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

I stim.

I 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. I 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.

The one’s for girls.  

Especially adult ones.

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-V. I 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.

Please.  

Getting It: Our Journey to Discovering, Accepting, and Eventually Embracing IT

From Saturday, 20 August 2011 post on my personal journal:

I remember when I first realized we were going to be parents. It was a miracle and surprise, and although we feared we weren't yet ready for our unexpected blessing, we quickly began singing a tune of loaded excitement at our future bundle of joy.  I remember choosing names—I chose a girl name and he chose a boy name.  I remember the wonderful 3-d ultrasound at 16 weeks where we got the news that we would be blessed with a boy, thereafter referred to as E.  And I remember feeling the bliss of expectant parents as we began to dream of who E would be and what mark he would leave on this world.  Would he be like me?  A poet, an empath, a dreamer with his feet on the ground?  Or would he be sharp, detailed, disciplined, and graceful like his father?  Would he be smart like us, would he like concerts and music and seeing the world and reading books about far away places?  Would he have my warm, goofy sense of humor or his dad’s dry wit?  Would our future president-astronaut-physicist-hipster-genius-doctor-son be supercool or supersmart?

Getting It:  Our Journey to Discovering, Accepting, and Eventually Embracing IT

The first day of E’s life was magnificent.  He performed well on his APGAR, his birth weight was perfecto, and a comfy 7#5 oz  and the labor was otherwise uncomplicated.  He immediately won our hearts and from the moment I held him in my arms, we knew that our little buddy would be the most special thing in our world.  We just didn't realize then exactly how special he would be and how much he was going to change our lives.

It was the second day in the hospital after birth, when reality started to hit us.  I remember feeling helpless as a new mom as my perfect little baby screamed and the nurse’s retort was that I was spoiling my baby already by holding him too much and putting him into the bed with me.  She pointedly reminded us that he is a newborn and  that “He’s just adjusting to his new world.  This will just take time and all will be well soon enough.”   But hours and hours of implacable crying hardly seemed "normal" to us.  But we were willing to accept that we were novices at parenting and that we'd have a lot to learn. 

 Despite my Human Development undergraduate work. 

 Despite the many books and research we had done.  

We were simply novices with a lot to learn.

It didn't take long, however, to realize that in terms of adjusting, things were getting bad before they were getting better.

We ran full-on into colic.

I remember one night for Piggledy and I that was especially bad—our E belted full blown screams and ear piercing wails all night long.  For ten unrelenting, unforgiving hours, our little buddy remained rigid-bodied, red-faced, and tear-stained while we traded him from one another's arms. 

We tried everything that night:

We rocked him to the left.  We rocked him to the right.  We rocked him up and down and all around. We rocked him in a chair.  We rocked him on our lap.  We hugged him as best as he would let us with his rigid little body and balled up fists and we fed him and burped him and rubbed his belly and his back.  We swaddled him.  We sang to him.  We hummed, we caressed, we prayed and we cried—big fat tears of defeat and helplessness.   

To this day, thinking of that night still brings me to tears.

That was the first night that the question of whether something was wrong became a fact.  That night, we KNEW that something was just not right with our little boy and it was much bigger than the colic.

We took him to his doctor.  We tortured ourselves with images of painful, life threatening ailments that we couldn't figure out but all that he was diagnosed with was reflux stemming from “overall colic.”  I immediately began an elimination diet to see if it changed my breastmilk. I got down to bread and water hoping to see a change, but alas he was still screaming.  With a heavy heart, I stopped breastfeeding, and we decided to try some formula.  We made a few switches there, little by little, from soy to reflux formula, to other specialty types.  Still no progress.  Our buddy was vomiting terribly, suffering from painful gas, and had messy, malodorous diaper destroying bowel movements.  I remember poring over websites and books, begging to find answers about our growing concerns with our "high needs*" child.  We were stumped.

Maw-Maw proudly Rocking E's
vomit stains after feeding him.

Eventually the “colic” began to wear away and our little boy began to show signs of evening out.  Other than still not sleeping through the night around six months, he was meeting all of his developmental milestones, and some of them rather quickly.  Quickly, yes,  but I won’t say unremarkably.  Each new victory brought with it a covert and unexpected slant.  One such example was his absolute battle with learning to sit up; he was enormously afraid of the new position in space...i.e. he was proprioceptively afraid to sit up.   But with a little time and  plenty of goading, he eventually sat like a good baby, but it stuck with his unique manifestation of anxiety about sitting up to look around at his new world.  Another twist that we found remarkable was in our baby boy's language development.  I remember, at nine months,  that our little guy bypassed the mundane “ma ma” and “da da” for words like “hot dog,” spoken with his little baby voice but the clarity of an adult.  It was, to us, both striking and magnificent.  I remember gushing to my friends and my clients that I just knew I had a baby genius in my care!  I had birthed a genius and the world would be in his hands..."

