Tag Archives: autism and obsessions

Breaking Routines

I have written about Emma’s need for routines.  Like many children with autism, the desire to do the same thing, whether it’s watch Mary Poppins for the two thousandth time (not an exaggeration) or go to the Central Park Zoo, followed by a visit to FAO Schwartz and ending with a visit to the American Museum of Natural History, has an obsessive compulsive urgency to it.  Emma has gotten much, much better about being more flexible, but this Sunday morning Emma became fixated on going to the zoo.  Despite the fact she went to the Bronx Zoo with a caregiver the weekend before and the Central Park Zoo the weekend before that, despite the fact going to the zoo is less about leisurely strolling through the various artificial habitats and looking at the animals who reside there and very much about a specific route that must be held to.

During those increasingly rare times I have indulged Emma’s request to go to a place, like the zoo, I end up running after her while she zips from one thing to the next.  At the Central Park Zoo, given her preference, she will begin with a visit to the bat cave, racing past the exotic birds, stand for less than three minutes peering into the dark cave while saying, “Look at the bats!  Be careful, the bats will bite you!” before tearing off, regardless of what I might think to say to engage her in an attempt to slow the routine down, past the Colobus Monkeys and outside again to stare at some other type of monkey who reside on a few strategically placed rocks in the middle of a man-made lake.  Then it’s off to see the old, decrepit and now blind seal, into the penguin and puffin house, then back outside to watch the sea lions being fed.  If we’ve missed a feeding, we must wait until the next feeding.  Emma will patiently sit until the next show and then watch until the last unfortunate fish has been tossed into the gaping mouth of a lucky sea lion, before we are allowed to leave.

But Sunday is the day we try to do something together as a family.  Sunday is the day we attempt to take everyone’s desires into consideration.  Sundays can be difficult.  Nic, more often than not, wants to go see a movie or get together with a family we know who has children Nic’s age, Richard, being the amazing man that he is, is often game to go with the flow and I will do just about anything that doesn’t involve going to one of Emma’s favored haunts.  (Lest anyone think I’m a dreadful mother, may I just defend myself here and say I have been to the American Museum of Natural History several thousand times and would be grateful if I never went there again, literally, for the rest of my life, likewise to the zoo, any zoo for that matter and, while we’re at it, any carousel, anywhere in the entire world.)  It may sound harsh, but there it is.

So when Emma launched in about going to the zoo this past Sunday morning, I said simply, “Not today, Em.”

“Go with Mommy!”  Emma cried pointing at me.  “Just you and me, go to the zoo.”

It was heartbreaking to hear her carefully using the correct pronouns, requesting me, specifically.  Never-the-less I stood firm.  Then Emma brought out the big guns.  “Mommy talk to Daddy,” she cried.  “Mommy talk to Daddy about the zoo.”   It was a stroke of manipulative genius, pitting one parent against the other, knowing that where Mommy wasn’t caving, Daddy just might.  I actually had to leave the room, I felt such a welling up of pride.  She’s becoming quite the negotiator I thought, as I prepared for our “study room” session.

By the time Emma was halfway into our literacy session, the obsession with the zoo had ebbed and when we ended our session with sitting still for five minutes, the obsessive grip no longer held her.   We ended up having a lovely Sunday with Nic and Emma going to their gymnastics class, on the way to Union Square we happened upon an Occupy Wall Street protest, giving me ample subject matter to photograph, before meeting some friends in Union Square.  Emma and I made a brief visit to Barnes and Noble and then home, where we did some more literacy work before Nic and I made custom made hamburgers, cole slaw and french fries for dinner – inspired by the Food network’s favorite burgers show, which aired over the weekend – only ours were better.

Occupy Wall Street Protest

Em waiting for me

The Family – Who’s that devilishly handsome man (Gasp!) with those two adorable children?

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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

Some Mornings

Some mornings are just not meant to be woken to.  This has been such a morning.  Emma lost her balloon string.  A yellow piece of string that was once attached to a balloon.  Emma doesn’t care that the balloon is no longer attached, in fact, she isn’t even remotely interested in the balloon.  It’s the string she cares about and this morning it went missing.  No amount of reassurance, no amount of talking to her about it, no substitutions would quell the storm that emanates from Emma when she is upset.  Emma was beyond upset.  Emma was heart broken, in a panic, utterly stressed out, screaming, snot pouring from her nose, shrieking “I need help!   Mommy!  Mommy!  I need help!” over and over and over again until the words become some sort of hysterical mantra.  It is at this point that she begins to script.  “I know baby.  You threw it!  You cannot throw it.  I need help.  Mommy!  I need help.  Baby, baby you can’t throw it!”  And on it goes, repeatedly, between tears and screams and stomping of feet and then when it all becomes too much she bites herself or hits herself in the face or punches herself in the leg or arm.  And we run around trying to find the damn balloon string or mutter under our breath that we should have thrown the stupid string away days ago, because this isn’t the first time she’s lost it and no substitution will do.

Last weekend when Richard offered her an identical balloon string she said, “Other one.”  And walked away.

No there will be no substitution and all that can be done is to barricade oneself mentally from the screams, try to keep ones patience and get her ready for the school bus because if we miss that, we have a whole new set of problems.  Once we were downstairs the tears and scripting continued.  But eventually, eventually she calmed down enough to play “bat” with me.  We talked about the bus and school and later Joe and study room and how it was going to be a good day.  It got off to a rocky start, but it would be okay.  And somehow, at some point Emma seemed convinced that this just might be true.

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

Progress

At 2:30AM this morning, Emma appeared at the side of our bed.  “Carousel photos?” she asked, her voice tense with agitation.

“Em,” I began in a quiet voice.

“It’s okay,” she interrupted me.  “Take a deep breath, it’s going to be okay.”

“Yes, Em.  That’s right and right now it’s time to go back to sleep.”

“Photos!” she said with urgency.  It was clear, she felt I was not taking her seriously enough.

“Yes, I know Em.  We will find them tomorrow, I promise, but right now you have to go back to bed,” I said getting up.

“It’s okay,” Emma repeated as she took my hand and allowed me to lead her back to her bedroom where both the lights were on as well as a lit flashlight, lay on her bed, amidst piles of books and photographs.

It looked as though she’d been up for quite some time, before making her way into our bedroom as a last ditch effort to find the missing photograph.

She carefully took her blanket from it’s designated pouch and pushed all the books and pictures from her bed to the ground.  “Time to go to sleep,” she said.

“That’s right Emmy.  It’s going to be okay.”

“No school bus,” she said.

“Yes, you have school in the morning, but it’s time to go to sleep now and we’ll find your photo in the morning,” I said, turning out the light.  I sat with her for a second, listening to her breath.  “I love you Em,” I said and then I left.

As I made my way back to our bedroom, I marveled at the fact Emma was not screaming, not even a whimper could be heard from her room.  She had returned to her own bed, having obsessed about a missing photograph, which months ago would have been enough to set her off for a good two or more hours.  Perhaps even more incredible was the fact she went back to sleep, not to rise again until after the rest of us had awakened.

These are the seemingly small events, which added together create a larger picture of progress.

This morning when I got up I noticed a pile of her photographs on the seat of the armchair in our bedroom.  I picked them up and put them near Emma’s bedroom door.  About ten minutes later Emma appeared, carrying the pile of photographs.  “You found them!” She exclaimed.  Though I knew she meant that she’d found them and her relief was all too apparent.