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.

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. 

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...

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.

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.

Twenty Minutes

A new blog post! Yeah, it's been awhile. The truth is I have been avoiding this moment for some time. I have reams of notes for five different blog posts. The problem is I promised myself I wouldn't write any of them...until I wrote this one. Today something beautiful and amazing happened with Evan. I ran to my computer to jot down some notes. I couldn't wait to write a post about the break though. But then I remembered the promise I made to myself. So, that post, with all it's touching moments of progress and joy, will have to wait. This one has to come first.

I've put four months in between that day and today. It still doesn't seem like enough. I mean, who in their right mind would want to revisit the most heart wrenching moment of their life? To write, I have to remember. To remember, I have to relive.

It had happened before. Two minutes at the water park. A minute in the hallway at school. But this was different. It was a beautiful October day. I was running errands in town with my best friend, Jackie. The kids were at home with our part-time sitter, Wendy. Evan was still obsessed with riding his bike and went for several bike rides a week. If it was two adults (my husband and I over the weekend or the sitter and I during the week) we would take a longer bike ride around the neighborhood. If it was just Wendy, she would take the kids on their bikes down the block and along the path that led to the field of the school behind our house. It was a quick jaunt, but they loved it. It was also quick enough that I felt comfortable with Wendy taking them on her own. She had been taking them a few times a week for about two months. But this bike ride would turn out entirely different.

Lia, Evan's sister who had just turned three years old, insisted on taking her tricycle instead of her bike. This one seemingly inconsequential variable seemed to set off the whole ugly chain of events. A bike can manuver over bumpy sidewalks easily. A tricycle - not so much. Lia kept getting stuck and Wendy had to turn back to help her over tree roots that jutted out and made for rocky terrain. After each time getting stuck, the space between Evan and Lia grew larger. She yelled over and over for Evan to wait, but he didn't. Then he saw a deer and off he went. Wendy went back and grabbed Lia, abandoning her tricycle. She chased after Evan, screaming at him to stop. He turned a corner and was out of sight. She felt she couldn't run fast enough carrying our 40 pound daughter. She yelled for help and a couple students who were practicing with the school band ran over. She asked them to watch Lia and she left to go find Evan. Wendy called 911 and then called me.

Jackie and I were picking up some clothes that were being altered and chatting with Sam the tailor (when you're 5' 3" you get a lot of clothes altered and you spend a lot of time with the tailor). When I saw my sitter's name pop up on my cell phone, I knew it wasn't good. She was hysterical. I only remember hearing the words "Evan," "bike," and the worst word of all - "lost."

I ran out of the store towards my car. I realized a few seconds later that Jackie had been yelling to me. Was she asking me a question? I turned to look back and she was gone. But I saw Sam standing on the curb. He was looking around, stunned, probably wondering what he should do. I got in my car, crying, shaking, fumbling with my cell phone. Since I only processed three words from the call with Wendy, I had no idea if she had called the police. I dialed 911 as I honked and weaved my way through traffic. I was driving like a mad woman. Well, in that moment that is exactly what I was. In between distraught sobs, I told the dispatcher what had happened. I gave location details and described what Evan was wearing. And then I told him that my son was autistic. The dispatcher said, "we'll call his name and maybe he'll come to us if he's hiding." I screamed, "He's autistic! He will not come if you call out his name!" The dispatcher said, "maybe he walked to a friend's house." I screamed, "He's autistic! He does not walk to friends' houses!" The dispatcher tried to keep me calm, but my level of hysteria grew at every asinine thing the dispatcher said. He tried to tell me that screaming and driving like that was unsafe. Did he want me to go the speed limit and calmly follow traffic patterns? Then I started to think about the recent "stranger danger" incidents that had occurred in the area. I pictured my oblivious naive little boy happily climbing into a car - never to be seen again. If my maniacal driving could have gotten any more maniacal, it probably did. I wanted another dispatcher to call Wendy and stay on the line with her. I tried to retrieve her cell phone number from my phone. The dispatcher must have known that my crazy mental state combined with my demented driving and messing with my cell phone would be a bad situation. He told me to pull over and calm down while I got the phone number. I yelled, "you're fucking crazy if you think I'm gonna fucking pull over while my kid is lost. I am going to fucking drive home and find my fucking son!!!!!" Or something like that.

While I was on the line - I heard him talking to another dispatcher. As I turned onto my street, he told me the sitter found Evan and he was with her in our house. I parked my car in the drive way, but did not go in. Somehow I just knew Evan was not inside. My neighbor, John, came outside and followed me as I ran to the corner where four police cars were parked. I followed the path to the field behind the school. Four or five police officers rounded the corner and walked towards me. Jackie was there with Lia. Apparently, she had been asking me if I wanted her to drive. When I didn't answer she realized she should take her car because it was parked on the other side of town, closer to my house. She pulled over where she saw the police cars and found Lia playing with some of the kids from the band. Thank God for them.