Yet as time went on, there were some other strange developments to accompany his brag-worthy accomplishments.  I remember one day realizing that my now one-year-old wasn't ever calling my name the way other one-year-olds we knew were doing with their parents. 

 “What happened to his ‘ma ma’ step after all?” I began to wonder. 

 I started taking notice that if he was in serious distress, that he would scream in his sobs to “Moo-m.”  Yet, he wouldn’t ask for me at the dinner table or when we played or when asked to point me out. 

 Looking back now, I can recall a million episodes of subtle head-scratching moments, but we'd always dismiss them.  I even remember at one point casually wondering aloud to friends and family if my child could be autistic.  "He's so different.  He's so unique."  Yet, just as casually as the thought wandered into my head and onto my lips, was it tossed again to the wayside. 

But more occasions arose, more head-scratching, lip chewing, moments of "hmmm," where we realized that our child's behavior and actions were becoming more of a puzzle everyday and we were discovering a great deal more questions were forming than answers.  

Newborn sleep habits that we were once told he would grow out of, quickly became more permanent.  When E approached the nine month mark, we began seeing parasomnias, night-terror episodes that were frustrating, frightening, and frazzling.  We chalked it up to a number of things:  maybe he had anxiety, maybe we weren't stimulating him enough, maybe he was cold, maybe he was hot, maybe he needed a night light, maybe he needed darkness, maybe he needed silence, maybe he needed sound…..we analyzed his sleep environment, our parenting tactics, our lifestyle, even our jobs.  For the next two years, we ran the gamut of sleep training methods approved and maybe even disapproved by all the bigwigs. We found we still had a whole lot more questions than answers, a baby that wasn't sleeping and still having intense diaper occurrences, and a pediatrician with not a single feather ruffled.  Our parenting tactics were beginning to deviate from the norm to make allowances for our child’s unique manifestations and I remember our peers all remarking that we were being overprotective and anxious, that if we just stayed on the beaten path, that we’d realize he’d grow out of it.  

All around us, we heard, again and again, from everyone “just wait and see; he’s going to grow out if IT.”  IT made us feel stupid, crazy, misunderstood, even by our closest kin as we wondered just what IT was he was supposed to grow out of and how we could facilitate its disappearance.

We began to realize after a little bit of wait and a whole lot of see, that, in fact, he wasn't growing out of IT at all.  We realized he was growing IN IT, but we still had no idea what IT was.

The answer hit me, just as unexpectedly as the pregnancy.  It came to me when Piggledy was away and I was doing homework. It came to me out of left field, even though IT had always remained quietly waiting in the dugout.  In the literature*.  On the internet.*  In the videos *.  In my textbook. * In a very small chapter in the back of the baby book—there was our little boy.  I remember feeling torn.  "If I utter this then IT will become true."  If I tell him then, he too, will have to have this same pulse-pounding, heart-wrenching, bittersweet realization.

With the heaviness of despair crushing the room I watched the weight of the facts, in black and white and in boxes checked off with my very own hands as the papers and his heart sank with the lowering of his hands. I remember seeing his heartbreak as it filled his eyes with quiet tears. We knew then what we could no longer deny.

I remember the look on everyone’s face as we did the unthinkable, that we put words to IT, the thing that only happens to everyone else and the look of skepticism and accusation in its wake.  “He is a baby, he’ll grow out of IT!  You are overthinking things!  You are being overprotective!  You should love him just the way he is, not criticize him.” 

But deep down….even if we wanted desperately for everyone else to be right…deep down, we knew that we could no longer deny IT.  Like a film in fast forward, subconscious moments  salient and disquieting that we, as parents had unconsciously tucked away for reference, flitted to the fore of our mind.   IT was both a devastating and relieving realization.

At first it hurt, hurt like death.  There’s that grieving process.  Admitting it.  I mean, not just to others; that is the easy part, but to ourselves, that this is REAL.  Accepting that the image that we created for our child, all the dreams, all our imaginings, all those moments that we looked forward to and had created, in our minds,  were all just figments of our imagination.  We had to accept that the reality was that at age two, we really had no idea of what his prognosis would be, and that it could very well be a much more grim reality that what would have ever conjured on our own.  We had to accept that the truth was that he would probably be bullied.  We had to accept that he might very well live with depression and loneliness and low self-esteem and that even though he spoke words, he may never be communicative. We had to swallow that “hot dog” didn't equate with “super-genius” and that there was a distinct possibility that our child would not even succeed in school, much less become valedictorian.  We had to come to terms with the notion that my child may never have friends, may never have a date for a prom or homecoming, may never find a meaningful, stable relationship, and my little baby may never have a job, live on his own, bear us grand-children....All those subconscious hopes and dreams that we have for our children…things we feel will bring them a happy, satisfying, fruitful, blessed life.  We had to be ready to realize that there was a serious possibility that the future we’d envisioned for him was just that:  our own conjuring and nothing like his destiny. 

