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.

If we are lucky, we all have a few close friends, a few besties that we can count on for the good times, the hard times, and the times when life just takes a big, giant dump on you. Each one of those friends plays a different role. 

There is the grab a bottle of wine friend who helps you connect with Denial when you want to shut it all out and drown your problems with wine, cheese, chocolate and idle chit chat. There is the friend who takes that bottle of wine and beats you over the head with it and tells you to "suck it up" and helps you put your big girl pants on while silmutaneously dragging you kicking and screaming into your wine free reality. There is the friend who makes things happen and gets things done when you don't, when you can't, when you won't. Then there is the friend who just knows, who gets it, who gets you. The friend whose soul is so similar to your own that you are convinced you most assuredly were friends, if not sisters, in another lifetime. The friend you share a quiet connection with, a deep rooted bond based on hearts and minds that are so alike. The friend who hears what you don't say.

All of these friends matter. All of these friends are needed. All of these friends hear you. All of these friends play a vital role in who and what you are, but, the friend who understands from just a look, a gesture, or what you don't say, sometimes hears your silence the loudest. 

It is the unspoken friend who knows my thought, my move, my response, and my reaction sometimes before I do. This friend, who knows my brain and my heart almost as well as her own, bought me this sign for my birthday that reads, "Best friends hear what you don't say...". I love it because it's true and because it's us. This friend and I have heard one another without ever saying a word. We have provided support without a cry for help. We have shown up without so much as a sigh. We have checked in when we were checked out. We have known the answer without a question being asked. Then when the words "How did you know?" finally come, no response is needed. 

As I stared at my sign, that hangs on my most favorite place in the world, my beloved back porch, where I spend many summer days and nights, I couldn't help but compare this unique, wordless bond I share with my friend to the quiet bond I share with Ryan. Of course Ryan would never call me his "friend" let alone his "best friend" because, well, I'm just Mom, but, my connection with Ryan is equally unique, and just like my friend and I, sometimes I can hear Ryan without him saying a word.

Although Ryan is completely verbal, he does not say much. There are no sit downs where he shares his feelings with me. I get very little information on how his day went, what is happening in his life, and how he feels about it. I understand that this is typical behavior for many teens, and I understand that hormones make Ryan's silence seem even louder, but, most teenagers have a bestie that they can confide in. A friend that they can text, tweet, or snapchat. A friend who shows up, a friend who helps them forget, a friend who gets it, a friend who hears what they don't say. Ryan does not. Autism makes finding that connection, that bond, that friend difficult. And even if he finds it, knowing what to do with it is even more difficult.

With Ryan, there also is no, "Hey Mom, how are you? How was your day?" coming from his mouth. That is not to say he doesn't care about me or my day, but, autism makes that social back and forth exchange difficult for him, so it's easier not to ask. Not asking, does not equal not caring.

As I sat swaying back and forth on my porch swing, recognizing the parallels between my friendship with my girlfriend and my relationship with my son, I couldn't help but smile. In that moment I realized that most of the time, even through the silence, I hear what Ryan doesn't say.

When Ryan comes up and presses his forehead against my own he is saying, "Mom, I have something good to tell you, so please ask.". When he walks in the front door after school and goes straight to his room without putting his backpack in the foyer closet, taking off his shoes and coming to give me a hug, he is saying, "There was a glitch in my day". When Ryan pulls at his eyes and grabs at his face in an attempt to hold back his tears he is saying, "Mom, I'm hurting, I'm sad and I don't know how to tell you". When he sniffs 50 times in 30 seconds he is saying, "I need some type of deep pressure, squeezy tight hug because my sensory system is overloaded". When Ryan's hand flicks back and forth and back and forth until it is just a blur of skin, he is saying, "I'm anxious" or "I'm excited". When he fights back a smile and contorts his face in an anti-smile grimace, Ryan is saying, "I'm proud, happy, excited, but, I'm not sure how to react or share my joy". Yes, if I "listen" closely, I hear what he doesn't say.

