Saturday, February 15, 2014

Worth the Wait

He was so tiny.  Emaciated. Weak. Frail. 

His stomach was distended.  Solids will start tomorrow, we said.

The OT gently worked her hand into the always fisted left hand.

And he screamed.  And screamed and screamed.

Hello sensory processing disorder/sensory integration disorder.

He stiffened his body all the time and often arched like this while being held.

It was not normal.  It made us uncomfortable.  It made others uncomfortable.

It made me cry.

His physical needs took precedence over his other needs.

He needed solids and Pediasure to assure growth.  
Malnutrition almost robbed him of his own life.

He needed therapies to work on his sensory sensitivities , 
to learn where his body was in space, and to use his body.

Eventually that hand opened.  He began using it.  He began using his body.  
He grew.  He thrived. He loved being held, but only in certain positions.

And underneath all of that physical was emotional.  

He was the boy who explored every toy by tapping it to his shoulder over and over.

He was the boy who came home with not one but many orphanage related stimulation.

Like staring at his hand.

And laying, flipping his body in rocking motion.  
This eventually turned to sitting and rocking
 when he was strong enough to do so.

He had rubbed the scar on the back of his head (origin still unknown) 
open and scabbed multiple times.  

He had pulled out his hair in a few places and rubbed his head bald in his bassinet in others.

We chose to have him sleep in his own crib when we brought him home. 
 I comforted him immediately any time he woke up crying, upset, or the like.  
But he never woke in fear or terror.  He always had a smile on his silly face.  

I could not rock him, no matter what approach I took.  
This is supposed to be bonding.  Why won't he let me do this?
All the books and webinars and training say he'll get used to it. 
He's just not used to it, right?

How do you know when its your child's emotional or physical issues reacting to your attempts?

You don't.  You guess.  You guesstimate.  You pray.

You cry.  And try again.

You fail.  

Only certain body positions were comfortable to him.  
We cuddled and bonded through play and lots of movement.
He wouldn't attend to books.  
He couldn't attend to books.  

He couldn't use his vision properly and he couldn't hear us.  
All those lullabies I sang to the walls trying to comfort my baby.

He just arched more and screamed at me.

We bonded in other ways, but these events left scars on my Mama heart.
Early on we learned to throw the manuals out on 
all this straight-cut on adoption and his diagnoses.  

AJ was AJ and that was that.

He learned to come to midline and do things with both hands. 
He stopped fisting.  We did many therapies to encourage that left hand.

When he started preschool he still had some rocking tendencies when activities 
were new, foreign, or routines changed.  
The tapping of the toys on the shoulder had stopped.  
He had stopped arching, for the most part.

When he heard the world, more stims fell away.  
His sensory processing made accessing this new sense difficult for him.
Very difficult. 
No matter what we did, what approach we took, 
what method, we could not force it.

The day he put his own cochlear implant on and 
WANTED to hear was a day of celebration.

It never gets old.

The day he watched and attended to Veggie Tales 
for a small snipit of time was a victory.  

The rocking had resurfaced as an odd body rolling motion 
which usually meant his body was tight and he was uncomfortable.  

How frustrating it must be for him to be unable to express when he body hurts.

I've only seen this motions a handful of times in the last few months.  
Progress and pain-free moments have released him from this stim too.

The last few months have left me in awe and thanks more times than I can count.

Once the physical needs were met and being managed, AJ's emotions began to emerge.  
Is it cognitive?
Is it this?
Is it that?

It has taken years.  

Like the night a few months ago he wanted me to stay in his room 
after I had given him his nightly massage.
And wanted me to just simply have my hands touching him.

He would not fall asleep without me keeping my hands on his legs.

What an honor.

"Honey, please come take a picture of this 
because I do not want to forget this moment"

One night he reached out for my hand and wouldn't let go.
And my tears stained his bed sheet.

This last week he snuggled next to me 
and listened as we read books in my bed.  

We moved on to books on his ipad and he snuggled closer 
as I held the screen for him to view. 

He started to drift off about half-way through the Ponycorn story.

His daddy entered the room.  He saw him out of the corner of his eye and smiled.
He looked up at me, smiled, closed his sweet eyes, and fell asleep.

Giving kisses has only happened over the last few months.

Today he came to his Mama specifically to give me a kiss.

When bedtime came and I gave him a kiss, 
he reached up and kissed me back.
Several times.
And I cried.  A LOT.
He giggled.

This boy has a way of healing my heart that I cannot explain.  
We have been waiting for these moments for years.
Such simple things with such profound meaning and purpose.
SO worth the wait.

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