​A flashback today, one filled with a range of emotions...sadness, regret, reflection, but, mostly joy. And it was brought on by a sticker.

It was the sticker box at the pediatrician's office with a blue, happy face sticker smiling and mocking me as if it remembered something I had tried to forget. And sure enough, I had. Stupid stickers, so full of themselves.

I certainly hadn't forgotten the anxiety, the stress and the ultimate torture that occurred in that exam room (along with all the other exam rooms) for my son Ryan at each and every doctor's appointment. No, chances are I will never forget that. What I did forget (blocked out) was that damn sticker box. The box that came out after every appointment ended. The box that symbolized that the worst was over and a well deserved sticker was in order. In other words, the good part. Unless, of course, the stickiness of stickers felt almost as horrible as the stick of an immunization shot.

I remember reaching into the sticker box trying to soothe Ryan's tears after each agonizing appointment with Thomas, Dora or Blues Clues. "Here baby, which one will make you feel better?" to which he responded with more tears and "no, no, no". So, I would pick one for him, certain he would want it later, but, he would never touch it. Ever.

The worst part of that stupid, smiling sticker box was the hope I placed in it. My hope clung to that box as zealously as this blue, smiling face lunatic staring happily in my face clung to the side of a plastic container. I didn't understand why stickers were so abhorrent for my son, but, in some way, they became the ultimate symbol to me that something was "wrong".

I believed, that if just one time, Ryan would reach into that box, pull a sticker out and willingly put that sticker on his shirt like every other kid walking out the door of the pediatrician's office, then all my fears of him being "different" would be wiped away with his tears. Somehow, a box of Blues Clues stickers became the gauge of what I felt was "normal". The power I gave that sticker box was ridiculous.

After I understood that Ryan didn't like how the stickiness of stickers felt on his fingers and that he didn't understand how his beloved friends Blue and Thomas, who he watched on his television, could somehow become a sticker placed on his shirt, the stickers lost their power over him and me. I would just tell the doctor or nurse that he did not like stickers and the box would quickly be out of sight, and out of mind. Bringing us both relief for very different reasons.

Today, I smiled as the nurse handed my neurotypical daughter Emma the sticker box and she quickly found a mustache sticker which she happily placed on her upper lip and began talking in some deep, man like voice. This is what I thought was "normal"?

I love the saying, "normal is just a setting on your dryer" because honestly it's kind of true. What and who the hell is "normal"?

As my pink mustached 10 year old and I walked out of the exam room, I stole one last glance at the sticker box with it's blue, happy face still grinning at me and this time I smiled back. That box never held hope for my son. The hard work day in and day out and the progress Ryan was making in order to understand a world filled with sticky stickers, a world he desperately wanted to safely and happily navigate, is where I eventually found hope. And that's where hope was all along.

Today, Ryan would say that stickers have no purpose and are a waste because you stick them on something and eventually they peel off, and I would listen and smile at his incredibly, sensible logic. However, twelve years ago, Ryan hadn't yet learned to say those words, all he could manage was, "no, no, no". And unfortunately, twelve years ago, I hadn't yet learned how to listen.

I spent over an hour looking for it. I searched in the kids' closets, in the abyss that we call the basement (where the once beloved toys go to await a yard sale or a trip to Goodwill) and in our “formal" living room” (where the toys that are still occasionally played with remain). I was determined to find the object of my search. Imagine if I were as unwavering in my cleaning and organizing as I were in my searching how much easier it would be to find said object, or any object for that matter!

I refused to give up I because I knew it was somewhere.  “It” was a bag of wooden toy blocks tucked away and long since forgotten with two teenagers and a preteen in the house. My best friend’s 1 year old was coming to play and as her "auntie", I was determined to have a fun playdate and that meant finding the missing bag of blocks among the forgotten dolls, dinosaurs and Legos.

Then, finally, I saw the purple handle sticking out from under a pile of mittens that my teenage wannabe drops on the floor due to her 8th percentile height that leaves her unable to reach the mitten bin on the top shelf. I pulled it out, scraped off the dog hair and dust bunnies (sorry sweet Peaches) and relished in my victory and dogged determination at my discovery. I put the bag with the other toys I dug out (literally) and finally went to bed.

The next day, when my friend’s beautiful girl came to play, I was ready. At first her inquisitive eyes and grabby little hands were set on the various toys that lit up and made noises. She went from item to item pushing buttons and clapping each time she pushed the magic button, so proud at her amazing discoveries. My goodness she is a delight!

As toddlers are wont to do, she quickly left any and all toys behind and went to the cabinets and drawers in the kitchen. Since my days of child proofing are long gone, I wanted to distract her with something that would not poison her. "The blocks!"

I quickly went to the bag and dumped the blocks on the floor as I sang out her name. I had no idea the impact those scattered blocks all over my family room floor would have on me. In an instant, a long forgotten memory that was tucked as far away in the darkness of my brain as the blocks were in our hall closet, hit me. Hard.

The benign wooden blocks, in various colors and shapes scattered among the light up toys, took me back 12 years. There in my memory, along with the blocks, was my son, aged 3, on the floor playing. Unlike my bestie’s daughter, he was not picking up the blocks and making sweet block music, nor was he crashing down each and every tower I built, instead he was rolling all over the blocks that lay scattered on the floor.
 
Ryan would scatter the blocks on the carpet, almost making a trail of blocks, then he would roll on top of the blocks from one end of the pile to the other, seeking sensory input that his body was unable to receive in the way you and I can. From the sharp, pointy triangles, to the smooth half-moon circles, Ryan did not discriminate. Each block provided different sensory sensations to his body, and by the giggles and smiles it was clear that those sharp and smooth edges felt glorious. 

At first I thought it was funny, but, the more I watched him, the more it worried me.  I knew this was not "normal". I remember trying to redirect him. "Ryan, look what Mommy built!" "Do you want to knock it down?" But, my son, who at times appeared deaf to his name, just continued to roll away. Not caring at all about what was the "right" or “normal” way to play with wooden blocks, Ryan found his way, and his was was “right” for him.
 
My revere was broken when my bestie's daughter yelled, “wooo” as the next block tower crashed to the ground while she clapped happily at this fun game of cause and effect. Then she picked up two blocks and clacked them together (blocks are quite musical). While she enjoyed her musical blocks, I built another tower and waited, and sure enough, CRASH, she toppled the blocks to the ground again. As I applauded her victory, in what I once believed was the “right” way to play with blocks, I longed for the chance to go back in time with my young son and roll over those blocks letting him know that his way was “right” too.
 
Yeah, I know, beating myself over the head with a bag of blocks isn’t going to change what was, but, those blocks acted as a reminder to allow my son to “play” in a way that is comfortable for him. For example, my suggestion to have an end of the year pool party for the cast in the musical as a way to increase his social opportunities, may seem “right” to me, but, it clearly does not seem “right” to him. He has no plans of playing that way. There are other ways to engage him socially without making him feel nervous and overwhelmed.
 
As a parent loving a child with autism, there is a fine line between showing your child what is “typical” and making them feel and be someone they are not.  Just like I crossed the line with those stupid blocks all those years ago, I know I have crossed it many, many more times since then. I hope that my son knows that just like blocks don’t come with instructions on how to play “right”, parenting doesn’t come with instructions either and sometimes we get it wrong.
 
