The Mighty Movers

We'd been reveling in Evan's success and forging ahead with his weekly therapies, when November 12th rolled around. It was a day that I had dreaded, but had no choice but to face. It was the three year anniversary of my father's death, but the passing of time did not seem to make things any easier. Although I wanted to live under the covers for 24 hours I knew I had to throw it into Mommy gear at the first sounds of mumbling over the monitor. The morning rituals kept me busy and after dropping off Evan at school I had some time to run a few errands. Apparently they transferred that giant magnet under the island from Lost to Target. That store draws me in every week and I can't walk out those automatic doors without a cart full of stuff I had no idea I needed.

After some strategic trunk rearranging to fit all my purchases (yes, I need a snow cone machine) it was time to pick up Evan from school. I perked up when I saw his excitement after reminding him of our upcoming outing. We were all going to see the Imagination Movers in concert that night. It was his favorite show and also his little sister's. I dreaded the moment when that would change and there would be serious fights over the remote control. But for now we were all looking forward to the big show. Since we had front row seats and this was Evan's first real concert I knew I had to prepare him as best I could. Evan has sensory issues, so I talked to him about the crowds, bright lights and loud noise we would be encountering. He had come a long way in the last year in that department, so I hoped that there would be no major issues.

After a lively 45 minute drive to the venue and listening to every Imagination Movers song twice, we were ready to rock. Our seats were great and Evan seemed to understand that we were about to see Rich, Scott, Dave and Smitty in person. I'm not gonna lie...I was excited too.

The show was amazing and the kids were having a blast. Evan was dancing and singing and loving every minute of it. He did cover his ears a few times, which is what he does when he feels overwhelmed. Other than that, it was a major success. Since the guys were so close, Evan got lots of waves and high-fives throughout the set. The highlight was when Rich came down and knelt right in front of Evan. He was jamming on his guitar and Evan had his hands over his mouth like he couldn't believe it. He kept looking back at me with a face I will never forget. His eyes were in awe and his smile was huge. When I thought it couldn't get any better, Rich handed Evan his guitar pick. It was such a great moment!

An otherwise sad day was made a whole lot better. Evan was practically ambivalent toward the crowds and noise, which was a great accomplishment. The concert was so much fun and there is just nothing like your kids' smiles to lift your spirits.

www.nytimes.com/2009/11/03/health/03asperger.html?_r=1&scp=1&sq=aspergers&st=cse

A Powerful Identity, A Vanishing Diagnosis.
By Claudia Wallis
The above article was published on November 3, 2009 by the New York Times.

2012 may or not be the end of the world, but Asperger's Syndrome as we know it may be headed for extinction. According to Wallis, the diagnosis is "headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012."

This news must be troubling and unsettling to anyone who is in the Asperger's community. Though it is currently considered a form of high-functioning Autism, The label "Asperger's Syndrome" carries it's own definition, characteristics and pride. For as many general similarities present there are distinct differences. Yes, labels may be insignificant in that it doesn't change who a person is, but it does matter. The diagnosis is one of the important building blocks that lead to a better understanding of the individual. First there is Autistic Spectrum Disorder, then Asperger's Syndrome, then more precise issues. For example, a child may be diagnosed with Obsessive Compulsive Disorder, Sensory Processing Disorder or Pragmatic Language Disorder. On top of that there are the very unique characteristics and quirks that are specific to every person. Like the quote mentioned by John Elder Robison, "When you've met one Aspergian, you've met one Aspergian." Everyone is unique, but I truly hope they let the community hold on to that thread that binds them all together because it does matter. Here's an example:

Just imagine, the President passes a bill to eliminate Georgia from the United States. Georgia will be there geographically, but the name will be eradicated. He says, "it's so close to Florida - mine as well just consolidate and call it Florida too. Hey, that's one less state flag that has to be made. I know you guys got peaches and they have oranges, but it's all fruit. It's pretty much the same thing right?"

No, it's definitely not the same thing.

Birthday Surprise

Evan turned four years old on September 7th. We gave him lots of goodies to commemorate the occasion, but he gave us one big surprise. Since Evan was 15 months old he loved to memorize things. First it was words, then pictures from books and flash cards, then maps and names of composers. When Evan started memorizing all of his books we weren't too surprised. He loved playing computer games that taught pre-reading skills and I had briefly touched on the concept of sounding out words.

