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!