Over the years, my son and I have taught each other how to play and neither way is “right”, sometimes, how we play is just different. My bestie’s beautiful girl may have played with the blocks just like I expected her to, however, when she climbed on top of the little toy table (which I also found in the bowels of my basement) that I set out for us to color on, I couldn't help but smile at the irony. This adorable neurotypical toddler did not play with the table "right", after all, tables aren't for standing on, however, climbing on top of that table felt “right” to this little daredevil more than scribbling with a tasty crayon she'd preferred to chew on than draw with. And in her mind, and mine, she was not wrong.

"Play:  engage in activity for enjoyment and recreation rather than a serious or practical purpose."

Yep. Guess I missed that twelve years ago.

I love Dr. Seuss! I mean, who doesn't? Who else, but, Dr. Seuss, gets kids to Read Across America for a day in March and gets kids to eat green eggs and ham? I can't get my kids to eat food that is suppose to be green like broccoli and lettuce, let alone food dyed green that looks like something pulled from the dark recesses of the refrigerator.

This guy wasn't a Dr., he was a wizard. Not only could Dr. Seuss rhyme better than Jay Z, he taught amazing life lessons to kids through funny, fabulous, memorable stories. No wonder he gets a National Read Across America Day for his birthday and Jay Z doesn't. Sorry, Jay Z, I'm sure you can cuddle up with your millions to make you feel better.

One of my favorite quotes from Dr. Suess was prominently displayed on our pediatrician's wall when the kids were little and I LOVED it! "Why fit in when you were born to stand out!". So true, right? Don't we all want to stand out? Be someone unique, original, different? No. Not if you are a middle school teen. The LAST thing you want is to "stand out". You want to blend in, be part of the crowd, look like all the other bewildered middle schoolers....until one day, you don't. 

Ryan just told me last week after a day of homework hell, that he doesn't like to ask for help because he feels like "everyone is looking at me because I am different". It broke my heart. We talked about how being different is cool. We talked about how everyone is different, autism or no autism, and how boring the world would be if everyone were the same, but, I knew it was falling on deaf ears. Deaf, middle school ears. 

So, as amazing as Dr. Seuss was, as amazing as his rhyming like rap still is, and as much as I still love this quote, it is not so true for the early teen years, especially if being "born to stand out" comes as a result of an autism diagnosis. So, if Dr. Seuss were still alive today, I would either text, tweet or IM him my rhyme for middle school aged kids with autism, and maybe we could sit down and enjoy some green eggs and ham while we discussed it (yeah, not a chance, not even for a signed first edition of The Cat in the Hat).  

My bust a rhyme rap would go something like this...

Sorry old doc, but this quote is a bust
when you are in middle school fitting in is a must.

With big body changes and feelings galore
it's no fun to stand out when you feel so unsure.

One day being different will make him feel proud,
but, right now as a teen he wants in with the crowd.

He knows he is "different" that much is true,
but, some days being different makes him feel blue.

Being "same" may be boring and not how he was born
and being proud of his differences makes him feel torn.

The right pants, shirts and shoes are what makes these kids cool,
but, some days his body wants comfort in school.

When kids walk the halls laughing and fitting in
he can't help but wonder, "How did they begin?".

He knows that his autism does not make him "less",
but, sometimes feeling "more" would be sure fun to test.

In chorus when he sings notes from his heart
he knows that his differences stand him apart.

But in the halls and the lunch room where kids tend to gather
he feels like an outsider where his heart doesn't matter.

When he comes home to a place where he knows that he fits
the big parts of the day slip away to just bits.

One day I know he will be proud to stand out
and I will be by his side when he stands up and shouts:

"I may not know what it is to be cool,
but, one day when I am long gone from this school
I will find a place where I belong
and prove to all others that labels are wrong."

"Different, not less" is how the quote goes
and no one knows that better than those
who wear the label "autistic" to school and beyond
but one day the labels for all will be gone.

The "cool", the "hip", the "out", the "in"
the labels all change from where we begin.
Being different will no longer cause him to pout
one day I know he will proudly stand out.

The label "autism" is only part of who you see
the only label he wants is the word "me".

"I am me, me I am
and for the times I don't understand 
I look to those who only see ME 
and not some label from a degree."

"See me not the label!" 
he is trying to shout.
And when one day you do
he will proudly stand out.

I have no doubt that one day, when the doors of middle school close behind him, Ryan will fully appreciate his unique and fascinating mind, and understand that underneath the same cool clothes "everyone is wearing", we are all different. Until then though, I believe he will continue to try and fit in, while embracing what makes him stand out. 

I'm sure Dr. Seuss would suggest I stick to blogging not rhyming, we can't all get a National Holiday to recognize our birth (sorry Jay Z). Regardless of what Dr. Seuss would have thought of my mad rhyming skills, I still wouldn't eat green eggs and ham with him. Nope. Not a chance. Not in a box. Not with a fox. Not on a boat. Not with a goat.

I see their looks. I see their stares. I see their smiles bordering on a smirk. I see their patronizing high fives. Sometimes, I wish I had a blindfold.

I hear their voices. I hear their silence. I hear the way they speak to him as if he were a young child. Sometimes, I wish I had ear plugs.

I feel my sadness. I feel my anger. I feel the ache deep in my heart. Sometimes, I wish I had no heart.

These feelings often sweep over me, and settle on my chest, directly over my heart to the point of suffocation, but, then, the feelings go as quickly as they came leaving me to breathe easy once again. Anymore, these moments and these feelings are few and far between, but, when they come, they leave a scab that I tend to pick at for days until eventually the scab heals with just a small scar that is visible only to me.

It was a hot summer day, in the oldest public building in town. A church, built in 1825, which meant, no Wifi and no air conditioning. A group of teenagers gathered at the front of the church sitting among the pews giggling, chatting and warming up their voices. At the end of the pew, against the wall, sitting alone and seemingly unaware of the buzzing activity surrounding him, sat my son, Ryan. Ryan sat quietly looking over his music preparing for the day's performance while I almost vibrated out of the pew. His sensory system, which is often so heightened, seemed unaware of all the buzzing activity going on around him. In fact, for a change, it was not my son's sensory system on edge, it was mine. 

It wasn't Ryan who wanted to bolt out that old church door to escape the feelings that overwhelmed him, it was me. As I sat in the church, with little to no air moving, my chest felt heavy. I wanted to run out of the room with my old friends Denial and Clueless, who had slid in next to me on the pew when I wasn't looking making the hot church feel even closer, to escape what my brain and my heart were feeling. So consumed with my watching, waiting and worrying for what had always been, there may have been a few moments that I missed what really was.

As parents continued to arrive and the temperature of the church continued to rise, I felt my heart beating in my chest and a trickle of sweat began forming on my brow. I watched, waited and hoped with anticipation. Would one kid talk to him? Would one kid see him? Would he talk to one kid? Would he see one kid? After all, he just spent a week with these kids at chorale camp so it was reasonable for me to get my hopes up, right? Nothing. Not even a nod, a hello, or an acknowledgement...on either side of the pew. And although my heart was pounding and my sensory system felt like it was on overdrive, Ryan looked happy, content and fine. As always, it was my problem, not his.

Once the performance began, once my son stood shoulder to shoulder with the rest of the chorale ensemble in front of the non-air conditioned church, he blended in with the others. He did not stand alone, he did not appear "different". There was no aloof stance, there was no awkward smile. There was just the music and his voice. Suddenly, I felt my heartbeat slow down and the church no longer felt so stifling.