At two, our little boy had a vocabulary that could rock the world.  But he could hardly call me Mom.  And he couldn’t tell me anything about himself.  He couldn’t say hi when he greeted me, wouldn't spontaneously wave bye.  Couldn’t say I love you.  Couldn’t ask for a cookie if he longed for the cookies I had.  He could beg with his eyes and hope that I would feel his desperation, but the words just weren't coming to him. Would I  never know my little boy, save for clues I must search his face for every day?  Would he never tell me about his day at school?  Would he never tell me about his own hopes and dreams and realizations???

Still relatively unruffled, his pediatrician had to be coaxed into  referring him for further testing.  He did say words right?

Shortly thereafter, our beautiful blue eyed baby boy was, in fact, diagnosed with Autism and immediately I began calling, emailing, banging on doors for answers to our many questions. What does this MEAN?  Not just Webster Mean, but MEAN in all seriousness of the word.  I used all of the knowledge I gleaned from being a human development major, pored over books, read websites, scholarly journals, connected with people, people who finally GOT IT, people who could help us figure out what IT is and how to deal with it.

In three weeks, E will turn three.  He can use a number of small phrases that are not simply echoed back to us.  He knows his alphabet, from A-Z, can count a few numbers withstanding, to 100.  Knows his colors, his shapes, a few sight words.  Possesses a killer vocabulary, ever growing with his curiosity.  He can ask for cookies, cake, his sippy and chicken.  In fact, he can bok like a chicken while asking for chicken, and can even help me cook it with a surprising ease for a three year old boy, despite that one year ago, his prognosis looked bleak and our hearts were heavy. 

He still prefers small groups and has only one best friend.  He still does “happy face,” a stimulation behavior that somehow calms him and he still runs in circles making weird noises.  He still needs a lot of attention, especially in learning, because his learning style is very different from neurotypical children.  He’s still not potty trained and his still can’t throw and catch a ball, and if you gave him the choice, he’d prefer a quiet day in his room with “Happy Frog”  and Thomas Train over a lavish birthday bash on Saturdays.  But he say’s “I love you.”  Not just parrots it.  He says it.  He MEANS it.  And a little less than a year ago, I wondered if we’d ever anything about who he is inside.

I realize now just how special our little boy is.  I realize, as the doors open for us to explore his perspective, that even though he may be different, that his way of thinking is beautiful just the same.  He has a wonderful, simple (not unintelligent, I say!) undiluted view of the world around him.  Pretenses are meaningless for him and the rules that socially bind us in so many ways are unbound and limitless in his "world."  He is truly free to be who he is, not hiding behind white lies and facades and implicit and explicit meanings.  And as we explore the world in his perception, so is he connecting and learning about our way of being.  He is a boy in two worlds, exploring a new and different world, bringing with him an intriguing way of thinking and refreshing wisdom with his slant.

IT may be a difference, but it’s not a disorder.  IT is an opportunity for us to learn new things.  To learn about new ways to parent, new ways to interact, new ways to perceive the world around us.  I realize that IT is a world that is not wrong or disordered, judged by our own shortsighted standards, but a world of its own with a lot for us to explore, a parallel world that welcomes us if we only take the chance to peek in.   I realize that IT is not at all a limit  but a new set of doors, an opportunity to teach people to see the world through other people’s eyes.

IT is amazing.

We love everything about you—everything—E.A.T.  I hope that this world will have the wisdom to  peek through YOUR doors, see YOUR world, traverse your feelings, and recognize the value of all people in your world and in ours, the way that you show us as you walk through our world.  I hope that IT opens doors for you the way that you have opened doors for us. It is my biggest parent hope and dream and wish  that you realize the beauty of all that you are.

*The real articles that I used/saw/perused.  

Welcome to the Club: Words I wish someone would have told me when our son was first diagnosed.

"I remember when I first realized we were going to be parents. It was a miracle and surprise, and although we feared we weren't yet ready for our unexpected blessing, we quickly began singing a tune of expectancy at our future bundle of joy.  I remember choosing names—I chose a girl name and he chose a boy name.  I remember the wonderful 3-d ultrasound at 16 weeks where we got the news that we would be blessed with a boy, thereafter referred to as E.  And I remember feeling the bliss of expectant parents as we began to dream of who E would be and what mark he would leave on this world.  Would he be like me?  A poet, an empath, a dreamer with his feet on the ground?  Or would he be sharp, detailed, disciplined, and graceful like his father?  Would he be smart like us, would he like concerts and music and seeing the world and reading books about far away places?  Would he have my warm, goofy sense of humor or his dad’s dry wit?  Would our future president-astronaut-physicist-hipster-genius-doctor-son be supercool or supersmart?

I remember, at nine months,  that our little guy bypassed the mundane “ma ma” and “da da” for words like “hot dog,”  and "fantastic," spoken with his little baby voice but the clarity of an adult.  It was, to us, both striking and awe-inspiring.  I remember gushing to my friends and my customers that I just knew I had birthed a genius and that the world would be in his hands...."

