Wednesday, February 5, 2014

You know you're the parent of a LEGO fanatic when:

1)  you can't help but hover over your child building a new set for fear of one wrong move.

2)  in desperation, you have bitten off a brick in order to separate pieces.

3)  you have been caught doing so by one of your kids and they have said, "you said never to do that!"

4)  you remember the joy you felt the day you discovered the Lego Brick Separator.

5)  You have been putting together a set and SWORN Lego has made a mistake and not included a brick.  You always find said piece.

6)  even if you ever do lose a piece during building, you have more than enough bricks to find a replacement.

7)  you never mix up light grey and dark grey.  Rookie mistake.

8)  you've taken your child to a Lego class, had a Lego birthday party, frequented a Lego store or made the pilgrimage to Legoland.

9)  you daydream about ways to organize Legos and search the internet high and low until you find something that works for you.  Odds are you found it on Pinterest.

10)  unfortunately, the person who cares most about keeping the Legos organized is you.

11)  sometimes during cleanup you can't help but stop to make a cute mini fig.

12)  you know what a 2 x 4 is and it's not a plank of wood.

13)  there have been day-long searches for the right piece, often a specific head out of a million yellow heads.  It usually sounds something like this: Is this it?  No.  Is this it?  No.  Is this it?  No.

14)  your child's Holiday and Birthday lists are 98% Lego sets.

15)  you have scoured Amazon and Ebay for an out of production set.

16)  it still pains you to remember how much you've paid for some of them.

17)  you vaguely remember what your dining room table used to look like before the Lego invasion.

18)  you know too well the acute and searing pain of unexpectedly stepping on a Lego brick.

19)  your child is anxiously counting down the days until The LEGO Movie premiere.

20)  no matter what, those little bricks make your child absolutely happy and that is priceless!

Wednesday, January 22, 2014

HOPE Is Our Four-Letter Word

Kindergarten graduation was upon us and we were so excited!  Evan's class had learned new songs!  Did I mention Evan has a pretty severe aversion to singing?  They had practiced lining up and sitting on the stage!  Evan has a hard time sitting still for extended periods of time.  They were gearing up for the big graduation assembly!  Evan really hates assemblies.  Yeah, this wasn't looking good for Evan.  We were forced to come up with a plan B.  The teacher would reserve seats for our family to sit in the front row with Evan while the rest of the graduating class sat on stage.  Yes, the rest of the graduating class.  As in, every single other graduating Kindergartner would be on stage and Evan would be sitting in the audience.  My emotions were all over the place.  I was so excited for him to graduate and felt so proud at how far he'd come and all he had accomplished.  But, seeing him set apart in such an overt way was like a knife through the heart.  It was one of those neon sign moments.  Where I felt like a flashing neon sign was hanging above my head screaming, "LOOK AT HOW DIFFERENT MY CHILD IS!"  Not a fun feeling.  Steve, Evan, Lia and I found Evan's teacher and she showed us to our seats in the front row.  As we awaited the start of the assembly I felt anxious and tried to concentrate on keeping Evan happy and quiet.  I felt like every parent's eyes were on me.  I'm sure they were wondering about our prime seating and why our son was not with the rest of the children.  Then the school principal approached us frantically.  "You can't sit here!" she said in a panic.  I was caught so off guard.  I explained the plan to her and she expressed no knowledge of the situation and no compassion either.  "You can't have all these seats," she told me.  Already emotional and uncomfortable, I was now extremely pissed off.  "His teacher reserved these seats for us.  He is the only student not on stage!  Where would you like us to sit for my son's graduation?" I snapped at her.  "Well, put the kids on your lap and just take two seats then," she conceded.  "Well, thanks for your understanding and hospitality, beeyotch," I wanted to say.  After she left, I looked at Steve.  I didn't need to say a word.  He knew I was livid.  I didn't want to get up and add to the "all eyes on me" moment, but I had to talk to Evan's teacher.  I found her and told her what happened.  I wanted to make sure she was aware of the situation and that the lack of communication and rudeness of the principal had really put a damper on what was already a challenging day, one that was supposed to be simple and joyful.  We made it through the assembly with Evan squirming on my lap, me constantly hushing him and helping him cover his ears during the singing.  A few collapses on the floor were also added in for good measure.  Afterwards, we went to his classroom where he received his diploma and had a small party with his classmates.  I guess making it through the graduation was his final Kindergarten accomplishment!

