Evan Decoded

Evan's progress used to be dramatic. One day we'd wake up and it was as if the Asperger's cloud lifted a bit and Evan was noticeably more present and engaged. Now he progresses differently. I like to call it "slow and steady." It's not as remarkable, but I hear that's how you win the race anyhow. These days he's improving in little ways across the board. My favorite place to see these changes is his language skills. Those tiny gems of original thought are popping up more often. He's understanding his emotions better, expressing himself more and we are starting to decode some of his behaviors that have eluded us for so long.

About a year ago, when Evan was four and half years old, his language skills started to improve. He spent a great deal of time working on his auditory processing and pragmatics during his speech therapy sessions (and still does). He was able to answer certain questions and it was as if we could finally start to unravel some of the behaviors that had mystified us over the years. Since Evan was about a year old he had an almost Pavlovian response to pillows. If he came in close enough contact with one (no matter what room or what time of day) his thumb would go in his mouth and his eye lids would droop with heaviness. He loved his bed and at night he would dive under his pillows to go to sleep. We knew there was a sensory component to his love of pillows, but weren't sure what it was. Did he like to go under the pillows because it blocked out light? Did he like to feel the pressure of the weight on his body? Did he like how the fabric felt cold against his skin? I thought it might be the cold feeling, but I never knew for sure. I often asked him, but never got an answer. One day I finally did. "Evan, why do you love your pillows?" I said, exaggerating the inflection of my voice to help him tune in and process the words. Much to my surprise, he took his thumb out of his mouth only long enough to say these three words: "It feels cold." I called my husband, Steve, into his room and we celebrated those three words like they were a major milestone. For us, that's exactly what it was. It was the first time he could explain why he does what he does. No speculation or hypothesizing, just our son giving us a glimpse into his thoughts.

Every night Evan would crawl into bed and we would choose a few books to read. Occasionally, he would have a very, um ... strong reaction to certain books. A peaceful quiet bedtime could turn into tears and screams if we tried to push a book that he had rejected. We didn't know exactly why he was having such adverse reactions to these books. Maybe he wanted to read something specific and was having a hard time telling us what that was. There was one particular book that Evan was terrified of: Rhyming Dust Bunnies by Jan Thomas. I had recently discovered how much disclaimers, explanations and preparations helped Evan. Sometimes one subtle statement could ease his anxiety. I guess this night I was feeling particularly brave because I went to Evan's bookshelf and picked up Rhyming Dust Bunnies. I told him it was a silly story and I wanted to read it. He didn't have to listen, but I was going to read it quietly to myself. He put up a fight, but I started to read anyway. I whispered the words and giggled my way through the first few pages. At this time Evan was still struggling with sensory overload when it came to loud noises- especially if he could anticipate them coming. I noticed the words on the page were written in a large font and there were lots of exclamations points. I started to realize that my little reader probably thought that this book was loud, abrasive and to be avoided at all costs. When I got to page six, Evan quickly covered my mouth and said, "Not loud! Read it pianissimo (a nod to his Little Einstein days)." And there on page six was the trifecta that caused Evan to finally show me why this book was his mortal enemy: large font, an exclamation point and ALL CAPS! We got through the book that night when Evan realized the dust bunnies were not going to yell at him and he insisted on reading it every night for the next three weeks.

Evan scripts -- a lot. He is always reciting dialogue from shows and movies. In the car, he loves to listen to movie soundtracks and songs from his favorite Nick Jr. shows. During every car ride there is a moment where Evan insists that I restart a song from the beginning. Often we are on our way to school or therapy and I don't want him to exhaust himself with a meltdown, so I oblige. Yes, I subscribe to that lovely little theory called "Choose Your Battles." This was another situation where I wasn't exactly sure why Evan would be so insistent. Since he was getting better at answering questions, I decided to push the issue. He asked me to restart a song and I turned the radio off. I said, "I will, if you tell me why you want me to restart the song." I had to repeat the question a few more times, but finally he said, "Because I didn't sing a part." Aha! I realized he was not only singing along, but also replaying the scenes in his head. I tested this theory when he was listening to an instrumental song from the Beauty and the Beast soundtrack. He was reacting to the song as if he was watching the scene play out. I turned to Evan and asked him, "What's happening?" He said, "Gaston and the men are trying to kill the beast!" I guess the movie reel never stops playing in Evan's mind.

