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)