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.