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!

Wednesday, March 23, 2016

Macy's First Party!

This past weekend, we had a house full of love. Everyone was here to celebrate Macy's First Birthday.

// Quick Disclaimer: I don't go all-out for birthday parties. I sometimes would like to be that family that always has huge, fun, creative parties. But the money! And the time! And the mess! Oh, the mess! We do FIRST (or Fourth-st if you're Carter) birthday's big, but after that we just do little family gatherings. //

Twenty-seven people who love our Macy-girl a whole lot came over to prove it.

What else can I really say? Our kids are loved. The rest is just extra.

{And really, how could anyone not love that face?}

Because being one is hard work, naps are necessary. This little one-year-old naps in the morning and the afternoon, so finding a party time was tricky. We decided to do a 'brunch' party and serve donuts and muffins!

Carter thought this was a good idea. As you can see, he fully supported our decision.

It was fun having so many little helpers around. Macy welcomed the help this year (because opening presents is hard work) but next year might be a different story :)

And if the helpers get in the way, the birthday girl can just climb over them.

I'm not as excited as I look - really. We make this face to Macy, and she copies us. It's pretty adorable.

All throughout the party, I kept thinking that a year ago, I didn't even know this joy-baby. I didn't know what she would look like, or what her personality would be.

Today, I know her intimately and love her deeply.

It's pretty wild.

When it was time for cake, of course Big Brother wanted to show Macy how it's done.

*The cake was from Macy's shower last year, and my grandma saved it!*

Not only does brother desire to teach, but sister desires to learn. See how she watches him? Carefully examining his moves and emotions. Carter is the best teacher, even when he doesn't realize it.

Of course, because the donuts weren't enough:

Despite the sugared-up morning, Carter was excellent. His shirt says 'Greatest Brother Ever' and on this busy day, he was a patient, loving, helpful big brother. It's hard being the only child for so long, and suddenly having to share the spotlight. Especially on birthdays - Carter's favorite! 

Jake and I talked before hand about our plan for helping Carter to be the best boy he could be. Guess what? We didn't need to do anything. Carter surprised us and just rocked it the whole morning.

Duh, guys. It's what Carter does.

Our morning of love for Macy ended with lots of this:

We had such a special day, and are so thankful for all our friends and family who came to celebrate Macy's first year! We love you all!

One Thing I Know For Sure: Love, love, love.

Wednesday, March 09, 2016

Baby Girl is One.

One year ago today, on your due date, I woke up and talked to your daddy about whether or not today would be 'the day'.  It was 6:30am and I had been in the very early stages of labor for about 18 hours.  

Little did I know that about 16 hours later, we'd be holding you in our arms.

I enjoyed labor. It's true. I loved every single hour. Hours after you were born, I told your daddy that I couldn't wait to do that again. 

You came into the world silently. Even then, I wasn't afraid. I knew it was just you, being you. When you finally cried, it was the smallest, meekest, quietest cry I had ever heard.

You tippy toed into our lives, and grabbed a hold of our heartstrings right from the beginning. Everyone who came to visit you said that although you were quiet, you were alert. 

You were so alert and so full of personality and life. Even at one day old.

And now, here we are - one year later. You are one. Baby no more - you are a little toddler. 

Your larger-than-life personality shines through more and more each day. I love to watch you discover who you are. 

Not who you're 'going to be' - but who you are. You already are somebody, Macyn Joy. This is why it never works when we try to be someone else. You are you. Be you.

You go at things with gusto, always moving forward, always looking for what's next.

You are happy and content 97.6% of the time. You love blueberries, coloring, climbing (so much climbing!), matchbox cars, crawling around on Carter's bed, clementines, snuggling with mama (but only at bedtime), watching Carter, wrestling with your daddy, and baths.

We laugh right now about your climbing - because you can climb from chair to table top in 4 seconds, flat. But you don't walk.  You climb your rocking cow and stand on the seat. But you don't walk.

It's okay, little baby. I'm in no hurry for you to walk.

You are a smart cookie and have picked new things up so quickly. A welcome change for this mama who is used to teaching and modeling and teaching and modeling. You've learned many signs, and have some pretty adorable words, too.

You're growing and learning and changing every day. I go back and forth between wanting you to stay little so I can enjoy you just like this - and wanting you to grow up, so I can see the amazing things that you will do.

Macyn Joy - I hope you know that you are loved.
I hope you know that you are Carter's best friend, and mama & daddy's best girl.
I hope you understand that you are who God created you to be. Go after that, little girl.
I pray that you will be a woman who gives up control to the God who loves you.
I pray so many things for you - but mostly, just that.

To our joy-girl, on your first birthday. To our sissy-pants. To our baby girl. Little sipster (we don't know where that came from. Odd nicknames are just an effect of having a big brother, I think).

Macy Moo.

We love you and are so excited to celebrate YOU today.

You're one in a million, girl. Now you take that, and you just rock it.

Here's to being one. 

One Thing I Know For Sure: Just be you, little girl.

Tuesday, January 26, 2016

Vacay Goodness.

We just got home from spending six whole days in sunny dreary Florida with Jake's Grandparents.  Both kids traveled like champs - we had several people on both flights gush over how well behaved our two kids were.

(We know they are.  We can't take any credit.  They just happen to be awesome kids.)

Yes, the weather was dreary. We had one whole day that was warm enough to ditch the sweatshirts and head to the beach.  

It's okay! Don't feel bad for us! We were together.  It was good.

We spent some time at the Naples Zoo - Carter was disappointed that there was no 'zoo train'. But his disappointment quickly disappeared when we told him that THIS zoo had a Monkey Island Boat Ride. 

Both kids enjoyed it. 

And, can you tell they're sibs?

The giraffes wanted nothing to do with the big leafy greens that were offered to them, but Carter enjoyed watching them from afar.

We spent one afternoon walking the Naples Pier & Beach.

We were chilly, but together.

And, of course:

Mama could get used to this.  I think Carter could, too :)

Here, you'll see what we did on our one nice, sunny day:

Macy took a few minutes of observing the sand before she was okay with it.

But then, she was all-in.

And here you'll see Mr. Independent - no Dads necessary.  This guy can fill up his own bucket with water.

Unless there is a bird nearby.  Then:
1. Throw Bucket
2. Run to Your Mommy

It was so fun to watch Carter fill this little bucket with water, dump it in his 'pool' (made by Dad), and play like a little boy should.

Remember our last beach vacation?  Here's our chubby little 4 year old from 2013:

And now, our brave, independent, strong 7 year old:

How did that happen? Waaaah.

We had lunch on the beach. OF COURSE.
(lobster roll & mahi sandwich, thankyouverymuch) 

Since we knew this would be the one and only nice day (have I made it clear yet that we only had one nice day?) we decided to get in some pool time.

It turns out, Macy is a little fish. She loved the chilly water, and was all smiles with her Daddy.

Carter, on the other hand, was happy to sit on the step and play with boats and squirt guns.

And spit water.

And lounge in the hot tub.  Kid knows how to vacation.

Throw in a little shopping, some crab (in the form of legs and cakes) and conch fritters, and lots of special memories with the 'Greats' and you have a perfect vacation.

Thanks, Grandpa & Grandma, for welcoming us into your home! Thanks for putting up with the toys and the crumbs and the fridge full of kid-food and only having one vehicle and your guest room looking like a tornado went through it and having a sleeping baby in the office....whew.

All so we could have a week together.

One Thing I Know For Sure: We were together - and together is good.

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