One night when Evan was reciting one of his bedtime books I realized he was now following the words and sentences on the page. I didn't think too much of it. My Mom came down to visit and celebrate Evan's birthday (and his sister's who turned two years old the day before). She brought with her the set of phonics books I had when I was little. I remembered learning to read from the books and was so happy she held on to them. We gave one to Evan and he opened it up and read...the whole thing! Surprise, my son knows how to read! I was in such shock. As a former teacher, I know what a long process learning to read can be. I couldn't believe Evan had basically taught himself. What a feat! I gave him the next book in the series and he read that, pausing to sound out any unfamiliar words.

A few days later I took Evan to his weekly speech therapy session. I mentioned to the pathologist that I had just realized that Evan knows how to read. She said, "Oh you didn't know? He has been reading for me since he started here in July."

Another perk of being an Aspie!

September to Remember

What a difference a year makes! In 2009, September brought with it even more reasons to celebrate Evan's progress.

After a fantastic summer, we were keeping our fingers crossed for a smooth transition back to school. Last year's first day of school was one of the saddest days ever. So there was no direction to go but up. Evan met his new teacher, Ms. Kelley, and seemed excited about going back to school. Sure enough, on the first day, he barely even said goodbye. He marched right into the classroom with a huge smile on his face. Major relief! He absolutely loved his new teacher and Ms. Josefa, his wonderful teacher from camp, worked with his class as well. This year we decided to have a shadow work with Evan once a week. This way there would be a skilled professional that could help Evan focus, guide appropriate social interactions, gather data on behaviors and work with his teachers. Ms. Aileen has been a great addition and instrumental in Evan's success at school. Every single day he makes a beeline for his classroom and I have to beg for a quick kiss goodbye.

Towards the end of the month I noticed Evan making better eye contact and asking more questions. He turned another little corner and it was great to see. When I picked him up from school his teacher said he looked at her and asked, "Ms. Kelley can I sit in your lap?" Later that week I took Evan to get his four-year check up with his pediatrician. While in the waiting room, Evan noticed a boy a little older than him tossing a small stuffed animal up in the air. He watched with a smile for a few minutes and then hopped off the chair and said, with his arms outstretched, "Throw it to me!" I couldn't believe he initiated play - with a stranger no less! They laughed and tossed the stuffed animal around until Evan's name was called.

A few days later, when I came to pick up Evan from school, I got a wonderful surprise. Ms. Kelley said Evan played hide and seek with a friend during recess. I think I stood there with my jaw unhinged for a few seconds too long, but I just couldn't believe it! His teacher said he had been interacting a little more on the playground, but this was a HUGE step. His shadow, Ms. Aileen, now knew what children were more open to playing with Evan and she would be able to help initiate games like hide and seek. At home, Evan was beginning to interact with his sister more. They were starting to play by chasing each other around the kitchen or playing with her dolls. Evan also interacted more by bossing her around. We would see Lia walk into the playroom and hear Evan say, "Lia go play with something else." Now that is what a brother and sister are supposed to sound like.

Since Evan was little he has mostly been attached to his pillows, diving underneath them every night when it's time to go to sleep. There have been a few stuffed animals that have managed to stick around. Every so often I would ask Evan to give them names, but he never would. I knew it was a very open-ended question that would take some thought and imagination. But little kids are supposed to carry around their tattered teddy bears with silly lovey dovey names! So I never gave up asking. On September 22nd it happened. After reading some books at bedtime, I picked up Evan's teddy bear with the brown silken fur given to him by his Grandmother when he was a baby. "What's his name?" I asked. Evan looked at the bear and paused. I saw the wheels turning and couldn't wait to hear what he was going to say because I could tell he was trying to come up with something. At that point I would have taken anything! If he had said Pooper Scooper I would have made a plaque with Pooper Scooper's name and birthday and treasured it forever. Evan looked up at me, smiled and said, "Huggy." A lovey dovey and totally appropriate teddy bear name that he came up with all by himself...and it was much sweeter than Pooper Scooper.

Summer of Change

This Summer was a wonderful time where Evan progressed leaps and bounds. It was amazing to see him evolve and change over such a short period of time. It is hard to say what exactly triggered such a noticeable change because there were too many altered variables. Maybe it was one thing or a combination of everything, but whatever it was worked wonders.

We enrolled Evan in camp at his school to keep some consistency in his schedule and allow him to spend more time working on socialization with his peers. This would be the first time he would be going to a different classroom with new teachers. We set up a meeting beforehand which helped with the transition. The first few days he wanted an extra hug when saying goodbye, but was pretty much OK with the whole thing. Whew- major relief. He ended up having a great time at camp and his shadow facilitated lots of interactions with his classmates. He also really liked his teacher, Ms. Josefa, who was very loving and understanding of Evan's needs. At the end of the session they had a show in the auditorium. Evan had been doing the duck dance at home a lot, so I was anticipating more participation than previous shows. My husband and I were in for a shock. The kid hammed it up the whole time! Following along, singing the songs, dancing, laughing and speaking some lines- he had such a good time up there! Teachers and parents stopped us afterward to tell us what a great job he did and how it looked like he was having the best time on stage. He stood out for a very different reason this time.

