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.

Twenty Minutes

A new blog post! Yeah, it's been awhile. The truth is I have been avoiding this moment for some time. I have reams of notes for five different blog posts. The problem is I promised myself I wouldn't write any of them...until I wrote this one. Today something beautiful and amazing happened with Evan. I ran to my computer to jot down some notes. I couldn't wait to write a post about the break though. But then I remembered the promise I made to myself. So, that post, with all it's touching moments of progress and joy, will have to wait. This one has to come first.

I've put four months in between that day and today. It still doesn't seem like enough. I mean, who in their right mind would want to revisit the most heart wrenching moment of their life? To write, I have to remember. To remember, I have to relive.

It had happened before. Two minutes at the water park. A minute in the hallway at school. But this was different. It was a beautiful October day. I was running errands in town with my best friend, Jackie. The kids were at home with our part-time sitter, Wendy. Evan was still obsessed with riding his bike and went for several bike rides a week. If it was two adults (my husband and I over the weekend or the sitter and I during the week) we would take a longer bike ride around the neighborhood. If it was just Wendy, she would take the kids on their bikes down the block and along the path that led to the field of the school behind our house. It was a quick jaunt, but they loved it. It was also quick enough that I felt comfortable with Wendy taking them on her own. She had been taking them a few times a week for about two months. But this bike ride would turn out entirely different.

Lia, Evan's sister who had just turned three years old, insisted on taking her tricycle instead of her bike. This one seemingly inconsequential variable seemed to set off the whole ugly chain of events. A bike can manuver over bumpy sidewalks easily. A tricycle - not so much. Lia kept getting stuck and Wendy had to turn back to help her over tree roots that jutted out and made for rocky terrain. After each time getting stuck, the space between Evan and Lia grew larger. She yelled over and over for Evan to wait, but he didn't. Then he saw a deer and off he went. Wendy went back and grabbed Lia, abandoning her tricycle. She chased after Evan, screaming at him to stop. He turned a corner and was out of sight. She felt she couldn't run fast enough carrying our 40 pound daughter. She yelled for help and a couple students who were practicing with the school band ran over. She asked them to watch Lia and she left to go find Evan. Wendy called 911 and then called me.

Jackie and I were picking up some clothes that were being altered and chatting with Sam the tailor (when you're 5' 3" you get a lot of clothes altered and you spend a lot of time with the tailor). When I saw my sitter's name pop up on my cell phone, I knew it wasn't good. She was hysterical. I only remember hearing the words "Evan," "bike," and the worst word of all - "lost."

I ran out of the store towards my car. I realized a few seconds later that Jackie had been yelling to me. Was she asking me a question? I turned to look back and she was gone. But I saw Sam standing on the curb. He was looking around, stunned, probably wondering what he should do. I got in my car, crying, shaking, fumbling with my cell phone. Since I only processed three words from the call with Wendy, I had no idea if she had called the police. I dialed 911 as I honked and weaved my way through traffic. I was driving like a mad woman. Well, in that moment that is exactly what I was. In between distraught sobs, I told the dispatcher what had happened. I gave location details and described what Evan was wearing. And then I told him that my son was autistic. The dispatcher said, "we'll call his name and maybe he'll come to us if he's hiding." I screamed, "He's autistic! He will not come if you call out his name!" The dispatcher said, "maybe he walked to a friend's house." I screamed, "He's autistic! He does not walk to friends' houses!" The dispatcher tried to keep me calm, but my level of hysteria grew at every asinine thing the dispatcher said. He tried to tell me that screaming and driving like that was unsafe. Did he want me to go the speed limit and calmly follow traffic patterns? Then I started to think about the recent "stranger danger" incidents that had occurred in the area. I pictured my oblivious naive little boy happily climbing into a car - never to be seen again. If my maniacal driving could have gotten any more maniacal, it probably did. I wanted another dispatcher to call Wendy and stay on the line with her. I tried to retrieve her cell phone number from my phone. The dispatcher must have known that my crazy mental state combined with my demented driving and messing with my cell phone would be a bad situation. He told me to pull over and calm down while I got the phone number. I yelled, "you're fucking crazy if you think I'm gonna fucking pull over while my kid is lost. I am going to fucking drive home and find my fucking son!!!!!" Or something like that.