Summer break was well deserved and well received.  We took a quick trip to Miami to visit Grandma before the start of Evan's camp.  OK, it's technically Extended School Year, but I didn't have the heart to tell him he had to go to school in the summer.  But regression is a big concern for special needs kids and the ESY program was great.  It was five weeks long, from 9:00 to 1:00, with enough structured time in school during the day and afternoons at home for playdates and trips to the park.  The only problem was that it ended at the beginning of August.  We had a whole month off before school would begin again in the Fall.  For most kids that would be no big deal, but for Evan it was.  He loved being home and being able to "do whatever I want, whenever I want," as he likes to say.  Of course he didn't get to do whatever he wanted whenever he wanted.  I made sure he took iPad breaks and forced him to play outside everyday.  We also carved out time to do math and handwriting work daily.  A few days into our August break things got hairy.  Evan was having tantrums every time I took the iPad away.  And getting him to do any work was torture.  A simple handwriting assignment took 30 minutes -- 27 minutes of fighting and 3 minutes of actual writing.  He was melting down daily.  I remember Lia (4 years old at the time) looking at me and saying, "This is freaking me out."  I completely agreed and knew I had to figure something out.  When all hope is lost, you search until you find it.

I got in touch with his behaviorist from school and she put me in contact with a behavioral consulting group that specialized in ABA and home-based interventions.  The behaviorist assigned to Evan came out to meet him and see what my concerns were.  Kimberly was sweet, knowledgeable, and straightforward (in a very honest and kind way).  The first order of business was creating a written schedule in 30 minute increments.  Kind of tedious, but totally worth it.  Evan was able to see what activities would make up his day and understand when things would be happening.  He'd know that his favorite things would be on the agenda instead of that vague notion of "we'll do that later."  We put unprefferred activities in between preferred ones.  I let him help me choose the order of the schedule, so he felt some control and also accountability.  When I would say we needed a game, I'd let him choose which one.  If it was time to play outside, I would let him choose the activity (sidewalk chalk, obstacle course, etc.).  This also made him think of other things to do besides the one or two favorites pastimes he would have chosen without the framework of the schedule.  Kimberly also had me make notes regarding how many prompts it took to switch activities and any challenging behavior from Evan.  This way we could get insight into when and why things were happening and make adjustments to the schedule.

Next up was the challenge of school work.  I needed to keep handwriting and math on the daily agenda, but was hoping we could do it without 43 meltdowns (especially when half of them ended with me and Lia in tears as well).  Kimberly suggested stickers.  "Um, stickers?" I thought.  "That didn't work with potty training, I don't think it's gonna work now. This kid couldn't care less about stickers."  She asked if I had any stickers that pertained to things he was into.  Being the over-shopper that I am, I had a big stash of Lego Star Wars stickers.  She demonstrated how to use the stickers with Evan.  She put out his handwriting work on the table and called him over.  When he walked over she said, "great job coming right over! You get a sticker!"  This woman had the enthusiasm of a head cheerleader.  This elicited a big smile from Evan and he sat down in his chair.  "Great job sitting down!  You get a sticker!"  He cheerfully picked up his pencil.  "Great job picking up your pencil!  You get a sticker!"  You can see where this is going.  Tons of positive reinforcement and tons of stickers.  And it totally worked.  At one point I looked at Kimberly and said, "I feel like I'm in the Twilight Zone."  Yesterday, writing was equivalent to torture and today it's like a day at Disney.  And all because of stickers?!  We kept up the sticker reinforcement, scaling back slowly.  After a week or so, he would get a sticker for starting his work and a sticker for finishing and he was still thrilled.