Evan had been in OT and Speech for a while, but I was starting to thing it might be time to give therapy a little kick in the butt. When June came around and both his therapists were going to be out for a number of weeks, I decided it was a sign to make the move. We switched to a small private practice and met his two amazing new therapists on July 9th. They were both energetic, warm and knowledgeable in their respective fields. I was worried making the transition would be difficult for Evan, but he took to them immediately. Previously, he always wanted me to stay in the room with him. Now he waved goodbye and went off with a smile. It was great to see he was so comfortable and sitting in the waiting room gave me lots of time to catch up on the stack of books that was gathering dust on my nightstand.

One thing that had to have been a major component in Evan's progress was the addition of a social skills class. The small three-student class met once a week for two hours. The instructors implemented ABA therapy and encouraged lots of participation through circle time, games, music, art and other activities. Evan especially loved the weekly show and tell segment.

There was yet another addition to Evan's busy schedule. My friend introduced me to a young woman who was looking for work as a babysitter. She was a student who had worked quite a bit with children on the spectrum and who successfully implemented Play Therapy in her work. Play Therapy (also known as Floortime or Greenspan Method) is where the therapy is focused on the child's interests and emotions and problem solving and social topics are brought up through interaction and play. After meeting Lauren, I knew Evan would be drawn to her bubbly and fun personality. She came once a week and spent two hours playing with Evan. After a few weeks I couldn't believe what I was seeing. He would abandoned his beloved computer games at the mention of Lauren's arrival. They would ensconce themselves in the playroom where they must have played with every toy there. She would be on the floor with him, playing and asking questions and Evan would be completely engaged. He played with her in a way that I had never seen before. They would make up games, be imaginative together and Evan wouldn't lose interest for a second. Evan would laugh his way through those two hours every week.

On July 18th, Evan turned another corner. I knew the Asperger's cloud had lifted a little more when he told me he wanted breakfast and asked what I was making him. He was just a little more engaged and interactive. He was making more observations and asking more questions. It was another building block and we were so excited to revel in his progress.

Spring Forward

With Spring comes change and in 2009 it was no different. We were still marveling at Evan's improved use of language. My husband and I would smile broadly and shake our head in amazement whenever Evan said something new. A question as simple as "Mommy, can I have more ketchup please?" was like a little gem to us. In the Fall the question "what did you have for lunch?" elicited no response. Now Evan could tell us what he had for lunch most of the time we asked. When I asked him what he did at school that day he could frequently tell me at least one thing.

His gross motor skills were improving as well. We purchased a swing set for the backyard and watched as Evan climbed the rock wall and ambled up the ladder with more agility and confidence than ever before. Seeing him use a regular swing for the first time was great (although he still asks to be pushed and can't quite get that pumping maneuver down).

Unfortunately, not all change is the good kind. At the end of April Evan turned a corner and it wasn't as celebrated as the changes that came before. He began to act out quite a bit. He was ignoring rules, testing boundaries and becoming well-acquainted with the time out corner. His teacher, Ms. Bunny, and I talked about his new behavior frequently. I felt bad that Evan was going through this phase and acting out in school. I worried that it wasn't a phase and this would mark a new side to my boy. I always held on to Evan's happiness and radiating smile. I didn't want to lose that part of him that shone so brightly. That was the part that made everyone fall in love with him and root for him.

I started to really think about the timing and nature of these changes. Soon I came up with a theory that made sense and made me feel a little better. Think about the "terrible twos" for toddlers. That change comes about as they start to realize their place in the world, express themselves and form their own opinions. They begin to act out and test this new and exciting world and all the people in it. In March the cloud of Asperger's lifted a bit and Evan started to engage in what was a new world for him. He was expressing himself more and communicating more clearly. Evan may have been three and a half years old, but this was his "terrible twos." A few months earlier Evan would have been lining up toys on the carpet completely oblivious to those around him. Now he was knocking over blocks, climbing on tables and switching the lights off. Yes, this behavior in and of itself was not a good thing. But the meaning behind it was. Evan was engaging in life. We just had to set rules, enforce boundaries and teach him how to do it properly.