(From Getting It: our journey of discovery, 8/20/2011)

    

Welcome to the Club:  Words I wish someone would have told me when our son was  first diagnosed.

An open letter to parents when they first get a diagnosis:

Dear Parent who is where I once was, not so very long ago:

I want to tell you what I wish I had been told.  Wish I had heard or known when I struggled with our son's diagnosis.  When we were given nothing but fatalistic prophecies by others who had been in our boat.  When we mourned the "loss" of our only son, E.....  

When you first get that diagnosis, I want you to close your eyes.  Take a deep breath.  Mentally pack your suitcase to take a journey that in your wildest dreams, you never were prepared for.  

Then cry.  It is okay to cry because:

It will hurt.

In the beginning, I always like to refer to the Welcome to Holland anecdote. 

Google it. 

It's a simple metaphor for your grief.

Let it sink in.

And then let me give you some insight I wish I had been given at the time that our son was diagnosed.

This going to seem invalidating at first.  I want you to know it's not.  

Your child will need you to understand this.  

   You haven't lost anything.

It seems like it. I know it.  I've been here.  

And it hurts.....hurts like hell.

And that is normal.  Don't let anyone else guilt you otherwise.  Grieving is normal and healthy and if you never face it down, you will live with it the rest of your life.

But I repeat:  You haven't lost anything.

You see, we are promised nothing  of our lives at our birth or at the birth of our children, although we all like to believe that we are.  Inherently its those whispers of wishes and promises that so often draw us into having children in the first place. To have the opportunity to relive our favorite childhood memories.  To dress up and dance and be young again.  To color and draw and to give our children the things we never had.  To have new joy as an adult for Holidays like Christmas and Halloween.   

When faced with a diagnosis, we grieve these wishes as if they were concrete promises made between the world and us.....written in stone that our children have so much to look forward to, things and times and memories we cannot wait to deliver.   

 But our children--no matter who they are, what intentions we have-- are promised nothing.

And although that SOUNDS negative, it isn't and I will explain:

When you received your child's diagnosis:

Your slate for your child has been wiped clean. 

Even though that is scary, all children's slates are inherently clean (even though we fill  them with our own expectations). 

There is something liberating in that that you would have never known without running into an issue early on how clean your child's slate is and how promising that really is.

 You see, we really have no control over life:

Our children can be born completely "healthy" and then  develop diabetes.  They can be born with cancer, then miraculously beat it. They can grow up "normally" but become addicts. They could fall into a depression and commit suicide. They could be bullied.  They could be the bullies.  They could divorce time and time again seeking happiness they never find or they could be homosexual and never marry a day in their life. They could graduate at the top of their class and then suffer a brain injury from falling down on the sidewalk. They could be ANYTHING or NOTHING. 

We take for granted those things when we think that A + B will always equal C. 

• But with a clean slate, there is a freedom to accept and live with joy for every single moment. 

With a clean slate, we aren't rushing through A and B to see the results of C. 

While in the process of planning for our child's "new" future, we don't take that planning nearly so much for granted when we see a blank slate and realize the magnitude of what it means to help another human being to find their way in this crazy world.  In fact, it makes us step up in a way we never realized we were capable.  [like this right here.]

We will pay more attention to our children's victories because we aren't comparing them to "averages," "expectations," "the Jones's children", etc. 

And those victories will mean more because they stand alone in comparison only to your child as a unique individual. 

We will pay such closer attention to what makes our children tick; we will discover their unique patterns, like the whorls of fingerprints of their soul.  

We will pay attention to those patterns and learn to work within those very patterns to create outcomes. While soul searching within our children, we will learn so much about ourselves in the process, about our own likes, dislikes, wishes.

 And in this journey, we will also learn that the pain we feel for our losses, they are OUR losses, not necessarily our children's. 

