Wednesday, August 21, 2013

If You’re Happy and You Know it, Flap your Hands: Stimming and other interesting boxes checked by yours truly


stim a lot.  

Like everyday.  

Maybe about twenty times a day.

I have probably stimmed right in front of your face and you may or may not have realized it.

Until recently, I wasn’t sure that I even realized it.

I saw it in my  toddler son and thought it was the cutest thing.  Only because I used to do it and others pointed and laughed at me did I try to help my son to divert his stimming into something less noticeable.  

My son flaps to a very different tune than most, and I have begun to really realize, so, in fact, do I:

If You’re Happy and You Know it, Flap your Hands: Stimming and other interesting boxes checked by yours truly

My son was diagnosed at two and a half with an Autism Spectrum Disorder.  

The symptoms we read about, the most obvious symptoms, had come to be our definition at first for what autism looked like, symptoms like hand flapping and echolalia and difficulty with expressive language.  Oddly, it was that same definition that made it difficult to get our son the diagnosis he so desperately needed.  You see, when his genes said “autism,” they made sureto include the spectrum in the composition of his manifest.  Our son, while obvious in some areas, is quite nuanced in his autism in others.  Prior to his diagnosis, he could read some sight words and he had a huge vocabulary.  At two and a half, he was pre-reading.  BUT, he was really, kinda, non-verbal.  

You see, he had words, but he really couldn’t use them expressively.  

And there were other things, like the fact that he made eye contact, even somewhat extended eye contact.  It just wasn’t full-on, constant eye contact.  And he was affectionate.  Uberaffectionate.
And that he had sensory issues.  Only he generally didn’t complain about them, or really at first didn’t have the words for them, and I think even still today, to some degree he accepts his sensitivity with the world is well, normal, to him.  It’s just what he sees and does and lives with.

That, and he has a pretty decent pain threshold.  I get that, because I do, too. 

It isn’t until we’re older, I guess that we question why things seem so much harder for some than it is for others.  And sometimes only if we are presented with reasons to question what seems so normal.  

If it is an internal perception, well—how do we know if what or how we are perceiving is different anyway?   

Here’s an example.  I couldn’t read the McDonald’s menu sign for much of my life. memorized my combo number and if they changed the combo numbers my eye would twitch for weeks while I rememorized my usual numbers.  I just assumed for many years that small menu print on the sign was normal.  That everyone had to de-blurrify their combo number.  And then I went to take an eye exam to get my driver’s license.  I totally bombed it and learned, not only that my vision was bad, but that I had eyes that eventually garnered several diagnoses.  

But, in comparison to the norm, I would have never known my eyesight was different.  Or, by what degree it was different.

But, I have digressed, haven’t?

Where, ere to my diversion, were we?  

Yes, nuance.  Not obvious.  Subtle.

So, at five, my son is much more verbal and communicative than he was when we first started his journey.  I find that the more we talk and interact, the more I find that we are alike in our perceptions and thought processes.  We have similar personalities.  We are both people-watchers.  We like to take a moment on the sideline before we dive in.  If it’s big, we like to be briefed or prepared before we engage in it.  If it’s new, we like to think about what it will mean for us.  

So maybe we aren’t yet talking quite Life’s greatest philosophies, my five year old and I, but I see myself in him so much.  

We have a special bond that’s unique.  I get him.  

While things have gotten easier with interventions, Piggledy and I have taken the time to draw back and lick our wounds.  We put a lot of ourselves into giving our son the best start that we could possibly give him.  We didn't sleep; we lived on coffee, adrenaline, stress, and fast food for several long years.  We burned our candles at both ends then melted the remaining wick and the drippings back together and kept on going.  We sacrificed a lot to make sure that where our son most needed it, he got it.  

It didn't come without a price.  It’s my husband’s turn right now.  Getting bounced from specialist to specialist, undoing the collateral damage.  When he’s done, we will have the money to focus on me.  And, me, I’m really a mess.  

You know, this autism parenting thing, it makes you think.  

Like really think.  