Within the first few notes, the tears began to fall. Not his, mine. He immediately looked my way, seeing no one but me, and once he saw my smile, once he saw my tears of pride, his smile and his tears matched my own. You see, we have sat in many rooms together, the two of us, where no one saw him like I did. Where no one heard him like I did. Where no one felt him like I did. However, on this day, when his beautiful voice bounced off those church walls, I believe they all saw him, heard him and felt him as I always have. I had waited for that moment for a long, long time. Funny thing is, I don't think Ryan has.

As he finished his song, there were smiles, there were high fives, and there were "good jobs". Even after all that, a part of me still worried that their smiles, their high fives, and their "good jobs" may not have been sincere, that they may have been a bit patronizing because they saw "different", but, when I watched my boy take his bow then fight back his own tears of pride, I realized that what matters most to Ryan is how sees, how he hears and how he feels about himself. Ryan spends little time concerning himself with how others perceive him. A lesson we could all learn from him.

Had I worn my blindfold, had I brought my ear plugs, had I removed my heart, I would not have seen him, heard him or felt him and there is no worry great enough and no pain deep enough, worth missing that. As for their smiles, their high fives, and their "good jobs", they may not have been insincere or patronizing, but, even if they were, I need to take a lesson from my son and recognize who and what really matters.

Once again, Ryan showed me, it is my problem, not his and it is a problem I believe he has already solved.

Minecraft Camp and Music Camp and Chorale Auditions, oh my! These three things may not freak Dorothy out as much as lions and tigers and bears, while creeping through the forest en route to find the Wizard of Oz, but, this mom was mumbling a lot more than, "oh my" while anxiously walking among the buildings of college campuses this summer.

Regardless of my anxiety over what I might run into, when summer time rolls around, I have to find something for Ryan to do otherwise he would wind up with bed sores from lounging on his bead and he would be in search of a brain just like the Scarecrow when school rolled around again. And since I'm not a very good doctor mommy, a bloody nose makes me woozy, I'm sure my weak constitution wouldn't fair well with nursing bed sores, so I sign my boy up for camp after camp. And although there is nothing particularly scary about summer camp in general, that A Word can make a summer time walk in the park feel like a walk through a lion, tiger and bear filled forest alone, at night, wearing a tshirt that reads, "I taste good". 

Yeah sure, when it comes to summer camps, there is the fear of the unknown, the fear of what is lying around the bend. There is the "I don't know what to expect" fear that worries Ryan more than a pack of hungry lions. There is also the "what will he eat for lunch and please God say a packed lunch is allowed" that worries me more than innocently getting between a mother bear and her cub. However, what causes me the most anxiety, what makes me feel like a lost, tasty treat alone in the forest, is to tell or not to tell.

The camp packet comes in the mail in a very innocent looking brown envelope. Nothing scary at all about that. I open the envelope without so much as a drop of blood from a paper cut and I begin filling out the form.

Name:
Address:
Telephone: 
Grade:
Emergenct Contact:

Easy breezy. Nothing to worry about. Then there it is. I swear the font is bigger and bolder and shoutier.

SPECIFY ANY OF YOUR CHILD'S HEALTH PROBLEMS:

It seems like this should be easy too, right? I mean, Ryan does not have any health problems. He has no food allergies, asthma or any type of medical condition. He does not take any medication, there is no need for an Epi Pen or an inhaler. There is nothing I need to tell the camp staff...or is there? The camp form does not ask, "Does your child have a neurodevelopmental disorder?". There are no questions like, "Does your child struggle with social interaction?" or "Does your child have communication difficulties?" or "Does your child have an abhorrent fear of bugs?". Nothing. 

As I look at the questionnaire wondering why they don't include something that makes completing this section of the form as easy as "Emergency Contact" I feel my anxiety creep up on me as silently as a lion ready to pounce. I do NOT want autism to define Ryan, so I don't want to have to tell every single person he meets that he is autistic. However, if I don't tell, I know that can lead to other misperceptions, some worse than the misperception of what The A Word actually means.

If I don't tell, when he doesn't make eye contact, will they think he is not interested and that he does not care to be there? If I don't tell, and it takes him longer to respond to a question will they believe he is ignoring them or that he is rude and disprespectful? When he eats lunch alone will they believe he thinks he is better than everyone else and perceive him as standoffish? If I DO tell, will they put him in a box, a box filled with preconceived notions, misperceptions and ignorance and close the lid on him. AWEnestly, I think I would take a pack of lions and tigers and bears. Oh my.

You know when you are walking alone in the woods and you hear the underbrush crunching and imagine the worst, like a 250 pound hungry black bear heading straight for you, your adrenaline starts pumping and you prepare yourself for some terrifying encounter. As your palms get sweaty and you can feel your heart pounding through your sweat soaked tshirt, you begin forumulating a plan of what you should do first when the bear attacks with it's snarling growl bearing his razor sharp teeth. Then, in an instant, your plans are foiled and you realized you worried for nothing when a 3 pound squirrel leaps onto the path in front of you and scurries away believing you are the scary bear. Yeah, that. My fear of to tell or not to tell was as scary as a 3 pound squirrel and the fear was taken out of my hands by the only person who could.

As Ryan walked away to audition for his place in the choir at music camp, I felt the eyes of the teacher on me. I swear, I could feel his breath on the back of my neck, he was that close. All I had to do was pull this teacher aside and quickly tell him, "Oh, by the way...", but, I didn't, because Ryan quickly hugged me and blended in with the swarm of teenagers buzzing down the hallway leaving me alone in the woods with nothing, but, my own anxiety and my own preconceived notions about how Ryan's autism may impact his week at camp. 

The moment to tell had passed and all I could do was sit and wait...and text my best friend who talked me out of the woods. I texted, "He just walked down the hall with a bunch of kids...without me. I didn't tell the faculty staff member who is conducting the auditions about The A Word. I hope I didn't need to." (Insert worried faced emoticon here). My friend texted back three words, "Maybe you won't". And guess what, she was right.

I did not need to tell and not because autism disappeared that day and not because Ryan decided to tell the teacher, "I have autism", but, because the teacher could tell...on his own. After the auditions, I saw the teacher coming at me like that bear in the underbrush, I heard the crunching of sticks and I wanted to run, afraid of what he might say. The teacher apporoached with a smile and looked harmless enough when he said, "Are you Ryan's mom?" "Yes", I smiled proudly while holding bear spray behind my back...just in case. The teacher then showed me his clipboard and next to Ryan's name he had written "aut?". I smiled and nodded yes. At first, I admit, my heart fell, that "aut" was so obvious. Then, when this no longer scary looking teacher said to me, "He has a beautiful voice. What a gift to have such a beautiful tenor voice at such a young age." I dropped the bear spray.

As always, Ryan taught me that day. Although I am the one who advocates, who blogs, who preaches from the roof tops, "different, not less" sometimes I worry so much about different, I get lost in the woods, scared and alone waiting for the worst. Until this beautiful boy with his beautiful mind finds me and reminds me that I have nothing to fear. To tell or not to tell will still worry me, and leave me second guessing what I should do, but, last week proved to me that sometimes I don't have to say a word. 

Ryan is comfortable with who he is and if people can "tell" that he has autism that's ok. People can also tell when he sings that he has a beautiful voice. People can tell he is kind by the way he smiles. People can tell that he is smart by the work he does at school. As Ryan quickly approaches 14, it is not my job to tell all the time, he is learning to advocate and speak for himself. And he will be the first to tell, that autism does not, and will not, define who he is and where he is going.

