her the phone, it’s her Mom.”  And in the background I could hear Emma’s anxiety laced voice repeating, “No I don’t want to get off the bus.  Emma goes to new school!”
“Your mommy’s on the phone, honey.  Here…”
Then I could hear breathing and Em’s voice very quietly said, “Mommy?”
“Emmy, Emmy!  The driver made a mistake.  They’re going to take you back home now.  I’m waiting for you.  Okay?”
“They go wrong way.  Emma said, no!  NO!  I don’t want to go to old school.  I want to go to new school!  I don’t want to get off the bus!”
“That’s right Em.  You did the right thing.  You told them they were going the wrong way.  They’re going to take you home now.”
“Go home, see Mommy!  I’m going to be right back!”
“Yes, Em.  I’ll see you in a few minutes.  I’m waiting for you.”

When I got off the phone I looked at Richard and said, “Wow.”  We looked at each other.  “She advocated for herself.  She totally advocated for herself.  Wow!”

When the bus arrived, returning Emma to me, I gathered her in my arms and said, “Em!  I am so proud of you!”
“No not this way!”  Emma pointed east toward her old school.  “You go wrong way.  You have to go this way!”  Emma said, pointing west, toward her new school.
“You are so awesome, Em.  If they had listened to you, you could have directed them to your school!  You advocated for yourself!  You told them they were going the wrong way.”
Emma beamed.
“You did the right thing!  You refused to get off the bus.  I’m so proud of you!”

By the time we got upstairs Emma was smiling and laughing.  Richard congratulated her on standing up for herself and for trying to make them understand.  With each compliment Emma’s smile grew wider.

By the time Richard had gathered his things to take her to her new school, Emma was happy, repeating the things she’d said to the bus driver.  It wasn’t until she came to say good-bye that I saw the teeth marks on her hand.

“Hey Emmy, I said, holding her close.  “Did you bite yourself?”
Emma nodded her head.  “Emma screamed.  Emma was frustrated!”
“I bet you were.  You were trying to tell them they were going to the wrong school and they didn’t listen.”  I stroked her head.
“Emma goes to new school now!”

“Yeah, Em.  You’re awesome. I am so, so proud of you!”

As she and Richard left, I thought about all our children who are trying so hard to communicate and yet aren’t being heard.  I imagined Emma sitting on that bus trying to make them understand that they were going the wrong way.  Using the right words, but not being understood. And finally, because no one was listening, no one was considering that she actually knew what she was talking about, she began to scream and bite herself.

My dream for Emma is that she be able to advocate for herself.

Now she is and I could not be prouder.

Em and the School Bus

Related articles