When you have to be able to meet the needs of someone whose needs are great, wants are sensitive, and whose ability to name the two is quite diminished, you learn to soul search yourself to understand your child.  In the Grad program for Marriage and Family Therapy in my local University, they seek first to break you down as a person, to help you to grasp your very composition before ever allowing you to attempt the same on any other human being.  I liken it to having to get pepper sprayed and tasered before you are bestowed these tools to use on others.  Parenting a child with autism—it’s kinda like that.  At least for me it was.  Autism made me have to see what makes me tick, what my hopes, dreams, experiences, wants, and needs are.  How I lived within those building blocks of my being, how they intrinsically cooperated with my extrinsic experiences and how they built and colored my ability to judge and perceive the world in which I inhabited, including my human interactions.  The premise here is that you have to own the self so that you aren’t busy projecting it somewhere else.  As a parent, I had to know myself in order to put it aside and objectively learn to understand my son.  

I took my proverbial pepper spray and taser to the face.  

I learned a lot about me in the process.

Like the fact that I stim on a very regular basis.  

My most obvious stim is a direct relation to E’s happy, flappy hands.  Except when I was about eight years old, I did it in front of my family and they laughed me up the road.  So my happy flappy hands are now my happy, tappy dance.  

When I get excited my entire body shakes.  My hands fist in front of me and give spastastic mini pumps of joy.  My hips quiver with joy like an overly happy dog when wagging his overly happy tail.  I give tiny hops of happy as I jump from foot to foot.  

It’s kinda cute.  I’ve heard the word “endearing” a time or two.  Definitely better than being outwardly mocked and laughed at in its prior incarnation  (with all due respect, my family didn’t know then what they know now about autism…honestly, twenty-two years ago, not many of us did).  

I also have tiny stims:  like,  imperceptive muscle twitches and barely visible toe and finger fidgets.  That I do almost constantly.  

I really did learn a lot about me—

Like the fact that for many years, I had extreme food aversions.

So much so that I would willingly starve than eat certain foods.  And even if I liked the way that they tasted, the texture would make me absolutely to the bottom of my stomach ill.  So much so, that my mom cooked separately because she was afraid I’d starve to death.  

I think of the conversation we’d had recently with the local Head Start Director about our son’s diet:  

 “Please, please.  We really need to pack our son a lunch.  It would give us great relief to  know he is eating everyday.

Aww, if he’s hungry enough, he'll eat. They all do. “
“But no, you don’t understand….he doesn't work that way.  He will starve.”

No, truly, it was a journey of self discovery—

  • Like the fact that I have my own restricted interests,
  •  that I become socially exhausted, 
  • that I am almost phobic about talking on the telephone (even if outwardly I am good at it).  
  • Like the fact that I start to zone out if I make eye contact too long.  
  • Like the fact that as a child, my mother had to beg me to brush my hair, brush my teeth, don clean clothes, take baths.  
  • Like the fact that I have to pause between sentences to make my thoughts coherent. 
  •  Like the way that when I am tired, I lose the ability to communicate my thoughts clearly (which annoys my husband to no end, I assure you).  
  • Like the fact that I prefer routines and planning and structuring things. 
  •  Like how I am very sensitive to external heat and cold, but at the same time, I could be cool as a cucumber (despite the vomiting, a physical response from the pain in my body) when my epidural left me half uncovered during labor with my son and I could feel my Obstetrician sewing me back up, but was able to compartmentalize it. (I could only think of how cold I was in the hospital bed.)   
  • Like the fact that as a kid, I would literally ride my bike in circles for hours and hours and sing made up songs.  
  • Or I’d swing on the Oak swing in the back, alone, for hours and hours and hours and structure how I should respond to different social situations or should have responded in the past.  Model it out internally.  Even talk and act it out if no one was looking.  

Like the fact that E and I have a lot of similarities—including the boxes we check, if you know what I mean.

I noticed that while Piggledy and I were struggling immensely in the aftermath of our son’s intensive early intervention, he and I were struggling differently.  As was I as compared to some other autism parents we knew quite well.  

As in, I was regressing like my son does when he stresses.  

As in, despite the physical stress and the kinda off days that most everyone else in my boat was having, I was looking more and more like my son when he doesn’t feel well; when he’s anxious, or stressed, or overwhelmed. 
Like his habits became much easier to understand and empathize.   Because slowly I noticed that many were my habits, too.

And then it came to me.   

In bed one night as I started to really think about it.  When I had to get up and get the iPad at 2am and google it to quell my racing brain.  

The check boxes.

Because until then, even as immersed in autism as my family had become, as I had become, an advocate, ambassador, resource and information disseminator, I had forgotten how nuanced Autism can be, especially in those with strong language development and high IQ.