And just like Dorothy, on her quest to find the great Wizard of Oz, I believe Ryan will use his courage, his heart and his brain to make his own path to get wherever he chooses to go. He will not let lions and tigers and bears and autism get in his way, no matter where he is heading. However, since old habits die hard, I will pack Ryan some ruby slippers and bear spray....just in case. Oh my.

Two funerals, three deaths, four days. No, that's not a clever name of a Hollywood movie and no, Hugh Grant was not there. "Two funerals, three deaths, four days" are six words that describe a crappy week for some people I really love.

No one likes to go to funerals. Funerals are sad. Funerals are depressing. Funerals are a reminder of our own mortality and how fleeting life really is. Even though we don't like to go to funerals, even though we don't want to go, and even though we try and contrive any excuse possible as a way not to go, most of us don something black and show up anyway because it is the "right" thing to do.

We may have ongoing battles in our head as to whether or not we should attend the funeral. "Well, I didn't know him that well, but, I use to work with his wife ten years ago." Or "I can't go, I have to ______ (insert any word here from "work", to "skydive", to "wrestle alligators") and the family probably won't expect me to go anyway." And my own personal, I hate funerals go to, "I think it's just for close family and friends.". Whatever battle wages on inside my head, "supporting the family" usually wins out for me, and off I go, dread in my heart, tissues in my hand.

As I attended my second funeral in four days last week, I watched the Funeral Director who has officiated every funeral I have attended since I was a child, and I wondered, how does he do it? Such sadness, day in and day out. Grieving families and friends tending to matters their hearts want nothing to do with, but, handling the affairs anyway because their brain insists they must. I guess Funeral Directors recognize what most of us try not to think about, that death is a part of life. Death is inevitable. Death happens to all of us. I'm not implying that Funeral Directors have a lack of compassion, in fact, to do that job, I think you would need to be very compassionate, but, I think you also have to see death in a much more concrete, literal way.

I believe like a funeral director, Ryan gets the black and white version of death. Death is a part of life. Death is a part of nature's life cycle. Death is inevitable. Death is gone. The ambiguity, the abstract ideas of death, well, that is much harder for Ryan to understand.

Last week, I had to share with Ryan the sad news of the death of our dear, kind, next door neighbor who always happily celebrated Ryan's triumphs with me and frequently eased my worried mother's heart, at his setbacks. Through my tears, I watched as Ryan's brain took in the information then he quietly laid his head on his knees. As tears pooled in the corner of his eyes, there were no questions, there were no words exchanged, there was just quiet understanding.

Later, when I asked Ryan if he wanted to attend the funeral services, with total panic and horror glimmering through his own watery eyes, he yelled, "No, I can't handle it Mom. My body can't handle it. Please don't make me go.". I calmed Ryan down and assured him that he did not have to go. Relief washed over his face, as his body visibly relaxed. Ryan told me, in no uncertain terms, that he decided he would "never attend another one of those for the rest of his life." AWEnestly, who can blame him? Wouldn't that be the choice we all would make, if it were as simple as not wanting to go?

Understanding and processing death is difficult for all of us. When you add the black and white, concrete, literal thinking of someone with autism, processing and understanding death is even tougher.  

In the movie, Temple Grandin, produced by HBO, Temple (played AWEsomely by the fabulous Claire Danes), asks the question most of us at some point and time have wondered, "Where do they go?". After seeing her favorite horse at boarding school die, Temple asks her teacher, "Where do they go?". The question comes up again, after watching cattle die at a slaughter house, "It was here, and now it's gone. Where does it go?". And yet again, at the funeral of her beloved teacher, Temple asks her mother, "Do you know where they go?". To which her mother says, "No". At that point, Temple decides to leave the funeral because in her concrete, literal thinking way, she declared, "I said goodbye when I saw him. He's not there. I've got him in my mind.". What a perfectly AWEsome, yet literal way to process death.

Many believe that people with autism do not feel empathy or sympathy. I have watched my son cry for people and pets who have died, and I have watched him shed tears and try and protect those who are left to live on, heartbroken in their grief. Ryan feels sympathy, how he displays his sympathy may not be what you expect though. 


Ryan's literal mind struggles with terms such as, "passed away" or "lost" and overhearing such words, in what appears a cold, rude manner, Ryan may say, "They are not lost, they are dead.". "Passed away" is ambiguous and "lost" is not "dead". These words surrounding death, make no sense to him. 

Although many tears are shed at a funeral or memorial service for someone who has died, there often are smiles and laughter over good times and memories being recalled by loved ones. That laughter may confuse Ryan since after all, death is gone, death is final, death is sad, so why are people laughing? The emotions that go along with grief can be confusing for someone who struggles to process the emotions of others and who struggles to read the various facial expressions and body language that are part of such an emotional time.

The two funerals Ryan has attended, I worried. I worried in Ryan's confusion to understand death, that he may say something inappropriate, like "Where do they go?". I worried that Ryan may behave in a way others would deem rude or disrespectful, like scripting a television show or video game in a silly voice rather than offering heartfelt condolences in his Ryan voice. There is a lot of hugging and touching at such a sad time, and Ryan does not care to be hugged by strangers. All of these things could lead others to believe that Ryan was demonstrating less than funeral appropriate behavior.

You see that confusion, that type of behavior, those comments may be acceptable if demonstrated by a young child, but, since you can't "see" autism, when such "inappropriate" or "wrong" behavior is displayed by someone who is "old enough to know better", it's hard as parent not to show others judging Ryan how "wrong" they are, even at a funeral. This is why I worried. Fortunately, at both funerals, Ryan proved me wrong and did his best to be patient, kind and sympathetic.

For many people when a loved one dies, religious and spiritual beliefs come into play, and these belief are equally as vague and abstract as the concept of death and dying. To try and explain a soul or heaven, something such a visual, literal person can't "see", is hard for them to understand. "If Jesus came back to life, why can't so and so?". "If God loved so and so, then why did He let them die?". Questions difficult to answer, answers difficult to understand.

I may not be able to answer all the questions that are circling in Ryan's brain when it comes to death, and I may not ever be able to answer the big question, "Where do they go?" in a way Ryan can fully understand, so rather than focus on where they "went", I try and focus on where they "are". I try to explain to my visual boy, with his photographic memory, that where those we lost are, is in our mind. We can still see them through pictures our brain took when we think back to a happy memory we have. And recalling those pictures, helps us miss them a little bit less. As I explained this, I watched my son's face light up, recalling the pictures he has stored in his amazing brain, of our beloved neighbor who always greeted Ryan with a warm smile, regardless of how many times she was ignored in return. I watched the confusion and sadness slowly fade away, being replaced with understanding and joy....and a picture in his mind.

I am ill-equipped to answer, "Where do they go?", however, I am equipped to answer where they "are". I can remind Ryan of all the places our friend or family member had been, of all the places we went together and of the all the good times we shared. I can assure Ryan that no matter how much time passes, we can always "see" them in the pictures lovingly stored in our mind and "feel" them in the love we have in our heart. Isn't knowing where they "are" comforting to our grieving, sad heart? 

As with so many things in life, even when it comes to death, trying to help Ryan and his AWEsome brain understand something so troublesome, I wind up being the one learning from him. 

