“One day, a talented lass or fellow, a Special one with face of yellow, will make the Piece of Resistance found from it's hiding refuge underground. And with a noble army at the helm, this Master Builder will thwart the Kragle and save the realm, and be the greatest, most interesting, most important person of all times.
All of this is true, because it rhymes.”
Every so often, I feel inspired to write down our life stories. And every time the month of April comes around, I feel it’s important to document the autism stories. Today (April 2) is World Autism Awareness Day. This is our unique story, because every person with autism is different. (And that's what makes this world a beautiful place.)
Autism Awareness Day happens to be very close to the date my son Bowie was diagnosed with Autism Spectrum Disorder three years ago and when this day approaches every year, I can’t help but feel all the feelings. I often think back to those very first days of knowing our little boy had autism and what life was like at our house then.
The thing that immediately comes to mind from that time period is Emmet. 'The Special' ... the main character in the Lego Movie. When Bowie was 3 years old, the Lego Movie became his first major interest … and borderline obsession. Like most kids who fall in love with a movie, he wanted to watch it over and over again. And if you sat next to him while he was watching, you’d see his lips moving. He wasn’t a clear speaker whatsoever at this age but you could tell that he knew every single word. You could see it in his eyes; the way he concentrated, focused and listened. He was memorizing the whole movie.
We watched him do it.
He’d try to speak along with the characters as best he could, and he'd fit those sounds in ... in perfect unison. He wanted to get those words out. He knew every inflection. He’d copy the facial expressions. In no time at all, he had all of the dialogue completely memorized. And every single action too. He’d stand near the t.v. and perfectly act out every movement Emmet made. Every jump, turn, kick … everything. He could do it without looking. He could copy the characters’ movements perfectly, exactly on time while listening to the movie from another room. Our whole family became mesmerized watching Bowie watch this movie. None of us had ever seen anything like it.
So we all tried to memorize the movie too. He would talk to us in Lego Movie quotes (this is common with ASD and is called echolalia) and we’d respond back.
“Jumping Jacks, him them! 1, 2, 3. I am so pumped up!”
“Today shall now be known as Freedom Friday... but still on a Tuesday!”
“Croissants? I love croissants!”
“Honey, where are my paaaaaaaaaaaaaaaants?”
He was practicing his language. And we participated in the practice, because it was working. The Lego Movie gave him the confidence to speak. This movie was a BIG deal to him. It was funny, it was engaging. And we knew it was helping. During Bowie’s toddler years, Bo and I honestly did not know if Bowie would ever learn how to talk. He babbled. He didn’t say ‘mama’ or ‘dada’. If he was super into something that seemed to help bring out his speech, we were ready to dive in head-first.
Predictably, the Emmet Lego mini figure (or mini-fig) soon entered our lives. When we found Lego Movie Lego sets in the store, we had to buy one. As soon as we brought the Lego set home, that Emmet mini figure was in the palm of Bowie’s tiny hand.
And Bowie didn’t let Emmet go for the next two years.
He took Emmet everywhere. He held Emmet in his hand while he slept. He would cry uncontrollably in sheer panic if he dropped him or if the plastic hair fell off or if Emmet lost a hand. We had to dig for Emmet in muddy, slushy snow. Once, Emmet fell into a sewer. Bowie would carry Emmet on bike rides with Bo and yell out if he had dropped him along the way so they could turn back. We’d spend hours searching for a lost Emmet around the house. And while I completely understand that most kids do this and get attached to a certain toy or stuffed animal, this was different. A whole new level that I had never seen or experienced before. Losing Emmet could bring Bowie down to a crashing halt … for entire week. Or longer. ASD kids can be an extremely sensitive, emotional bunch and we got a crash-course on how completely devastating an Emmet mishap could be.
We quickly realized we needed replacement Emmets. So we bought our first three-pack on Amazon. This was great because I figured I'd have an easier time keeping the Emmets clean and could carry back-ups in my purse or in our car … whew. But then we realized each Emmett figure came with different facial expressions or features. Some had a red hat, others had the brown hair. One had brown hair and a red hat. And some of them just looked too ‘new’. Bowie would only find certain Emmets acceptable and he really just wanted his old one that had some of the graphics rubbed off (from never letting him go.) He’d stare at each Emmet, turn them around in his hand studying every tiny part of them and then decide if they made the cut or not. Luckily, he became a little bit more flexible with the different Emmets over time and each of these little guys eventually got their turn as the favorite.
By this time, Bowie had started 3-year-old preschool. His teachers quickly learned that Emmet was coming to school with Bowie and would be in his hand all day. I think they eventually worked out a system where Emmet could stay in Bowie’s cubbie while he did school work but that was a process. Even the receptionists in the school office knew about Emmet and if he was ever left behind at school, I could go to the office to pick him up and our little Lego guy would be sitting on the top of the office computer screen, waiting patiently.
Bowie finished his first year in preschool and went on to 4-year-old preschool. He made great strides. Progress was slow but steady and we were thrilled to see what he was capable of. He had his struggles but was doing well with his numbers, colors, shapes, alphabet and could write his name. He was also becoming an incredible artist.
By the end of that second year of preschool, Bowie didn’t need Emmet anymore. (It almost makes me cry to type that.) As kids do, he moved on. Sometimes he’d carry a train, a turtle or a dinosaur to school instead and by the time summer rolled around, he didn’t need to always have something in his hand.
Emmet really was 'The Special'. For Bowie. And for our family. Emmet was there for us during that important, sometimes rocky, new autism phase. He was there for Bowie too.
And Emmet taught us some really good things. Quite frankly, he left all of us with some fantastically inspirational messages that will remain ingrained into our brains and lives forever.
Bowie recently started watching the Lego Movie again and to no one’s surprise, he still knows all the words.
Like these.
“You are the most talented, most interesting, and most extraordinary person in the universe. And you are capable of amazing things. Because you are The Special. And so am I. And so is everyone. The prophecy is made up, but it's also true. It's about all of us. Right now, it's about you, and you still can change everything.”
