UPDATE: One year ago today, I wrote the following article about living with a Disney-obsessed autistic child. Following the article, I will post a short update.
|The Magic Carpets of Aladdin Ride at Magic Kingdom|
Princess Jasmine (from Aladdin):
A whole new world, A dazzling place I never knew. But when I’m way up here, it’s crystal clear That now I’m in a whole new world with you…Unbelievable sights, Indescribable feelings, soaring, tumbling, freewheeling through an endless diamond sky. A whole new world
Princess Jasmine: A hundred thousand things to see
Aladdin: (Hold your breath, it gets better)
Read more: Aladdin – A Whole New World – Metrolyrics
Princess Jasmine is trapped in a world behind the palace walls. She never ventures out, and she desperately wants to experience an ordinary life. She understands there is more to life, but the hand she has been dealt prevents contact outside her world, a world that is limited until she meets Aladdin.
Jack-Jack’s world was limited. Like Jasmine, he was behind walls. At age 3, his speech was non-existent. He didn’t really play with his brother Dash. He was trapped in a world that we knew nothing about. We did, however, notice that Jack-Jack loved everything Disney, from the characters, to the movies, and even the theme parks. There was just a connection. Could we take that connection Jack-Jack had made and help him find a world behind the walls? Could we help him find a whole new world?
Before Jack-Jack was talking, he would “communicate” things he wanted to watch or play. Currently, on a typical morning, he asks us to find “The Beauty and the Beast show from Hollywood Studios”, or some equally adorable ride or show from the Walt Disney World Theme Parks. Before there were words, I cannot recall just exactly what he would jesture or how we would understand what he wanted, but the “communication” Jack-Jack had with us was clearly designed to help him find Disney things. He was so insistent and persistent. Through many of the stages we thought, “we cannot endure this for another moment”, and now we look back and cannot even remember the stage.
Where was I? The Typical Day. After Jack-Jack watches some YouTube videos, his father prepares him a typical breakfast of egg whites, juice and sometimes toast. We do reading, writing, science, geography math, art…the typical subjects. Before he was talking, it was difficult to do any learning. How do you teach a subject when you receive no feedback? How do you teach when the person won’t remain calm for 5 minutes?
Jack-Jack would focus on movies such as Toy Story. I was able to teach body parts with Mr. Potato Head. Slowly things began to change; there was more speech and a greater understanding. I tend to space out the subjects because that is what works best for Jack-Jack. In between subjects, Jack-Jack plays with Play-Doh or paints. He might watch a movie or play outside with Dash. He does typical little boy things. But sometimes Jack-Jack becomes obsessed with something, and I cannot easily get him to transition.
We rarely have issues transitioning into Disney-related things. Jack-Jack and his connection to everything Disney just works. Jack-Jack knows directions. He understands we travel south to Disney. He knew this before he was able to talk. He would point south while we were driving. Once before he was talking, we were heading down to Disney World. Dad was driving through the night. He had exited the freeway for gas and thought everyone in the car was asleep. To re-enter the freeway, the ramp was in a northern direction and looped around. Jack-Jack started screaming. He didn’t calm down until Dad had completed the loop and was headed south. At 3 years old, in the dark, at night, driving in a direction that he had traveled only a few times, Jack-Jack still knew we needed to be headed south. That was an easy melt down to figure out, and thankfully, it was short-lived.
|Dragon across the bridge at Magic Kingdom|
Sometimes, it took us a little longer to figure out exactly what he wanted. When he began using some words, he kept taking his older brother, David, by the hand and wanted to walk in the woods (south) across the bridge to the dragon. Was this something he saw in a movie or a book? He was sooooo unrelenting. Finally David figured out what he wanted which opened up new connections to the outside world. And the thing he wanted was a dragon topiary at Disney World. We had similar moments with Amazon. Jack-Jack would want us to find things on Amazon such as books, toys and games. Usually these items were from Disney movies. When we figured out what he wanted, there were “eureka” moments. Those occasions gave Jack-Jack more words for him to use. Watching people and movies, and comparing in his mind’s eye real life with the movies, gave him more of those moments. Watching movies provided him with an even greater vocabulary to use as he encountered life.
