A Scripted World

Dear Addie, 

I recently had this amazing opportunity to accompany daddy on a trip to Hawaii! Hawaii my dear is home to some of the most beautiful beaches, sunshine, and if you're old enough ;) delicious mai tai's!  All this with the love of my life, was simply an opportunity I couldn't refuse! While I knew you, Clara, and Gabe were in very good hands with nana and papa, I literally found myself bawling my eyes out on the plane. True story!  It was the can't catch your breath, box of tissues kinda crying. 

Silly right?!? 

Well here's what happened.

I was told about this movie "Life Animated" from a friend awhile back. It's a story of Owen Suskind, a young man who was unable to speak as a child until he along with his family discovered a unique way to communicate by truly immersing themselves in the world of Disney animated films. 

This movie describes a particular type of speech which is referred to as echolalia. I still remember the first time I heard that term...echo-what?!  Now you can find a thousand complicated definitions for echolalia in books and on the internet,  but it's basically the repetition of things being said to you...sounding as if it's an echo, hence the name ;) Some people even call it "parroting", simply do to the fact parrots repeat what we say. 

Now having oh a spare 8 + hours on the plane, I thought what better time then now! Let's watch this! 

Opening scene, my eyes started to fill with tears and it quickly escalated from there.  I was watching our life. 

His mannerisms, the parents feelings, the doctors responses, a glimpse of what's to come...

It was us. 

I wanted to so badly to jump through the screen and hug them and say "I get it!"  Instead I sat uncontrollably crying to the point the flight attendant asked me if I was OK, and proceeded to bring me tissues. 

I remember in your baby/toddler years The Princess and the Frog was your favorite movie.  The moment we'd put it on, you were instantly calm.  Thinking back now, it was probably the only thing that held your attention for more than 20 seconds. Something about alligators, frogs, lightning bugs and princesses just seem to make sense to you. I do however blame Princess Tiana for your spontaneous screaming.  Remember the part of the movie where Tiana is talking to the frog, the frog then talks back causing her to scream?! It's your favorite scene in the movie and you imitate it perfectly!  Not gonna lie, I kinda wish you would've picked up a cute phrase or song, but nope screaming it was.

It's hard sometimes to explain to people how we "just get" what you're saying. You seem to understand things that are predictable like movies.  Doesn't matter how many times you watch it, it will stay the same. Therefore the dialogue and responses remains the same as well.  For example, if we'd say, 

"Are you alright Addie?"  

You'd reply, "It's alright Pasquale," every time. 

Took me awhile to realize that was from the movie Tangled. Let's just say I was super happy when I figured that one out! I could then stop worrying about who the heck Pasquale was! 

When I brush your hair, you yell as loud as you can, 

"Let it go! Let it go!" 

Now this one I can only associate to how passionately Elsa is when she sings that song in the movie Frozen. You seem to resonate the same passion with your lack of love for hair brushing. 

Your movie echolalia is extensive! But to add a little more fun to your language, music speaks to you the same way. 

There was this one time construction workers were using a jack hammer across the street from our house...It was LOUD!  You were so consumed by the sound, all you could do was stand there crying, repeating Taylor Swift "Ah, ah, trouble, trouble, trouble!" I actually grabbed my phone to get a quick video when it happened. Let me tell you baby, it's the saddest video ever and I quickly consoled you after I recorded it. I'm pretty sure anyone would be wondering why I did that, but as we were still navigating your early diagnosis, I was trying to document you using song lyrics to communicate with me.

Fast forward to real time, If I ask how school was, I know you're not going to tell me who you are eating lunch with or what words were on your spelling test. The reality of our conversation goes as such...

"How was school today?!" 

You reply, "School today." 

Then spontaneously until bedtime we'll hear random phrases in between your gibberish that your teachers have said to and your classmates! It's a common misconception that autistic kids are not "tuned in" or listening to what's going on, but that's far from the truth! You seem to show us you hear everything!  For example, you'd say...

"Addie no screaming!" 

Therefore you pretty much out yourself for being naughty at school.  And not naming names here, but there's a certain someone who is told to "sit down"...A LOT! 

You actually have what seems to be both immediate and delayed echolalia. Immediate meaning exactly that, repetition of what's being said to you in the present. 

"Addie do you want popcorn or a drink?" 

You'll respond, "popcorn or a drink." 

I'll say, "which one?" 

then you'll repeat, "which one?"

We eventually get there.

Delayed echolalia is like you've filed it all away until it's relevant to a situation.  For instance, if you see a butterfly, you'll say...

"One day Lucy saw a beautiful butterfly."  

This is actually the beginning sentence from a butterfly book that our sweet friends The Baker's gave to you. It's your favorite book and we read it every night.  

For the most part any new language, if it wasn't from echolalia is very matter of fact. Let's be honest "pink square" and "white drink" are a heck of a lot easier to say than "strawberry starburst" and "Ice Punch Gatorade" - I get it.

Here's the thing Addie. We never had the typical "what's that?" Phase as I like to call it. When children's language explodes because they're constantly asking questions about everything around them. You were nonverbal for quite sometime and somehow movies and music helped you find your voice. Sometimes it takes a little decoding, but the language is coming! 

I know one day you'll look at me and say things like "Mom, can we go swimming?" But until then I'll take "kick, kick, kick?"

Keep working hard Ad! You're doing great! 

I love you, 

Love,

Mom