During this time, Ms. Bunny suggested having Evan evaluated by a behavior analyst from an early intervention center. His behavior was unpredictable and we were all concerned about the upcoming summer session and school year. The following week a behavior analyst observed Evan in class. I was surprised how well she grasped Evan's personality, strengths and weaknesses during those few hours. She noticed Evan had trouble socializing with the other children in class. He would play independently with no interest in interacting with his peers. She suggested enrolling Evan in a social skills group. I didn't even realize that social skills classes were available to children as young as Evan. We signed him up for the upcoming summer session immediately. We also decided it would be a good idea to have a shadow for Evan during the five week summer camp session. This would help Evan transition to a new classroom with new teachers. The shadow would also assist Evan in improving his social skills. We felt like we were starting down a new path and only saw progress ahead.

May 20th was Evan's final show as a student of the Moon Room. As usual, the level of anticipation was at an all time high. At his first show he was kind of in a haze and when he wasn't, he was covering his ears or running off the stage. We were really keeping our fingers crossed for a better performance. We hoped he would have fun and not get too upset with the level of noise in the auditorium. Ms. Bunny had said he was running to the edge of the stage during rehearsals and wasn't sure how he was going to do. The lights dimmed and we watched Evan's class perform. Our little guy was doing OK- he sang some of the songs and participated in playing the drums and dancing. But there was one portion that was hard to watch. All the boys from his class came to the center of the stage and Evan stayed sitting down off to the side. Steve continued to film as he squeezed my knee. My best friend sat next to me and rubbed my back. My friend, whose daughter was in the same class, turned around and we exchanged a look. Nobody needed to say a word, but we were all saying the same thing: this sucks! I felt the unsolicited tears wet my face. I was just not emotionally prepared. It was like a giant flashing neon sign that said: LOOK AT MY BOY! HE IS DIFFERENT! I tried to get it together and enjoy the rest of the show. Afterward, I approached his teacher and asked what had happened. She said the school director was worried about him running off the stage and wanted to err on the side of caution. I understood the decision, but wish I had been told prior to the show. If I had known I wouldn't have been caught so off guard. In all honesty, if it was up to me I would have given him the same opportunity as everyone else. If he began to act inappropriately I would have had him sit down then. Unpredictability goes both ways. Evan could have performed and behaved well and surprised us all. But we'll never know.

Turning a Corner

"March 10, 2009: This day will go down in history as one of my favorite days ever." [Insert row of smiley faces here] That was the first line of an entry in Evan's progress journal. It could have come right out of my sixth grade diary when a new seating assignment put me next to the cute boy in class, but I was actually referring to the day Evan turned a HUGE corner. It was literally like he woke up and the cloud of Asperger's lifted a little. He left a bit of his world behind and decided to hang out with all of us. He started communicating and understanding in a way that was so much more clear. He began making more observations, asking for help, answering questions, conveying things that were happening, speaking in multiple sentences, displaying less show talk and generally being more aware of the people and world around him.

On the way to school (a 20 minute drive) he did not revert to show talk once. He stared out the window with a wide-eyed gaze and told me all of the things he saw- trucks, school buses and birds. It felt like he was noticing it all for the first time. When I picked him up his teacher had picked up on it too. He had been more engaged and communicating more appropriately. She said at lunch he saw a girl crying and went up to her and asked, "what's the matter?" At home I documented some of the highlights: "Mommy, can I have a fork please?" "Mommy, I got a boo boo on my knee. Can I have a band aid to make it feel better?" "I don't like that noise, it's too loud."

This overnight progress was mind-blowing and definitely worthy of making March 10th one of my favorite days ever!

Hi Goals, Nice to Meet You

Evan was now about two months into speech and OT. He was having fun, working hard and we were doing as much as we could to reinforce what he was learning at home. The first time he met one of his goals it was so exciting and very fulfilling to know everything was actually working. Meeting goals and seeing progress was like an addiction. After the first time I wanted more and more!

Evan was becoming more adept at running, kicking and jumping. All of his work at OT dealing with his sensory issues was paying off as well. His reactions to loud noises were becoming less severe. He may get upset, but the major breakdowns were a thing of the past.

Since so much of Evan's speech was memorized or mimicked he only spoke the way he heard us speak to him. For example, he would say "you went to school" instead of saying "I went to school." Getting him to get his pronouns straight was a long process. First we had to teach him to correct himself with a verbal cue, later with a non-verbal cue and eventually he began to self-correct. After about eight weeks of speech he started to use "I" and "you" appropriately.

One day on the way home from school I asked Evan the usual questions and I expected the usual absence of answers. But the conversation went down differently than usual.