John and his wife Jen took Lia back to their house as I approached the first officer I saw. I asked him, "where's Evan?" He said, "at home with the mother." I said, "I'm his mother!" I called Wendy. Through labored breaths and tears she said, "I have Evan, can somebody come and get me?" She physically couldn't walk. I told the officer to send somebody to get them. He tried to convince me that she was at the house. I yelled, "I am on the phone with her! She is sitting on a sidewalk! Go and get them!" During this time a different officer drove by and saw Wendy sitting on the ground with Evan and asked if she was OK. She begged the officer to drive them to where we were.

I spotted a police car pulling into the school parking lot. I ran across the field as Wendy and Evan (still wearing his helmet) ran towards me. I grabbed him and kissed him and held him- probably too tight for his liking. I don't remember what I said. I just remember walking across the field and not wanting to put him down - ever.

Wendy was a mess. She must have had a full on panic attack and well...she peed herself (which is the least she could do for losing my kid). After getting all the information, we parted ways with the officers. I think I thanked them and may have apologized in some capacity. We walked down the block and went to my neighbors house. I tried to talk to Evan about what had happened. He didn't really get what all the fuss was about. He seemed pleased that he got to ride in a police car.

I let Evan and Lia play with the neighbor's kids in their backyard. Jackie and Jen stayed while I went inside my house to see if Wendy was OK (and give her some pants). We were both still very upset and I told her to get some water and sit down and that I would be back in a few minutes. At some point I had given Jackie my phone and told her to call my husband, Steve. She had been calling him repeatedly, but kept getting his voice mail. His train had been stuck and he had no cell service. He had no idea what had gone on. At least he got to hear the story with the happy ending already attached. The kids played as Jackie, Jen and I recounted everything that had just occurred. I called Sam to tell him Evan was OK. He had been waiting for that call. I scrolled through my recent calls and checked the time that Wendy first called me. "Twenty minutes ago? That's not possible," I thought. I checked three more times. The whole ordeal had only lasted twenty minutes. It felt like so much more. Twenty minutes, but it probably took that many years off my life.

Eventually Jackie went home and Jen helped me get the kids settled inside. We sat down with Wendy at the kitchen table. I asked her to start at the beginning. I tried to piece everything together, not that it would ever be enough. Jen went home and Wendy's brother arrived to pick her up. She was still visibly shaking and wasn't okay to drive on her own. I stood alone in the kitchen while the kids played in the next room. I leaned on the counter and had a good cry. I noticed the time and realized I had to make the kids' dinner. They were probably hungry and bed time was fast approaching. Life goes on. But it will never be quite the same.

The Short List

I have a short list and I bet you do too. Everybody has one. It's the people who support you, who you can fully trust, who understand your child with special needs, who understand what it's truly like raising them. They just get it.

Odds are the people on your short list are your closest family and friends. Hopefully, your spouse is on your short list because being on the same page is paramount to raising your special needs child, staying sane and well...staying married. Thank God my husband, Steve, and I are on the same page. He is definitely number one on my list and I am number one on his.

And I'm sure there are a few standouts. Like your child's teachers and therapists who "get it" on a whole other level. They can hear your child say one thing and look at you with amazement because they know what it took to get there. Evan recently came out of speech therapy and noticed a man in a white lab coat. He said, "Hi, I'm Evan. What's your name? Are you a doctor?" His speech therapist, Irina (see photo above), looked at me with wide eyes and mouth agape. We just stood there smiling broadly at each other. No words necessary. It may have been a little improvement, but she recognized it. These are people that revel in the progress and celebrate alongside you.

Maybe it's an aide. When you pick up your child after school, they report to you a little tidbit that most wouldn't even notice. Last week, Evan's aide told me he stayed at the table and completed the whole letter writing worksheet without trying to go AWOL. She knows fine motor skills are a big challenge and the fact that he didn't get up is a big deal.

These people understand your child and all their quirks -- and probably think they are darn cute too. Evan has gotten pretty good at making his scripting sound appropriate and authentic. When Evan sees his teacher from last year in the hallway and he asks her to pick him up, she already knows he's trying to reenact a scene from Beauty and the Beast. There's no fooling somebody on the short list!

The people that inevitably get on the short list and rise to the top at record speed are other parents of special needs children. They don't just get it -- they live it. These people speak the language. IEP, OT, NT, scripting, stimming. No need for a translation, they are fluent! When chatting together you probably finish each other's sentences half the time. Yesterday I went with a friend to pick up her daughter, who has selective mutism. We arrived at the school and all the parents were waiting on the sidewalk. We walked by them and stood close to the doors. She said, "I'm sure everyone looks at me like I'm crazy, but I stand here so..." "so, she can see you as soon as she comes out and doesn't have to search the crowd," I said. What seems obvious and necessary to us might seem weird or crazy to somebody not on the short list.

Notice it's called a short list. There are whole lot of people not on the list. Some don't understand, don't want to understand or just don't know how to. They are unsure of what to say. Some like to explain everything away and wrap it all up with, "He'll be fine." They don't recognize what it takes to see progress and think they are just "growing out of it." Some are judgmental. Some just don't get it and never will.

So, here's to the people who do get it. They listen when we need to vent. They let us obsess over something until it's out of our system. They celebrate all the success and progress with us. They love our kids and we love them for it. They support us and hold us up when we feel like we just can't get through another day. And we couldn't without them.