Saturday, October 18, 2014

A Princess


It wasn't my best parenting moment.   We were already late and trying to get out the door.   I was trying to explain to his brother that I wasn't going to pack him another lunch after he had inexplicably gotten up in the middle of the night, taken his carefully packed lunch out of the refrigerator, and left it sitting in the floor.  He wanted a moment of my time, and I didn't feel like I had that moment to give.  I glanced over from tying a shoe and said "You can't take both the Skylanders and the crown for show and tell.  You have to pick one" And then I started grabbing backpacks and looking for my keys and didn't think about it again until the end of the day.

I saw the sheepishly defiant look on his face as he walked towards me at pick up time.   It took little more than a glance to know why--that crown was on his head.  

"Did you bring that crown for show and tell?"
"No.  You told me I had to pick one, so I brought the Skylanders for show and tell and the crown was some of my clothes."
"So, are you a prince or a princess?"
"Don't be silly.  Of course I'm a princess."

His eyes sparkled in challenge, his head held high, his chin so defiantly pointed that I was suddenly overwhelmed with one thought:

That child is Just. Like. Me.

I told him he made a wonderful princess, but we'd have to find out if the crown met the school's 'no hats' guidelines (Maybe it does?  Some of the girls certainly wear hairbows larger than that crown) and then we began walking towards the door.

As usual he had to stop at every single water fountain on our trek, so I found myself waiting by the front door with some of his classmates as he made his way there.   A little boy began telling me about how cool the skylanders were--my son had shared them during recess.  He turned the corner and two older girls began to giggle.  I didn't hear their words, but immediately the boy my son had shared his toys with spoke up.

"STOP IT!  You do NOT make fun of him.   He is nice and he is kind and he is my friend.   So what if he's wearing a princess crown.  He likes it.   What makes it ok for you to wear a princess crown and not him?"

The two girls stared at the angry little boy in stunned silence as my unicorn walked between them, completely oblivious to the drama that had just unfolded.   He told his friend to have a good weekend and asked me if we were having movie night.   I glanced at the girls--they looked confused, as if their entire world had been turned upside down by one defiant seven year old and the brave classmate who took up for him.  I smiled at the boy who made it his business to stand up for what was right.   I told him to have a great weekend as we walked out the door.

I am in awe of my children.  I watch every day as they inspire those around them, as they make them really think about their own views and actions.   How did I get so lucky that I have a 9 year old who can convince an ENTIRE CLASS to read The Hunger Games and watch Dr Who?   A pair of 7 year olds who defy every expectation, whether it is gender roles or interests or academic success, and who manage to turn that defiance into a battle cry to rally other seven year olds who feel like they are different?  And perhaps their biggest inspiration of all--a self involved woman inspired to see the world anew, to work to help others, to be better than she was in an attempt to be worthy of the amazingly powerful souls that have been entrusted to her care.

Sunday, October 12, 2014

They Need To Learn

We knew it was going to be bad.  The kids' pizza place with the loud animatronic stage show and all of the beeping, buzzing, blinking games.  But a friend's child had her party there six months ago, and the boys remembered how much fun it was.  Especially the laser tag.   No amount of me explaining that it was a slow day or that the stage show set was broken at the time would convince them, so I sucked it up and (practically) gave the manager a kidney to pay for it, and we had our birthday party.  

Before the guests arrived, he was already overwhelmed.   He spent most of the party with his hands over his ears.   He refused to have his picture taken with the giant dancing bear, but he did blow out his candles.   He didn't melt down, but he did shut down.   And he was AWESOME during laser tag.   Still, we knew how close we were to crisis mode, so we sent the other two to spend the night with the grandparents and we took him home, where he spent the next two hours in his room, completely silent.  

We knew we were pushing our luck when we took him out again this afternoon, but there were errands that had to be run before Monday.  We had to drive the truck instead of the minivan he's used to, and there was a LOT of stimming, but we made it through.   We were at the home improvement store, checking out all of the new holiday decorations while Daddy dealt with his errand, when it happened.  

We had ventured to the garden department, and I thought we were alone except for the man who was stocking the shelf, so I let him run ahead of me.  Sometimes, when he's excitedly stimming, I set the parameters (stay in this room, stay close enough to hear my voice) and let him go.   Allowing him to self regulate gives him freedom and increases his ability to cope.  So he was just out of earshot.  I don't know what the family said to him.  I don't think it was cruel, but I heard the sound of the girl's voice and then the mother answering her softly.  And I stepped around the corner to see my son, frozen in his tracks as the little girl looked at him questioningly and the mother smiled almost sadly at him as they walked quickly away.  

I took in the scene and tried to mentally calculate where we were:  What just happened?  How is he feeling?  What exactly is going on?  What did they say?  He is so still-how much must they have hurt him for him to be so very still?  Oh, God, I shouldn't have let him get close enough to them that he could hear them and I couldn't what on earth did they say that caused him to be so very still--

His voice stopped the panicked track playing through my head.  There was anger in his tiny body as he yelled, clearly towards the retreating back of the mother and her child, "THEY NEED TO LEARN ABOUT ME!"

"What do you mean, Love?"
"They need to learn about ME Mommy.  They don't know.  They don't know spinning is fun.  They don't know about ME"
**some incoherent babble and stims I didn't quite catch**
"Do you mean they don't know about autism?"
"Yes.  They don't know about me, and au-zism, and they need to learn.  Because spinning is fun and lights are happy and this Christmas tree smells icky and that red light tastes good and they need to learn about me, not be sad for me. "

And then he grabbed a small light up something and held it above his head like a champion with a gold cup, trying desperately to tell the people who were almost out of sight that the light up, sparkly whatever in his hand held a beauty he could feel with every cell in his body.  That he can smell and taste and hear and feel what others can only see.  

That he was not to be pitied, but envied.

The emotion on his face when I came around the corner that I had mistaken for pain was righteous indignation.  What I thought was an imminent meltdown was the fervor of someone trying desperately to share their knowledge with an unbeliever.

And that was it.  That moment.  That was the moment I knew we were going to be ok.

My son knows who he is.  He knows he has autism.  He will work his butt off to fit into our world, with therapists and apps and exercises that would make a grown man cry, and he will do it with joy.

Because he knows that he is not to be pitied, but envied.

His attempts to fit into our world are not to be 'normal', but rather so that he can share his incredible, amazing world with those of us unfortunate enough to not experience the entirety of what the world has to offer.  

He works not to overcome his autism, but rather to share it.   He wants us to know how red tastes and how a rainbow sounds and how music looks.

Because in his mind, WE are the disabled ones.  We are the ones missing out on the full experience of the world around us.

And We are the ones who need to learn.