This theory was further proven when Evan started to blink intentionally and excessively. It came about one day and didn't stop for weeks. It would happen all day long and was especially noticeable when we were sitting at the dinner table and there was nothing specific that he seemed to be reacting to. I finally pressured him to tell me why and he said, "because I don't want to see something." The next time I asked, he said "I don't want to see Evil Emperor Zurg (from Toy Story)." So the scripting wasn't just happening when he repeated dialogue. It was happening in his mind all the time.

The loss of a pet is inevitable, but never easy. Our dog Riley had to be put down a few months ago due to cancer. We told the kids she was very sick and had to stay with the veterinarian. We knew death was a topic that had to be broached sometime, but felt they were still too young to get the concept. With every question about Riley my heart ached a little more. One night Steve called me into Evan's room, where he was putting him to bed. He said, "Tell Mommy, Evan." Evan whispered in the saddest voice I'd heard coming out of my usually joyful little guy, "Where's Riley? I miss her. She needs to be here with us." He then reached up and brushed a tear from his eye. This was the very first time Evan cried from sadness and not fear, frustration or anxiety. It was heart breaking, but also a breakthrough.

This year we have made improving Evan's fine motor skills a priority. It's his final year of preschool and we decided it was a good time to strengthen his writing and drawing skills and more importantly, get him to like it (or at least not despise it). Between his school homework, speech homework and our new fine-motor schedule (20 minutes a day of tracing, cutting, drawing, writing or art) we've been spending a lot of time at the kitchen table. Putting up a schedule, using rewards, motor breaks and applying tricks to get him more engaged all helped Evan tolerate homework more. One Sunday, we were working on his butterfly book. He had to trace numbers, color the butterflies, cut the pages and then staple them into book form. I'm not sure how long it took his classmates, but Evan finished it in about four sittings. He had just finished watching the movie, The Polar Express, when I reminded him it was time to finally finish his butterfly book. He was reluctant (surprise surprise), but I somehow coaxed him to the table. He sat down looking completely uninterested. I knew I'd have to use one of my tricks to get him engaged. I started singing for each number he was on. Well, since I'm tone deaf it was more like rapping. Whatever it was, it was working. Evan stopped whining and went from slumped over to sitting up. Instead of a prompt every two seconds to hold his crayon correctly and keep working, he was actually just smiling and coloring away. When we got to number seven, he started singing -- slowly and quietly. It was to the tune of "Christmas Comes to Town" from Polar Express. He sang "Seven, number seven, my name is Evan." It was so adorably sweet and authentic. And then it got better. He turned to me and sang, "Mommy is my girl. She is good. I love her. She's my Mommy." And while he sang he caressed my face and arm. My throat constricted, but I held back my tears because I wanted to see where else this song was going to take us. He continued to sing about how he loves his house, Earth and his sister Lia (who he also referred to mid-song as his girlfriend...have to work on that concept in the future). His animated scripted voice was replaced with this gentle sing-songy intonation. The lyrics were truly expressive. In fact, that moment was Evan's most genuine display of emotion ever. Evan would say, "I love you," but it was like a boomerang. If I threw it out there he'd send it back. This was entirely different. The words I heard were uniquely his and with those words, for the first time, I truly felt his love.

This is an exciting chapter of Evan's progress. His emerging language skills are like a key that has opened a door to show us more of our son. We are finally learning the reasons behind so many of Evan's habits and behaviors. We're understanding his personality on a whole new level. We've been so focused on getting Evan to be more in our world -- it is such an unexpected and amazing gift when he shows us more of his.