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Hope Can't Be Found in a Sticker Box

6/27/2017

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​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.

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Seasonal Kisses

9/19/2014

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My yard (and my pool) are filled with leaves, so, I guess that means the falling star I wished (begged) upon, for just one more month of summer, burned out before my wish reached it. Never trust a hot, firey, ball of gas burning in the atmosphere thousands of miles away, to make your dreams come true.

Along with the leaves, the crisp air and everything pumpkin flavored, tis the season for germs too. We've already had one stomach virus, three colds, a sore throat, and a horrific cough that I immediately assumed was the first east coast case of Enterovirus D68 (My parents actually called to see if I was "aware" of this horrifically contagious virus. Silly parents.) that has been plaguing the mid-west. Thanks to all these nasty little germs, when the seasons change, sadly, so do my kisses. That's when my full smack them on the lips kisses quickly morph into, at best, a kiss on the cheek, or during a serious stomach virus outbreak, perhaps a quick peck on top of the head (as long as no vomit hit the top of their head) or a butterfly kiss to a fairly germ free area, like the elbow.

When kids are little, they love smooching you right on the lips, germs be damned. And it's cute and adorable and you enjoy it (germ spreading and all) because you know it wont' last forever. The kisses, the snuggles, the hugs, will change as quickly as the seasons. They may become fewer, less publicly displayed, given only in exchange for a bribe, or disappear all together. The love that was once behind the kisses may feel like it changes too and I guess in a way it does, but, it does not make the love or the kisses any less real.

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Kisses come in various forms depending on the kisser, the kissee and whether or not flu shots have been administered yet. There is the peck on the cheek kiss, the smooch on the lips kiss, the butterfly kiss, the Eskimo kiss (which is called a kunik and the nose rubbing thing is not done because Eskimos believe their lips will freeze, it's done because typically noses are the only thing exposed in subzero temperatures), and the French kiss (blush). There are kisses reserved for our children, for our parents, for our grandparents, for our friends, and for our lovers. Believe it or not, there is actually a science for studying kisses, it's called Philematology. Imagine if under your yearbook photo you had "Future Philematologist" as your chosen career path. I bet you wouldn't have had any problem finding a prom date, as long as your date's parents didn't see the yearbook.

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I wonder what a philematologist would call a kiss that nearly suffocates you? What kind of hypothesis could a kissing scientist make of a hard to breath because while kissing, the kisser's nose is pushed so hard on the kissee's cheek that air stops circulating to the kisser's lungs, type of kiss? This is not an intentional kiss of death like a mafia mob boss places on his next unsuspecting victim's cheek, signaling an equally unsuspecting "swim in the river", no, this is a kiss to the cheek of a boy who can only tolerate deep pressure smooches to his cheek. Butterfly and Eskimo kisses are not wanted here. I guess that rules out a move to Alaska or Antarctica for Ryan.

I have always been a snuggler. Many days my lips would be chapped form kissing the tops of my babies sweet smelling heads. Each of my kids were smooched and suffocated with my love equally. When Ryan was little, before we heard The A Word, my friend Denial would assure me that my worries of "something being wrong" with Ryan were ridiculous because Ryan loved to be snuggled and smooched. Denial was right, Ryan did love snuggles by someone he trusted, someone he knew, but, it took years for those snuggles to be reciprocated. Years until those sweet chubby arms found my neck, and even longer until those sweet tiny lips found my cheek. I hoped upon hope that one day, my snuggling would be returned, but, while I waited, I kept on kissing, hugging and snuggling. It was so worth the wait.

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For a while, Ryan tolerated my kisses, even smiled after he received one. In time though, as Ryan got older, my smooches would often get rubbed off immediately, and vigorously, even if they weren't "wet" and even if I appeared relatively germ free. Ryan's removal of my kisses did not happen because Ryan was a germaphobe like his mother, it was because my light, gentle kiss on the cheek, or the head, was as bothersome to Ryan as the Mafia's Kiss of Death.

One time, Ryan's Occupational Therapist, Miss M noticed my little smooch to Ryan's cheek that he immediately tried to rub off with the palm of his hand. I hadn't noticed Miss M observing us because by then, I had grown use to this behavior and tried not to take it personally (uh-huh, right). So, I was surprised when Miss M explained that it was the light touch of my kiss that caused Ryan discomfort, so in order to remove the "feeling" of my soft, tickly, feeling kiss, Ryan would apply deep pressure to his cheek to sort of counteract the light touch of my kiss.

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That was when I learned about the positive and calming effects of deep pressure for kids with an ASD. A light touch, like a kiss, for someone with a heightened sensory system, tends to alert the nervous system, putting the fight or flight mode into high gear, but, deep pressure, like a big squeezie tight hug, a squeeze to the arm or shoulder, can have a more calming effect.

There are weighted vests, weighted blankets, weighted shirts for kids and adults with an ASD that offers them the deep pressure their sensory system so desperately craves. Many experts believe that the reason many kids and adults with an ASD love water is because water provides that feeling of deep pressure, the sensory input their nervous system needs to help calm them down or just to make them feel better.

It is this same deep pressure need for Ryan that has caused our kisses to change as quickly as the seasons. The easy, gentle kisses of childhood have been carried away with the summer sun. They have been replaced with kisses that border on a take your breath away, knock you over, strip all the final leaves off the trees, winter time nor'easter. When I go to kiss that teenage cheek, in order to get that deep pressure feeling Ryan's sensory system craves, Ryan pulls the back of my head and firmly pushes my kiss so tightly against his cheek, I am almost knocked over. I laugh and tell Ryan he is going to suffocate me or break my nose, and he eases his grip and starts giggling. Ryan understands that my kisses reaffirm my love for him. Ryan may not need or want that kiss, but, he knows it's something Mommy loves to do. So, although a kiss to the cheek may not be what Ryan needs to understand my love, I am fortunate because Ryan has found a way to tolerate my kisses. I just need to take a deep breath, get my balance, and have an Ear Nose and Throat doctor on standby, before going in for a goodnight kiss.   

