Category Archives: Stimming

Running with Mermaids

When Emma was a toddler she had a mermaid finger puppet.  It had long black hair, sported a blue bikini top and had a blue sequined tail.  At the time, I thought it was the first of what would be many dolls.  I loved dolls when I was little.  My favorite doll was named Maribelle.    Her left hand, the victim of my rage when I was four and hacked off three of her fingers with a pair of pruning shears was a reminder of anger gone awry.  I immediately regretted my actions and attempted to glue her fingers back on.  Crazy glue was not the common item found in every tool box as it is today.  My options were Elmer’s and rubber cement, neither of which could repair the damage.  I then tried tape with no better results.  At some point the fingers were lost or I threw them away, I can no longer remember.  Mirabelle’s fingers, while physically gone, are forever etched in my conscience, an impulsive act I could not undo.  Still, I loved Mirabelle and though I eventually moved on to a series of other baby dolls, little girl dolls and finally Barbie dolls, my first love was Mirabelle.  All these years later Maribelle resides in the blue and silver striped trunk she originally came in, now in an upstairs closet  in my mother’s house.  I have never been able to part with her, my thinking was that if I had a daughter, perhaps she would one day want to have her.

When Emma showed interest in the mermaid, I had high hopes for Mirabelle’s return.  Only, it turns out, Emma’s mermaid did not hold the same sort of feelings as Mirabelle had for me.  The mermaid was the beginning of a series of objects that Emma was fascinated by.  The item that eventually replaced Emma’s mermaid was The Corpse Bride from the Tim Burton movie with the same name.  Then it was Jessie from Toy Story and after that a long stick picked up from the playground.  From there she gravitated to a series of sticks, balloon strings and her current favorite: packing string.  The packing string is a work in progress, held together in the middle with masking tape, then scotch tape, which was then covered in reinforced packing tape and finally covered in turquoise duct tape.  When we were at Granma’s house, Emma covered the turquoise duct tape in masking tape she found in a drawer in my mother’s kitchen.  When we returned home, Emma covered the masking tape with yet another layer of the turquoise duct tape.  It has a certain heft to it and looks like this.

I know a little more than I did when Emma first ran back and forth from our front door through the house and back to the front door with the finger puppet held between her thumb and index finger, the mermaid’s black hair swinging to and fro as she ran.  Today Emma holds her “string” as we call it, in her hand while dancing.  Her string serves as part security object, part stim object, part something else that I am still trying to figure out.  “An attachment to peculiar objects…” is one of many characteristics of autism, but when Emma was little, it was just a mermaid.  Who knew?

To read my most recent Huffington Post piece, click ‘here.’

Vestibular & Proprioceptive Movement

From the moment Emma could walk (14 months – she went from crawling to running) she would do what we used to call, Emma’s circuit training.  This was before we knew she was autistic and didn’t realize that this was Emma’s very specific way of trying to get the kind of vestibular and proprioceptive movement she so craved.  In fact, it all looked so “normal” or “not autistic” that it took me a long time to understand this was a kind of stimming.  For more on stimming from previous posts, go to:  Compulsions & The Velcro Strip.

I was always trying to find something that might engage Emma.  When we were at the toy store, I found a mermaid finger puppet with long black hair and a blue sequined tail.  I brought it home and to my delight and surprise Emma grabbed hold of it and ran from the living room down the hallway to the front door.  When she reached the front door she swiveled around and raced back to the living room.  This went on for quite sometime and I was so excited I’d found a toy that she liked, I didn’t spend too much time wondering at the peculiarity of her “play”.  A few weeks later I found another mermaid finger puppet and a doll’s stroller and brought both home, only to have Emma completely ignore the new blonde mermaid finger puppet, but she loved the baby stroller.

Emma’s favorite circuit training, which was also how we came to call it that, was the obstacle course she would do in our living room, over and over and over and over again.  She ran from the living room couch into the TV area, jumped up on the couch there, crawled through a tunnel we had set up, ran into the kitchen, around the butcher block island, down the hall to the front door and back again.  Even better was to do all of this with the baby stroller, which she pushed along her route, knocking things over as she sped along.  I wasn’t alarmed by her circuit training, after all, Emma’s older neuro-typical brother, Nic used to spin around until he became so dizzy he’d fall down.  Kids do these things, right?  Right?!