As my husband and I watched Gravity this past weekend, I wondered why I was subjected myself to the terrors of space a second time, since after watching George Clooney, who can even make a space suit look sexy, float off into space nearly killed me the first time I watched it, why in the world was I watching such a horror happen again? I mean, losing George briefly to former pro-wrestler Stacy Keibler was hard enough to take, watching him drift off into space alone...without me....twice, well, that's more than any woman should have to bear.

Besides losing George to the infinite vastness of space, Gravity was tough for me to watch. I have issues with the whole running out of oxygen, freezing to death, and possibly burning up while entering the atmosphere, type conditions. I know there are brave astronauts and scientists who risk the dangers of space due in part for the betterment of mankind, and due in part because it really makes them look good on match.com, and I say, kudos to them. Lord knows we sure are doing a number on this world so someone, yes, even if it means sacrificing George, better find us a new world fast.

Along with these super smart rocket scientists, there are even some dumb, adventure seeking civilians ready to board the Virgin Galactic Space Shuttle for a mere $200,000 in order to experience the rush of leaving the Earth's atmosphere for a round trip ticket to space (and hopefully a better outcome than poor George). AWEnestly, for me, the only thing scarier than blasting off from this world in search of a new world in the oxygen-less, freezing cold, meteor ridden, vastness of space, would be blasting off this world with The Biebs in a drooping butt spacesuit strapped into the seat next to me.

Call me a scaredy cat, a cissy, a wus or boring, but, there is no way I'd want to leave the world that I have become so accustomed to, a world with plenty of oxygen, AC, heat, and Oreos that don't float away when you try to dip them in milk that also floats away, for a world that is confusing, different, scary and hard to navigate. Especially, if I had Bieber leading the way. 

Even if I didn't burn up, freeze to death or run out of air, but, landed safely in a new world, what if upon my arrival, no one understood me? What if no one tried to understand the world I came from in order to make me feel safe, happy and at home? What if no one cared enough to learn about my world and all they wanted was for me to assimilate to their world, so I wouldn't look or act so different from the local natives? Sometimes, it just feels safer and easier to stay in my own world, and I would bet a $200,000 First Class ticket to space, that Ryan feels exactly the same way.

I have to be AWEnest folks, there are days, ok, fine, weeks, where I feel like it's safer, easier and better to stay in my world, so I constantly suit Ryan up and do my best to shuttle him into my world, while often forgetting to put on my spacesuit and enter his. Ryan often fights this ride, because to him, his world is far superior and much easier to navigate than mine.

This summer, more so than any other time, it has felt like Ryan and I have been living in two different worlds. So, in order to close the space between our two worlds, I have been busting my butt to strap Ryan into a space shuttle and rocket him into my world, with very little regard to what he is leaving behind in his world.

I rationalize these space shuttling decisions by reminding myself that my neurotypical world is where most people live and where most people are comfortable. After all, isn't my world the acceptable ideal? A world where people socialize, communicate and interact with one another to make a happier, productive world. Not a solitary world, where video games, television shows, silence and the oh, so great Steve from Minecraft, is preferred over all other lifeforms?

I have spent so much time and energy telling Ryan to "check back in", "turn off the game", "go outside and play", "come to the store with me", and yes, even, "Earth to Ryan", yet, I have spent very little time or energy visiting his world and finding out what is so life sustaining for him there. After nearly burning Ryan up, time and time again, while trying to pull him into my orbit, I decided it was time for this scaredy cat girl to break out of the comforts of my world and join Ryan in his. Turns out, Ryan's world wasn't so different from mine, and the bonus was, I didn't even need a spacesuit.

Ryan was in his world, in his bedroom to be more specific, playing Minecraft on the laptop with his iPod Touch right next to it playing some type of music. And for a change, I did not try and force Ryan into leaving his world and coming to visit me in mine, instead, I sat down next to him and asked Ryan what made his world so special. This opened a portal into his world he very rarely shares with me, or with anyone, because most people, including his guilt ridden mother, are too busy trying to close that portal in order for him to join a world where it is often cold and the air feels so thin that it makes it hard for my beautiful boy to breath.

After propping Ryan's portal open, and spending time in his world, it turns out, that Ryan's world is not so different from mine. He was listening to Minecraft parody songs on his Ipod Touch while snuffing out creepers on Minecraft. Not so different than me listening to my latest playlist while snuffing out dust bunnies with the vacuum cleaner. These songs he was listening to, which are so unfamiliar in my world, are all parodies of chart topping songs that are very familiar in my world thanks to Pandora, Sirius, and iTunes Radio. I suggested that we play Ryan's music on the bluetooth speaker in my room so we could really jam to it. Ryan beamed at the idea.

As the first chords of Moves Like Creeper (sorry Maroon 5 it may top Moves Like Jagger) blared out of the speaker, I swear, the sun illuminated my boy and his world in a way I had not witnessed all summer long. Ryan's smile, his joy was palpable as I finally landed on his soil. 

Ryan sang the lyrics to Moves Like Creeper  while I belted out, "I got the mooo-oooo-oooo-oooo-ooo-oves like Jagger". Ryan was so happy while we both sang and danced on my bed that he didn't even criticize my "terrible voice" until at least 15 minutes into our sing off/dance off had begun. As we were singing, dancing, laughing and living together in that moment, I realized that finally both of our worlds had collided, and it was not a cataclysmic event, in fact, it was perfectly AWEsome. This collision has hands down, been the best night of my summer and I am so glad that I finally took the time to see the stars that make his world so bright.

As often as the gravitational pull of my world tries to suck Ryan in, I recognize that I need to occasionally shut down my gravitational field and shoot on over and join Ryan in his world. While there, I must look for ways that both of our worlds can collide with minimal damage to the lifeforms that inhabit our unique, but, strikingly similar worlds. I so frequently ask Ryan to risk his air supply to come to my world, yet, I get so caught up in breathing my own air, sometimes I forget to breath his.

I understand that the world of autism in many ways is very different than the neurotypical world many of us live on. I also understand that it is important for Ryan to assimilate to my world since that is the standard most inhabitants of this world expect, but, I think it is equally important that those of us who are aliens to the autism world, are respectful and kind, and that we do our best to understand what is so important in a world that differs from our own. We must respect those differences and allows those differences to remain when those living with autism visit our neurotypical world.

If the price of space travel is greatly reduced over the next few decades and I get a little braver, perhaps I will venture out into "the great unknown". If I do, I promise I will not sit next to Bieber, no matter how many trips he has taken before me or if he finally decides to pulls his pants up. 

There is no doubt that it is Ryan I will want beside me since he has become so successful at living in and navigating an unfamiliar world. Ryan has proven that no matter how difficult the terrain may be, how unforgiving the natives are, or how unfamiliar a new world may be, Ryan can adapt, and in the process, he has shown how important it is for others to adapt too. And if there is room on our shuttle, I will save a seat for Tom Hanks, since he survived a deserted island with only a ball named Wilson, and he landed Apollo 13 safely in the South Pacific. Sorry George, you will need to take another shuttle, I just can't trust you to commit. 