While I was on the line - I heard him talking to another dispatcher. As I turned onto my street, he told me the sitter found Evan and he was with her in our house. I parked my car in the drive way, but did not go in. Somehow I just knew Evan was not inside. My neighbor, John, came outside and followed me as I ran to the corner where four police cars were parked. I followed the path to the field behind the school. Four or five police officers rounded the corner and walked towards me. Jackie was there with Lia. Apparently, she had been asking me if I wanted her to drive. When I didn't answer she realized she should take her car because it was parked on the other side of town, closer to my house. She pulled over where she saw the police cars and found Lia playing with some of the kids from the band. Thank God for them.

John and his wife Jen took Lia back to their house as I approached the first officer I saw. I asked him, "where's Evan?" He said, "at home with the mother." I said, "I'm his mother!" I called Wendy. Through labored breaths and tears she said, "I have Evan, can somebody come and get me?" She physically couldn't walk. I told the officer to send somebody to get them. He tried to convince me that she was at the house. I yelled, "I am on the phone with her! She is sitting on a sidewalk! Go and get them!" During this time a different officer drove by and saw Wendy sitting on the ground with Evan and asked if she was OK. She begged the officer to drive them to where we were.

I spotted a police car pulling into the school parking lot. I ran across the field as Wendy and Evan (still wearing his helmet) ran towards me. I grabbed him and kissed him and held him- probably too tight for his liking. I don't remember what I said. I just remember walking across the field and not wanting to put him down - ever.

Wendy was a mess. She must have had a full on panic attack and well...she peed herself (which is the least she could do for losing my kid). After getting all the information, we parted ways with the officers. I think I thanked them and may have apologized in some capacity. We walked down the block and went to my neighbors house. I tried to talk to Evan about what had happened. He didn't really get what all the fuss was about. He seemed pleased that he got to ride in a police car.

I let Evan and Lia play with the neighbor's kids in their backyard. Jackie and Jen stayed while I went inside my house to see if Wendy was OK (and give her some pants). We were both still very upset and I told her to get some water and sit down and that I would be back in a few minutes. At some point I had given Jackie my phone and told her to call my husband, Steve. She had been calling him repeatedly, but kept getting his voice mail. His train had been stuck and he had no cell service. He had no idea what had gone on. At least he got to hear the story with the happy ending already attached. The kids played as Jackie, Jen and I recounted everything that had just occurred. I called Sam to tell him Evan was OK. He had been waiting for that call. I scrolled through my recent calls and checked the time that Wendy first called me. "Twenty minutes ago? That's not possible," I thought. I checked three more times. The whole ordeal had only lasted twenty minutes. It felt like so much more. Twenty minutes, but it probably took that many years off my life.

Eventually Jackie went home and Jen helped me get the kids settled inside. We sat down with Wendy at the kitchen table. I asked her to start at the beginning. I tried to piece everything together, not that it would ever be enough. Jen went home and Wendy's brother arrived to pick her up. She was still visibly shaking and wasn't okay to drive on her own. I stood alone in the kitchen while the kids played in the next room. I leaned on the counter and had a good cry. I noticed the time and realized I had to make the kids' dinner. They were probably hungry and bed time was fast approaching. Life goes on. But it will never be quite the same.

The Short List

I have a short list and I bet you do too. Everybody has one. It's the people who support you, who you can fully trust, who understand your child with special needs, who understand what it's truly like raising them. They just get it.

Odds are the people on your short list are your closest family and friends. Hopefully, your spouse is on your short list because being on the same page is paramount to raising your special needs child, staying sane and well...staying married. Thank God my husband, Steve, and I are on the same page. He is definitely number one on my list and I am number one on his.

And I'm sure there are a few standouts. Like your child's teachers and therapists who "get it" on a whole other level. They can hear your child say one thing and look at you with amazement because they know what it took to get there. Evan recently came out of speech therapy and noticed a man in a white lab coat. He said, "Hi, I'm Evan. What's your name? Are you a doctor?" His speech therapist, Irina (see photo above), looked at me with wide eyes and mouth agape. We just stood there smiling broadly at each other. No words necessary. It may have been a little improvement, but she recognized it. These are people that revel in the progress and celebrate alongside you.

