Tag Archives: self-care

A Traffic Jam and an Analogy

Yesterday we had to rent a car (we New Yorkers often do not own cars, one of the many wonderful benefits of living in such a vibrant city!) to go see Soma, who was about an hour outside of the city.  (For more about Soma, you can click on her name above, which will take you to her website for the Halo Center.  You can also read more that I’ve written by typing either Soma and/or RPM into the search box on this blog.)  We thought we’d given ourselves plenty of time by renting the car almost two hours prior to our appointment, but as luck would have it a lane was closed due to an earlier collision and coupled with the ongoing and seemingly never ending road work on all and any highways in and out of Manhattan, we realized we would be lucky if we made our appointment at all.

When we pulled up, Soma was waiting, we were exactly two minutes late(!) so we jumped out of the car and raced in to begin Emma’s session.  Emma wrote, “What happens if traffic never gets moving?”

Pause.

“You are stuck in a rut.  It’s like autism.  When you have the diagnosis you are stuck in stims and cannot proceed where your actions want to be.  It is always clogged like a caged mind driving through traffic.”

This morning I asked Emma if we could talk more about this as I’ve not heard her talk about autism and stims in this way before.  In fact, Emma has referred to stimming as self-care ‘here‘ and ‘here‘ and I wondered if she’d be willing to talk a bit more about this with me.  She wrote that she would.  She wrote, “Circular stimming begins in self-care and can aid focussed mind, but samples hasty stress when consumed by the stim.”

“So what I hear you saying is that the stim begins as a way to self-care, but can also become the cause of stress.  Is that accurate?”  I asked.

“Understand that I cannot always filter all that is going on easily.  My string grounds me.  Not having it can cause horrible stress, but it can also distract me.”

I asked Emma if there was anything that another person can do that would feel supportive and encouraging, but that might also make that struggle easier.

Emma wrote, “Don’t force me to put it away, but instead gently remind me to stay in the task asked.”

“Is it okay to suggest you hold the string in your left hand or wrap it around one hand so that you’re still free to type?”  I asked.

“It is nice to be helped with kind suggestions, not nice to be stripped of any say in what is being done.”

“Okay, I totally get that,” I said.  “With Soma you wrote, “What is wrong with the world?”  Then you answered your own question by writing, “In fact nothing is wrong with the world.  We are the problems.  We are not right.  We see things and create a problem.  I don’t have autism label on my forehead like Soma’s dot.”

(Emma was referring to Soma’s “bindi” the red dot Hindi Indian women often wear.  Soma, being Soma, made a joke and did not take offense.)  Emma then wrote, “But I have to walk around all my life with this label.”

I asked Emma if she’d talk a bit more about this and asked, “Do you feel if you didn’t have a diagnosis, people would treat you differently?”

“People see me, think she is different, forgetting that I have feelings like they do. If people understood what autism really is, it would not matter, but people don’t, and so it makes life much harder.”

“So it isn’t the label or the word “autism” that bothers you as much as what that seems to mean to so many people?”

Emma wrote, “This is the biggest problem and causes mistreatment and misunderstandings.”

“Thank you so much for clarifying all of this Emma.  Do you have anything to say to parents and educators who are trying to understand?”

“Keep your open mind and listen to the people who are Autistic for information about autism,” Emma wrote.

Soma and Emma ~ June 12, 2014

Soma and Emma ~ June 12, 2014

A Stim or “Self-Care”

I asked Emma if I could write a post about her string and she has agreed.  Yesterday she told Soma about her string.  Emma wrote by pointing to letters on a letter board.

“It is sometimes like a pet, but I don’t have to walk it every day. It does not bother me with noise. It helps me think and I can have secret names for it…”

When Emma was around two she had a mermaid finger puppet that she would hold in one hand and run up and down the hallway leading to our front door.  The mermaid had long black hair and she’d watch its hair sway as she ran.  Later, Emma began twirling a strand of her own hair.  She would twirl it around, but then began putting it in her mouth.  The strand would get tangled and knotted and no matter what we did, that strand of hair would escape our attempts to keep it contained.  We were advised to always put her hair in a pony tail, or braid it, which we diligently did, but despite our best efforts, the strand would come loose, wrapped around a sticky finger, wound and unwound; no brush or comb could tame it.

Then, one day at a birthday party Emma caught hold of a balloon string, the kind that one uses for wrapping presents with.  It was yellow and the balloon had long since popped and been cut away.  I kept thinking she wanted the balloon and asked the parent hosting the party if I could take another balloon as Emma’s had popped.  But Emma wasn’t interested in the balloon.  It was the string she wanted.  I was so fixated on the balloon it took several balloons before it dawned on me that the balloon was merely an annoyance and removing it from the beloved string was necessary.

That yellow balloon string was joined by another balloon string, this time blue.  Emma would intertwine the two, twist them together and twirl them.  This then evolved to packing tape, which Emma would strip down to narrower pieces and then gather a dozen or so up and twirl them about.  A few years ago, she began adding brightly colored duct tape to a few of the pieces, thereby binding them together and it became a kind of work of art, constantly changing, growing, evolving.

Now, the packing strips count to over a dozen, some are several feet long, others are shorter, some even less than six inches, but each string is part of a larger whole and when one goes missing, the upset it causes can be terrible.  Still, we have come to understand how important the string is.  When Emma is writing she wraps it around the other hand, or will place it in her lap, or sometimes will even set it down on the table next to her left hand.  But it is always close by.  We have come to see that this is Emma’s version of a stim, or as Emma has described it, “self-care”.

Yesterday Emma wrote about her string with Soma and I once again marveled at her creative and inventive mind.  I have come to see it as a thing of beauty, ever-changing, a metamorphic reminder of life, attachment, movement, and the never-ending dance we are engaged in with ourselves and each other.

A collection of balloon strings

A collection of balloon strings

The string with masking tape.  A precursor to the colorful duck tape that would follow.

The string with masking tape. A precursor to the colorful duct tape that would follow.

The "string" with duck tape

The “string” with duct tape

Soma and Emma

Soma and Emma