Me: What did you paint at school today?
Evan: You painted Earth.
Me: I didn't paint Earth.
Evan: I painted Earth at school.
Me: Did you play with your friends today?
Evan: You played dress up.
Me: Who played dress up?
Evan: Evan.
Me: What did you wear?
Evan: A black tee shirt.
Me: What about Andie?
Evan: Andie wore a princess.
Me: How about Max?
Evan: A bat (batman I think)
Me: And Aylinn?
Evan: A fireman.

My first thought: Holy shit we just had a conversation!!!!!!!!!!! It was the coolest feeling and I was beaming with pride! The last time I asked him I got dead air and this time he was able to answer all of my questions. The next day I looked in his cubby and sure enough a painting of Earth was peeking out. He's communicating and telling the truth- awesome!

School Daze

We had dedicated the summer to preparing Evan for school and the first day was fast approaching. I had allowed myself to tiptoe around Pandora's box, but the week before school began I knew I had to pry it open. Evan was going off to school...without me! We were always together and I felt a little bit like his guide dog and was terrified of handing over the reins (I am mixing two metaphors, but you know what I mean). What if his teacher didn't understand why he was upset? What would they think when he started reciting Little Einsteins nonstop? Would Evan understand the concept of school? Would he know that I was coming back for him? I was letting myself think of all the what-ifs and crying daily. I knew I had to do my best to prepare Evan, his teachers and myself. School was set to begin and Evan was still a couple of weeks away from seeing his pediatric neurologist. I called his teacher, Ms. Bunny, and tried to explain a little about Evan and his behavior. I told her there was something up, but we weren't exactly sure what it was. She was so warm and encouraging that my anxiety eased a little. We nixed the class orientation and brought Evan to meet his teachers and see his classroom privately. He seemed OK, but there was an overall question of: "Does he really get it?"

The first day arrived and there were a whole lot of tears. I dropped off Evan and he cried. I got in my car and I cried. I called and they said he had been crying on and off all day, which made me cry. I arrived to pick him up and checked his lunchbox. He hadn't eaten a thing and that made my stomach drop because usually he was a plate cleaner. When the door opened and he saw me he was sobbing and saying, "you came back" over and over. I burst into tears (so much for keeping it together in front of him). It wasn't so much what he said, but the way he said it. I could tell he really didn't understand where I went and if I was ever coming back. My heart shattered right there on the old linoleum floor. Most kids get upset when they are starting school, but for my little boy it was a million times worse. I was disrupting all the routines he had in place, taking him out of the comfort of his home, away from his Mommy and no matter what words I used to explain, he could not understand what was happening to him.

Another reason for my broken heart: seeing Evan so upset. He never had tantrums, hardly whined and always had a smile on his face. This was so out of character for my little guy! As much as I wanted to home school him after that first day, I knew I had to do what was best for Evan and move forward. I also knew the only thing that could help was time. School had to become part of his new routine and his teachers had to become part of his new life. The first two weeks were brutal. He cried on and off every day of school, but eventually it tapered off.

His teacher was wonderfully loving and kind and also very helpful. She recognized the behaviors I described and was glad we were taking him to see a neurologist. She always gave us a detailed report of Evan's school day. Every day on the way home I would ask him about school, but I never got a response. During this time Evan was still very much in his own little world - in a bit of a daze. At least that world was a happy place and was opening up to include new people, interesting places and exciting adventures at school.

But as the weeks progressed, we came to realize that being in school presented a whole new set of challenges for Evan. He enjoyed being there, but if the assistant teacher was out he would be completely thrown off. If the schedule was different he had a hard time. If there was a show in the auditorium, Evan would be so upset about the crowds and loud noise he would have a total breakdown. I had a talk with the teacher to make sure that we were on the same page. I didn't want Evan removed from the situation every time he was upset. I wanted them to help him work through his emotions, so he could develop the tools to deal with what was going on. I knew escaping the problem was only going to prolong it. At school Evan was able to learn how to deal with many situations and in time was able to show great progress.

Getting on Track

After Evan's diagnosis, we made a round of phone calls to our close friends and family. We decided to be selective about who we told. This was all foreign territory and we determined that going slowly would be our best bet. After a few calls, we wished we could press fast forward. People weren't sure what Asperger's was and weren't sure what to say and it all added up to an awkward conversation. Someone even said, "Well, at least he doesn't have like cancer or something." Everyone wanted to make me feel better, but didn't know what to say and neither did I.