The last issue I wanted to address was Evan's use of bad language.  He wasn't into curse words, but would say things like: shut up, stupid, and idiot.  Every time I heard him say something unkind I would talk to him about his language and make him apologize.  Kimberly, saw this in action.  "Is that what you do ever time he uses language you don't approve of?"  "Yes," I said.  "And how's it working for you?" she asked.  "It's not." I replied.  Point made.  She believed Evan was doing it to get my attention and that he didn't mind that it was negative attention.  My reaction was actually reinforcing the behavior.  This was in line with what we learned about his behavior in school.  She also explained that eliminating bad behavior can be a challenging process.  We would have to completely ignore the bad behavior.  Cold turkey. No reaction at all.  Instead, we would have to remain calm and reinforce only good behavior from him and anyone around him (like Lia).  She said it would get worse before it got better (hmmm, that sounds familiar).  Since the bad behavior worked for him before, Evan would likely escalate them in an effort to get our attention. As long as we ignored it and were consistent, the behavior would taper off and then stop completely.  We committed to ignoring the bad language.  And it did get worse before it got better.  Evan would escalate when he did not get any attention.  He would scream, cry, hit and kick.  We'd ignore him and occasionally calmly say, "speak nicely if you want us to listen," with little eye contact and engagement.  He would calm down and apologize and then we would give him our full attention and praise his good behavior.  The bad language and challenging behavior decreased and ended within one week.  No more major meltdowns, fighting, bad language, or school work wars.   

August had a rough start.  I didn't know how to get through to Evan, but I knew I had to find a way.  I'm so glad I reached out to experts that could truly help.  Who knew simple changes could provide such awesome results?!  The remainder of the summer was filled with beach days, bike rides, sunshine and happy kids...and parents!  

Never lose hope.  If Plan A fails, remember there are 25 more letters.

Wednesday, November 20, 2013

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.

Wednesday, October 2, 2013

A Mother's Anguish

It has been almost two years since I have posted here.  So many things have happened.  So many beautiful signs of progress, countless joyous moments and reasons to celebrate.  There have also been many challenging times and periods of setbacks.  We have a lot to catch up on, but first I need to post something that is not about Evan.  Actually it is about Evan and all the families with children with autism.  It is about how the media and society can shape how people view our community and our children.  It is about how they can inspire understanding and compassion, but they can also do irreversible damage.  Her is my recent email to People magazine regarding their coverage of the Kelli Stapleton story:

I am a long time reader and loyal fan of People magazine.  I take my VIP surveys, check my People app daily and look forward to receiving the magazine every weekend.  Your celebrity coverage is second to none.  Your stories of our country's tragedies and local heroes is always inspiring.

That is why I was so appalled by your coverage of the Kelli Stapleton story.  Your story seemed to sympathize with the attempted murderer.  There is never a good reason to try and murder anyone let alone your own child and yet your story seemed to convey that her gruesome and selfish act was JUSTIFIED.  The autism community was in an uproar and extremely disappointed at your irresponsible and heartless view.  My son has autism and on the days that are exceptionally hard I dig deep and try to remember to have hope, to stay positive, to work harder and remind myself being his advocate, coach and cheerleader is my most important job.  On the days that are most challenging I love him more.  These days make me stronger and make me a BETTER mother.

When reading the latest issue I noticed your small article on page 10 "Update: A Mother's Anguish."   I thought that maybe People will show the other side and try to right the wrong of their first article.  Of course, the headline "A Mother's Anguish" clearly again shows sympathy to a mother who tried to MURDER HER CHILD.  And every quote you pulled from your readers' letters also supported Kelli Stapleton. "A loving mom,"  "shouldn't be sent to prison," "protecting her family."  How can the reputable and responsible People magazine stand behind and completely support an attempted murderer?  It is not even as if you are showing BOTH points of view and conducting fair journalism.  You are clearly justifying and supporting a mother who tried to murder her daughter.  Her daughter has autism and has violent outbursts.  This is something that MANY families deal with.  Are you suggesting every mother should be allowed to murder their child because they are disabled and have challenging behaviors?  Is it also OK to physically abuse a child who has autism or a child who is disabled?  I cannot believe that People magazine would write and follow up on a story in such an irresponsible and disgusting manner that depicts unwavering support and compassion for a mother who tried to murder her daughter.  I am appalled and sick to my stomach over your coverage of the Kelli Stapleton story and my heart breaks for the innocent Issy Stapleton. 