"I love Christmas.  I love the joy and spirit of compassion and giving. My son hates it. I always imagined giving him the things I never got as a child of poverty.  He hated the thought of opening presents.  It hurt me to feel like I would raise a child who hated Christmas and I felt that, at first, my son was LOSING OUT on Christmas or that as a parent, I was getting the raw deal.  The proverbial shaft. My son, instead, loves Halloween, the silly, whimsical merriness of dressing up and meeting strangers. It wasn't my favorite holiday before; sometimes I skipped the celebration of Halloween altogether as an adult. I PERSONALLY felt like Halloween was less important than Christmas.  But then I saw MY Christmas joy on my son's face as he looked in the mirror at his facepaint and costume and I realized that everyone's Christmas is different and that's okay.   And then I stopped projecting that impression on him that my way was better, that I knew what he needed to be happy;   and then I began followed MY SON's cues, and lo and behold, Halloween has become a "season" for my family and we look forward to seeing the joy it brings our son every year that brings out our giving, compassion, our "spirit," as I had always hoped with Christmas.   Yes, I had discovered and learned to share HIS joy, HIS expectations, and learned that while we share a family and experiences, that ultimately this was still HIS LIFE and he had a right to build it in the manner best for him.  I learned that him not loving Christmas is MY issue, not my son's and I stopped projecting MY expectations of his life onto him.  Over time, my grief began to abate because I discovered a wiped slate that my SON could create his life in; where I could see the joy I wanted for him brought to him by his own uniquely favorite things, times, and places. Holidays were no longer based on expectations that I had for no other reason than he was born and I loved him. There is freedom from stress in that and freedom for your child to learn to love HIS or HER OWN identity, his OWN slate because he is comparing only himself to himself. His slate can remind him that today he is a better person than he was yesterday, not better than anyone else nor any worse than anyone else.  Just apples and apples.  I have now helped my son to fill his slate with HIS strengths, HIS personal satisfactions, to catalog and understand HIS weaknesses, HIS successes, HIS wishes, HIS expectations, HIS favorite holiday seasons. We have paid attention to HIS patterns and learned the secret to helping him harness HIS abilities to mitigate some of his challenges. He is building his own life at his own pace meeting his own goals and on his slate, this leaves room for celebration, not mourning. He doesn't have to feel like he can't measure up to expectations that were never meant for him.  His personal slate has left no room for him to come up short compared to others and so he slowly builds the confidence and worth he needs to be the best HIM that he can be."

 He has flourished. 

I have flourished. 

Please, don't mistake me.

I'm still a little wistful over MY losses; losses like Christmas or the Zoo or weekend birthday parties or the County Fair.

...But my perspective  has grown  and I have learned that these never  were his losses if they were never his loves in the first place.  Mourning them for him only speaks that I am still living by my expectations, in the land of promises and wishes that were never mean to be. 

"The answer hit me, just as unexpectedly as the pregnancy.  It came to me when he was away and I was doing homework. It came to me out of left field, even though IT had always remained quietly waiting in the dugout.In the literature.  On the internet.  In the videos.  In my textbook.  In a very small chapter in the back of the baby book—there was our little boy.I remember feeling torn.  "If I utter this then IT will become true."  If I tell him then, he too, will have to have this same pulse-pounding, heart-wrenching, bittersweet realization.

With the heaviness of despair crushing the room I watched the weight of the facts, in black and white and in boxes checked off with my very own hands as the papers and his heart sank with the lowering of his hands. I remember seeing his heartbreak as it filled his eyes with quiet tears. We knew then what we could no longer deny.

At first it hurt, hurt like death.  There’s that grieving process.  Admitting it.  I mean, not just to others; that is the easy part, but to ourselves, that this is REAL.  Accepting that the image that we created for our child, all the dreams, all our imaginings, all those moments that we looked forward to and had created, in our minds,  were all just figments of our imagination.  We had to accept that the reality was that at two, we really had no idea of what his prognosis would be, and that it could very well be a much more grim reality that what would have ever conjured on our own.  We had to accept that the truth was that he would probably be bullied.  We had to accept that he might very well live with depression and loneliness and low self-esteem.  We had to swallow that “hot dog” didn’t equate with “supergenius” and that there was  possibility that our child would not even succeed in school, much less become valedictorian.  We had to come to terms with the notion that my child may never have friends, may never have a date for a prom or homecoming, may never find a meaningful, stable relationship, and my little baby may never have a job, live on his own, bear us grand-children....All those subconscious hopes and dreams that we have for our children…a happy, satisfying, fruitful, blessed life?  We had to be ready to realize that there was a serious possibility that the future we’d envisioned for him was just that:  our own conjuring and not his destiny.

What does this MEAN?  Not just Webster "mean," but MEAN in all seriousness of the word.  I used all of the knowledge I gleaned from being a child and family studies major, pored over books, read websites, scholarly journals, connected with people, people who finally GOT IT, people who could help us figure out what IT is and how to deal with it.

In three weeks, E will turn three.  He can use a number of phrases.  He knows his alphabet, from A-Z, can count a few numbers withstanding, to 100.  Knows his colors, his shapes, a few sight words.  Possesses a killer vocabulary, ever growing with his curiosity.  He can ask for cookies, cake, his sippy and chicken.  In fact, he can bok like a chicken while asking for chicken, and can even help me cook it with a surprising ease for a three year old boy, despite that one year ago, his prognosis looked bleak and our hearts were heavy. 

(from Getting It: our journey of discovery 8/20/2011).  

But today?  Today, I know better.  Today his slate is full of his handiwork, beautiful artistry all painted on by him, in colors and mediums and shades he chose.  It's beautiful, unique, and nothing I could ever have imagined by myself and the result is the most beautiful thing I have ever seen.  I remind myself, it's not my job to fix IT or change IT or to mourn IT, but rather to help him to embrace himself, his IT and his everything in between.  The rest--it's up to him...."