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I have always been grateful that for the most part, Ryan has tolerated my snuggles, my hugs, my kisses. For many parents loving a child with an ASD, those light touches are too much for their sensory sensitive child to handle, so many kids pull away from a loving touch quickly, or don't allow it at all. These parents have had to find a different way to show their love and the lack of kisses and hugs don't make a parent's love any less, in fact, I believe it makes their love that much deeper. These moms and dads have put away their wants, their needs for hugs, snuggles and kisses, to give their child what they need, and after all, isn't that what unconditional love is ultimately about? Putting someone else's needs before your own....no matter how much it hurts.

This is why, even though Ryan no longer kisses my cheek ("Your skin tastes gross", and yes, I have tried numerous lotions and they all make my skin "taste gross"), I am grateful for any stolen kiss I can give to him, even if those kisses almost break my nose and lead to a slight loss of oxygen. So, regardless of the change of season, and what germs may be silently lurking in my house, I will happily risk a 48 hour bug for a 10 second deep pressure, possible cervical vertebrae misalignment kiss, to give Ryan and me what we both need to feel happy, calm and loved. 

If the Philematologist I contacted earlier is reading this post, please disregard my call. Like so many things on this autism journey, Ryan and I figured this out on our own.

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Kyle's first kiss....I hope.
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So Worth the Wait

8/15/2014

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We just returned from four days at the beach. The beach....it's great to say the word "beach", type the word "beach" and think of the word "beach" and smile a real, genuine, feel it in your heart, smile. The word "beach" always makes me smile, however, for a few years, my smile went on a brief vacation to Siberia whenever The B Word was mentioned.

My smile didn't head north because I don't love the beach, oh no, I am, and always have been, a beach girl at heart...as long as it's not raining and the water is above 76 degrees and shark free. I have always loved the sand, the sun, and the waves, and believe me, I've got the wrinkles and sun damage from my carefree, SPF free days to prove it. However, once you have kids, days at the beach change. Carting kids and kids' beach essentials make the carefree beach days, not quite so carefree anymore. 

As young, carefree 20 something, I use to laugh at all the crap parents toted to the beach when I happily stepped onto the sand with a chair and a towel. Then I became one of them, sort of, in a way...not really. When you add a dab of autism to the sunscreen, swim diapers, shovels, pails, boogie boards, beach chairs and endless please keep them from whining, bribe them with anything regardless of the sugar content snacks, the once cool ocean breezes can feel as fiery as the gates of Hell.

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When Ryan was little, The B Word, was almost as bad as The F Word. The sun, the sand, the wind, the sticky sunscreen and the shrill, ear piercing sound of the lifeguard's whistle was more than my sensory overloaded boy could take. You would think as a mother I would feel so badly watching my son meltdown as quickly as his overpriced Ice Cream Man popsicle, that I would have scooped him up and taken him back to the safety of his temperature regulated, sand free, ocean breeze free beach house, but, I didn't. Remember how I said I LOVED the beach? Well, come the fiery gates of hell or storm surge high water, this beach girl was determined to make my son love the beach too.

Year after year, as we endured tears and whining, bribes and threats, and after exhausting each and every possible distraction that would not make the sand feel so sandy, the sun feel so sunny, and the wind feel so windy, I would think, "Next year, he will learn to love the beach. Next year". 

Yes, each and every year, as the car was packed up and the beach gear was dragged up from the bowels of the basement, with the remnants of sand and dried tears (both Ryan's and mine) covering the shovels, the pails and the boogie boards, I would silently pray, "Let this year be the year my little man finally gets what all this "down the shore" fuss is about. Amen.".

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For many years, my prayers went unanswered as I sat on my beach chair holding my sand covered boy in my lap as he burrowed his head into my chest and grinded sand into my second and third layer of skin in his attempt to protect himself from all things beachy. 

As I futilely attempted to remove each and every grain of sand from Ryan's stressed out body, I would see those "other mothers" and I can AWEnestly say, I kind of, sort of, really hated them. Those "other mothers" who sat in their beach chairs happily watching their children frolic in the surf and bury their siblings neck deep in the sand. 

Those "other mothers", whom I believed took for granted the perfect beach day. The mothers who stood along the shore, camcorder in hand proudly capturing such beautiful moments so that in their golden years they could reminisce these perfect child rearing memories in the years to come. As I stood by, tears streaking my sand covered face, silently and selfishly hoping a giant sand sinkhole would swallow those "other mothers" and their perfectly recorded memories up. Yep, I hated them.

Ryan oblivious to my tears, because he was literally blinded by his own sunscreen infused tears, would rub his eyes, which of course only made his wails of "burn, burn, burn" grow louder, didn't even know anyone else existed on the beach, let alone his feeling sorry for herself, trying to suck it up, mother. Ryan was too busy trying desperately to survive the onslaught of sensory stimuli, while I shot daggers at mothers I didn't even know and Ryan's big brother Kyle jumped in the waves....alone, hoping one day his little brother would join him. 

Little did I know, that my time, as a mom happily enjoying the beach with all her children, and Kyle's time (having a brother body surf the waves) was coming, we just had to be patient and wait. I hate waiting.

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Being the beach lover that I am, as much as I wanted Ryan to frolic in the ocean like a dolphin and scurry across the sand like a crab, in terms of sea life, my son was more like an oyster than a dolphin or crab. 

Like an oyster, Ryan had a hard to penetrate shell that he used to protect himself from things unfamiliar trying to enter his safe, closed off haven. Over the years, Ryan has slowly allowed unfamiliar and foreign stimuli that are horribly irritating to him, inside his protective shell. And just like an oyster's natural reaction to a foreign substance entering it's shell, is to cover up the irritant to protect itself, Ryan too tried to protect himself by closing up to all things beachy. 

However, just like a pearl takes years and years to develop inside the shell of an oyster, over time, that once irritant that broke through Ryan's shell, has no longer become something to fear, but, something to behold. In an attempt to protect himself from outside stimuli, Ryan was creating something beautiful within the walls of his shell, something that I couldn't see from the outside. The beauty that lied within the shell needed time to grow and develop so that it could turn into something so exquisite and so rare, that was absolutely worth the wait. 

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Finally this year, my oyster revealed the beautiful pearl that had been forming within. Yes, he whined about how long we were on the beach, and yes, the water wasn't his desired temperature, and yes there were too many "annoying people" around, but, this year, I sat on my beach chair like all the "other mothers" and smiled as I watched all my kids enjoying the beach. Unlike those "other mothers" though, I recognized the rareness of the moment and although we captured it with digital media, those moments are forever ingrained in my heart. Moments that were definitely worth the wait. 