After what can only be described as the coldest, iciest, most hideous winter of all time (which by the way, is how I describe every winter), last weekend, we finally had 48 hours filled with warmish temperatures AND sunshine. I feared it was a sign that the end of the world was coming, since warm and sunshine in PA rarely occur on the same day, so in between my soaking up a little Vitamin D (with SPF 50 of course) and swinging with my daughter on the playground, I kept my eye out for a plague of locusts. Fortunately, no locusts unearthed themselves after such a cold winter, but, what did pop up out of the ground with the return of warmth and sunshine, were beautiful flowers. Yes, the flowers were blooming everywhere which meant the bees were a buzzing. Even though I did plenty of research, and discovered that swarms of bees do not appear anywhere on Google as a sign of the apocalypse, there was still no convincing Ryan of this pertinent information as he remained inside the house building his arc.... and waiting.

To say that Ryan is a little afraid of bees, would be like saying The Book of Revelation being read to school age children, long before a child is ready to hear such horrific doomsday predictions, may cause a child to need a little bit of therapy. We all have things we are afraid of...bees, snakes, clowns, a clown holding a snake...which  would be my own version of Hell. AWEnestly, if there is a Purgatory and I'm stuck there, chances are I will be stuck next to a snake handling clown. Curse my college years sins. Some things we fear are utterly ridiculous...I mean besides the creepy murdering clown from Stephen King's It movie, most clowns may be a little disturbing, but they should not keep me from going to the circus, but they do. When you think about Stephen King's somewhat demented imagination that enables him to come up with such creepy, freaky books, that include a possessed car, a demonic clown, a pig blood soaked prom queen, and un-dead pets, Stephen King is who should haunt my nightmares, not some sad, hiding behind his makeup, creepy faced clown!

I'm old enough now to recognize some of my fears as being irrational, but that still doesn't make me any less afraid. Once, a small garter snake was coming at me, slithering at an extraordinarily high rate of speed, fangs showing, looking for blood (at least that's how I remember it) and although I would throw myself in front of a train for my daughter, clearly I will not throw myself in front of what I feared was a deadly, poisonous, garter snake. In fact, I will run in the opposite direction and leave my two year old daughter in my dust without a second glance backward until I'm safely in the house while my innocent toddler stands transfixed in the yard wondering how Mommy could possibly run so fast. Wrong? Yes. Sorry? Yes. Would I do it all again? Yes...unless of course there was the slightest possibility that a clown was lying in wait for me inside the house.

Ryan's fear of springtime flowers, which draw deadly, stinging bees, is no less extreme than my snake/clown phobia. No matter how many times I have explained the beauty of flowers and the sweet nectar that draws the bees in, Ryan does not see the beauty of a daffodil or an azalea bush, he sees pollen sucking deadly bees, horrifically swollen bee stings and sticky antiseptic followed by the suggestion of (shudder) a band aid. Just like Ryan's fear of bees blocks his ability to see the beauty in flowers, and my fear of clowns blocks my ability to see the beauty in a child's smile at the circus, people's fear of "different" may block their ability to see the beauty in a child who does not look or act the same as others. Beauty really is in the eye of the beholder. The phrase, "beauty is in the eye of the beholder" means that each person sees beauty in a different fashion. In other words, different people have different ideas about what is beautiful.

For years my friends Denial and Clueless tried to make me miss out on Ryan's beauty. They tried to convince me that wearing the cool clothes, having the cool haircut, wearing the cool sneakers and acting like every other kid on the playground is what would make Ryan beautiful. The sometimes odd facial grimaces, the weird noises, and the repeated scripting, Denial said, was not beautiful, and others would not find beauty in such obvious differences either. So, just like the creepy clowns at the circus, who hide who they really are behind makeup and clothes, I tried to camouflage my boy and his differences, by making him someone he was not, because unlike the circus clowns, I did not want people pointing and laughing at my son.

Denial made me feel like I was doing the right thing when people would see Ryan, dressed in the "clown suit" clothes that were really not him, and say, "Look how beautiful he is!". Denial also assured me that making Ryan participate in all the same activities the other kids did, like baseball and soccer, would make Ryan look less "different", regardless of the fact that Ryan looked like a charging bull running down the baseline due to the awful feeling of the batting helmet. Denial's assurance that everyone would see past Ryan's difference and see his beauty if I tried to make him look and act more like everyone else, blinded me to how difficult being "beautiful" had become for Ryan. 

In fact, Denial had me so convinced, that I saw right past the stretched out shirt collars, the constant tugging at the hard, stiff denim jeans and the non-stop pulling of the low cut socks that would never reach his knees no matter how hard Ryan pulled. The irony was, Ryan was more beautiful in his unstylish fleece pants, his collar-less 100% cotton tshirts and his high white socks, happily scripting away while playing his latest video game because he was no longer wearing the clown makeup, hiding who he really was underneath, just so others would see their version of beautiful. It's a shame it took this beholder so long to finally see Ryan's beauty.

Now that I can see Ryan's beauty, I am dumbfounded that others can't.

I see the beauty in a smart, funny, little boy transforming into a handsome young man.

I see the beauty in a boy's ability to memorize and mimic everything from the microwave beep to Jim Carey's version of The Grinch.

I see the beauty in Ryan's unique and often hilarious way of interpreting our strange and crazy world.

I see the beauty in a boy whose confidence in his musical ability makes him stand apart from his athletic brother and sister.

I see the beauty in a boy who may struggle socially, but, has found happiness in the absence of being a part of "the crowd".

I see the beauty in a boy who has given me the gift of seeing the world through a very different lens and his willingness to share that world with me, even when I didn't deserve it.

I see the beauty in a boy who has loved his mother through her own phobias, fears, and poor choice of "friends", while still forgiving that mother for the times she was once blind to his unique beauty.

Even though I finally mustered up the courage to tell Denial she was wrong about the beauty of "different", she still comes around every now and then and suggests that Ryan wear the high black socks that are "in" versus the high white socks that he prefers. Most days, I slam the door in her face, but, I have my weak moments. Unfortunately, I still come across people who have many weak moments and who are still blind to the beauty of "different". I don't get angry with this people, because after all, beauty is in the eye of the beholder, but, I do feel sad for them. To miss such beauty because what they see is so different from what I see, is not something to judge, it's not something to be angry about, it's just something that these blind beholders will miss out on, just like I miss out on the circus....every....single....year.

How we see and what we see as beautiful varies from person to person. To Barnum and Bailey, a clown is not something to be feared, but, a clown is a thing of beauty because for most people (those without strange clown phobias), clowns equal laughter and laughter equals "ca-ching". To a beekeeper, springtime flowers are not something that is equated to deadly bee stings, but, the beauty of these flowers equals busy, honey producing bees. To a mother, a boy, who has finally grown comfortable in his own skin by being just who he is, regardless if others find him beautiful or not, is hands down the most beautiful sight a mother could every lay eyes on. For Ryan, beauty is in the eye of the BEEholder and chances are, he may never see the beauty in flowers or bees, just like I will never, ever, ever for the rest of my life and not even in Purgatory, find anything remotely beautiful about a clown, but, the two of us together will continue to help others see the beauty of "different", just not at a flower show or at a circus.

I am a self-admitted, self-diagnosed, hypochondriac. In fact, if there were a club for hypochondriacs, I feel certain I would be unanimously voted president, as long as I wasn't out sick or at a doctor's appointment the day of the nominations. If it's a scab on my arm that's been there for three days, it's most certainly skin cancer. A week filled with achy joints is not my "Welcome to the Mid-40's Party", chances are good, I have Lyme Disease. A tight feeling in my chest is not a result from skipping the gym for three weeks then hitting the weights as if I hadn't missed a day. Oh nooo, that tight feeling most assuredly is not muscle strain, it must be angina, therefore, a stress test is right around the corner. A cold and cough that sticks around as long as the pollen sticks to my porch furniture, is not something as simple as seasonal allergies, but, chances are very high that I have contracted a rare form of Avian Influenza, aka, Bird Flu. Yes, if I have read about it, chances are, I have it, or I will get it...soon. A doctor once told me that I "look for the unicorn instead of the horse" which is a much nicer way of saying, "Lady, you are bat sh** crazy".