E, now at five years old:  reading on the second grade level, social, verbal (actually verbose, but hey, who's complaining??).  (First Day of School 08/08/2013)

Stress, the One-Eyed Demon & his Friend, the Fifty-Fingered Darkness

Liane Kupferburg Carter wrote an article at Autism after Sixteen entitled "Seeing Clearly" regarding one sneaky way that stress has affected her physical health; vision damage.  This is a big subject in our house--stress and its many manifestations--and our family has long been stressed past our healthy boundaries.  The most stressful part of all is letting go of our unrealistic expectations for living the lives we were given and accepting that there are some parts of life we cannot control and loving them for what they are.

And recently, one of my favorite bloggers, Leigh Merriday from Flappiness is... updated her blog post titled "Somebody's Knockin'" regarding the  effects of the stress of parenting a special needs child and the depression that lingers in the corner beside it, waiting for an  opportunity to reach out a hand and lead us into the darkness.

It inspired me to write this post.

Scratch that; I have needed to get this out for a long time.  Leigh Merriday's post inspired me to find the energy and the will to write this post. I knew this had to be said.  Out loud.

I need to write this post.

I need to write this post.

Stress, the One-Eyed Demon and his Friend, the Fifty Fingered Darkness...

I used to be smart.

I used to consider myself a woman of utmost competence.

But just now, I typed confidence instead of competence.

I was thinking competence, but I wrote something else.

I deleted that word.  Found myself frustrated at my mistake.

A mistake that four years ago, I never would have made.  And would have cringed if it was made by someone else.

I used to have a MENSA level IQ.  I was gifted, really, and I had the scores to prove it.  I considered myself a competent, capable young woman.  There was very little I considered off limits to what I could do as long as it was something that was physically in my power.  I made a habit of pushing my boundaries regularly and would flourish well in a respectfully competitive environment.  I could hold my own.

I never minced my words.  Never mispronounced or mispelled a thing.  And I cared for the religion of clear speaking enough to help others if they found themselves woefully mispronouncing words.  Always used the holiest standards of syntax and grammer.  Always doing my duty by scaffolding others when their grammer and syntax showed want because I cared; I really cared enough to be helpful and lead them grammatically through the straight and narrow. I was an English teacher's dream student, a literature master's best friend.  Once, I was an editor, an award winning in-house literary journal designer and editor for a community college.  I took home editing and literature awards alike at the state level.  I was an accomplished speaker.  Presenter.  Socialite.  Student.  Worker.  Woman.

Capable.

And then we got the news that we were expecting.  It was unexpected, a surprise if you will. (I have always loved the utterly silly use of the word expecting when really for us, it was quite unexpected).  A super surprise, as I wasn't expected to be able to have children.  In the preceding years, my womb had been ravaged by health issues.

I was doing 21 hours of coursework plus my editorship plus a leadership forum when I was in the process of treating my reproductive issues.  It was a couple years after Katrina; the Gulf Coast town I called home was still  quite base.  In between my busy college schedule, at my job, which thanks to broken infrastructure was an hour and a half from my college, I was seeing my doc for my angry womb.  Things were crazy.  Hectic.  Stressful. Especially since my now-husband and I were a fledgeling couple still trying to navigate some rough waters of our own.  And then suddenly, there we were, unexpectedly expecting.

It wasn't really an easy pregnancy. I spent many hours of this pregnancy in tears.   I ended up on bedrest.  Had two scares.  Some placental shearing.  Separately, Piggledy and I began seeing therapists to get ourselves ready for the forthcoming responsibiliy of parenthood.   That we were expecting was certainly our top priority. We attended classes.  We read the books.  We did our research. I brushed up on the curriculum of the development courses I had taken, Associates Degree now under my belt.  I was confident that this, too, I could master.

Eventually, we found our rhythm, Piggledy and I.  Our son was born a couple of months later.  He was beautiful, fair and blue-eyed to our darker features.  He had ten beautiful fingers and ten lovely little toes.  He performed well on his APGAR.  We were utterly thrilled.  For the next twelve hours, we could do nothing but smile through the fatigue as we caressed our new baby's skin.

Twelve hours later, our peace would disappear.  Our son began screaming.  Intense, piercing wails that rocked us to our core.  I was so exhausted.   I had just given birth not twenty four hours before and my epidural hardly worked (scoliosis, anyone?).  Piggledy was right there through it all with me.  He, too, was exhausted.  We tried everything.  Eventually, the other babies in the ward were wakened by our screaming, squealing baby and the nurses began popping their heads in to assure themselves that we weren't slowly gutting our newborn son.  None offered us anything beyond what we had already tried.  "Swaddle him."  "Rock him."  "Burp him."  "Rub his belly."  "Try formula with your breastmilk."  "Relax, he can feel your tension."