Turns out, I wasn't the only mom harvesting oysters on this particular beach trip. Right down the beach was a group of mothers, who, chances are, at one time or another, hated all those happy smiling "other mothers" with their beach loving neurotypical kids like I did.  It just so happened that the same week we were at the beach, so was Surfers Healing http://www.surfershealing.org/, an organization that provides surfing opportunities for kids and adults living with autism. 

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I watched as these kids who fight so hard to keep anything from seeping in between the cracks of their shell, open up just enough to experience something AWEsome. Many kids went into the waves closed up tightly and protecting themselves because they were afraid and unsure, but, they all came out shining beautifully to the applause and cheers of an entire beach. Yes, that day, I watched the shoreline shimmer with beautiful pearls who found pride and joy in the ocean waves while standing up on a surf board. While their parents looked on at the precious and rare gem that outshone any other.

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Ryan may never love the beach like his mother, which will probably decrease the signs of aging and his risk for skin cancer, but, for this beach girl, there was just something different about this beach trip. There was a peacefulness about what is and not so much concern for what could be. Maybe when I finally stopped worrying so much about my little boy's protective shell, I could finally see the pearl that had been forming and growing inside all those years. I just had to sit back and wait. 

And just like a string of cultured pearls that takes a single grain of sand an entire decade to form, only time enables the exquisiteness of such beauty to shine forth and be appreciated in the precise color, shape and size it was destined to be.

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So worth the wait.
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He Loves Me, He Loves Me Not, He LOVES Me!

2/13/2014

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They say that French is the "language of love", due in part to the stereotype of the French as hopeless romantics and in part because people speaking French just sound sexy. If the French are such masters of love, then don't you think it's ironic that it was the French who came up with a game of love that determines if the object of your affection returns your affection based on flower petals and chance? Come on French people, don't you have something a little more romantic or statistically sound than petal plucking? I remember regularly raiding my poor Grandmother's flower beds for daisies as I plucked petal by petal, mumbling "he loves me, he loves me not" while picturing myself as "Jill" and having Shaun Cassidy "walk me home" while singing Da Doo Ron Ron to me. If only love was as easy as plucking daisy petals.

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I remember back in my early Google obsessing days, when I would enter "signs of autism" in the search bar ten times a day, I would typically stumble upon phrases such as "fails to show emotion", "does not reciprocate emotion", "egocentrism", and "fails to show empathy". The name autism itself comes from the Greek word "autos" which means self, which just increased my Googling anxiety. My brain would start on it's obsessive train of thought and it was like a full steam ahead locomotive. Is Ryan only aware of himself? Is Ryan unaware of my love for him? Can't Ryan feel how much I love him? Is Ryan unable to feel happy, or sad, or scared? Does this autism thing mean Ryan doesn't, or can't love me? Why I would go back to this agonizing searching ten times a day is beyond me. I guess I hoped to eventually find a website that negated all this "lack of feeling" fear I had. So, I just kept Google searching, looking for the words, "He loves me".  Little did I know, the proof of Ryan's love was in the hand that I held, the brief kisses that I got and the snuggles that he allowed me to give him. My "proof" was standing right in front of me.

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One of the biggest misconceptions about people living with autism is that they don't feel or express emotions...an almost robotic type personality. People with ASD feel the same emotions you and I do, they just may express or communicate those emotions differently. That difference doesn't mean people with an ASD feel any less heartache, joy, disappointment and love than any neurotypical person. In fact, I believe Ryan feels more than the average person because he is so extremely sensitive, but, how those feelings, those emotions are expressed may look much different than what someone without an ASD has come to expect. 

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Many people with an ASD are also able to understand the emotions of others if those emotions are exhibited in a direct way such as laughter, crying, or yelling. Ryan has a hard time with more subtle emotions that are evidenced through body posture, tone of voice, and facial expressions. Ryan can easily recognize my angry "freaking out" emotion, by my shouty voice, the steam rolling out of my ears, and the spittle flying from my mouth. Ryan also understands that my tears equal sadness which, depending on what my tears are for, may cause him to feel sad too. And sometimes, when I am laughing, Ryan laughs too, then wonders why he is "fake laughing when it feels uncomfortable". Although identifying such extreme emotions comes easily for Ryan, he may not be able to recognize the sarcasm dripping from my voice when he asks for his fourth Oreo and as I once again relent to his poor eating habits respond with, "Why not?". Ryan happily grabs the Oreo and loves me for what he perceives is my lack of concern in him eating yet more trans fat. Ryan also may not recognize if my shoulders slump when I'm feeling dejected by Shaun Cassidy after my petal plucking assured me that Shaun Cassidy, "loves me not". Ryan's struggle with recognizing these emotions is more about a lack of ability than a lack of feeling. 

Ryan's responses to other people's emotions almost has a direct correlation to how connected he is with a person. Ryan certainly understands sadness when he hears a story that is sad, but, if that story doesn't directly effect him, he may not respond in what most of us would believe an "appropriate" way. Perfect example. Last week there was a story that went viral on social media about a father who found out he had terminal cancer. Once this father received his grim diagnosis, he decided to write 856 notes to leave in his young daughter's lunchbox, so she would have a note from him every day until she graduated from high school. As I read the story, I began to cry and was so overcome that I left out a little sob. Ryan immediately came to me, got all up in my face (literally our noses were almost touching) and said, "What's going on here?" obviously concerned that I was upset. I shared the story with Ryan and instead of saying, "Wow, that is sad!" or perhaps getting a little choked up himself, he immediately said, "touching moment, touching moment" in his very best Goldmember voice from Austin Powers. Needless to say my tears were quickly replaced with hysterical laughter. Ryan knew the story was indeed a "touching moment, touching moment", and I'm sure in his mind he thought how sad it would be if his father was sick and dying, but, the story wasn't about Ryan or his dad or anyone that Ryan personally knew, so the story had very little emotional impact on him.