Maybe it's an aide. When you pick up your child after school, they report to you a little tidbit that most wouldn't even notice. Last week, Evan's aide told me he stayed at the table and completed the whole letter writing worksheet without trying to go AWOL. She knows fine motor skills are a big challenge and the fact that he didn't get up is a big deal.

These people understand your child and all their quirks -- and probably think they are darn cute too. Evan has gotten pretty good at making his scripting sound appropriate and authentic. When Evan sees his teacher from last year in the hallway and he asks her to pick him up, she already knows he's trying to reenact a scene from Beauty and the Beast. There's no fooling somebody on the short list!

The people that inevitably get on the short list and rise to the top at record speed are other parents of special needs children. They don't just get it -- they live it. These people speak the language. IEP, OT, NT, scripting, stimming. No need for a translation, they are fluent! When chatting together you probably finish each other's sentences half the time. Yesterday I went with a friend to pick up her daughter, who has selective mutism. We arrived at the school and all the parents were waiting on the sidewalk. We walked by them and stood close to the doors. She said, "I'm sure everyone looks at me like I'm crazy, but I stand here so..." "so, she can see you as soon as she comes out and doesn't have to search the crowd," I said. What seems obvious and necessary to us might seem weird or crazy to somebody not on the short list.

Notice it's called a short list. There are whole lot of people not on the list. Some don't understand, don't want to understand or just don't know how to. They are unsure of what to say. Some like to explain everything away and wrap it all up with, "He'll be fine." They don't recognize what it takes to see progress and think they are just "growing out of it." Some are judgmental. Some just don't get it and never will.

So, here's to the people who do get it. They listen when we need to vent. They let us obsess over something until it's out of our system. They celebrate all the success and progress with us. They love our kids and we love them for it. They support us and hold us up when we feel like we just can't get through another day. And we couldn't without them.

Walk Day

Today we are participating in our first Walk Now for Autism Speaks. We will be walking with our children, our family, our friends. We have received donations from local businesses, family members, new friends and old friends. We have felt the support from loved ones as far away as Hong Kong and as close as right next door. We are truly touched at how people can rally together for a great cause. We never knew that Autism would touch our lives so closely. We have loved Evan since he came into our lives. The day we received his diagnosis we looked at him and had to remind ourselves that he is the same boy he has always been. The path ahead is the only thing that has changed.

The following essay was written in 1987 by Emily Perl Kingsley, about having a child with a disability.

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Echolalia...lalia

For those of you who haven't spent a day with Evan (OK you'd hear it if you spent 5 minutes with him), Echolalia (or scripting) is the repetition of speech which is often involuntary and compulsive. It's fairly common in children with Autism and Asperger's Syndrome and it runs rampant in our house.

After Evan's first birthday, he started speaking a few words like other toddlers his age. By 15 months he spoke about 60 words and we stopped counting. He was obsessed with naming the pictures in his Roger Priddy books and endless collection of flashcards. If somebody saw how we spent time in the playroom day after day they would think we were prepping him for his first standardized test. Although, I was daydreaming of Evan taking the SATs and doubling my pathetic score (yeah, it was that bad).

Shortly after Evan turned two years old he replaced the flashcards with a love of maps. He memorized all the states and had over 70 countries down (again trumping my geography skills). One day my pride started to turn to puzzlement. I think my first thought was "OK this can't be normal." I might have even tilted my head to the side and looked at Evan with an expression of bewilderment. We started to pay more attention to his speech. He sure did like to repeat dialogue from his favorite shows. He didn't seem to make observations or convey his feelings like other kids his age. No other two year old we knew thought it was fun to repeat a long list of classical musical composers. It didn't take long for us to realize his speech was memorized -- all of it.

After putting all the pieces together and getting him diagnosed, he started receiving speech therapy. And boy did he need it. We were so impressed and bemused by all the things he did say, we didn't realize all the things he didn't. He didn't express his feelings, ask for help, make observations, have conversations, or answer questions.

Eventually the speech therapy started paying off. He was progressing with his original speech and his scripting was not decreasing, but evolving. He still did plenty of "show talk" (as we call it). But instead of talking to himself, he started to direct the scripting at us and become more engaged.