Then she came in.  We thought at first she would be Nurse Save-a-Mom  and that she was coming to help.  By this time, several hours of crying, we expected someone would spare a shred of humanity and step in to guide us through.  I laid in bed, my baby crooked under my arm while I rubbed him and patted him expectantly, and I looked up at her with imploring eyes.  I saw her mouth open and I clung to every word;  her sage wisdom that day: "..Should have known it would be you to give in and spoil your baby." 

It rocked me to my soul.  Every ounce of confidence I had in my parenting skills bled to my toes and down through the floor at that very moment.

It has never fully returned.

And the crying?  It didn't stop either.

We spent two years of utter hell trying to figure out what was wrong with our child.  Upon bringing him home, he screamed wickedly all through the night.  We brought him to his doctor who said "gas!" And sent him home.  At six weeks old, he screamed one night for ten unrelenting, torturous hours.  By this time, he'd vomited  at almost every feeding.  "GERD!" she swore.  His sleep schedule was awry; we were lucky to get three hours of sleep a night, barely functioning at home and on the peripherals at our jobs (once I left maternity leave).  "Bad parenting!" She claimed.  At nine months, a new phenomemon of parasomnial awakenings began that threatened to wreck what little sanity we had remaining; he would wake screaming like someone was repeatedly stabbing him. Each episode would last for up to an hour and it wasn't uncommon to have as many as six episodes in a night.  I would sit on the floor, wait till my baby was conscious enough to touch (for when he wasn't, he would not recognize us and he would kick and thrash), then rock him with tears in my eyes and my body shaking with adrenaline and fear.  My baby is hurting and I feel so helpless, I would think. "Bad jobs!"  the doc exclaimed.    We were living in a recession period in a town hit by several disasters including Katrina and the BP oil spill.  Our choice was either to quit work and draw government assistance or keep working despite that we both were in the service industry, working until ten PM some nights.  We wanted more for our son.  While I did quit work (but continued in college), we found no reprieve from our son's symptoms.  At around ten months, I remember thinking...there is something definitely wrong with this picture. I tried to put my finger on it.  I told close family and friends about my concerns and of what I thought we were seeing.  I think I know what this is...but then I was chastised by everyone.  How dare you judge your child that way!  Love him unconditionally for who he is; don't be that mom who compares her kids!  The thought that I could be not loving my child right quickly shut me up.  They made us feel like incompetent, overprotective, unloving parents. 

At one year, we figured out that his "baby bowel movements" were not normalizing either, evolving instead turning into malodorous, wet, constant explosions.  We kept thinking to ourselves, this can't be right, it can't be healthy.  My baby is hurting and we are helpless to stop it!  "LACTOSE INTOLERANCE!" the doc prescribed.  "Give baby less milk!" We tried to tell her the Lactaid wasn't working and nor was switching to soy.  She told us that our son's bowel movements were his version of normal.  Normal.

By this time we had slept maybe a total of 20 hours a week for a year. The pediatrician was sick of seeing us, sick of our "ignorance."  (Have I ever mentioned that I have a MENSA level IQ and that my husband, too, is brilliant, or that my college core was human development....with a pronounced emphasis on the critical first years of a child's life?)

Why didn't we change health providers?  Well, I wasn't working for one. We didn't have enough money to start over.  We were barely making ends meet as it was. And even if we did have the money to start over, our confidence in ourselves as parents was utterly shot.

It took us until my son was two and a half to start getting answers.

I saw it there on the internet one night.  While working on an assignment for school.  On a You-Tube video of a child who looked, jabbered, and played just like my son.

Autism.

With severe gastic disturbances including ulcers (which we now know for a fact have caused him pain all those screaming nights).  Casein intolerance.  Peanut allergy. Asthma.  Hay fever allergies.  Night terrors.  Sensory processing difficulties.  Delayed development.  Dysgraphia.  Hypotonic muscles/difficulty with long walks.

Autism.  Like I suspected so early on.  When out of love for my child, my worries were hushed by everyone else.

He is now a couple of months shy of five years old.

My memory is only a fraction as effective as it once was.  My recall mechanisms are pretty-well shot, I have difficulty transferring information from my short- to long-term memory.  I have lost a profound amount of my once vast vocabulary.  I struggle sometimes to make coherent thoughts.  I stutter sometimes because words and thoughts just leave me in mid-speaking.  My ability to multi-task has diminished significantly.

I feel lucky somedays to still be verbal, even if I am not nearly so effective anymore. 

I lose everything.  Everything.

I often forget dates, important tasks, and things that people tell me.

I am lucky to remember to brush my hair somedays. 

I feel rather silly when I try to have conversations somedays.  In fact, I think I'd go so far as to say I feel stupid.  Very stupid.  Incapable.  Incompetent.  A shell of my former self.

I have several health problems.  I spend more time than I'd like being sick or feeling unwell enough to function as I need to in order to be an effective person.  I feel awkward in social situations sometimes, more awkward in work situations on those days when I am lower functioning.