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In the book, "Look Me in the Eye" by John Elder Robison, there is a section in the book when Mr. Robison discusses the perceived lack of empathy and emotions of people with an ASD. He tells of a time when he overheard his mother and her friend discussing a child who had recently been struck and killed by a train. Mr. Robison explained that upon hearing this news, he felt relieved that it wasn't him or his brother who had been killed by the train, so, he smiled. Since Mr. Robison was unable to communicate his thoughts and feelings, his mother and her friend just saw him smile and thought he was a psychopath for grinning about a child's accidental death. In his mind, Mr. Robison didn't know this child, so he did not feel terribly sad. Mr. Robison explained that when he was younger, he often felt people who cried about stories that involved strangers, were being fake, because why would you cry about someone you don't know? Just like Ryan's "touching moment", Ryan didn't know this dying man who was writing notes to his little girl, so although Ryan "got it", although Ryan "felt it", how he communicated it was not what most would expect as a typical or "appropriate" response. For Ryan, and many kids like him, it's all about the connection. When we lost a beautiful dear friend of ours, at the incomprehensible, inexplicable age of 8, through his hiccuppy sobs Ryan said, "But, she barely lived". Four powerful words that my boy communicated, that my boy understood, that my boy felt to the deepest part of his soul for people he knew, for people he loved, for people with whom he had a connection.

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Yes, Ryan "feels". He feels anger, sadness, betrayal, disappointment, anxiousness, joy, love, and jealousy. Ryan also recognizes these emotions and he cares about those feelings in the people he loves, the people he trusts, and the people who love him. Ryan's feelings are not impaired, diluted, or inappropriate, but, sometimes, how Ryan communicates his feelings do not fit into what most of society believes is "acceptable" or "appropriate". I wonder who ever made up the rules of just how a person is suppose to communicate their feelings...not your feelings, not your grandma's feelings, their own individual, unique feelings. 

It was once suggested to me that perhaps Ryan would do better communicating his feelings to a therapist who specializes in working with kids with an ASD. I'm not saying that it isn't a good idea, for sometime down the road, but, for right now, here is EXACTLY how I'd imagine Ryan doing in a stereotypical therapist setting:

Therapist: "So Ryan, would you like to lay down on the couch and relax while we talk?"
Ryan: (in a disparaging, how could you be so stupid and still be a doctor voice) "Why 
          would I do that? It's 4:00 in the afternoon and I don't lay down until 10:00
          at night in my bed, at my house, with my Angry Birds blanket and my pillow!"
Therapist: "Ok, fine, then why don't you tell me how you feel Ryan?"
Ryan: "Well I feel scratchy from these jeans my mom made me wear today and I feel 
          blind from the sun coming in your window and I feel dry from the heat in this 
          office.
Therapist: "Well, how do you feel on the inside Ryan?"
Ryan: "Well, right now I have a cold so I feel kind of juicy (yes, this is a word for 
           snotty) and my guts feel kind of gassy."

This conversation would be followed by the sound of my money flying out the therapists window. 

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Ryan has feelings and he understands feelings, he just sometimes struggles with the language of feelings. I have always been so blessed because Ryan is very affectionate with me...he hugs, he kisses and yes, he tells me "I love you so much Mommy". Some kids with an ASD have a much harder time expressing their feelings and allowing hugs, kisses and cuddles. This does not mean they don't feel love and they don't know love....they just struggle communicating that love in a way a neurotypical person, would prefer, but, for a child with an ASD, the way they love, the way they express emotion, feels perfectly "normal" to them. There are occasions where I am almost knocked to the ground with one of Ryan's hugs and there are times when my arms are quickly brushed away, perhaps at a time when his overloaded system is feeling too juicy, too scratchy or too gassy. For Ryan, some days, "He loves me", some days, "He loves me not" (yesterday when I forgot him at school, it was clearly a "not" day which is another blog post entirely). 

Please don't ever think that people with an ASD don't feel like you do, because they do. They may not say it, they may not show it, but they FEEL it, so don't ever, ever sell them short. John Elder Robison said, "Autism is a COMMUNICATION disorder, not a "lack of feeling" disorder". Ryan's language of love may vary from mine and yours and chances are, he will not be the next French Casanova, but, I promise you, that even Ryan could have told the French that petal plucking is an "utterly ridiculous" way to determine if someone loves you. Although, Ryan could look at a flower and in an instant determine the number of petals and whether I should start with "He loves me" or "He loves me not" to get my desired answer about his love for me, Ryan would probably skip all that nonsense and in his best Austin Powers voice tell me, "Yeah baby". Yep, he loves me.

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How could anyone doubt the love in that smile?
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Clothes Make the Man?

1/30/2014

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So, I had to run to Target (again) this weekend, which was probably my third trip there this week. I swear, I feel like Norm from Cheers when I walk in to the place where everybody knows my name. The employees all greet me with a "What could she possibly need now?" smile and treat me like Norm, minus the beer. Suffice it to say, I'm a frequent Target shopper, so a Sunday morning trip to the store that has everything, was not really a big deal, except, Ryan wanted to go with me...on a Sunday....the day that comes after Saturday and since Saturdays are Ryan's "day off", I was torn with what to do. When some folks take a day off, they may spend it doing chores around the house, or sitting poolside with friends, or perhaps taking a little holiday with family, not Ryan. Ryan's idea of a "day off" each and every Saturday is no homework, no reading, no piano practice, no changing clothes, no brushing hair and unfortunately, no shower. This use to be no big deal, until puberty hit and with the rush of hormones, came the rush of greasy hair, oily skin and the stench of teenage boy. This stench tends to linger when said boy wears the same clothes for 36 hours. The weekends are a bit sketchy around here especially if a Target trip is planned following the "day off". 

I know what you are thinking, if Ryan wants to go to Target on a Sunday then he needs to shower and change his clothes before I take him out in public right? Wrong. Showering Sunday morning or afternoon prior to a trip to Target, which ironically was for soap and laundry detergent, would not hold off the boy stench until Monday after school and asking Ryan to shower and change his clothes Sunday morning and Sunday night....twice in one day is AWEnestly the funniest thing I have ever heard. Ever. I promise you, Ryan will never be a believer in the old adage "clothes make the man".