Evan's pediatric neurologist had advised us to start occupational therapy (OT) and speech therapy for Evan. First he would need evaluations. We called our insurance company and after taking notes and asking questions realized we might need to hire a translator. Understanding our coverage was pretty confusing. There was only one place that would accept our insurance, a local children's hospital. We set up the evaluations and waited.

In the meantime, a friend put me in touch with a mom whom I had met previously. She had a special needs son and spent an hour on the phone with me giving me advice. I realized how important it was to have support and the knowledge of those who had been there before me.

Evan had his OT evaluation in October and we watched as the therapist practiced different skills with him. It was very interesting to learn reasons behind some of Evan's behavior. Next up was his speech evaluation. I sat in the tiny chair in the tiny room as Evan took test after test. He spoke very well, except for the issue of pragmatics. Evan didn't understand context or how to use language in daily life. For example, she asked if Evan ever asked me for help. I realized that I knew what he wanted and gave it to him. He didn't need to ask. It looked like we would be making a lot of changes at home.

I was anxious to read up on Asperger's Syndrome. I quickly realized there were two types of books: informative ones and personal accounts. Although the former are important and helpful they are also...depressing. I was kind of sick of hearing how my child would have no friends, be bullied and become depressed. It is essential to be aware and prepared, but I needed more than that. I needed to read about progress. I needed hope. I read Look Me in the Eye by John Elder Robison first. I was fascinated at the insights I was gleaming from his childhood. There were a few parts where I felt like I was looking into my son's mind. Evan slept under his pillows every night. Robison did the same and discussed how he felt safe and comfortable underneath the heaviness of his blankets and pillows. This book inspired me to seek out more personal accounts from people with Asperger's and parents raising children with Asperger's. Success stories are the very best recipe for hope.

Diagnosis

September 16th arrived and we geared up for Evan's big appointment with the pediatric neurologist. I was armed with my notes and a bag of toys and snacks for my little guy (who knew how long we'd be parked in the waiting room). I was nervous and anxious, which always puts me into a more emotional state. Evan was such a happy, laid-back kid and my concerns were not that noticeable to most people. I wanted to hear that I was not crazy and all my observations added up to something real.

We were called in after a short wait and met the doctor. He seemed very kind and spent some time talking and playing with Evan. He asked him to toss a ball and Evan went up and set it into his hands. He asked him questions and Evan just evaded his stare. He asked him to draw a circle - no such luck. He had a bag of Disney figurines and Evan began standing them up in a line. When he got to Donald Duck the doctor said "Oh, he's broken. He doesn't stand up." Well, he didn't know how persistent my little guy could be. Sure enough he balanced Donald in just the right way to get him standing and the doctor had a good laugh. I told him about Evan's love of maps and kicked myself for not bringing one. An intern was with the doctor and he had a pocket calendar with a tiny map of the United States. The doctor thought the map would be too small, but I said he should point to a state and give it a try. Evan named every state they asked.

I set off on my endless dialogue of notes. The doctor listened intently and I kept on reading. Finally I got to the end and looked up. The doctor tilted his head to the side, smiled and said, "Do you want to know what I think?" I explained that I had wanted him to get a well-rounded understanding of Evan and that I was leaving everything else up to him. He stated that Evan had Asperger's Syndrome and explained it was a type of high-functioning Autism. I wasn't surprised, but hearing it from his mouth made it so real. I knew from this moment on life would not be the same. The words were on a loop in my brain as I stared at the face of my young son. I couldn't stop the tears from coming as I nodded along to everything the doctor was saying. He said he'd never diagnosed somebody as young as Evan and such an early diagnosis would be a beneficial head start.

The car ride home was like being stranded in emotional limbo. My husband and I were relieved that Evan's behaviors had a name and it was something we could research and work on. We were saddened at the thought that our child would be looked at as "different." Words like 'Autism' and 'Special Needs' still hung heavily in the air. At home I hopped online and ordered nine books on Asperger's Syndrome and started reading lots of articles and websites. Look out Asperger's, here we come!

Putting it all Together

During a visit to Evan's pediatrician's office, I noticed Evan was deep into show talk and I motioned for his doctor to check it out. He was reciting "Whale Tale," an episode of Little Einsteins. By this time, I had heard it so much I knew it by heart too! He nodded like there could be something there. He named a few options and mentioned he might be "on the spectrum." It didn't fully sink in, but I was relieved he was in agreement that Evan should see a specialist. We made an appointment with a pediatric neurologist right after Evan's third birthday.

