05 October, 2015

...the story....another chapter...

Today was going to be my catch-up day.
I had it all planned out.
I had a post all set and ready (in my head) to be typed out, edited and published.
And, more importantly, I had time set aside to write.

But then...

I poured my coffee and sat down to "take five" before waking Mister Man up.
Checked my email.
Scrolled through my news reader.
Clicked in and out of facebook and instagram and feedly.
Opened up timehop for a throwback or two.
And saw this:

6 years ago.  Kindergarten.  One month in.

I remember.

I remember the first week of Kindergarten.  I remember walking into the building, hand in hand, to meet the teacher before the first day.  I remember how hard his hot little hand clutched mine as we cautiously made our way through a maze of sterile hallways all the way down to the back of the school.  I remember being hyper-aware of every sound and smell and sensation...wondering what would set him off first.  I remember kneeling down as soon as we entered his classroom to nudge his chin up so that he would look me in the eye.  I remember shushing him as he started to stim.  I remember pointing out  his new teacher and wincing when his fingernails dug into my palm. I remember how the chaos of all those children and parents and toys and books and wall decor shut him down and set him off all at the same time.  I remember pushing him forward, my legs inching his forward one at a time until we were past the doorway.  I remember him pressing his whole body into the wall, smudging the welcome greeting on the chalkboard behind him.  I remember desperately pointing out all the things I thought he might want to play with.  I remember when, finally, he became so immersed in a plastic set of gears in the corner of the room that he finally relinquished my hand.  I remember the look in his new teacher's eyes: a mix of compassion and confusion. 

I remember the moment when she came over to introduce herself.  I remember how she jerked back, startled, when his whole body began to shake right after she said "Hello".  I remember the look in her eyes.  Her kind eyes.  Her shocked and fearful and kind eyes.

I remember shoving my arm in between them and grasping his hand, tightly.  Pulling him toward me where I could enfold his whole body in my arms and squeeze his core in and down.  An X-back hug.  Proprioceptive input.  Mama-bear mode.  Shut out the world and refocus him. I remember that moment when I realized everyone else had noticed...the room gone silent and still and staring.

I remember tripping over my words as I mumbled about his need for sensory input to help desensitize him to the overstimulation.  And there again, that look of confusion in those kind eyes.

I remember looking straight into those eyes and saying "You do know that he is on the autism spectrum, don't you?  I mean, they told you that, right?"  I remember realizing, even before she answered, that no one had told his teacher.  

I remember turning in all of his diagnostic reports, psych. evals and therapy logs to the main office when I first went to register him.  I remember the inch thick stacks, neatly collated and labeled...three of them.  Copies in triplicate.  

I remember standing there with my arms and legs wrapped around my convulsing child, barely balancing against the table behind me, and realizing that NO ONE had informed HIS TEACHER that she had a student with AUTISM.  

BIG BOLD WORDS in my head.

I don't remember the blur of the rest of that intro-session.  I don't remember how long I stood there wrapped around my son like a kevlar vest.  I don't remember what the teacher said in her introductory monologue.  I don't remember seeing the other students and their parents leave the classroom.  

I do remember when everything was finally silent again and I slowly unwound my limbs and pushed my son out of us and back into him.  I do remember his teacher standing in the doorway, back to us, waving at some other departing family.  I remember when she turned around and walked back over to the far corner we were in.  I remember her slowly, ever so slowly, crouching down to Mister Man's eye level and quietly...ever so quietly...saying "Hi.  I'm so glad to meet you.  I hope we'll become friends." 

I remember him abruptly dropping his head and shoving back into me so that I stumbled.  

I remember sitting down at that little round table in that short chair, Mister Man on my lap and one hand busy holding the plastic gears for him while the other jotted things down with a crayon on a piece of faded green construction paper.  I lectured.  Mami-mode turned off.  Advocate-mode on.

THIS is Autism.
THIS is Sensory-Processing Disorder.
THIS is Communication Disorder.
THIS is ADHD.
THIS is my son.
He likes Transformers and Legos.  He likes deep pressure and squeezes.  He can already read!  But he doesn't talk much yet.  And eye contact hurts him.    
Here's my email.  My phone number.  Ask me anything.  Really.  Call me anytime.  Really.  I can come right over.  Really.   I'll drop everything.  I can walk over in 15 minutes.  Really.  I'll do it.  Whatever you need.

I can't believe no one told you.  

I remember 6 years ago.  I remember the first day of Kindergarten when his bus sailed right past our driveway without stopping, while we stood there.  I remember, finally some 20 minutes later, pushing him onto the steps of a substitute bus...forcing my eyes to smile as I said goodbye.  I remember standing in the roadway, waving both arms and jumping up and down in case he could still see me until his bus was long past gone and the cars behind me were  honking.  I remember how my arms itched and my whole body buzzed with nervous energy that whole day...and that whole week...and that whole month.  

I remember doing everything one handed that day, so that I could clench my phone.
I remember how often it rang.       
I remember how I would answer "Hello" as a question.  And the apologetic voice on the other end...his new teacher wondering how to stop him from shrieking...or shaking...or rocking back and forth because it was disrupting the classroom.  Why was he rigid in the corner?  Why did he get so close to her face when he had a question?  Could he hear her, because he wasn't responding?  Could I come in because he wouldn't stop squeaking...couldn't sit at the table with the other students...wasn't responding to her directions...

The phone would ring.  "What should I do now?", the ever-present inquiry.

I remember the first school party.  I remember arguing with my closet, trying to find the 'just-right' outfit to blend in with these well-to-do, married, stay-at-homers.  I remember being afraid I would embarrass my son in front of his peers.  I remember walking over and signing in.  Smiling and introducing myself.  Adding my plate of cookies to the table.  Pointing out my son...in the corner...rocking back and forth...when asked "Which one is yours?".

I remember.
High-definition memory.
The quick recoil.  The turned down lip.  The words.
"Oh he's the one...um...isn't he...well...something's wrong with him, right?  I mean, he has problems.  Right?   I thought they sent them  to a different school.  My daughter said he freaks her out.  That's what she came home and told me.  She said there's a boy in her class that's kind of a freak.  What is he, disabled or something?"

I remember freezing.  Mute.  Standing there in a half circle of other mothers...no one contradicting or chastening or even making eye contact.  Shocked.  Silent.  

I remember catching my breath...my lip trembling...my whole body starting to shake.  I remember turning away...walking away...rigid...walking toward him and sitting down, right there on the floor next to him, giving him my hand to hold and my senses focusing in on just the two of.  Blocking everything else out and not moving until the party ended.  I remember giving him a hug and walking back down that hallway...signing out in the front office...walking home...
I remember shutting the door and sliding down it and the tears that exploded out of me as I crumpled to the floor.  Hot, angry tears mixed with heartbreak.   

I remember this:

I remember the phone call and the voice.  The principal calling to ask me to 'please speak with him about that shrieking sound he makes sometimes' because it's disturbing other children in his class and their parents have signed a petition to have him removed.  

I remember it all.  

I remember calmly explaining that my son's vocal stim was part of his disability.

I remember her "Well, just tell him to stop it" response. 

I remember that phone call as the beginning of the 6 year war.

I remember it as though it was yesterday.  Because it was.  It was 6 years ago.  And it was yesterday.  And it was every day in between, and many more to come.  

It was raising a special-needs child in a typical-needs world.

And knowing that there would always...will always...be someone that thinks he is...freaky.  

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So I will always be his soft place to land.
And the story will continue...

~Leanna