He also began to alter the script to make it more appropriate to real life. This change meant that he got very good at fooling people. We had just returned home after a trip to Florida to visit Grandma and Evan came out of his occupational therapy (OT) session with his therapist. She said, "You won't believe it. Evan told me all about going to the lighthouse and watching the waves in the ocean with Grandma." I had to break the news that she was duped. It might have happened on the Disney channel, but not on our vacation.

One trick to determining what is real and what is scripting is the inflection of Evan's voice. His memorization is so precise that the scripted speech sounds exactly like it is spoken on television. This means that most of the day it feels like we are living with a very enthusiastic cartoon character. Although not many people can tell the difference. During one recent playdate Evan asked for a blueberry muffin. His friend Ava quickly chimed in, "No, no, that's show talk. That's from the show Strawberry Shortcake. There's a guy named Blueberry Muffin." I told Ava, "Good thinking, but considering Evan is currently trying to break into the pantry, I think he actually wants a blueberry muffin."

Sometimes Evan's excessive scripting can put him in a precarious position. Just yesterday I was upstairs tackling the laundry while Grandma kept an eye on Evan. He was watching a show from a headstand position on the couch (if I knew why I would tell you). My mom said she heard him saying "Help me, I'm stuck." over and over. She assumed he was doing 'show talk.' Evan finally said, "Grandma, don't just sit there! Come and help me!" Too much scripting and he became the boy who cried wolf.

Occasionally, the scripting can be pretty darn cute (well, until the 14th time in an hour). But one little sentence of original speech recently had the whole family in stitches, unfortunately at someone's expense. We had a bunch of relatives over for dinner when one family member stood up and walked in front of Evan. Let's just say this person has a larger-than-average behind. With wide eyes Evan exclaimed, "Wow, that's a big giant tushie!!!" I am sure this person/Evan's victim is going to read this. I want to say thank you for allowing me to relay this story for the greater good of Asperger's awareness. The comment was extremely rude and I am definitely not reliving the moment and laughing right now. Really I'm not...OK just a little.

His scripting can also really come in handy. It has helped Evan memorize social stories, which teach him steps to follow for specific tasks, and thus become more independent. It also has assisted Evan in remembering ways to initiate conversations. Leaving OT one day, Evan saw another boy around his age. Evan went up to him and the conversation went something like this:

Evan: What's your name?
Boy: Jack.
Evan: Hi Jack. I'm Evan and this is my Mommy and Ms. Tiffany.
Jack: How old are you?
Evan: I'm 4.
Jack: I'm 6.
Evan: You said it brother!

Yes, I could tell it was directly from a script and the last line was straight out of Team Umizoomi (complete with sweeping hand gesture). But he was having a conversation and Jack actually thought Evan was pretty funny.

Sometimes he can take his scripting to a whole other level. There are costumes, accessories and a mirror to watch the whole scene play out. He also has a very willing accomplice in his little sister. Lia copies everything her brother does, including scripting. Sometimes we say we have a second Aspie by affiliation. They can reenact scenes from Max and Ruby and keep each other entertained for hours. OK maybe 45 minutes, but that's enough time for me to prepare dinner, so it works for me!

Unfortunately, there are times where Evan's scripting greatly increases. When he is stressed or overwhelmed, he becomes more detached and delves deeper into his world of scripts. Recently, my closest friends from high school came to visit. The first few days we had an extra 7 people in our house. Evan barely engaged with anyone and amped up his scripting. I tried to explain to my friends it wasn't usually like this. As my friends returned home and our number of house guests tapered, Evan returned to normal. Well, our definition of "normal."

These days Evan is getting so much better at recalling information and answering questions. A few weeks ago I was cleaning up downstairs while Steve was giving the kids a bath. I went to the counter to put away my jewelry when I realized my engagement ring was missing. I ran upstairs to the bathroom and asked Lia (Evan's two year old sister who takes out her hair clip 18 times a day, but always tells me where it is when I ask), "where is Mommy's ring?" "I don't know," she answered. Damn, no luck. I turned to Evan, "where is Mommy's ring?" He paused and I prayed whatever he said next was not from the last episode of the Backyardigans. "In the playroom, behind Mack." I rushed downstairs and there, behind Mack the truck, was my engagement ring. OK, it was wet from apparently being in Evan's mouth, but I found it. And I found it because my son told me where to look.