Family and close friends who haven’t already, I ask that you read this, please.  

And this.

Read and reflect.

A few of you are laughing heartily and are saying “Duh!  I was wondering when you’d see it.”

A couple of you are saying….it can’t be; you look normal to me," (which is what so many people say when they look at my son). 

Many of you are chuckling:  “Well, I’ll be darned.  I did say she is definitely out the proverbial box.”  

I don’t know what I’m going to do with this yet.  

I don’t know if I am going to do anything at all at this point except maybe publish this entry and cringe.  And then gather up the courage to explore my identity further.  See where that goes.

I don’t know if I plan to take this further or not.  Or even if I would qualify for Aspergers as that diagnosis has changed in criteria from DSM-IV-TR to the new DSM-VI don’t know if it would help or hinder to pursue becoming "official."  I mean, I’m not looking to be cured; not that I need a cure.  I don’t need to qualify for anything special.  No need to treat what I have learned to cope with up until recently pretty effectively in the last thirty years.  

In the end, I guess it is the validation that really matters.  

To know that at times like this, when I'm spent, that I’m not crazy.  To learn to judge myself as I judge my son:  fairly and appropriately in regards to our very unique abilities and limits .  

To help my husband to understand that I don’t do the things I do because I am a naughty child who doesn’t want to listen, but rather, like my son, some of the most mundane things are truly difficult.  Even for someone who could qualify in terms of IQ for MENSA.  

For understanding.

For getting a guilt-less pass for being so completely imperfect and recognizing that as human.

To wipe clean the proverbial slate and take it as it comes.

I am sure I do not have to tell you that this has been difficult.

I’ve always been a well-put-together person, but I will tell you it did not come without great effort.  What comes naturally to many has not always come naturally to me socially.  Academically, I have always been ahead of the game and it was enough, enough for many years.  Enough to be respected, valuable, to be ready for a career.  And I have a big heart and I’m pretty perceptive with people—I have a way with them when I am comfortable with them

But when handed a child who takes so much emotional energy, it isn’t enough if none of those things can help
my executive functioning.  I spend all my energy on my son and I find my reserves aren’t what they used to be.  So all my hard work is slowly disappearing and the very quirky, awkward, spastic kid I haven’t seen since near’88 when I was old enough to understand social mimicry has re-emerged (and she’s still rocking terrible hair and long, awkward limbs, and sloppy clothing).   My stimming is at an all-time high.  I am easily more socially exhausted.  I can feel myself slipping and in comparison to my autism parent peers, I realize just how affected I really am by being “too tired to care.”

I just don’t have enough in my to accomplish what I once could;  everyday, I spend all my spoons on my son.  

I am not ashamed to say that part.  That my son gets the best of me.  

But I know that my husband and I both deserve more.  I don’t know how to give more without focusing on what I can’t do.  Or rocking my marriage to have to show the true person beneath that my husband has married, the one who has a lot more flaws than even the bride understood when she said "I do."

So here’s to me learning how to make the most of my spoons. 
And inviting those around me to a table of tea and understanding while I work some things out.

I welcome and encourage input.



  1. This all such a big awareness and pivotal change in your self-awareness...thx for sharing these insights. my thoughts are with you guys as you work on learning where the next steps take you...sounds like the energy levels are now tough to come by, so hopefully you can find a way to be yourself, yet find peace with the other facets of your life. thx again for this post.

    1. Thank you; it is, it really is. And while it sometimes feels wrong because "if it were the case, shouldn't somebody have already caught it...?" It also feel extremely right. My entire life makes sense more than it ever did before. Every day, memories are flooding back to me that suddenly have new--and important meaning. I now have a greater sense of context regarding some of the struggles, anxieties, and decisions I have made in the past. Talking to you gave me the courage to realize that I can be a professional, can be educated, but that there still can be that something more that can go unrecognized. I know this will sound weird to some, but maybe others will understand: there was some guilt involved in even considering that I could become official, so to speak. I felt if I had made it to age thirty without being diagnosed, then I CAN'T be diagnosable, can't be on the spectrum. But I know in my heart ow flawed my own sentiments are; just because no one was there to see my breakdowns, to judge them, to know that they have been a part of me, doesn't mean they aren't there. They have been there all along; only the circumstances were optimal for me to deal with things on my own. The circumstances have drastically changed and I admit how much these things within me are causing impairment. I simply have no more waymto hide them.