Sunday, November 20, 2011

Charting a Course

Being a parent of a child with an autistism spectrum disorder can be challenging on many levels. As a mother, we wear so many hats -- referee, cook, driver, housekeeper, referee, homework inspector, playdate organizer, referee. If you have a child on the spectrum there are a whole new set of hats to wear -- researcher, therapy coordinator, case manager, advocate, OT obstacle course designer, playdate social skills supervisor, the list goes on and on.

The positions and job requirements are endless and the first major assignment begins with getting your child diagnosed. I had to convince Evan's pediatrician there was something amiss and to recommend a pediatric neurologist. Some people start with behaviorists, teachers, therapists or psychologists. From the very beginning we are all charting our own course. After receiving a diagnosis we felt major relief that our concerns were validated and we now had a direction. The problem is there is more than one set of directions and no map to be found.

What type of evaluations should we get -- OT, PT, speech? Where should we go -- private, hospitals, school? Should we see a behaviorist? Who provides early intervention services? What type of school should my child go to? Social skills? Floortime? ABA? What does our insurance cover? You mean we have to pay for all of this?!? It is completely overwhelming and there is no one person guiding you. You have to do the research, gather recommendations, interpret insurance plans and figure out what is the best path for your child. And this decision isn't as simple as, "What color should I paint the bedroom?" This decision will be what determines your child's progress and success. No pressure, right?

This is what our plan looked like: private preschool with a one-on-one aide, one hour of speech and one hour of OT a week, a two-hour social skills group once a week, behaviorist observations as needed and an annual visit to the pediatric neurologist. After two years, it was time to make a change. Evan was going to be entering into his kindergarten year and we had a feeling we needed to make some revisions to the plan. Evan enjoyed his school, which was academically challenging, full of creative programs and staffed with the most caring and nurturing teachers. But nobody was directly addressing the areas where he needed the most attention -- social skills, behavior modification and independence.

We decided to have Evan evaluated through our public school system. There were evaluations in OT, PT, and speech; psychological and academic testing, behaviorist observations, a social worker-parent interview and numerous other meetings. As the testing went on, Evan's level of motivation and compliance waned. We had to attend meetings in a building with an elevator just inside the entrance. This was at the height of Evan's elevator phobia. He could read the sign, "In case of fire do not use elevator. Use stairs." This had him convinced there was a raging fire just out of view in the depths of the elevator shaft. The entire special needs staff were able to witness his severe adverse reactions to elevators and the resulting meltdowns every time we had to walk past one. In February, they recommended the full day ABA program. After another school observation in May, they suggested he attend half day ABA and half day mainstream class with an aide (we later found out it would be a three-on-one aide...very different if you ask me). They were pleased to see how well Evan was doing. Of course he was doing well in May. He had a whole school year of acclimating to his teachers, schedule, classmates and aide. And let's not forget that spectrum disorders are very situational. If they came to observe Evan at a different time or on a different day they may have seen a different child.

We decided to enroll Evan in the summer ABA program. It was a whole new world for him -- a new school, teachers and classmates, and a completely different program. On the first day of the second week his teacher approached me at pick up and said, "Evan is supposed to attend half day ABA and half day mainstream?" I said, "Yes, are you concerned that's not the right program for him?" She was very direct and said, "I don't think that's going to work. He can't do anything by himself. He is not independent at all. He has issues with crowds and noise and that class is going to have 25 kids and a one-on-three aide isn't going to help him." It took me a few seconds to get over feeling like I got punched in the gut. I was having reservations myself and didn't actually disagree with anything she was saying. "So what are our options?" I asked "A one-on-one aide?" "Well, the purpose of an aide is to help transition into mainstream and Evan is not there yet. If he had a one-on-one aide they would be giving him step by step instructions the entire day. He wouldn't be gaining independence and he wouldn't be engaging with the class." OK, I knew where this was going. "So you recommend the full day ABA program?" She said that was her recommendation and she'd have the behaviorist and psychologist observe Evan and we'd reconvene before the summer was over.

