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.