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Mark Twain is the chap we owe the "Clothes make the man" quote, but, did you know the entire quote is, "Clothes make the man. Naked people have little to no influence on society."? Ha! That's the second funniest thing I have ever heard. Poor Mark would have to revamp the second half of his quote if he spent ten minutes in front of a television or computer screen and saw our nearly naked influential society now. Good ole Mark Twain, whose real name was Samuel Langhorne Clemens (you're welcome), believed that people will judge you based on the way you dress, and I'm afraid that part of his 100 plus year belief still holds true today. I'm sure my Target employee friends were judging Ryan's rumpled clothes and uncombed hair on Sunday, but, I bet they were grateful for worn out fleece pants versus no pants at all.

Time for some naked AWEnesty my friends. Prior to having a child with an ASD, a so called, "special needs child" (Isn't every child's needs "special"?), when I would see kids with different abilities looking disheveled with unkempt hair, clothes that didn't match, weren't in season, or in style, or in the proper size, I would think to myself, "Even though their child may have special needs, why in the world do the parents dress them like they do?". Clueless, who stood right next to me, with her impeccably dressed kids, agreed wholeheartedly. Oh how naive and ignorant I was then, succumbing to Mark Twain's belief that clothes, do indeed, make the man.

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It's difficult enough when you have a neurotypical child and you want to dress them just "so", and your idea of "so" and their idea of "so" is not even close. Well, throw in a dash of autism, and it kind of makes you want to resurrect Mark Twain so you can kick him in the head. I'm betting Mark Twain never had to dress a child with an ASD, so he didn't have to take into account the way clothes feel, sound or even smell (yes, smell). Many kids with an ASD are so sensitive to how things feel that they would prefer an old cotton pajama top, worn 24/7, that is so small it cuts off the circulation at their armpits, rather than wear a fits just right, hasn't been washed 85 times, new shirt. Face it, if you didn't worry about people like Mark Twain judging you, you'd wear your cozy fleece jammies to the the office, to the grocery store, and to the symphony. Fleece jammies are much more comfortable than a stiff, pressed shirt, wedgie inducing tights, or a scratchy wool sweater, but, many of us believe Mark Twain, so we save our comfy clothes for curling up on the couch at home alone...where no one will see us or judge us.

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Cleanliness helps make the man too, and any mother of a pre-teen or teenage boy will tell you, showers don't rank very high on the "Things I Need To Do Today" chart. For a kid who feels the water is too "stingy", the shampoo too "flowery" and the towel too "scratchy", showers rank even lower on the chart, thus the creation of Shower Free, Day Off, Saturday. Ever since Ryan was little, he hated rubbing a towel over his skin to dry off. There were moans, groans, and accusations of me tearing his skin off while just trying to keep him from dripping all over the place. Heaven help me, and my hearing, if I accidentally scraped his skin with the tag on the towel. It's truly a miracle this boy was ever clean. Just like many things that Ryan has struggled with, he found his own way to cope with the horror of towel drying after a shower....he air drys. Yep, he lays on the floor in a heap with a towel draped over him waiting for his skin to be dry enough to throw on shorts that are too small and a soft fleece Mario blanket that he wears like a shawl. Mark Twain would most certainly tsk, tsk, tsk over such an ensemble. This new found drying method certainly increases shower time two fold, but, the boy is clean, the boy is dressed (sort of), and the boy is happy.

With Ryan's reluctance to have anything touch his head, using a hair dryer to dry his hair is not his preference. This means, most nights, Ryan goes to bed with a wet head, so you can only imagine what his hair looks like upon wakening. Although I try to "fix it" by wrapping a completely dry, take it right out of the drawer, dish towel around his shoulders, then wetting one of two hairbrushes that are acceptable for his delicate head, and pushing gently (never, ever pulling) down on the numerous horns that have sprouted on his head while he was sleeping, to the reprimands of "you are soaking me" and "stop ripping my hair out of my skull". Regardless of my efforts, most days, Ryan still runs to the bus with unruly, dripping wet hair. I worry about how it looks for a second, but, as he runs across the street in a coat two sizes too small and yells, "I love you so much Mommy", the worry quickly fades away. While I watch the bus pull away, I can still see the horns sticking up on Ryan's head and his wrists sticking out of his coat sleeves, as he happily waves goodbye, and I am reminded of that mother I use to be. The mother who once believed that clothes make the man.  I smile gratefully as I wave goodbye to my son. Grateful that it took a sensitive little boy to prove how wrong Mark Twain and I both were.
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So trust me, when you see a child with a different ability looking a little unkempt, with uncombed hair and clothes that have seen better days, the mother knows and the mother cares. She knows what people are thinking because chances are, she once thought it herself, once when she was a Mark Twain believer. Now, the mother sees past the hair, past the clothes, and past the juice mustache because the mother has seen the progress where once she was told would be none, she has seen the obstacles that were so difficult to overcome, she has seen the achievements that even she once doubted would ever occur. This mother, that holds the hand and the heart of this less than tidy child, and who sees past appearances, knows something Mark Twain did not. Clothes may make the man, but, judging someone by what they wear and how they look, will keep you from discovering the beautiful soul who lies beneath those clothes, regardless if those clothes are clean, dirty, old or new.  

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Now that Ryan is older, he is beginning to care more about his appearance....if his hair is sticking up, if he has a grape juice mustache and if his clothes feel and fit right...just not on Saturdays, or Sundays for that matter. Ryan understands that there are "make the man" school clothes and comfy home clothes.  The school clothes are removed as soon as Ryan's backpack hits the foyer floor and he races to his bedroom to put on his too small, comfy clothes and quickly discards his clothes that make the man into his hamper. Ryan has brand new soft Hollister sweatpants that may make the man, but, he still prefers his one size too small, grey fleece pants that make the boy, the boy who cares little about others' judgement and more about the grade and comfort of the cotton in his clothes. Mark Twain may not have approved of Ryan's Target appearance last weekend, but for those who don't know what goes on behind the clothes, for those who don't know who it is that lies behind the clothes, it's easy to judge based on a disheveled appearance alone. Especially if the person passing judgement doesn't know that each and every Saturday is a very deserving, very necessary, and sometimes very stinky, day off.