I'm not the type of mom who hides the fact that Evan has Asperger's. I'm not the type of mom who wants him in a mainstream classroom, just so I can say he's mainstream -- like that word makes his Asperger's less severe or makes Evan sound more "normal." He is who he is and he needs what he needs. We were prepared to sign off on the new plan. We were not prepared for how that plan would change everything...

Thursday, June 23, 2011

Flashing Lights

Being a parent of a child on the spectrum is a quite a journey -- a series of highs and lows and everything in between. There are celebratory moments of progress and success. There are challenging moments of regression and struggle. Then there are those other moments when autism becomes a giant undeniable force. It appears out of nowhere like a flashing neon light blinking "he's different...he's different....he's different!"

Parents who have a child on the spectrum know how to deal with tough situations. Actually we've been in so many before, we have practically developed a sixth sense. We may not have a crystal ball, but we can usually tell the future. Most of the time we can read all the signs and know just what to do to head off a melt down. We know how to prepare for every game and know which plays to put in motion at any given time. But sometimes, there are moments where all of that goes out the window and we are reminded just how hard life can be for our little ones.

We'd been coasting along under the radar enjoying Evan's progress, which was occurring across the board. He'd even started to observe his peers and become more motivated to do things independently. Of course it was the perfect time to be reminded that no matter how high-functioning Evan is, autism is always there and ready to rear its ugly head when you least expect it.

We arrived a few minutes late to Evan's classmate's birthday party. The karate instructors had the kids lined up and participating in games when we walked into the backyard. Evan refused to join in and insisted on sitting to the side and just watching. When the karate lessons were over he played with some of the other kids on the swing set. The playing was a mash up of scripting (Evan), teasing (other kids) and regular five year old play. It was better than watching Evan stand in the corner and talk to the plants -- which is what would have happened a year ago. I'll take what I can get. I turn around and see Evan start to run to the sliding glass doors and squeeze by before I can catch him. I enter the empty house and grab Evan's hand before he can climb the stairs. "The party is outside, Buddy. We're not allowed inside the house," I tell him. He starts whining and manages to pull away and start clamoring up the stairs. I know what's happening. He remembers this house from a playdate a few months prior. He desperately wants to go to the birthday boy's room and find whatever book or toy he has pictured in his mind. I explain, I insist, I bribe and nothing works. His whining has developed into a full on meltdown. We walk down the stairs and I hold Evan's hand as he fights me- kicking and screaming and yelling. Another parent walks by and asks, "does he want cake?" "No, he doesn't want cake! He's the only child who didn't eat cake. The only child who didn't participate in the karate games. The only child who can't see when other kids are teasing him. And the only one having an epic melt down in the middle of this party!" Well, that's what I wanted to say. Instead I just shake my head and walk Evan out to say happy birthday to his friend and thank you to his friend's mom before escaping the stares and getting the hell out of Dodge.

That neon flashing light damn near blinded me that day. "HE'S DIFFERENT!" it blinked blatantly. Yes, he's high functioning. Yes, he's doing well. But he is different and don't you forget it the blinking sign could have read. A birthday party where all the kids are having a blissful time is where my kid struggles. The environment is loud and abrasive, the surroundings unknown, people asking him to do things he's unsure of, new faces and noises and rules he's not used to. "Don't forget who he is," I remind myself on the car ride home. When it's smooth sailing I can easily let myself be convinced that we've escaped autism. But we haven't. It's always there and I can't forget that no matter how well Evan is doing, he will always have Asperger's Syndrome and I'll never be able to predict how it will manifest.

These flashing light moments are the only times I feel sadness. It sneaks up on me. I'm not ready for Evan's struggles to be center stage for everyone to judge. I can never be emotionally prepared for those moments. We pull into our garage and I take Evan out of the car as I cry. When he was three years old my crying didn't even register on his radar. At four years old he thought it was funny and would ask me to cry so he could have a good laugh. But now he sees the tears and he hugs me. Not the scripted flopped arms over my shoulders, but a real hug so tight I can feel his little arms around me. He says, "Don't cry. Don't be upset." He takes my face in his hands and looks me in the eyes. With authority he says, "You have to count to three and calm down." OK, the last part was from a show, but still! It was just what I needed. A reminder of the progress he's made, the feelings he can recognize, the empathy he has and his ability to express it. Everyone is entitled to a bad day, a moment of pity or a flash of sadness. I'm so lucky my boy could look me in the eye and pick me back up.

