Tag Archives: vestibular & proprioceptive movement

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.’

In the Playground – Autism

Yesterday while at the playground, Emma pushed a little boy off of a roundabout.  It wasn’t clear why she did this, though it reminded me of a game they played at camp where the little girls stood in line by the pool and then pushed the girl in front into the water.  (I can hear the defensiveness in this sentence, I know. But let me continue.)  The boy was seated on the edge of the spinning circle, like a giant saucer, filled with a dozen other children.  A few children were on the ground pushing, while running to make it go faster.  The children seated within the saucer were shrieking with laughter and then the little boy went flying off.  The child’s mother, understandably upset, was furious with Emma and yelled at her that this was unacceptable behavior.

I was seated with a friend of ours whose son was playing with Nic.  I noticed Nic staring at me with a horrified expression and making gestures with his hands for me to come.  When I reached him he told me what had happened.  “She just pushed that kid off, Mom.”

“Which kid?” I asked Nic.

“That one,” he pointed to a young child being led away by his mother.  “We were all just playing and this one kid was spinning the thing around really fast.  Emma was laughing and that boy was sitting pretty close to the edge and then Emma just pushed him and he went flying.  The mom got really mad and started yelling at Emma.”

“Okay.  Thanks Nic.”

I made Emma get off and had her sit on a bench next to her father.  I told her she was to sit still until I returned.  I then ran after the mother and her son, apologizing and explaining to her that Emma has autism.  I told her how very sorry I was and inquired after her son, who seemed frightened and confused.  I told him Emma hadn’t meant to hurt him.  The mother told me, with an apologetic look that Emma’s behavior wasn’t okay.  I nodded my head and agreed with her.  She then said, “Oh dear, I didn’t know.  I hope I didn’t scare her when I yelled at her, but I was so upset.”

I assured her that Emma was fine and again apologized for Emma’s behavior.  When I returned to where Emma was seated I said, “Emma.  You cannot push other children.  It is not okay to do that.  You could have hurt him.  Do you understand that, Emma?”

“You cannot push,” Emma said, nodding her head.

“That’s right.  You cannot push.”

“Go back?”  Emma asked, pointing to the spinning saucer.

“No.  You can sit here next to me.”

“One minute,” Emma said.

“Ten minutes.  You will sit next to me for ten minutes Emma.  And you may not play on that again.  You can run around and do other things.  And Em, if you push again, you will go home.  It’s not okay.  You could have hurt that little boy.”  Emma looked down at her hands.  “Do you understand, Em?  It’s not okay to push.”  I watched her for any sign of understanding.  She continued to stare down at her hands, which were in her lap.  “Em.  Do you understand?”

“Yes, mommy.  You cannot push.  It’s not okay.”

It is times like these that I feel at a loss.  We so rely on communicating through speech that these sorts of situations feel impossible with Emma.  She showed no sign of understanding, she wasn’t angry, she didn’t seem particularly upset, if anything she seemed completely baffled by the whole situation.  “Emma.  Why did you push him?”  I finally asked.

“You pushed.  It’s not okay to push,” was her response.

One hears about aggression in children with autism all the time.  Emma, when upset, frustrated or angry, usually hurts herself.  Biting her arm or hand is her most common reaction, but a few times she’s thrown something or punched herself in the face.  It is difficult to witness these acts of violence against herself.  It is even more difficult to make her understand why it’s not okay to hurt herself.

But this episode in the playground was different.  Emma wasn’t acting out in anger, evidently she’d had no interaction at all with the little boy she pushed.  What was going through her head?  Why did she push him?  It’s impossible to know.  But I do have a few ideas, none of which dismiss her behavior, but they do explain what may have happened.  Emma craves sensory input.  Often children who crave vestibular movement can be calmed by having ten minutes or so of it.  Emma appears to never be satisfied no matter how much she gets.  Richard and I have had countless conversations with her various therapists about this.  In our neuro-typical world we call people like this “thrill-seekers”.  In the world of autism it’s called sensory integration disorder –

Someone once explained to me that it’s a bit like having a body part fall asleep and the desire to stomp, pinch or hit that body part in the hope of “waking” it. Roller coasters, swings, trampolines, carousels, anything that moves quickly and erratically are Emma’s way of “waking”.  Pushing the boy was not an act or display of aggression as much as it was an unconscious response to her craving more movement.  It may be that he brushed against her by mistake or perhaps he was too close to her or she may not have been aware of him at all.  Unfortunately none of this helps the child who was pushed or his mother.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

Amusement Parks & Autism – Continued

Emma’s entire system was crashing.

“You have to ask Mommy!  Mommy can I go on the roller coaster with Gaby, please?”   She cried over and over again through screams and tears.

It was heart breaking and anyone with a neuro-typical child would think – oh just let her go on it one more time and then go home.  I even thought this a number of times as I tried to peel her off the pavement where she had fallen in a heap of tears, snot pouring from her nose, her hands made into tight fists while hitting herself in the head, on her chest, legs, arms wherever she could before I, or any of us could stop her.  The biting is horrible because it can break the skin and then there’s blood, and later scabs and enormous angry blue and purple bruises that can last for more than a week, reminding all of us of her agony.  But the hitting – a quick, violent punch to the face is shocking to witness and as a parent, it’s difficult not to feel one has done something horribly, horribly wrong.  How can this sweet, blissful child do this to herself?