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This blue striped shirt was not a special Easter Egg decorating shirt, it was THE chosen shirt that was worn three times a week, way past its prime.
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Walk the Walk

1/24/2014

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We all know that one year equals 365 days. This is because in the system of solar calendars, the length of day is determined by the approximate amount of time it takes Earth to rotate once on its axis (about 24 hours). The length of a year is measured by the time it takes Earth to rotate around the sun (365 days, 5 hours, 48 minutes and 46 seconds). I'm sure you all knew that at some point in time. This information, which, basically, gives you the answer to your exasperated question of why there aren't more hours in the day, can be found somewhere in the deep, dark recesses of your mind where algebraic equations and elements from the Periodic Table still linger. You may not be able to regurgitate this information so fluidly, because AWEnestly, it doesn't really matter why the days aren't long enough, you begrudgingly accept that it is....what it is. Now, Ryan, he has this info at the forefront of his mind. He doesn't have to dig as deep as the rest of us and for a mother who has very few firing brain cells left, I am so grateful for Ryan's AWEsome brain.

I bet, just like me, off the top of your head, you didn't know that 365 days in a year equals 8,760 hours in a year which equals 525,600 minutes in a year which equals 31,556,926 seconds in a year. And of those 8,760 hours in a year, approximately 2,920 of those hours we humans spend snoozing away. That leaves about 5,840 hours spent awake. And in the past 5,840 hours, this mom, this blogger, this AWEtism advocate has been working very, very hard to walk the walk, since I spent 525,600 minutes talking the talk (I talk in my sleep, just ask Dan).

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You know the old saying, "If you're gonna talk the talk, you better walk, the walk", a sort of "practice what you preach" ideology. If you are gonna run your mouth, then you better back up whatever it is you are spouting. I swear, I can actually remember spouting the old "walk the walk" idiom as a senior in high school, to some lowly freshman. This freshman was talking smack about me and some of my friends, so, having to follow high school protocol, I needed to confront this meager freshman about her inability to conform to the well known high school hierarchy. Suffice it to say, this freshman decided to talk the talk and walk the walk and a good old fashion girl fight ensued. Yep, this not afraid of a bunch of senior high school girls freshman, decided to back up her talk with a few punches which resulted in both of us being suspended from school for three days, and a new nickname for little, scrappy, old me..."Rocky" (my friends weren't very creative). However, I don't recall my Rocky namesake having to shamefully hobble down the hallway to retrieve his red ballet flat that went sailing through the air during the scuffle after one of his fights. Yep, if you are going to talk the talk, then you damn well better back that talk up by having your brain, your heart, and your feet, do just what your mouth, or in my case, my typing fingers, said you would do. I have been officially talking the talk, or should I say, blogging the blog, for exactly 365 days today.

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This is my 68th blog post since I first introduced The AWEnesty of Autism blog, 365 days ago. Wow, that's a lot of talk. With all this talk, I have been given a gift and a challenge. The gift comes in the form of you, my readers. With your AWEsome support and your willingness to learn, understand and accept, "different, not less", you inspire me to keep blogging, keep advocating and keep educating. Your compassion to share The AWEnesty of Autism with others who either "get it" or don't, has lead to greater awareness as well as numerous opportunities to share my belief of "different, not less" in my attempt to raise even more awareness and to share my Ryan...my joy....my heart as he continues to put the AWE in AWEtism.

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The challenge of all this talk, has been for me to "walk the walk" and not just provide you all with lip service and story telling. I promised to be AWEnest and part of that AWEnesty comes in the form of practicing what I preach. Putting my feelings to words and knowing people are reading those words has made me become a better advocate, teacher, and most importantly, a better mother. I owe that to all of you.

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When I talk the talk and tell you that this somewhat unstable (oh, the truth in those words) volcano continues to work hard at becoming dormant, I try to walk the walk by not blowing my top over something as little as a forgotten homework assignment. When Ryan says he needs ideas for a writing assignment, and my examples aren't exactly what Ryan is looking for, and, two hours later not a mark is made on his paper, I find myself counting to ten....like I told you I would, instead of going up in flames. Your comments, your support, your Facebook Likes, ring loudly in my almost ready to blow volcanic ears. It's like Big Brother is watching and I don't want to get caught being this phony...this fake blogger who is just blowing smoke (pun intended). I'm trying to walk the walk, for Ryan, for me, and for you.

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When I talk the talk and tell you I am absolutely, without question, done with Denial and Clueless and then those two persistent wenches come knocking on my door, I try to remember my words, I try to practice what I preach and slam the door in both their faces. Some days, I admit, it's easier said than done...easier to talk the talk than to walk the walk. When Ryan tells me his lack of friends doesn't make him sad, Denial still tries to convince me that a life without friends is no life at all. Valuing friends in my life, as much as I value air in my lungs, makes Denial's words feel like a knife shoved deep in my saddened heart. In those moments, when my friendless son's words break my heart, my own words that I spouted to you ring in my head. The talk I used to convince you that the F Word, the Friend Word, is only a vulgar word when Denial whispers it in my ear. So, I walk the walk, by saying that F word (sadly, not the other one) less frequently as this word friend, that is as important as air to me, feels very different in Ryan's lungs.

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When I talk the talk about "different, not less", and encourage you to accept this by stepping outside your box and trying to understand and connect with "different", I walk the walk by going out of my way to also see "different" as just different, regardless of the extreme variances of what "different" means. This may come in the form of a sympathetic smile to a harried mother trying to hold it together while her "different" child has a full blown meltdown in the middle of Toys r Us. I have also walked the walk by attempting to connect more frequently with kids who may seem "different" by engaging with them, talking with them, and "seeing" them. I recognize that in my attempt, I may be ignored, rebuffed, or yelled at, but, by trying to connect, in that moment, that kid may no longer feel invisible.

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When I talk the talk about Ryan's differences, being just that, differences...nothing less....nothing bad, and how these differences may seem odd or weird to most, I try to walk the walk by not cringing when Ryan makes goofy facial grimaces and odd noises the minute he walks through the door after school. After all, how can I expect you not to think, "Whoa, what the heck is that about?!" if I'm thinking the exact same thing? So, I walk the walk by reminding myself that Ryan keeps those noises and faces at bay most of the day while at school, so when he is home, where he is safe, he should have at it. Your support, your acceptance, your cheerleading, has helped me walk the walk by planting a big, wet kiss on Ryan's cheek in between facial grimaces without so much as the slightest cringe (by me, that is, Ryan quickly cringes and wipes the wet kiss off).