And although Ryan may not directly ask me about my day, when he catches me silently crying, he will snuggle close and even though he does not utter a word, I can feel his "I'm sorry you're sad mom" in his knock me down hug. I can see Ryan's compassion and his sympathy for my sorrow when a tear or two falls to match my own. I can hear his joy when he laughs with me even if he has no idea what I am laughing about. Yes, Ryan hears what I don't say too.

So, just like with my bestie, I have that quiet, unspoken connection with Ryan too. And I know he has that quiet connection with me. Ryan shares his life, his joy, his accomplishments, and his heartache with me. I just have to see it, I have to feel it, and I have to hear it, even when he says nothing at all.

Who knew that when my girlfriend stopped her bike at an Outer Banks beach shop to pick up this sign for my birthday, that the sign would not only remind me of our special, quiet bond every time I look at it, but, that it would also remind me of the quiet connection I share with Ryan too, which makes me love this gift even more. 

As I relax on my back porch swing, wine in hand listening to the crickets and the sound of Ryan scripting the latest Minecraft Youtuber coming from his bathroom window, I look at the sign and smile. "Best friends hear what you don't say..." helps me to remember that although Ryan will never refer to me as his "best friend", I will always hear him. Even as my little boy slowly morphs into a full fledged, silent, brooding teenager, in those moments where I worry he is slipping away from me, if I listen closely, I can still hear what he doesn't say. 

Autism sometimes makes it hard to hear Ryan. His silence can be offputting or confusing. This silence makes finding a connection with a friend hard. Ryan may not have a friend who will stop by with a 2 liter bottle of soda and some idle chit chat (chances are he wouldn't even let them in the house if he knew "chit chat" was on the agenda), Ryan may not have a friend who tells him to "suck it up and put on his big girl pants" (Suck what up? And why would I wear girls clothing?) and face what lies ahead, but, if Ryan finds one friend who sees him, who feels him and who hears him when he doesn't say a word, I believe they will both be happy, secure and comfortable in their silence.

In a world that is busy, loud and full of noise, sometimes a best friend (or a mom) really can hear you without any words spoken, without any connection from your mouth to their ears. All anyone needs is a connection to your heart and they will always be able to hear what you don't say.

Spoiler alert! There are some references to Disney Pixar's new movie, Inside Out in today's post!

Every summer, you can count on at least one trip to a dark, cold movie theatre for a kid movie, even though we spend all winter long dying to be outside in the bright, hot sun. Last week was our trip. Twenty-seven dollars later, Ryan, Emma and I were nestled in our big, sticky (gross) theatre seats with our popcorn and sodas along with hundreds of other little rugrats. As much as I sometimes loathe a kids movie, this one, I was excited to see. This one looked unique, different and fun. Little did I know, this movie, Inside Out, would not only entertain me, it would allow me an opportunity that I have waited years for...a glimpse from the outside in. 

Ever since we heard The A Word, I have thought countless numbers of times, "if I could just get inside his head to see what he's feeling" to try and understand Ryan better. Just a quick peak inside that big brain of his to know exactly what is going on in there. This desire has burned even stronger this summer as puberty, and the pendulum of emotions that goes with all that hormonal upheavel, has lead Ryan to spend countless hours alone in his bedroom seeming to find so little joy in the things he once loved. Not knowing what's going on inside that hormone fueled brain of Ryan's, has lead this mother to lie awake at night for countless hours worrying.

Since autism causes Ryan to struggle with expressing his emotions, unless he is on the extreme end of joy or anger, it's hard to know what he is feeling, so as his mom, it's hard to know what to do and how to ensure he is "happy". And there it is. The word every mother lives by and lives for, "I just want him to be happy". Sometimes, it's hard to know if he is.