As his speech therapy continues, he will work on pragmatics and be able to use more original speech. He's expressing himself better and progressing everyday. We still cherish every time Evan says something completely authentic. It becomes a little gem we hold on to until the next one comes along.

Forever Friends

Evan was such an good baby that the decision to give him a sibling was an easy one. When he was 17 months old we found out that I was pregnant and later learned that Evan would soon have a little sister. Lia Grace was born September 6, 2007, the day before Evan turned two years old. We wanted them to be about two years apart, but didn't know they would end up that close! The relationship that developed between Evan and Lia can only be described as a winding path with many twists and a few very sharp turns.

Every parent knows the first few months with your new baby are marked by how long the baby nursed or how many ounces of formula the baby took and how long the baby slept. Especially how long the baby slept at night, when every minute counts and you are praying for the day you can celebrate their most important childhood milestone (no, not starting school, riding a bike or losing their first tooth), but sleeping through the night. For this milestone also marks the return of a mother's sanity. If this baby is not your first, then this theory is shot to hell because your sanity went out the window a long time ago. With your firstborn, time runs like molasses and you can gaze at your baby endlessly and actually have time to shower and eat a full meal. With your second baby, you are equally in love, but somehow you blink and they are two years old and you hope you took some pictures during the last couple years because you can't remember much of how it went down. You also have to adjust to this new busy life with sacrifices, like grocery shopping at night with the weirdos and blow drying your hair biannually.

When Lia was a baby, Evan was two years old and undiagnosed. There were a few moments of concern, but overall we didn't realize anything major was amiss. We did learn very quickly that Evan was not a fan of Lia's high-pitched cry. Every time she wailed, so did he (hello sensory issues). After much explaining about why babies cry and soothing them both after an outbreak of double tears, things began to calm down. Lia was a happy baby who ate well and slept through the night at ten weeks (just like her brother). Evan was not particularly interested in her. By not interested, I mean she basically didn't exist in his world. And at this time "his world" was a very insular place and it would still be a while before we realized this and worked to get him out of there.

But Lia was very interested in her brother and watched his every move. She laughed at everything Evan did and as soon as she could move it was game on. She wanted to grab his toys, his sippy cup, his hair. This was during Evan's "everything has its place and it's usually in a line across the floor that nobody should touch" phase. Yeah, she touched it and the aftermath wasn't pretty. His order was turning to chaos and he was not happy about it. We did our best to talk him through it and calm him down. In hindsight, if Lia wasn't there, Evan would have probably delved deeper into those rigid behaviors and we wouldn't have had the opportunity to show him how to work through those feelings of anxiety.

Finally, Evan started to realize Lia was around and could be put to good use. Evan has always been heavy into scripting. He will often repeat or act out dialogue from shows or movies. At two years old, Evan used very little original language. He was always scripting and soon discovered that Lia was a great prop. We spent a great deal of time teaching Evan that Lia had feelings and she didn't like to be hit over the head with a broom stick. Although I think she was just happy he was paying her some attention.

When Evan was three years old, he was diagnosed with Asperger's Syndrome and we immediately got him into speech therapy, occupational therapy and social skills. By the time Evan turned four years old we had seen lots of progress and were ecstatic. As Lia got older we realized that she was a little sponge and was picking up on everything. When the yard men would arrive and Evan would get worried she would say, "it's OK Evan, it's just the lawn guys, they're cutting the grass." When a movie scene was on that Evan didn't like, he would cover his ears and Lia would notice. She'd say, "it's OK Evan, it's not too scary" and go turn down the volume. His little sister had become his little protector.

A challenge with individuals with Asperger's is identifying with other people's emotions and showing empathy. Well, one day Evan woke up and was overflowing with empathy for his sister. We were going out to dinner and trying to get the kids out of the house. We pulled the classic, "OK Lia we're leaving without you." Evan grabbed Lia and practically dragged her out the door while telling us emphatically, "we can't leave Lia, she has to come with us!" We could tell by the tone of his voice that he really thought we were going to leave her and had to explain that we were just saying that to get her to hurry up. It happened again when we were out on a walk and I told Lia that the next time she dropped Emma (her favorite doll) I was not picking her up. Evan lunged over Lia and grabbed Emma for safe-keeping. Literal vs. figurative -- that's a hard one for Aspies.