When I took the children to the playground, Emma wanted to go on the swings for as long as she could before the lines became so long she had to get off to give another child the chance to swing, at which point she would get off only to get back in line. She wasn’t much interested in playing with other children.  She wanted, needed to swing.  At her special education school she is allowed to go to the sensory gym periodically, the idea being that children who crave vestibular and proprioceptive movement become more regulated when given the opportunity to swing, have their bodies pressed in the squeeze machine, etc.  Only Emma never seems to get more regulated.

The principal at her school laughed and said, “I’ve never seen a kid who didn’t get tired… ever!”

And she doesn’t.  When we are in Aspen during the winter, Emma will ski for five hours, go to the Aspen Recreational Center where she’ll swim for another two to three hours, then climb on the climbing wall before going grocery shopping, where she’ll push the “customer in training” shopping carts, then stop up at the barn where she will do a weight lifting workout before coming home and demanding that we play a couple dozen games of hide and seek.  Even then she’ll get up bright and early the next morning at 6:00AM sharp if we’re lucky, 5:00AM, if we’re not.

Emma – age 5

For more on Emma’s journey through a childhood of autism and our exhausted attempts to keep up, go to:  www.EmmasHopeBook.com

Compulsions

I’ve been thinking a great deal about “stimming” which was the topic of yesterday’s post.  Stimming or self-stimulation is the word used for what many children and adults do who have been diagnosed with autism.  It is the repetitive behavior, often as varied as the personalities of the person engaged in it, used to self-regulate or calm oneself.  Many people with autism suffer from a wide range of sensory issues.  Emma may well experience light and sound differently than I do, for example.  I know she experiences physical pain differently.  A small, seemingly incidental scratch causes her to howl in pain, clutching the injured body part, scratching at it or rubbing it vigorously.  Yet a fall, that looks extremely painful, will be ignored.  Days later a large bruise might appear or swelling, which only makes one that much more aware of how it must have hurt and yet she didn’t seem to notice.

Sometimes Emma will plug her ears with her fingers when someone is speaking, often it is when one of us join her in singing a song.  I’ve noticed she does this when her air conditioner is on as well.  The low hum it makes is something she is unable to tolerate.  All of these examples are specific to Emma.  And it makes me wonder whether there are many other things I cannot know about;  does she see certain colors in a way that is painful?  Are some colors brighter to her, even garish and therefore hurt her eyes to look at?  I know certain sounds hurt her ears, sounds like that hum of her air conditioner, does it merely bother her or is it actually painful?  I can’t know.  What I do know is that if  one was bombarded with images, noise, sensations that I could not verbalize, would I not seek refuge in something I could control?  I don’t know, but I think I would.  Is Emma, when she twirls the plastic backing to the velcro strip around and around, soothing herself from an overload of external senses?  It seems likely.

Yet how is this so different from addictive behavior?  Is it not somewhat similar or in the same general ball park?  If someone engages in hours of video game playing or round after round of Solitaire on their computer or Spider (my particular favorite), how is this not also a kind of stimming?  At the very least it is certainly perseverative behavior.   If the game was just played once or for a few minutes that would be one thing, but what of the person(s) who plays endless games, one after the other?  A friend of mine said to me a few months ago, “Sometimes I ask myself – how many times do I have to win before I’ll stop and say that’s enough?  Because when I win there’s no real satisfaction or feeling that – okay now I’m won, it’s time to stop.  I mean how many hours have I wasted playing a really stupid game on the computer over and over again?”  I’m guessing many people can relate to this.  Even if they aren’t into computer generated games, there are other things many of us engage in, mindless “games” or habits we do that we wish we didn’t.  Consider all the games, video games, obsessive exercising, compulsive eating, compulsive dieting, any and all obsessions, compulsions or habits that get in the way of our lives or health, all the things we do while knowing they aren’t good for us and yet we can’t help ourselves from doing them anyway?