Sunday, April 17, 2011

Evan Decoded

Evan's progress used to be dramatic. One day we'd wake up and it was as if the Asperger's cloud lifted a bit and Evan was noticeably more present and engaged. Now he progresses differently. I like to call it "slow and steady." It's not as remarkable, but I hear that's how you win the race anyhow. These days he's improving in little ways across the board. My favorite place to see these changes is his language skills. Those tiny gems of original thought are popping up more often. He's understanding his emotions better, expressing himself more and we are starting to decode some of his behaviors that have eluded us for so long.

About a year ago, when Evan was four and half years old, his language skills started to improve. He spent a great deal of time working on his auditory processing and pragmatics during his speech therapy sessions (and still does). He was able to answer certain questions and it was as if we could finally start to unravel some of the behaviors that had mystified us over the years. Since Evan was about a year old he had an almost Pavlovian response to pillows. If he came in close enough contact with one (no matter what room or what time of day) his thumb would go in his mouth and his eye lids would droop with heaviness. He loved his bed and at night he would dive under his pillows to go to sleep. We knew there was a sensory component to his love of pillows, but weren't sure what it was. Did he like to go under the pillows because it blocked out light? Did he like to feel the pressure of the weight on his body? Did he like how the fabric felt cold against his skin? I thought it might be the cold feeling, but I never knew for sure. I often asked him, but never got an answer. One day I finally did. "Evan, why do you love your pillows?" I said, exaggerating the inflection of my voice to help him tune in and process the words. Much to my surprise, he took his thumb out of his mouth only long enough to say these three words: "It feels cold." I called my husband, Steve, into his room and we celebrated those three words like they were a major milestone. For us, that's exactly what it was. It was the first time he could explain why he does what he does. No speculation or hypothesizing, just our son giving us a glimpse into his thoughts.

Every night Evan would crawl into bed and we would choose a few books to read. Occasionally, he would have a very, um ... strong reaction to certain books. A peaceful quiet bedtime could turn into tears and screams if we tried to push a book that he had rejected. We didn't know exactly why he was having such adverse reactions to these books. Maybe he wanted to read something specific and was having a hard time telling us what that was. There was one particular book that Evan was terrified of: Rhyming Dust Bunnies by Jan Thomas. I had recently discovered how much disclaimers, explanations and preparations helped Evan. Sometimes one subtle statement could ease his anxiety. I guess this night I was feeling particularly brave because I went to Evan's bookshelf and picked up Rhyming Dust Bunnies. I told him it was a silly story and I wanted to read it. He didn't have to listen, but I was going to read it quietly to myself. He put up a fight, but I started to read anyway. I whispered the words and giggled my way through the first few pages. At this time Evan was still struggling with sensory overload when it came to loud noises- especially if he could anticipate them coming. I noticed the words on the page were written in a large font and there were lots of exclamations points. I started to realize that my little reader probably thought that this book was loud, abrasive and to be avoided at all costs. When I got to page six, Evan quickly covered my mouth and said, "Not loud! Read it pianissimo (a nod to his Little Einstein days)." And there on page six was the trifecta that caused Evan to finally show me why this book was his mortal enemy: large font, an exclamation point and ALL CAPS! We got through the book that night when Evan realized the dust bunnies were not going to yell at him and he insisted on reading it every night for the next three weeks.