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When I talk the talk and tell you I will be AWEnest and share my real, raw thoughts and feelings, I have to walk the walk by being AWEnest with myself too. On days where I tell myself that I'm going to be more patient, more understanding, but, Ryan's overloaded sensory system and my overloaded hormones shoot that plan all to he**, I walk the walk by practicing what I preach to all of you and remind myself that all parents, whether or not they are loving a child with an ASD, have days where they need a time out (and a big, big glass of wine). And just like we forgive our children when they make mistakes, and just like I tell you to forgive yourselves when you are less than perfect, I have to walk the walk by forgiving myself too, and eventually letting myself out of time out (and putting down the wine bottle, I mean, wine glass). Your appreciation and encouragement of my AWEnesty, the good, the bad, the ugly, has allowed me to be more AWEnest with myself.

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I am so grateful for these past 365 days...these past 8,760 hours. The AWEnesty of Autism has gone beyond my wildest dreams and I owe that to all of you, so please accept my sincere gratitude. I have been deeply humbled by your comments, your encouragement and your kind words of support. Whether you are loving a child with AWEtism and feel like I am sharing "our story", or if you have been reading the blog just to try and understand, "different, not less", or if you are a family member or a friend and feel like you have to read each post in case I ask you about it and you struggle with faking it, I thank you. YOU have made a difference. Although I have tried to raise AWEtism Awareness over these past 8,760 hours, (well, technically, it's more like 5,840...I love sleeping) ironically, I have become more aware. More aware of my own faults, more aware of my own actions, more aware of my own "talk", more aware of my own "walk", which has inevitably lead me to become more aware of my own beautiful, AWEsome son. How can we ever thank you enough?

Some days, walking the walk is tough, and I stumble and stagger to the point I look like I'm hitting the wine bottle again, but, if I'm going to talk the talk, then I need to walk the walk, regardless of how difficult it may be. So thank you for reading my talk, for encouraging me to keep talking and keep walking. Thank you for your support, your loyalty and your compassion. I hope that these next 365 days lead to more awareness for my readers and for me. I hope we all continue to watch Ryan grow and thrive and celebrate his accomplishments and pick him up and encourage him when he falls. Ryan is just one boy, 1 out of 54 boys and 1 out of 252 girls, whose story is being told. Thank you for taking the time to get to know him and kids like him. 

One year ago, I asked Ryan's permission to start The AWEnesty of Autism and although, he gave his permission, Ryan was disappointed to know the blog would not make him "rich" or "famous". Even though Ryan may not find his fame and fortune through The AWEnesty of Autism, I hope that Ryan recognizes that although he has been a silent partner and not shared any "talk", the "walk" he is walking is more AWE-inspiring, more AWEnest and more AWEsome than this blogger could ever put into words. When words fail, actions can prevail and according to Ryan's brain (which I never doubt in the areas of math, science and music), I only have 8,760 hours until the Earth makes another full rotation around the sun and we are smack dab in the middle of January 24th, 2015. We still have a long way to go friends, and with your continued support, I will keep walking the walk, so even more folks understand, accept and believe the talk of "different, not less".

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I am hoping Ryan enjoys The AWEnesty of Autism's first birthday more than he did his own first birthday....as long as there is white cake with white icing and no one makes him where some stupid pointy hat with a pinchy rubber band to hold it in place.
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The Invisible Man

1/15/2014

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Have you ever had one of those days where you just wish you were invisible? A day where everyone and everything is coming at you all at once and the idea of "disappearing" so no one can nag, whine and demand your undivided attention is so appealing, that you long for the "unexplained accident" in the lab that occurs in almost every Invisible Man story. It's funny, it's always an Invisible Man. A television network made a pilot for an Invisible Woman show a few years back, but, audiences failed to relate, not because women don't belong in science labs, but, because we all know households would shut down if Mom really became invisible. In almost every Invisible Man story ever told, the Invisible Man is portrayed as a villain who uses his invisibility power for evil. Whether it was H.G. Wells Invisible Man in 1897, or Batman's nemesis in DC Comics in 2006, or even Jerry, the Invisible Man (ok, fine, the Invisible MOUSE) in a 1947 Tom and Jerry episode, the desire to wreak havoc while invisible is a temptation just too hard to resist. I promise that if someone has an Invisibility Serum, I will not turn to a life of crime. I just want to curl up with my iPad and a bag (the big 2lb bag...don't judge) of M&M's to watch a few episode of Downton Abbey or Girls without hearing, "Mom, I need you." for just a couple hours. Assuming of course the iPad and bag of M&M's could disappear too, otherwise, what's the point?

The one thing most of the Invisible Man stories have in common is that they are always searching for the antidote in order to be seen again. Maybe being invisible, even though you can finally have the upper hand on that tomcat that has tortured you for years, isn't all it's cracked up to be. Even though most of these men felt "invisible" before they swallowed the invisibility serum, surrounded by those who did not "see" them, maybe being permanently invisible felt too strange. I wonder what made them want to "disappear" permanently in the first place? Was it out of frustration due to the numerous occasions when they were still visible, but nobody could see them? Did having people constantly talking about them or around them, as if they were invisible, lead to such aggravation that they felt the need to seek revenge ? Did this frustration lead the various Invisible Men to want to mix up a few chemicals in the lab so they could disappear for good? Although Ryan would never dream of leading a life of crime nor would he just gulp down some serum made in a science lab (unless of course it tasted like root beer), I often wonder if Ryan feels invisible because sadly, some people don't "see" him. As my little Invisible Man, I worry whether or not he longs for the antidote to be seen, or if he prefers to remain hidden in the shadows. 
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Just last week I witnessed a moment where clearly it appeared my son was invisible. It was at the dentist office. When you have a child with an ASD, who is not a fan of the dentist, I'm sure there is a big red flag in the file with the letters A-S-D written on it, warning any newcomer of said child's unease (all my doctors have red flags in my file with the letters C-R-A-Z-Y written on it). The lovely hygienist, whom I had never seen before, came up to me, with Ryan sitting in the chair only inches away, and whispered, "Ryan's regular dentist is on vacation today, but, Dr. So and So can see him. I understand with Ryan's, umm, uhh, (she couldn't say The A Word) difficulties, he may not want to have his exam today." My Invisible Man, who really isn't invisible....or deaf....or stupid, squirmed in his seat next to me, since he understood precisely what this somewhat clueless hygienist said. Of course, Ryan was not comfortable with Dr. So and So performing his tortuous dental exam, but, I'm sure Ryan was not comfortable being talked about as if he were invisible either. I know this hygienist thought she was doing the right thing, in the right way, which is why I didn't go nutsy on her, I simply said, "Why don't you ask him?" through a very phony, teeth gritted smile. She did, and my Invisible Man said, "Yeah, I guess that's fine as long as this new guy doesn't touch my final remaining baby tooth which is very loose." Ryan was told by his "regular" dentist that said baby tooth needed to be out by July and since the snaggle tooth was still dangling inside his mouth (he hates wiggling and brushing if for that matter....gross, I know) I believe that was why Ryan was so agreeable to see Dr. So and So.

