It Gets Worse Before It Gets Better

It's been exactly two years to the day since I last wrote about Evan's journey (a total coincidence which I find pretty weird).  I didn't intend to be on hiatus for so long, but sometimes life just gets in the way.  Well if I'm being honest, I got in my own way.  I try to be a very positive person.  I like to see the bright side of things and the good in people.  But you know that saying "too much of a good thing is never good?"  Sometimes, I can take that positivity to an unhealthy degree by avoiding the negative things going on in my life.  I have been known to completely reframe reality to make it easier to handle.  Choosing to be positive is one thing, but avoiding negative emotions is never good.  They always come back in one way or another...usually to bite you in the ass.  The last two years have had lots of ups and downs and the downs were really hard for me to deal with.  I enjoyed writing about Evan's progress and breakthroughs, but now I was faced with writing about some really tough times - not so enjoyable.  It took me a long time (about...ummm...let's see...two years!) to realize that was truly the reason why I wasn't writing.  They say it's easier to keep up than to catch up, so I've got a lot of writing to do.  Evan is in second grade now.  My last post "Charting a Course" discussed the start of his Kindergarden year.  So hop in my DeLorean people!  We're going back to 2011!

Evan's Kindergarten program was a whole new ball game for Evan.  It was his first full day program and it was all ABA, all the time.  For those of you not familiar with Applied Behavior Analysis (ABA), it is the science of human behavior -- the process of systematically applying interventions to improve social behaviors.  It's kind of hard core.  Every moment is made into a teachable moment, with tasks and rewards throughout the day.  Everything is recorded so that the data can help guide the interventions and keep track of the progress.

A friend, who is a special education teacher, told me a little about ABA and said, "remember, it gets worse before it gets better."  There is nothing as valuable as hearing the right thing at the right time.  I repeated this mantra throughout the year, focusing on the "better."  Our roads to goals and dreams are never easy.  Progress always takes hard work and perseverance.  If the end result was going to be "better" I was going to buckle up and pray we arrive there in one piece!

Every day there were constant demands placed on Evan.  In his old school, if things got stressful his aide would take him for a walk.  Well, the walks and way outs were long gone now.  If there was a task Evan had to complete, he had no other option than to complete it.  But it took Evan most of the year to figure that out.  He was constantly pushing back, being non-compliant and even aggressive.  He would rip up papers, knock over toys and kick chairs.  This scared the hell out of me.  Was he changing?  Was ABA turning my sweet boy into a violent kid?  Was this the right program for him?  These were the moments I reminded myself we were in the "worse" phase and God willing we'd get to the "better" phase at some point.

At Back to School Night the teacher had put together a video of the kids participating in daily activities and lessons.  We couldn't wait to see what this new program was all about and to see our little guy in action.  Except he wasn't in the first scene, or the next, or the one after that.  He was only in one scene where he stomped off refusing to participate.  Another punch to the gut.

Evan was also picking up really great new traits like blowing raspberries and teasing.  I would constantly get reports of Evan bickering with another student.  One day I sat Evan down to ask him about his new talent for teasing.  I had a hard time believing he was doing it to be mean.  I wondered if there was another reason for the behavior. Open-ended questions are difficult, so I made it multiple choice.  I asked Evan, "Do you tease Ethan because you don't like him or because you want to play with him?" He quickly replied, "To play with him because he's my friend."  Socializing is difficult for Evan.  He had finally started to show interest in playing with other kids, but had no idea how to initiate play.  He picked up teasing and found that he got a strong reaction pretty quickly.  So he continued to put it to good use, never differentiating good attention from bad attention.

After settling back into school after winter break, I received a note from his teacher and this one was actually a good one!  It said, "Evan helped a friend today.  He was trying to put his folder in his cubby and it kept falling out.  Evan asked if he could help him and then put the folder at the bottom of his cubby for him."  This was a ray of light during a dark time.  He was aware of his environment, he independently offered to help a friend.  When I read it, I told Evan, "I am so happy I could cry."  He looked at me confused and asked, "But if you're happy, why are you gonna cry?"  Wow, this was another great sign that he was understanding emotions!  I finally had hope we were heading in the right direction.

Evan had started to be a little more "go with the flow."  His behaviors were not quite as rigid and he was more open to tolerating or trying new things.  He is a picky eater and new foods of any kind are such a challenge.  One day we were eating apple cider donuts on our way home from apple picking when we heard Evan in the backseat say, "I'll try a donut."  And he did!  He didn't like it, but that is so not the point!

Thanks to all the ABA data, we learned that although Evan was still having a hard time at school, his outbursts were less often and when he had them they were shorter, less severe and followed by a quicker recovery.  We were starting to see improvements across the board.  One day at home, Evan was in the midst of a repetitive behavior while playing.  I asked him on a whim, "Why do you like doing that?"  He replied, "Because my brain thinks of it." "And what happens if you don't do it when you're brain thinks of it?" I asked him.  "My brain says it over and over."  I was blown away by this insight and so thankful he was able to communicate it to me.

One day, I was in the kitchen while Steve (my hubby) was clearing the table.  He looked up at me and asked, "Why is it so quiet?"  We stared at each other for a moment before it dawned on us at the same time.  Evan wasn't scripting!  His constant chatter had become the backdrop to our lives and now it was eerily quiet.  Evan went into his Kindergarten year scripting about 75% of the time and by the end of the year he was only scripting about 25%.  It was a huge change!  The scripting was replaced by novel language (often hilarious), observations (pretty impressive) and engaged conversations (brief but thrilling).  And sometimes it was replaced by plain old silence, which was fine by me.  It's a bit like a balance scale.  As his communication and pragmatic language improve, his scripting decreases.  As his scripting decreases, his mind opens a door to more learning and connections.

It was a rough year that had us facing many obstacles and challenging behaviors, but we were finally seeing changes . . . for the better.