Evan scripts -- a lot. He is always reciting dialogue from shows and movies. In the car, he loves to listen to movie soundtracks and songs from his favorite Nick Jr. shows. During every car ride there is a moment where Evan insists that I restart a song from the beginning. Often we are on our way to school or therapy and I don't want him to exhaust himself with a meltdown, so I oblige. Yes, I subscribe to that lovely little theory called "Choose Your Battles." This was another situation where I wasn't exactly sure why Evan would be so insistent. Since he was getting better at answering questions, I decided to push the issue. He asked me to restart a song and I turned the radio off. I said, "I will, if you tell me why you want me to restart the song." I had to repeat the question a few more times, but finally he said, "Because I didn't sing a part." Aha! I realized he was not only singing along, but also replaying the scenes in his head. I tested this theory when he was listening to an instrumental song from the Beauty and the Beast soundtrack. He was reacting to the song as if he was watching the scene play out. I turned to Evan and asked him, "What's happening?" He said, "Gaston and the men are trying to kill the beast!" I guess the movie reel never stops playing in Evan's mind.

This theory was further proven when Evan started to blink intentionally and excessively. It came about one day and didn't stop for weeks. It would happen all day long and was especially noticeable when we were sitting at the dinner table and there was nothing specific that he seemed to be reacting to. I finally pressured him to tell me why and he said, "because I don't want to see something." The next time I asked, he said "I don't want to see Evil Emperor Zurg (from Toy Story)." So the scripting wasn't just happening when he repeated dialogue. It was happening in his mind all the time.

The loss of a pet is inevitable, but never easy. Our dog Riley had to be put down a few months ago due to cancer. We told the kids she was very sick and had to stay with the veterinarian. We knew death was a topic that had to be broached sometime, but felt they were still too young to get the concept. With every question about Riley my heart ached a little more. One night Steve called me into Evan's room, where he was putting him to bed. He said, "Tell Mommy, Evan." Evan whispered in the saddest voice I'd heard coming out of my usually joyful little guy, "Where's Riley? I miss her. She needs to be here with us." He then reached up and brushed a tear from his eye. This was the very first time Evan cried from sadness and not fear, frustration or anxiety. It was heart breaking, but also a breakthrough.

This year we have made improving Evan's fine motor skills a priority. It's his final year of preschool and we decided it was a good time to strengthen his writing and drawing skills and more importantly, get him to like it (or at least not despise it). Between his school homework, speech homework and our new fine-motor schedule (20 minutes a day of tracing, cutting, drawing, writing or art) we've been spending a lot of time at the kitchen table. Putting up a schedule, using rewards, motor breaks and applying tricks to get him more engaged all helped Evan tolerate homework more. One Sunday, we were working on his butterfly book. He had to trace numbers, color the butterflies, cut the pages and then staple them into book form. I'm not sure how long it took his classmates, but Evan finished it in about four sittings. He had just finished watching the movie, The Polar Express, when I reminded him it was time to finally finish his butterfly book. He was reluctant (surprise surprise), but I somehow coaxed him to the table. He sat down looking completely uninterested. I knew I'd have to use one of my tricks to get him engaged. I started singing for each number he was on. Well, since I'm tone deaf it was more like rapping. Whatever it was, it was working. Evan stopped whining and went from slumped over to sitting up. Instead of a prompt every two seconds to hold his crayon correctly and keep working, he was actually just smiling and coloring away. When we got to number seven, he started singing -- slowly and quietly. It was to the tune of "Christmas Comes to Town" from Polar Express. He sang "Seven, number seven, my name is Evan." It was so adorably sweet and authentic. And then it got better. He turned to me and sang, "Mommy is my girl. She is good. I love her. She's my Mommy." And while he sang he caressed my face and arm. My throat constricted, but I held back my tears because I wanted to see where else this song was going to take us. He continued to sing about how he loves his house, Earth and his sister Lia (who he also referred to mid-song as his girlfriend...have to work on that concept in the future). His animated scripted voice was replaced with this gentle sing-songy intonation. The lyrics were truly expressive. In fact, that moment was Evan's most genuine display of emotion ever. Evan would say, "I love you," but it was like a boomerang. If I threw it out there he'd send it back. This was entirely different. The words I heard were uniquely his and with those words, for the first time, I truly felt his love.

This is an exciting chapter of Evan's progress. His emerging language skills are like a key that has opened a door to show us more of our son. We are finally learning the reasons behind so many of Evan's habits and behaviors. We're understanding his personality on a whole new level. We've been so focused on getting Evan to be more in our world -- it is such an unexpected and amazing gift when he shows us more of his.