I would love to tell you that my hypochondria is limited to just my own perceived illnesses, but, that wouldn't be AWEnest of me. Every one of my doctors, and sadly, my children's doctors, have a photo of me lassoing a unicorn in their files. I never leave the doctors disappointed as I constantly walk right past the horse, completely ignoring him, so worried about finding that stupid, elusive unicorn. In fact, I think I leave many of the doctors shaking their head in bewilderment and looking forward to their lunch break when they can share my latest disease fearing, unicorn searching frenzy with the other doctors in the lunchroom. Yes, I'm a frantic worrier about my children's health, more so than my own (my primary care physician, my gynecologist, my breast care doctor and even my dentist would all find that VERY hard to believe). So, when Ryan was sick for a week with a fever, cold, and horrific cough (Bird Flu, Swine Flu, West Nile Virus...have the mosquitoes even been born yet?), WebMD was constantly pulled up on my phone and Ryan and I made a trip to the pediatrician's office....twice.

I was convinced Ryan had pneumonia, RSV, strep throat or something that would require some type of medication and a quick fix, but, alas, it was not bacteria born, it was the dreaded V Word...virus, which meant no antibiotic, no quick fix, just plenty of fluids with the oh so wise words, "just let the virus run it's course". Are you sure there isn't a pill, an ointment, an elixir, something to speed up and ease up this so called course? I mean, Ryan had already missed a week of school which meant he was way off schedule and that translates to lots of make up work that will come home upon his return to school, which increases the likelihood of meltdowns, which greatly increases the probability that I may feign a case of Ebola Virus so the CDC can quarantine me until all the make up work is completed. Are you absolutely, positively sure there isn't a pill for this?

Whatever this VIRUS was (I no longer say "bug", read my blog post, Literally Speaking in March, 2013 to understand why), it made the dreaded, media hyped, Swine Flu seem like a walk in the park. Most days, Ryan's fever was in the 103-104 range, you know the kind of fever where they feel so miserable and just want cuddled and you have to put on a spacesuit to protect your skin from the heat. Fortunately, the fever is now gone, but, the cough, which at night echoes off the walls sounding remarkably like we are living in a wing in an old tuberculosis hospital, still lingers on...and on....and on. Poor fella, he's not a fan of being sick, and like any mom, I hate to see my kids sick too, until one day, several years ago, my old friend Denial plopped down on the couch next to me and my fever ridden boy and showed me a research article she had just discovered on Google (of course). 

This was back in the day when my old friend Denial and I were thick as thieves. Denial told me that some parents believed their child's autism symptoms abated when their child was sick with a fever. What? Yep, many parents noticed a reduction in stimming, an increase in language and an overall reduction of autism symptoms when their kids ran a fever. Once the fever went away, the autism symptoms returned. In fact, this was reported by so many parents enough times that a paper published in the journal Pediatrics in 2007 by Drs Dominick Purpura and Mark Mehler of the Albert Einstein College of Medicine, addressed this phenomenon. These two doctors discovered that the correlation between a fever and reduction of autism symptoms had to do with a part of the brain called the locus coeruleus. Yeah, I don't know how to pronounce it and I certainly had no idea that was part of my brain either. AWEnestly, I didn't care about all the scientific stuff that I couldn't even begin to say or understand, I was just astounded that a fever might allow me a chance to connect with my son! Well alrighty then, I decided to sit back and wait for the next virus to hit.

Don't worry, no need to call child services, I didn't go all Munchausen Syndrome by Proxy on Ryan. I didn't intentionally get my kid sick by sneezing on him, running him into the neighbors house where strep throat was running rampant, or hide his Flintstones Vitamins from him, but, I have to be AWEnest, this complete and total hypochondriac was almost as excited for the next cold and flu season to hit as I was when I discovered WebMD. I couldn't help but wonder, if my guy got sick, would I starve his cold and feed his fever, to see if maybe, just maybe those parents were right? For a kid who constantly chews on his fingers, it didn't take long for Ryan to pick up a virus and for this mom to sit back and see if a fever, would in fact, crack his beautiful, impenetrable shell. 

I remember that virus like it was yesterday. I recall checking Ryan's temperature religiously, which of course he hated, but, I kept telling myself, that if these parents were right and his autism symptoms abated with the fever, then eventually when the fever rose, he wouldn't mind me sticking a thermometer in his ear every five minutes. Sure enough, in a matter of hours, Ryan's fever crept up and once it hit 101, I gave him some Motrin (I'm not that twisted that I'd make him suffer), but, I did sit next to him on the couch observing my sweet boy before the Motrin kicked in, waiting to see if his language improved, his connection got stronger, or if his Thomas the Tank Engine scripting subsided. In my heart of hearts, I did believe that Ryan seemed more "checked in". He answered my questions more readily, he responded more appropriately, and he let me snuggle him for hours. Was this a result of the fever taking hold of Ryan's locus coeruleus or was this just a little guy who felt so miserable he answered my questions so I'd leave him the hell alone and he could get back to watching Thomas?

Denial assured me that Ryan's fever made him "better" which of course was an oxymoron for a kid whose eyes were glazed over with fever and who had snot dripping off his chin. Were Ryan's autism symptoms really reduced or was Denial fooling me again? Was my fear of The A Word so visceral that this research study became my placebo? My quick fix, my belief that something "wrong" got "better" with something as simple as a fever, or was it "all in my head"? As a mother who was so frightened by autism due to my lack of understanding, I think I would have believed anything might make Ryan "better". The placebo effect, a belief that some type of treatment will change a particular condition is so strong, that there is a perceived actual improvement in the condition, when in fact, there is none. For a long time, Denial and the placebo effect were hands down, part of my journey into autism acceptance. I kept looking for the "quick fix" whether it was real or all "in my head". I needed something to hold onto, something to give me hope, something to believe in, something that would one day make my son "better". More importantly, I needed something to wean me off of this powerful addiction I had with Denial. Or at the very least, a pill that made me think I had.

Don't we all want a quick fix or a pill to "make it better"? A pill that will heal a broken heart. An amnesiac syrup that will cause us to forget painful mistakes. An ointment that can rub away and clear up hurtful misunderstandings. A shot that may sting for a second, but, can protect us from hurt in the future. A fever that effects the locus coeruleus and makes autism fade away. Just like so many things in life, there are no "quick fixes" to make it all better, nor are there placebos to make you think things are better (unless of course you count wine). A broken heart needs time to heal. Mistakes may be hard to admit, but, sometimes, it's the only way to learn a valuable lesson. Misunderstandings take patience and forgiveness. Suffering through dark, hurtful times, makes us appreciate the light that much more. 

So, whether or not a fever helped Ryan "check in" all those years ago by reducing some of the hold autism had on his locus coeruleus, or whether the study I had read about became a sort of placebo, I will never know. What I do know, is back when Denial was my friend, I was terrified, I felt terribly lost and alone and the quick fix I was looking for wasn't to make Ryan "better" because he was not, and is not, sick, broken or diseased, the quick fix was for me. I was the one with the damage, the boo boo, the hurt. A hypochondriac mother who was so worried about finding that stupid unicorn, that I almost missed the beautiful, magnificent, colt galloping right in front of me. 