Now I had a goal from which I would not deviate. I was terrified that "white coat syndrome" would overcome me and I would not say everything I needed to at Evan's appointment with the neurologist. I worried about being rushed out of the office without the doctor getting a full understanding of Evan. I feared getting a diagnosis and not being behind it 100%. So I started taking notes - tons of notes. I categorized them with topics like: milestones, verbal skills, motor skills, social skills, habits, and concerns. These were the pieces and if I could just convey them to the doctor then he would be able to see the complete puzzle.

During my last night of note-taking I took a mental break to read a few pages of People Magazine. It was a couple of days before Evan's neurologist appointment. There was a book review for John Elder Robison's, Look Me in the Eye. Included was an image of the book cover with a photo of a young boy with his eyes shut tightly and lips pursed. I read the review and stared at the image. I instantly felt knots in my stomach. As my insides tightened, my eyes filled with tears. All this time I focused on taking notes about Evan for the neurologist and would not allow myself to start searching the internet. The doctor would do the diagnosing - not me. But now I was faced with Asperger's Syndrome and I knew deep down that is what my little boy had.

Early Signs (Age 2)

- My little man was now two years old and walking and talking up a storm. He always gravitated towards books and puzzles and was really into flashcards. He just loved to memorize things and repeat the words.
- He loved Little Einsteins and would memorize the names of the composers they featured. He would ask me to play "composers," where I would say their first name and he would say their last. I had to keep a list with their names, as my memory was not as good as Evan's.
- Soon maps became the obsession of the moment. We had a colorful map of the United States framed for his room, but had not yet hung it on the wall. I pointed out a couple of states to Evan and the next day he went up to the map and pointed to the states and recited their names. I was slightly stunned. Every day he would point to more states and ask, "what's that?" I would tell him their names and he would remember. At just over two years old he knew all the states and could even name them by looking at the back of their puzzles pieces. He couldn't get enough of his maps and I hoped people didn't think I was at home drilling him with flashcards to get on Letterman or something. He got down the Great Lakes and some oceans and moved on to a place mat with a map of the world. By 2 1/2 he had about 70 countries down. He was teaching me quite a bit, as geography had not been my favorite school subject. Seeing him point and name countries like Tanzania, Latvia and Chile was hilarious! But we did realize this was pretty out of the norm among children his age.
- Evan wasn't as adept at jumping, running and kicking as his peers. We wondered if being a little bit behind was that big of a deal.
- When it came to coloring my guy was just not interested. The summer before Evan was going to turn three and start preschool, he still couldn't feed himself. We realized we would have to teach him and spent many weeks working on it. Now we know both issues were because he has difficulty with his fine motor skills.
- At an appointment with Evan's pediatrician, I asked why my son was still drooling so much. He said it was teething. His last teeth had been in for over a year. "Weird," we thought. Now we know it was due to low muscle tone in his mouth.
- Evan was kind of in his own world when it came to playing. Not too uncommon for a two year old. Sometimes he would be laughing and doing his own thing and I would smile and say, "he's in his own world and it's a really happy place." Every time I said it, it made me sort of uncomfortable - like there was something heavier about the statement that was beginning to weigh on me.
- Evan would make fleeting eye contact. We thought that was just a personality trait.
- Our future engineer loved to line up toys and and get everything right where he wanted it. It reminded me of a trait that an autistic child might have. I would stop him in the middle to see what he would do and though he would complain, he wouldn't freak out. That reassured me that Evan didn't have autism. I was ignorant. I didn't know that there was a spectrum where children could have the same traits at lesser degrees.
- Evan would memorize the entire dialogue from his favorite shows and recite them over and over again. He loved his reflection and would go to mirrors or the stove to see himself talking and even acting out the parts. Now we know this behavior has a name: scripting.
- He had a very hard time answering questions. By 'hard time' I mean he could only answer questions that were simple and factual (what color is this?, how many ducks do you see?). He could not answer anything else at all. You could repeat "what did you have for breakfast?" over and over again and never get a single response.
- Our friends came to visit and their son was Evan's age. We were shocked at the difference in the way they spoke. Evan was all memorized show talk and his friend made observations, answered questions and said things spontaneously all day long. What an eye-opener!
- At 2 1/2 I called Evan's pediatrician and asked him about the constant show talk. He said to cut down on the TV. After witnessing Evan and his friend and their blatant differences, I called his pediatrician again. He said he would check Evan out at his three-year appointment. What was a few more months?