I had gone back to work after graduating college only to realize that a career may be a dream I never realize.  We live in constant fear of our son falling into his bad sleeping patterns (ala overstimulation); when he does fall into those patterns, it's like PTSD to think relive the fear that they will worsen.  Our son is still not BM potty trained.  We are ever vigilant that our son not see bad behaviors from other children.  We filter everything for him instead so that when he does see bad behaviors he does not see them as something to emulate, but rather something he is informed about as being inappropriate.

Parenting is important to us.  Although I never recovered my feelings of being as capable as I once felt, my husband and I have at least learned that we are effective right now.  We practice Conscious Discipline (Dr. Becky Bailey).  Everything is a lesson.  Every moment is a learning moment.  Every moment is a moment for us as parents to learn how to be better models for our son.

Which is why I needed to write this post.

I had to own the stress and its presence. 

I had to acknowledge the Darkness so that I recognize it when it appears.  I had to own the new person I am so I can be the best parent for my son and best wife I can be.

It hits me sometimes.  Very, very hard.  Sometimes, when I have seen my son off to school, I go back to sleep.  Sleep until I pick him up.  Sleep for hours.  Because the only thing that gets me out of bed is making sure he is well-cared for.  Sometimes, I struggle to be social, even with my own friends and family I know who love me because I just don't have the energy it takes to think about what to say anymore and because I feel like I have nothing worthy to say.  My life is consumed by parenting.  I don't have cool news about my job.  My son's school schedule keeps me from making true community committments that might be fodder for conversation.  I don't always have the effort to wear anything but my pajamas from the night before, riddled with hair from my kitty who likes to sleep in the crook of my arm when I am down.  No make-up on my bad skin.  Hair a mess.  I look like I might look like a crack-head.  Actually, if I were to be more accurate, like a methamphetamine user.  My eczema and psoriasis has worsened under the stress.  I am spotty with zits and blackheads from head to toe.  I just turned thirty but have Bride of Frankenstein gray streaks peppering my hair.  I naturally have a gap in my teeth so when I'm unkept, I just look like someone scary.  And then I open my mouth and the words don't come like they used to.

And the Darkness will be present.

And sometimes, I have clarity and perspective and I feel just fine.  Like today.

It is now taking me two and a half weeks to write this post. 

Because it is emotional for me.

It is painful.  Cathartic.  Happy. Sad. 

Because I need to be okay with taking baby steps. 

I don't hate my life and I don't hate autism.  And despite being disillusioned by what stress has done to me, I don't  hate my life and am not bitter.

Actually, I feel blessed beyond what I could write.  I love my son.  I love everything about him.  He is actually quite happy and well-adjusted.  Autism has brought my family closer together, despite the stress.  My husband and I are a team.   Best friends.  On the same page.  Not to say we don't have our moments, but we have had to get our priorities straight early on with our son's needs and so we don't waste our energies on pettier things. And I like my life per se', and would be quite okay if stress didn't actually affect us this strongly.  And knowing that feeling vulnerable to stress has made us more vulnerable to Dark days.

I know that the Darkness is a product of stress, not my son's autism.  My son could have been born a million other ways and it would still be stressful.  He could have been born with Cystic Fibrosis (a diagnosis I have always feared), could be blind, could have Down Syndrome, could have a metabolic disorder, could have juvenile diabetes, could have a rare disorder that could kill him before age ten and there still would be stress.  And although parenting a child in a world not made for my child is stressful, so is a world not made for individuals with addictions, with depression, with Fibromyalgia, with Lupus, etc.  My son could have had any of those diagnoses and the stress would still be with us. He could never have been born at all and I could have this stress.

I know that allowing the Darkness to take over helps no one, least of all my son. 

So I write this post.

Last year I made a set of New Years Resolutions, including mostly ways to de-stress ranging from forcing myself to do things that I don't feel I have the energy for, to painting my toenails again, to feeling less guilt when I do take time for myself and most importantly, including to go back to writing, once an avid passion of mine.  Something I could be good at.  I told myself, I would write a blog without stress, without feeling like a failure, thus is born, Higgle-E-Piggledy, the first-draft rantings of an autism mommy.  Proofread if I have time.  If I want to.  If I feel like it.  And not feel bad about my grammar.  About incomplete sentences.  About misplaced modifiers and dangling participles.  Because this isn't about what I don't do the way I used to.  This is about getting it out and talking about it.  Sharing.  Connecting.  Even if it's imperfect.

It's about finding myself now and loving me regardless. 

Taking steps to get there.  Baby steps.

Letting the world know so I can be held accountable to reestablishing my person and so the world can, too.  So they can understand the journey. 

So I can be the best person, parent, wife, daughter, friend I can be.  Even if it means I'm not the best student, speaker, writer, woman, presenter, socialite. 

Because even if I'm not who I used to be, I'm worthy. 

And my son and my husband deserve to know that they are worthy, too.