Emma waiting for Joe, Nic and Gaby while they ride on the Corkscrew

Richard and I have always said to the children – hitting is wrong.  We don’t do it, we don’t want them to ever do it to each other and until Emma began hitting herself, it hadn’t occurred to us to add – we don’t hurt ourselves.  We don’t hit others or ourselves.  We say it, but I don’t know that it makes a difference.  When Emma’s brain has become set on something, no amount of calm, reassuring logic seems to help her.  No amount of soothing, we just have to vacate the premises.  It’s our only hope.  Kind of like shutting the whole system down, a kind of reboot.  We have tried the other option, which is to let her go on one more ride or do whatever it is one more time and the misery, the abject misery continues.  Like an addict who has to have that drink or that drug even while bringing them no real solace.  There’s no relief to be had at a certain point.

“Emmy it’s going to be okay.  We’re going to go home now.  We can ride the little roller coaster one more time and you can sit with Gaby and then we have to go home,” we told her.

But Emma’s brain couldn’t take in this information it was already in lock down mode.  I gave her a banana to eat and then everyone, our once cheerful little group, now more weary warriors than a family intent on having a lovely day at an amusement park trooped along.  She was able to sit with Gaby on the little roller coaster for one last ride and then we trudged back to the car while Emma kept looking over her shoulder at the wooden roller coaster named Roar.  As we headed home Emma said, “It’s okay, we’ll come back tomorrow.”

“No Em.  Tomorrow we’re going to traintown where there are different rides and then we’re going to Uncle Andy’s wedding,” we told her.

“Different rides,” Emma repeated, sadly.  “We’ll come back soon,” she said.  There was a wistful tone to her words, and we knew it wasn’t likely that we would ever come back to this part of the world.  But there would be other amusement parks and maybe one day Emma’s massive sensory issues will have abated to such a degree that these kinds of episodes will become rarer.

We can only hope.

For more on Emma’s journey through a childhood of autism go to:  www.EmmasHopeBook.com

Amusement Parks – Autism

Emma loved our day spent at Six Flags near Napa, California last week.  Typically Emma can be counted on to ride the most terrifying looking rides, but on this trip she immediately said – no.  She wanted to go on the little roller coaster, the one you get to before the rides called: The Corkscrew, Velocity and Medusa.  While Nic and their cousin Gaby ran off to get in line for a ride that looked as though it went up so high it might require an oxygen mask, Emma insisted she stay and “just watch” with Richard and me.

Emma entering the park

“Really Em?  But it’s going to be a lot of fun,” Richard urged, even though it didn’t look like it would be fun at all, unless you enjoy sky diving.  Gone are the days of the old traditional roller coasters where you actually could put your hands up without fearing death, where the vertiginous climb and then dizzying descent didn’t cause your entire life to pass before your eyes, where you exited the ride feeling intact and not as though you’d just avoided a heart attack or stroke.

“No, no, no, just watch.  Just watch with Mommy and Daddy?”

“Yeah.  Okay.”  Smart girl I thought to myself.  Still it was unusual and the first time Emma has shown anything other than excitement at an amusement park.

“It’s weird.  I can’t understand why she doesn’t want to go with Nic and Gaby,” Richard said, peering up at the tangled mess of metal rails called – Velocity.

“I don’t know.  Maybe it’s her ears…”

“I think she has to go to the bathroom.”

“Or maybe she was scared the last time Joe took the kids to that park a couple of weeks ago.  Remember?  He said that one ride, even Emma was scared.”

We continued to debate what could have gone wrong, but Emma stood firm.  She was very specific about which rides she’d go on and which ones she wouldn’t.  Any ride that caused her to be upside down, was rejected.  Not that I blamed her.  I felt slightly ill just watching the other kids shrieking and whipping around as though they’d been tossed into a human blender, without the blades.

But then we found the roller coaster called “Roar”.  An old style wooden roller coaster, the kind I remember from my childhood and even I felt a little jolt of enthusiasm.

“You could ride this one, Mom,” Nic said to me, patting my arm.

“You think?” I asked.  The thing was huge, but it did resemble the roller coaster I used to love riding when I was young.

“Totally, Mom.  You could do this one,” Nic said.

“I’m going to go too,” I announced.

“You are?”  Richard asked.

“Yeah, I used to love these,” I said.


When the ride was over, Richard said, “I think I broke my neck.”

“I thought I was going to have a heart attack,” I said.

“I’m not going on that thing again,” Richard said.

“That was horrifying,” I added.

“I can’t believe the kids want to go again.”  Richard shook his head in dismay.

“I think I have to sit down,” I said, motioning to a nearby bench as the children ran to get back in line.

By the fourth ride, Emma was beginning to get perseverative, which means she had become obsessive about riding and didn’t want to stop.

“Okay Em.  One more time, but this is the last ride.  Except it was too late, Emma couldn’t take waiting in the line, even though we had a disability pass allowing her to go to the head of the line, there were other children with disabilities also waiting.  She began to bite herself and scream.  Joe managed to keep her somewhat calm but by the time they were at the front of the line, Emma was miserable.

When she gets like this it’s as though her entire system crashes, like a computer.  There is nothing one can do to console her.

To be continued.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

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

The Carousel

Emma loves movement, she always has.  This is Emma riding the carousel in Central Park.

In occupational therapy they call it – craving vestibular movement,  and she does.

She is happiest when she is moving!  And every now and then, I get nervous.

Needlessly… because she’s fine.