As Ryan and I sat in the pediatrician's office (twice) last week, and my boy's temperature registered 103.7, he was the same Ryan he was before the fever. Ryan was brilliant as he assured the doctor that a strep test would not be needed since he felt fairly confident his "lungs had pneumonia" so the stethoscope was the only form of torture necessary. Ryan was anxious as he insisted (in a bossy, not terribly nice voice) on doing the flu swab in his nostril himself for fear the doctor would "poke" his brain then held the "contaminated" swab over his head refusing to give it to the doctor for fear she would "poke" him anyway. Ryan was proud that he survived the doctor's appointment with only a hint of tears and no shot or strep test. And Ryan was clever as he told me his blood sugar was dropping and convinced me that the only way to elevate it was via a Sheetz slushie.  

With or without a fever, Ryan is AWEsome and just like a virus that has to "run it's course", autism will continue to run it's course throughout Ryan's lifetime. Some days, some situations, some moments, autism will be a bigger "symptom" than others. Some of the symptoms may disappear and be replaced with new symptoms, symptoms that may not show up on WebMD, leaving me completely at a loss. As I continue to watch Ryan grow, achieve and succeed, I am amazed at the fear that once held such a life altering grip on me. My fear, my unicorn searching, was all part of my journey that had to "run it's course" because without my mistakes, my worries, my obsessive Google searching, I would not be where I am today, therefore Ryan may not be where he is today either. 

You see, as Ryan's mother, I am his placebo. I cannot make autism go away with a pill, a shot or an untreated fever (I swear I always give him Motrin), but, I can be the voice when Ryan can't find his words, I can be the advocate when Ryan is too scared or too confused to fight, I can find the support he needs to be successful and I can be the arms that squeeze him to let him know he is loved. I will always be Ryan's placebo, because on the days when life is hard, the days when his differences stand out, the days when his "symptoms" are more severe, as Ryan's mother, I will always be what makes him "feel better" and no, "feeling better" is not "all in his head", that my friends, is "all in his heart".

When I was a kid, I used to occasionally put aside the Lucky Charms and opt for a bowl of Wheaties because just like I believed Lucky Charms were "magically delicious", I also believed that Wheaties was "The Breakfast of Champions". Who doesn't want to trade in some marshmallows and a leprechaun in order to be a champion? Back in my younger days, Misty May-Treanor was not on the front of the Wheaties Box because quite frankly, Misty wasn't even born yet (ouch). No, back in the old days, Bruce Jenner held the coveted Wheaties Box Champion Title.  Oh Bruce, Bruce, Bruce, times they have a-changed. The 1976 decathlon Gold Medalist Bruce Jenner, was most certainly a champion and worthy of a Wheaties box cover, but, the Bruce Jenner of today, well, suffice it to say, Wheaties may want their box back. Poor Bruce, he got so caught up with those Kardashians and all that plastic surgery....bad plastic surgery, that I wonder if General Mills has bought all the Bruce Jenner Wheaties off of eBay to cover their champion idolizing tracks.

For some reason, when I hear the word "champion", I almost automatically think champion (noun), and picture an athlete (not Bruce Jenner...sorry Bruce) on a podium being given a trophy or medal. According to Webster, the definition of THAT champion is "someone or something that has won a contest or competition especially in sports." Obviously, in 1976, Bruce deserved to be on The Breakfast of Champions box, after all, he was an Olympic Gold Medalist. The definition of the verb champion, is never on the front of the box, heck this type of champion isn't even on the side or the back of the box, which incidentally is where champion's photos were placed prior to 1958 (A little Wheaties trivia that could one day make you a champion (noun) on Jeopardy. You're welcome). Champion (verb)  is "a person who fights or argues for a cause on behalf of someone else". This type of champion (verb) may be outspoken, may fight, argue and advocate for someone they believe in, but, these champions never make it on the front of the Wheaties box, preferring to allow the champion (noun) they are championing, to remain front and center.

In honor of Autism Awareness Month, today's blog is for all the champions who don't make it to the front of the Wheaties box, but, who are no less a champion than an Olympic Gold Medalist. These champions of children and adults living with an Autism Spectrum Disorder, are mothers, fathers, brothers, sisters, grandparents, teachers, and therapists. They educate, advocate, and support the belief of "different, not less". Because of their love, because of their commitment, because of their desire to see their child, sibling, grandchild, or student "win", these champions (verb)  have helped create champions (noun). Just like an Olympic Gold Medalist, these champions work tirelessly in order to make sure their son or daughter stands on that podium. They "fight or argue on behalf" of their champion who may one day be on the front of the Wheaties box. They are the champion (verb)...the fighter...the coach...and the voice...that helps create a champion (noun).

It would be delightful if someday Wheaties would have an autism champion (verb) on the front of their box, but, chances are, that won't happen. So, in order to make up for General Mills' lapse in judgement, I want to make sure the champions championing autism awareness are visible today. These fighters, these tigers, are not roaring because they want to be difficult, these champions (verb) are roaring because they need to be heard since they are "fighting on behalf of someone else"...their child. If they don't roar, then who will? 

Until I began championing my champion, I was scared, beaten down by The A Word and my cohorts, Denial and Clueless, and I had no idea what I was doing. I worried more about other people's impressions than what was right for my son. Now I will fight, champion, advocate and roar when I need to, because in order for my son to become a champion (noun), he needs a champion (verb). Most days I don't have to tie on my boxing gloves. Most days people are aware that what every person, with or without an ASD, wants is ACCEPTANCE. The month of April is about Autism Awareness and Autism Acceptance. So, today I am championing for all the champions (verb) loving a child with an ASD. Here are a few examples of moments that are front of the Wheaties box worthy:

For those folks in the mall who may be out looking for spring sandals for your child, we want you to know that the meltdown in the shoe store is not meant to disrupt your shopping experience or make you feel uncomfortable, but, the lights, the noise and the smell of the shoe store for our child is too much. Our kids also wear shoes and we champions have to shop for shoes and put them on our kids feet.

For the school administrators who are tired of words like FAPE (Free Appropriate Public Education), IDEA (Individuals with Disabilities Education Act), and IEP (Individualized Education Plan),  and who often believe that autism is "the flavor of the month", we are not trying to make your job harder. Our kids need an education. We champions make sure they get it.

To the insurance companies (whom AWEnestly, I have NO sympathy for), who don't understand that a trip to the dentist is like a trip to Hades for our kids, we are not trying to harass you with our repeated phone calls or get your fired when we ask to speak to your supervisor. We need the right code for the right surgical center so our child can get a cavity filled without fire and brimstone raining down on them in the dental chair. Our kids need good dental hygiene, and we champions will walk through fire to ensure you pay for some of it (then curse all insurance companies to Hades when you fail to pay a cent).

We are the voice, the fighter, the educator, and the tiger. We champion for our kids whose communication struggles makes it easier for them to remain silent. We champion for our kids who hate the feel of leather boxing gloves. We champion for our kids who cringe at the sound of a deafening roar. We will continue to argue, to fight, to walk through fire in order to champion our champions, and even though you may never see our face on the front of the Wheaties box, I promise you will always hear us ROAR.