Light It Up (again)

Dear Danny,
 
You are now 5 ½ years old.  You love music, playgrounds, cars and milkshakes.  You are in the home stretch of your Kindergarten school year, and you read and write a year ahead of your grade.  You hate haircuts and the word “no”.  Your life is entirely literal and genuine and you err on the side of love almost all of the time.  You are completely incapable of lying.  When you are awake, you are singing or laughing almost every minute – something that has not changed since you were 6 months old.
 
And, yes, you have been diagnosed with Autism.
 

There was a time when I might have listed that first – even considered it your most defining attribute.

What a mistake that would have been.
 
 
“But…he doesn’t look Autistic.”
 
You would be surprised how often we hear that, Danny.  Or then again maybe you wouldn’t be, since it has become increasingly obvious in the last year that you hear and understand more of what is said around you than we’d realized.  I’m never sure how to respond to that statement when I hear it because, in most cases, it comes from a place of kindness.  And I agree – you don’t look like “Autism” at all.  You look like our Danny: a perfect gift of God’s creation, the best of your Father and I, greater than the sum of our parts.
 

In many ways we are lucky.  You do not have many of the outward quirks that people are looking for to make a quick judgment about your abilities, or your intelligence.  That your doctors are as quick to label you “high functioning” as they are anything else is a gift that we do not take for granted.  And yet, there is a burden to it that you must carry.  You have your feet planted on both the spectrum and in the neurotypical world, and that balancing act is more obvious with every passing day.  We watch you work to create routines out of chaos; we hear you craft sentences like an artist – choosing your words carefully from a palette it has taken you years to create.  We watch you struggle in a world that doesn’t always want to understand you as well as you are trying to understand it.  If it is possible for us to “see“ autism in you it is because we are witnesses to this work.  And it is work, no doubt about it.

 
But when someone says to me: “He doesn’t look Autistic”, I know that these well-intentioned people are looking for something else.  They believe they should be able to see Autism in the faces around them and whether they realize it or not, they are waiting for some kind of physical sign before showing compassion.
 
We have been taught so thoroughly to show love and acceptance to those who don’t look or act like “us”, we seem to miss it entirely when we are called to show empathy to a person who, at first glance, may not stand out at all.

In less than a month now Danny, you will be a big brother.  And goodness, are you excited.  Now that the house is overrun with baby stuff you ask about your baby brother every day.  We’d told you the baby was coming in April, so yesterday when you realized it was April 1st, you pointed expectantly at the car seat primed and ready in the back seat next to yours.  You already love this baby as much as we do, and that takes my breath away because there were days not that long ago when I didn’t feel like I could trust you with the cat, let alone another tiny, helpless human being.

 
Early on in this pregnancy someone asked me what I was planning to do if this baby showed signs of Autism.
 
Raise him?  Love him?  Release him to the wild?  Again, it came from a place of concerned kindness, but I couldn’t figure out what kind of response a question like that should elicit.  Am I worried about it?  Of course.
 
Of course.
 
But then, I am more worried that I have given the world a reason to believe that Autism is the “worst case scenario”.  That, in our actions as your parents, we have given the impression that you are a burden – an insurmountable obstacle – when the truth is that you are so easy to love.  When the truth is that we spend our days in awe of you.  When the truth is that we are different people than we were when we heard “autism” for the first time.
 
We are not scared to light it up again if that is what it takes.
 


The other day while we were driving in the car I had my window rolled down to enjoy the breezy, 60 degree spring day.
 
“Mommy, put the window up – it’s cold outside.”
“Do you really think it is cold outside, Danny?”
“It isn’t hot.”
“Well, I think it is nice outside.”
“I think it is loud.  Put the window up, please?”
 
So I did.
 
It was an hour or so later in recounting the story to your Dad that it hit me, this incredibly typical and wonderful conversation that we’d just had.  It wasn’t work; it wasn’t therapy.  It wasn’t meant to teach us lessons in how to communicate with each other or scripted to serve a higher purpose of safety or security.  We were just talking – a decadent use of words and attention, the kind of conversation that goes by 100 times a day in many households completely un-celebrated; the kind of conversation that, as I thought about it through the night, brought tears to my eyes.
 
It wasn’t the first time in recent months that your behaviors and achievements – not your diagnosis – have had that effect on me.  I cried at Christmas when you enthusiastically opened presents for the first time.  I cried when we received your first amazing progress report from Kindergarten – the first time they were able to test you and see how amazingly smart you truly are.  I cried when a simple oversight at school caused you to go to class with a sack full of lovingly crafted Valentines only to come home with an empty box.  I cried when I scanned your IEP for first grade and I read the words “General Education Classroom” for the first time in your short life.
I cry a lot these days, I guess.  But this I can say with certainty:  I never cry about Autism anymore.  The big, powerful, hopeless word that entered our lives 2 short years ago, is losing its power over me.
 
 
And it’s about time, because it never had any power over you.
 
 

2 thoughts on “Light It Up (again)

  1. I love and appreciate these glimpses into various little moments and thoughts in your life and the chance to absorb little fragments of lessons and love through them. It's particularly effective because you wield words skillfully and with a healthy dose of honesty. Thank you. 🙂

    Like

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