When I watch Emma twirling her strip of plastic, while jumping up and down and singing I am reminded of my own perseverative behaviors, the hours I’ve spent doing mindless activities, all to what end?  Am I too, calming myself?  Is this my own brand of self soothing?  I have harsher judgements about my activities, particularly computer games, than I do of Emma’s activities.  I have even, periodically deleted all games from my computer or mechanical device, only to reinstall at a later date.  Certainly there is a compulsiveness to my behavior and I would even go so far as to say an obsessiveness.  I do not mean to suggest my OCD tendencies are remotely the same as what Emma must go through on a daily basis, that would be insensitive and dismissive of her very serious sensory and neurological issues, but I throw this out as something I’ve noticed and can relate to in a very superficial way.  Of course I could be completely wrong about all of this and anyway I have to hurry so that I can finish today’s crossword before starting my day.

For more on Emma’s journey through a childhood of autism and obsessive behavior go to:  www.Emmashopebook.com

The Velcro Strip

Emma’s balloon string has been officially replaced.  She now carries a long plastic strip, the kind you peel off a self adhesive velcro strip.  How such a bizarre and unlikely item came into her possession is anyone’s guess.

Emma with her plastic velcro strip this morning before going to school.

Over the past year or more Emma has become attached to an assortment of long, thin objects.  The first was a stick she picked up on a playground near the Bronx Zoo.  One can never know when an object will become a coveted one.  But I remember that stick because she wouldn’t let go of it, even when she swung on the monkey bars at the playground.  It was an odd thing to watch her movements so clearly hindered by her refusal to let go of that long stick.  When we made our way to the subway for the long ride home, we told her she could not bring the stick with her.  She didn’t put up a fight and I thought nothing more of it until I saw her, upon our return home, reach down to pick up another stick from the planter outside our building’s front door.

” No Em.  The stick stays outside,” I told her and she complied.

But it became a habit, each and every time we left the house she would find a stick and carry it with her.  A few months later she found a long plastic strip used to bind packages and began carrying, twirling and waving that around while inside our home.

Emma’s assortment of “strings”.

There are a few thoughts on this sort of behavior with autistic children.  Some believe the items should be removed.  The idea being the child should not be allowed to have them as they increase “stimming”.  Stimming – shorthand for self-stimulation is a word, which is much used when speaking of autism.  It is the repetitive behavior the child/person uses to soothe, calm or regulate themselves.  The objects are varied and can be anything from spoons to things like running water.  But some children do not engage an object at all.  These children do things like  hand flapping, twirling, spinning, rocking and even head banging, while others stare at their own fingers that they wave in front of their eyes, others tap their fingers rapidly, hum or grunt, bite or twirl their hair, lick surfaces or smell things.  What marks their behavior from so called neuro-typical behavior such as pacing, doodling and thumb twirling is the child who is autistic may engage in these behavior for hours at a time, often getting in the way of daily living and learning.

Others believe the child should be allowed to stim and feel it is better to allow the child to self regulate.  They believe it is, in fact, cruel to remove the source of comfort for these children/adults who are autistic.  Many people believe learning can take place despite the stimming.

I don’t fall squarely into either camp.  Richard and I have done our best to give her the freedom to have some objects – balloon strings, velcro strips etc. while telling her she cannot bring sharp, pointed or objects we think might accidentally hurt her into the house.  We do not allow her to have her “Coqui” aka scraps of blanket outside her bedroom because she can sit for hours at a time sucking her thumb, which is doing untold damage to her teeth.  When I am working with Emma she may not have anything in her hands as I need her hands free to type, write etc.  But when she has gotten dressed, brushed her teeth, straightened her room, she can race around the house on her scooter, carrying whatever long piece of string/plastic/packaging tape she likes.  It’s difficult to know whether we are doing the right thing, but for the moment this middle ground seems to work or, at the very least, not cause too much damage.

Earlier this morning when I was trying to take a picture of Emma with her velcro strip, she wouldn’t look at the camera.

“Hey Em.  Can you look at the camera?” I asked.

“Say cheeeeese!”  Emma said scrunching her face up into a hapless and obviously forced “smile”.

“No not like that.  Think of something happy.  What makes you happy?” I asked, pointing the camera at her.

“Mommy makes me happy,” she whispered.

And that makes me happier than she can ever know.

For more on Emma’s journey through a childhood of autism and arbitrary items that hold her interest go to:  www.EmmasHopeBook.com