Evan had always preferred to play by himself, but as Lia got a bit older they began to play together. There has been a lot of chasing each other around the kitchen, turning the couch into the Wonder Pets' fly boat, pretend picnics, and movie reenactments. Lia is always concerned about Evan and Evan is equally concerned about Lia. In the morning when everyone gets in bed together, the first thing I hear is Evan saying, "LIA!!!" His face lights up and he goes in for a big bear hug. She usually claws his face (she's not a morning person). But there is love and I see it and feel it and it sustains me. Then I put on a show and try to get 20 minutes more sleep.

I know the path of their relationship will continue to twist and turn, but I hope their love for each other will keep their bond strong. I hope they continue to protect each other. I know that Lia has already taught Evan so much and her place in his life is extraordinary. I hope she will feel the same way about him. Those first feelings of empathy and concern have swelled into serious love and affection. They are the best of friends. I know that if he can feel and show love with his sister, he will do so with others and have many more successful relationships in his life. But this one is so special because this one is forever.

Forging Friendships

One of the biggest and most constant challenges for individuals with Asperger's Syndrome is socialization. There are many factors that may contribute: communications difficulties, inability to read social cues, and an overall disinterest in fitting in or accommodating peers. This all rings true for Evan. The good thing is that he is so happy playing on his own that he has been oblivious to all the friendships formed around him and without him.

As parents, we have to teach our children with Asperger's all the things that come so naturally to neurotypical children - even something as fundamental as making friends. Evan takes a two-hour social skills class once a week where the instructors focus on things like taking turns, answering questions, maintaining eye contact, awareness of personal space and a multitude of other things that most people don't even realize they know and implement on a regular basis.

These skills are also reinforced during Evan's weekly speech therapy sessions. Many of his communication difficulties stem from Auditory Processing Disorder (APD). Auditory processing deals with how the brain recognizes and interprets sounds. Some symptoms may include difficulty maintaining focus, following multi-step directions and recalling information. Children with APD also need more time to process information and have a hard time understanding correct uses of language and answering questions. Luckily, Evan has an amazing speech patholgist that works with him every week, provides homework for reinforcement and suggestions for skill-strengthening games to play at home.

Because Evan struggles with communicating, he often reverts back to scripting (or echolalia). He memorizes books and dialogue from shows or movies and repeats things over and over. He loves to reenact scenes and if there is a mirror around, forget about it. I can't tell you how many times I hear, "you have to get him into acting!" People think it's adorable and funny, but at 4 1/2 years old we fear that the day the cuteness will wear off is looming. In fact, a few weeks ago, Evan was repeating dialogue from Dora the Explorer in school. One of his classmates said, "Evan, we're not in Dora world...we're in the real world!" Hopefully, the more appropriate language he learns, the less he will script.

Amazingly, we have seen tremendous progress on the friendship front. We have always had plenty of playdates with family, friends and neighbors. Evan would always be off on his own completely uninterested in engaging with the other children. Recently, that began to change. Though he still prefers to play on his own, he has begun to reach out. He'll ask, "what are you playing with?" or he'll say, "let's play catch." It is so great to see Evan playing ball with a friend, chasing each other around the kitchen or playing pretend with his figurines. It's been a long time coming. At school last week, he played a Clifford board game with a teacher and his classmate, Sofia. His shadow told me after some nonverbal prompting he was very comfortable taking turns, sharing and following directions. At the end of the game, Sofia looked at Evan and said, "you're my good friend."

To see Evan make a friend and develop a close bond has been the most positive and rewarding gift. Evan and Nicholas met in class and hit it off instantly. They are both happy, quirky, silly and adventurous little boys. They love to play hide and seek at recess and can often be spotted running around holding hands (the photo above was captured by their wonderful teacher Ms. Kelley). At the end of the day I get to watch them dart around on some private amusing escapade that keeps them both giggling nonstop. One day last month, as I gathered Evan's jacket and lunchbox, I told him to say goodbye to Nicholas. They embraced in a big hug and Evan said, "Nicholas you're my very best friend." Ms. Kelley and I looked at each other with beaming smiles and eyes brimming with tears. This may be Evan's first friendship, but certainly not his last.