Friday, April 01, 2016

Our Autism Story.

I started writing this post in April of 2014.
Today, I've edited it for the last time.
Today, I've decided that I'm done fixing and fluffing.

Time to share.


April 2nd is World Autism Day. Two years ago, this day was not even on our radar.
Today, we celebrate, educate, and advocate.

We thought we knew what it looked like.

Little or no eye contact.
Being 'closed off' from the world around him.
Rocking, stimming, self-harming.
Living life 'in a shell'.

We thought that all of those things together = Autism.

Turns out, sometimes Autism looks just like this:

Pretty dang beautiful.

Not one of the characteristics from my little list fit Carter.  He makes great eye contact for us, he looks for us for approval or help or play, he enjoys the world around him, he has never thrown a tantrum in his life....but Carter has Autism.

We received the official diagnosis in March of 2014.  But in November of 2013, I was called to a meeting at school that completely caught me by surprise.

Because I had no idea what I was in for (I really thought this was just a normal parent-teacher conference), I went to our local bakery and grabbed one cupcake for each of Carter's leading ladies.  His teacher, 2 therapists, and 2 aides.  And one for me, for later.  I bounced into the parent/teacher conference, excited to deliver my cupcakes and hear about how great Carter was doing.

I had no idea how much I would need that peanut butter maple cupcake in just a few hours.

They told me all the awesome things he's doing.  We sat down.  And then my world kind of collapsed.

We talked about some of Carter's quirks.  They ways that he just does things differently - the way he plays, the way he transitions, the way he learns.

The tears came hard and fast - but I felt like those amazing women were cupping my hot, red face in their hands as they said things like "You're the best mom ever" and "It's going to be just fine".

Autism.  It was the one special need I said I couldn't do.  Wouldn't do.  It was too much, too hard, too mysterious.  I didn't know how a family could ever cope with a diagnosis like that.

In one weekend, Autism stole my hope.

CARTER CAN!  This has been our mantra since we brought him home.  Because of Autism, I couldn't hear that within my own head.  Carter Won't.  Carter Can't.  Will he?  I didn't know.

I went to a holiday concert with my mom and grandma the day after the teacher conference.  I was relieved that we were in the back row of a dark auditorium, because hot tears stained my cheeks for much of it.

The words 'Autism Speaks' kept running through my brain.

Autism speaks.  I didn't even know what that meant, because I had avoided all articles and blogs and organization websites.

It didn't matter.  Autism speaks.  That's all I could think about.  Autism speaks.  Autism speaks.  Please, God, tell me that Autism speaks.

Let's just be real.  Autism scared the hell out of me.  I heard moms say that they hate their child's Autism every single day.  If that gives them the fuel and fight and fury they need to deal with this - then that's great.  I applaud them.  But I don't want to hate a part of Carter every time I look at him.  

But how could I love Autism?

We chose Down syndrome.  I always wondered how it felt to receive that diagnosis.  The shock and surprise must have been awful, I thought.  Not because Down syndrome is awful, but because nobody likes to be blindsided by a diagnosis for their precious, dear, sweet baby.

Well now we know what that surprise diagnosis feels like.  And if we ever questioned if we loved Carter like a son, and not just an 'adopted son', we now know.

Our love for him is fierce.  It's strong.  It's real.  He is ours, ours, ours.  And we are willing to do whatever we need to in order to help him.


When we committed to adopt a child with Down syndrome, I was filled with this crazy strength and a can-do attitude.

"We are totally going to rock this!".  We knew it would be hard.  Scary.  Lonely.  But we were totally up for the challenge.

Two years and many tears later, I heard the word 'autism' and my knees suddenly went weak.  The strength that once held me up seemed to be gone, and I just wanted to curl up in a ball.  Where was the can-do attitude?

We instantly felt scared, alone, and were left wondering about the future for this sweet boy of ours.

November - December - January - we struggled.  We were sad.  A lot.  We felt like we were 'different' from all the other Down syndrome families in our community.  I turned down play dates with them, because seeing Carter next to their kids with 'just Down syndrome' brought out all of his differences (and Juli was so sweet and kind and understanding, and didn't push me at all.  Sweet Juli.).  

We wondered lots of things - why us? - why now? - because of the orphanage? - because of us? - will he talk? - will he write? - will he have meaningful relationships?.....what will life look like for us now?

And then.

We met with a wonderful, kind, dear neuropsychologist.  She told us how awesome Carter was, and what a bright future he had ahead of him.  She told us that while he does have Autism, he has many great social skills to build on.

"But what about regression?" we asked, with lumps in our throats, "What about that?"

And again, she filled us with hope.  She explained that if he were going to regress, he probably would have by now.  He's learning, he's growing, he's changing, he's progressing - and everything is going to be fine.  

I talked with mommies who have walked where we are walking.  Just knowing they were available and understood made all the difference.  

We met with therapists who came into our home, answered our questions in the sweetest way, and left us feeling so hopeful about Carter's future.  More on this later :)

Hope, hope, hope.  We needed it.  Maybe they all sensed it.

And this is where we are today - 2 years in to the diagnosis and it no longer makes me weak in the knees. Two years in, and I no longer see Carter's Autism every time I look at him.  I just see Carter. 

We feel grateful for this diagnosis, which has allowed Carter to receive the therapy he desperately needs.

We are hopeful.  Hopeful!  I never thought I'd feel hope again.  We believe that Carter CAN.  He can.  

We are going to rock this Autism thing.  No feeling sorry for us, or for him.

I leave you with one more chunk of hope.  A note from Carter's final Kindergarten report card last year:

"Carter made so many great gains this year as a kindergarten student.  He continuously showed his sweet and persistent personality with a little boy charm.  Carter has already made a long lasting mark on many staffs and peers hearts.  Although Carter's first year of school was a learning curve for all, it was truly amazing!  He has taught so many of us patience, acceptance, flexibility, and belief.  

"Over the past year, Carter has been working on skills that are necessary for him to be successful as a student.  He has learned that 7 hours of school is really long, but that he can make it through the day.  We have spent much of the school year helping him learn how to be more independent within the school setting.  He has made a ton of progress in this area.  Carter has shown us over & over that 'Carter CAN'!"

There you have it.  Hope.

One Thing I Know For Sure: Carter CAN!

1 comment:

  1. I have been following your blog since Carin G. Posted on hers oh so many years ago, about a little boy for whom she was hoping would find his forever family. I was drawn to your family, through your blog, because of your faith and strength and trust in God. I am not sure I have ever commented, before today, but I feel drawn to now. My oldest son has autism. It is definitely a shocking diagnosis, I hear you! I didn't even know what autism was, until I heard the diagnosis from my pediatrician. Over the past 14 years, I have grown to see that autism is a kind of superpower. It has its social pitfalls, sure, but it has some amazing strengths, too. The strengths reveal themselves, bit by bit, like a blossoming flower. They have strengths that they wouldn't other wise have, if it weren't for autism. I have been blessed to know people I would not have otherwise met, like Carin, if it weren't for autism. My prayer for my son, and for Carter, too, is that God will work through these strengths, that He may fulfill the plans that He has in store for them. Jeremiah 29:11 has become my favorite Bible verse. You are an amazing family! I am blessed that you share your story, and I am blessed to "know" Carter! It's going to be an amazing unfolding.


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