Early Signs (Age 1)

- The week of Evan's first birthday we started taking a 'mommy and me' type class. The class had a little bit of everything: circle time, songs and instruments, free time, and guided play with a different theme every week. Evan and I were having a blast. By the third class I noticed a glaring difference between my child and all the others. He was the only one that didn't want to crawl back into my lap during circle time. He didn't wander over to me for a kiss or swing his arms around my neck for a hug. Sure I hugged and kissed on him, but he never initiated it. Every other kid looked mommy obsessed and Evan looked ambivalent towards me. As the weeks progressed, I joked with the other moms about it and they just said, "Oh, he'll come around."
- Evan was an early teether. His two-year molars came in at 13 months. But when it came to chewing he had a hard time. We'd learn much later that this was due to low muscle tone in his mouth.
- Most children walk first and then concentrate on talking, but Evan operated in reverse. At 15 months he knew 60 words and we stopped counting. He also had great pronunciation and loved to repeat words and memorize songs and books. He was particularly obsessed with naming all the pictures in his collection of Roger Priddy books.
- At 16 months we realized (like crawling) we would have to really work with Evan to get him walking. He didn't seem to care, but we thought he was due to walk and needed some help. I read that children need to be able to stand independently for 60 seconds before learning to walk. I would distract Evan by asking him questions and hoped he wouldn't realize I had let go of his hands. We practiced in a room with carpeting and did a lot of tempting with toys and cheering with excitement at any step he took. After a couple of weeks he was finally walking (the moment was captured in the photo above)! I didn't think he was that far behind, but in his gym class the teacher announced ecstatically that Evan and Mark were now walking! They had been the only two non-walkers out of a class of twenty and Mark had Down Syndrome. It was cause for pause.

Early Signs (infant)

There were a lot of little signs, but at the time they didn't mean much at all. There were a few moments that made a little more impact and made me really start to wonder. By the time Evan was 2 1/2 I thought, "This has got to add up to something!"

- Evan wasn't the best at sitting up and I felt like I was placing pillows behind him in case he fell over for a couple of months. I attributed his less-than-stellar sitting skills to his weight. The kid was born at 7 lbs. 6 oz., but gained weight like he was training to be a sumo wrestler. At six months he was 26 lbs!
- When it came to crawling, Evan wasn't the least bit interested. When he was ten months old, we visited our friends who had a two year old daughter. When we got home he seemed a bit more inspired to move, but was still stationary. We decided to try and help him along in the crawling process. We enticed him with toys and then graduated to his favorite object, the phone. After a few weeks he would crawl a short distance to get to that phone. We didn't know it at the time, but this would be the first of many occasions when we would have to teach our son things that other children learn naturally.

Our Baby Boy

It might help to start with a bit of a background on my awesome little man, Evan. My hubby, Steve, and I welcomed our firstborn into the world on September 7, 2005. It wasn't the smoothest of arrivals. After pushing for 3 1/2 hours my doctor realized he was face up and kind of...stuck. Let's just say the first few weeks were made bearable by Percocet, ice packs, and my little one's angelic face. Did I mention he was jaundiced? That damn Biliblanket was really impeding on the snuggling for a while there. Evan was a happy baby from the start and slept through the night at ten weeks. I think parents should throw a party to celebrate that milestone! Since Evan was so easygoing and happy we were loving life as a family of three. He thoroughly enjoyed outings and taking trips. When visiting Grandpa in Hong Kong he adjusted to the time change quicker than we did! Our little guy was giggling his way through his first year. Being our first child and not knowing many friends with children at the time, there wasn't a lot of comparing going on. But soon we would start noticing things that were a little different. It would take some time for it to all add up.

Terms of Use

OK so here are my Terms of Use. A disclaimer. Don't say I didn't warn you!

-I am not an Asperger's expert. I am a Mom learning day by day.
-I don't sugarcoat. I tell it like it is.
-I might curse. Didn't I just say I would tell it like it is? I will curse - when need be.
-Excuse any grammatical errors. I may be a former teacher, but I'm not perfect.
-I am an optimistic realist.
-Hope and humor go a long way for me.
-I don't take myself too seriously. Follow my lead.
-I am here to share and learn. Comments and emails are encouraged.

Taking the Leap

Welcome to my first blog post! For the last year I have been debating whether or not to delve into the world of blogging. Last night I decided to go for it and lay in bed until 3:00 am thinking about everything. I'm going public with something that has been very private up until today. That's a big decision. We're approaching the one year anniversary of my son's diagnosis and in that time I have tried to read up on Asperger's Syndrome from every angle. I've read tons of books and Googled to the ends of the Earth. The things that have made the biggest impact are the memoirs, personal accounts and parent blogs. So I thought I might as well convert my "Evan's Progress" journal into a blog and start sharing too. Creating more awareness and understanding for Asperger's is always a good thing. My goal is to document Evan's journey for him, our family and whoever else might be able to benefit from our story.