Tag Archives: distress

“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

An Interview With Emma About Stimming

What follows is an interview I conducted this morning with Emma about stimming.  Emma patiently tried to explain to me what stimming is like for her.  

A:  Is it okay to ask you some questions about stimming?  (For those of you unfamiliar with the term, stimming is a repetitive action or verbal output.)

E:  Stimming is fun.  And I am in calming and obedient service to those who are in charge.

A:   Are you being facetious when you write “obedient service to those who are in charge?”

E:  (Smiles)  Yes.  (Laughs)  The stim is a great way to roam around feelings that are too intense.  You treat me like a baby.”

A: Are you speaking specifically to me or are you using a more universal “you”?

E:  All people out there.  Bloated feelings despair and anger me.  Almost all feel too much to manage and I cannot be present all the time.

A:  Can you tell me more about stimming?

E:  I am not able to write about stimming because words cannot describe it.

A:  Can I ask some specific questions about it though?

E: Yes.  (Leans over and gives me kisses on my cheek.)

A: Is stimming ever not fun?

E:  Yes.  When feelings are too extreme, even a good stim won’t help.

A:  Is there anything that will help?

E:  A lot of patience and love.  Acknowledge my attempts to self-care and do not cause me more pain by trying to change or control me.

A:  What happens if someone stops or tries to stop you from stimming?

E:  It makes thick feelings worse.

A:  Do you ever feel stuck in repetitive loops?

E:  Yes, but so do others who are not autistic, but they are called passionate and are looked up to instead of looked down on.

A:  Yesterday you wrote: “Raging beasts of pain masquerading as stims cause many to misunderstand.”  Can you elaborate on that?

E:  Stims alter the persistent anxiety of life so that I am able to function as well as I am.

A:  So you weren’t saying stims are painful as much as that they help you cope with the pain and anxiety you often feel?

E:  It is impossible to describe to all who have not experienced a lot of distress.  Day after day I am scared of people’s opinions about me because they can harm me with their beliefs about my lack of intelligence.  People treat those they believe stupid, very badly.  I am not stupid.

A:  I know you aren’t!  You are the smartest person I have ever met!!

E:  (Smiles and squeezes my arm.)  I am intelligent and cannot speak with the same brilliant words that are in my mind.

The timer goes off.

E:  Now we are all done!

A: Yes we are!  Thank you Emma for your patience with me and helping me understand.

Addendum:  I asked Emma just now if I could ask her one more question.  She told me that I could.

A:  Do you like the word “stimming” ?

E:  No.

A:  Is there another word you’d prefer?

E:  Yes, but words are not as meaningful to me as they are to those who talk all the time.

A:  If you could choose any word other than stimming, what would it be?

E:  Self-care

Em with her string!

Em with her string!