Along with wanting to know "what's going on in there" I have also expressed, out loud, to anyone who would listen, hundreds of times, "I just want him to be happy" not knowing exactly what happy meant for Ryan. Happy to me means, parties, friends, social outings and endless hours of phone calls, texting and social media check in's. Although I'm perfectly aware that is not what makes Ryan happy, since I can't get inside his head to figure out what does make him happy, I'm left to try and figure it out while standing on the outside desperate to look in.  

Ironically, after years of anguishing, after years of wondering what was going on inside Ryan's head, it took Disney Pixar approximately 102 minutes to show me that not only did I struggle to understand the emotions going on inside my beautiful boy's mind, he struggled to make sense of them too. Thanks to Inside Out, Ryan finally got to "see" Joy, Sadness, Anger, Disgust and Fear and how all those emotions make you feel. Thanks to Disney Pixar, these emotions were finally explained in a way Ryan understood, quite possibly for the first time. And this mom, got to get a glimpse from the outside in and what I saw made me recognize just how hard it has been for Ryan to understand all those emotions running around in his head. 

As I sat surrounded by hundreds of children crunching popcorn, slurping soda and giggling at the antics of emotions running around inside the main character Riley's head, I heard none of it. As the theatre screen illuminated with Pixar only brilliant colors and the occasional light of a cell phone breaking through the darkness, I saw none of that. What I heard instead, was Ryan's giggles, his tears and his sniffing as the emotions in Riley's brain impacted the emotions in Ryan's brain. What I saw, was something beautiful, something I had spent countless hours trying to see and something I paid multiple therapists to help Ryan find. In that darkened movie theatre, with the glow of the screen on his almost man like face, I saw recognition, understanding and that light bulb moment when it all comes together and the power that understanding gave to my son. 

Ryan watched on the big screen the struggle with emotions that goes on inside all of our heads and how sometimes even though we know what we feel, we are unable to share those feelings. Whether it's Joy, Sadness, Anger, Fear or Disgust taking over the controls inside our head, sometimes, it's hard to let others know which emotion is running the show. 

Inside Out also showed Ryan that things that once gave us joy as a child, no longer do as we get older, and sometimes that makes finding Joy difficult. Ryan has tried to tell me repeatedly he is "done with swimming" and that "swimming in no longer part of his life", yet, he can't explain why. As I watched Riley's childhood imaginary friend, Bing Bong disappear into the rubble of childhood, I saw our swimming pool go with him. I have no doubt in that light bulb moment for my son who knows in some ways he is "different", Ryan understood that when it comes to how he feels, how those emotions wreak havoc in his brain, and how childhood Joy is replaced sometimes by Sadness, Anger, Fear and Disgust, that he is not so different than other kids. 

Like so many moms sitting in the theatre that day, I recognized that I'm not so different than most moms either. We all want our kids to be happy, and we want nothing more than to protect them from sadness. I learned from tiny, Pixar cartoon character emotions, that all kids, have to experience sadness from time to time to help them find joy. I learned that like many kids, Ryan may not be able to express what he is feeling and sometimes that's because of The A Word, and sometimes it's because understanding our emotions, autism or no autism, is just hard.

Of all the Disney moments I have shared with my kids over the past 17 years, last week was the most valuable moment of all. When Ryan's light bulb went on, so did mine. As I watched it all come together for him, it came together for me too. I finally realized that as much as I want to be on the inside trying to understand how he feels, making sure he is happy, what matters most is that he understands, that he gets it, and that he knows it's okay to feel Sadness, Anger, Fear and Disgust when Joy occasionally gets lost. 

Regardless of who is at the controls of Ryan's emotions, he needs to be the one to figure it out on the inside. Even if he can't say it, he is the one who must feel it, understand it and process it. And even though sometimes it kills me to be on the outside, unable to look from the inside out, that is where I need to be, ready to help Ryan embrace whoever is at the controls and do what I can to help him find joy, in his time, in his way....not mine.