Many of the movies that Jack-Jack watches are Disney movies. We found that many of the other movies used phrases that we didn’t want repeated or there was too much screaming. Until you have a child who copies movies, you don’t realize how much screaming occurs in some movies. Since Jack-Jack memorizes lines, it becomes apparent that not all children’s movies or characters are designed for children.
|Jack-Jack, Dash and Mr. Potato Head|
Jack-Jack studies all the characters from the main ones to the bit parts. In his Mr. Potato Head faze,
he wanted the Mr. Potato Head in the movie. When you buy a Mr. Potato Head, it appears to look like the one from the movie, but there may be subtle differences. His mustache is different or his shoes are different. You must spend hours finding all the correct pieces from different sets and piece together the correct Mr. Potato Head. We encountered the same problems with many toys based on movies.
Why don’t the manufacturers pay attention to detail? In the movie, How to Train Your Dragon, the Gronkle is green. The McDonald’s Happy Meal toy was purple. Now I am sure that some executive approved the wrong color Gronkle and then said, “It doesn’t matter if it is the wrong color. We will lose money redoing these dragons.” But to Jack-Jack, it did matter, and for day upon day all Jack-Jack talked about was getting a Gronkle even though he had the Happy Meal Toy. You see, that Gronkle was wrong, and a small little boy with limited speech knew it. David, the brother who fixes everything, took the purple Gronkle and painted it green with yellow accents. And Jack-Jack was finally satisfied.
Fixing things that aren’t broken. That is the life living with a little boy who sees “broken”. Life is broken in so many ways, from the words we use, to the toys that aren’t just right, to the brain that doesn’t work like others. Jack-Jack would cry after a particularly bad day, “What’s wrong with me?” and we would answer truthfully, “God created your brain to think differently.” In many ways, Jack-Jack is coming to terms with his different thinking easier than we are. He is also understanding what he was created before many typical children. Young adults attend college for years before deciding what to declare as a major. Jack-Jack declared his major at the age of 3. He is majoring in all things Disney.
Disney…It creates a world that is crystal clear to Jack-Jack in a way that nothing else is. He is currently learning to read and spell. The words he spells are words that are important to him. The Little Mermaid Show, Magic Kingdom, Epcot, Beauty and the Beast, Mickey Mouse, Cars and Figment are some of the words he has recently learned. Jack-Jack memorizes songs and dialogue from the movies. When we visit Disney World, Jack-Jack feels at home with the characters, the songs and the rides. Many adults can identify with the feelings of “I never felt like I belonged anywhere until….” Jack-Jack understands he belongs in Disney. He tells us often that “You and dad love each other in Disney”. He feels safe and secure even in the crowds and with the chaos. He knows the layouts of the parks. He speaks the language spoken there. We have fewer meltdowns which probably translates into Mom and Dad being calmer and more relaxed. Jack-Jack eats well, sleeps well, and plays well there.
And when we return home from a Disney trip, he learns well. I am sure some people wonder if we should feed into his Disney obsession. My logical answer to that question is “When Thomas Edison showed mechanical abilities at a young age should his parents have fed into his obsession? or Should Beethoven’s parents allowed him to play the piano for hours at a young age?” Writers, poets, musicians, scientists and artists, often show such direction and passion at young ages.
As Jack-Jack continues to show passion for Disney-related things, we can embrace it and use it to help him learn, or we can reject it and fight every day. We have chosen the only path a mother and father can adopt. Embrace the things that make your child different, and learn all you can about that passion. As we have done this with Jack-Jack, it has opened up a whole new world for him. It has also helped us be part of his world. But that is another movie, for another day!
UPDATE: One year later I tear up as I read this. The mommy in me sees things that others don’t. I see a little boy who is still so innocent, and trusting. I see a little boy who connects with Disney even more than a year ago. And I see a little boy who is understanding more of who he is, and accepts it better than the rest of us.
Jack-Jack has grown so much in a year. I never compare progress from last month to this month because it would be too depressing. I compare progress last year to this year. Sometimes it seems the progress is so slow, but this past year has flown by, and I see a little boy making more and more connections with the world around him.
Jack-Jack is reading more, and he started speed spelling. He spells words that he cannot read yet. He also asks for word meanings over and over. “Mom, what does beautiful mean? What does lovely mean? Why does Katelyn think I’m lovely?” and we answer all his questions multiple times a day. Sometimes people ask me if I get tired of answering the same questions over and over, and yes, sometimes I do, but I am so thankful for the words. I just wish they weren’t at 6 AM.
Jack-Jack recently painted a butterfly. It is a beautiful butterfly. Have you ever watched a butterfly come out of a chrysalis? It is not a quick process, and when they finally are all the way out, they spread their wings and allow them to dry. It takes a few hours for a creature that will only live 2 more weeks. Watching Jack-Jack emerge reminds me of butterflies slowly allowing their wings to dry before taking flight. When they finally do take flight, it is truly a beautiful sight.