I understand that this hygienist did not know my son so she didn't understand the degree of "difficulty" he may have had with a change in his dental appointment routine, but, Ryan is not a toddler, he is a 12 year old boy, and I'd like to think she could have given him the benefit of the doubt by "seeing" Ryan and talking to him. At the very least, the hygienist could have called me to the front desk and had this discussion without behaving like Ryan was invisible. I have seen this happen more times than I care to count. On field trips, at class parties, at friends parties and even at family gatherings. Just because Ryan may remain quiet and doesn't go out of his way to communicate with people he is unfamiliar with, doesn't mean that he is invisible. Ryan is very visible for those who take the time to "see" him.
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I can recall a time when Ryan's invisibility shocked me. Like most schools, each classroom is assigned a room parent. One year, my girlfriend knew Ryan's room parent and so she asked the room parent about Ryan. This room parent, who went into Ryan's classroom with regularity had no idea who my son was. I AWEnestly, don't know why I was so surprised. I know that Ryan struggles socially, but, I guess I thought at least a parent would try to interact with him, or at least know his name. Ryan seems to just blend into the background, either making himself invisible or camouflaging himself with his surroundings in order to avoid any kind of social mishap. Sometimes by his choice, and sometimes, by other's choice. It's true that in many ways, Ryan may have the antidote to his invisibility in his back pocket, but, maybe he refuses to use it or maybe he doesn't quite understand how to use it. When Tom discovered that Jerry was invisible in The Invisible Mouse episode, Tom got creative and threw some flour on the floor in order to see Jerry's footprints...in order to "see" him. Sometime, you have to be creative, just like Tom, and look outside the box to see Ryan.

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Believe it or not, "the box" isn't that big. It doesn't take a lot of creativity to find the invisibility antidote. Just as I have witnessed those who can't or won't see my son, I have witnessed those who can and do. The mom who decided to stop at the car where Ryan was playing his DS and asked him to join her at the creek to throw stones, while others passed him by, or the kind soul who ran out of her car and jumped on pedal cars trying to catch Ryan in order to "see" and hear his joy. The math teacher who found the antidote in a math equation or the science teacher who found the antidote in plate tectonics. The music teacher who found the antidote in a musical piece that lead him to be able to both see and hear Ryan. You "see", the antidote for my Invisible Man is simple....try. Try and see him by finding his joy, try and see him by taking time to know him, try and see him by stopping and not walking past him, try and see him by viewing the world through his lenses, try and see him by just recognizing that he is THERE. I promise that all it takes to keep Ryan, and kids like him from disappearing is for people to just try and see them.

I watched a video once http://youtu.be/xMBzJleeOno of a severely autistic girl who had never spoken before, who had given very little indication that she could comprehend what people were saying until one day, she begin "speaking" through her words typed on a computer. During the video, the father admitted to being amazed at such a discovery, but, also horrified for all the things he and others said in front of his daughter who appeared invisible and who, in so many ways, didn't seem to be "there". This girl would explain that her body felt trapped by autism. She could see, hear and understand most of what went on around her and it took a computer as her antidote to finally make her visible. These kids are all "there", they are not invisible and treating them as if they are, well, that just makes us the villains. The villains who are withholding the antidote.

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Ryan has told his speech teacher, Mrs. P, who by the way always "sees" him, that he is uncomfortable being too "visible", but, with the right support and encouragement from those around him, maybe one day he will take a swig from the invisibility antidote. Maybe once Ryan "sees" that others can and do see him, he will step out of the shadows. Chances are Ryan won't be so visible that he gets kicked out of a college bar for dancing on top of the bar (I've heard that sometimes happens to people), but maybe in time, Ryan will find his own antidote, his own way of stepping out of the shadows so more people can see him. In the meantime, I may need to start carrying flour in my purse so folks unaware, misinformed and stuck in their own box, can see my son through his footprints, through his beautiful eyes, through his unending smile and through his pure heart. Throw down a little flour folks, you never know what or who may be visible, right before your eyes.

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Ryan has many people in his life that do see him, like his brother and sister, but like most siblings, there are times he wishes they couldn't see him or his candy.
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The Magic of Disney....From Inside the Restrooms

1/8/2014

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As I rubbed the sleep from my eyes and slowly stumbled down the stairs to get everyone ready for their first full week back to school following the long holiday break, I switched on The Today Show. There sat Natalie Morales with her perfect hair, perfect makeup and perfect haute couture telling viewers how this is reportedly the most depressing day of the year. I didn't need pretty, perky Natalie to tell me that, I was very aware. The holidays, which I love, had been packed up and stashed away in the basement the night before, the kids were heading back to school, Dan was returning to the office after a week at home, and the dreaded three long, ugly months of winter are now upon us. Blah.

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There are some shameless people who love the cold, the snow, and the dark days of winter. I am not one of them. In fact, as a tried and true sufferer of Seasonal Affective Disorder (SAD is the acronym...how poetic), I can totally relate to bears and their need to fatten up in the summer when the sun is bright, picnics are in full swing, and coolers are iced up with everyone's favorite summer time beverages. Then, when it gets cold, dark and depressing, bears go and sleep off that summetime buzz and extra weight all winter long and awake to the beauty of spring time. Clearly, I should have been a bear. Regardless of my winter blues, and moody moments, I think my children and husband would still miss me if I just quietly slipped away and slept for three months, so I have tried to find other ways to cope.

One winter, after crying my winter blues to my doctor, he decided to put me on a low dose antidepressant to help me cope with all things winter. Well, that lasted about
three weeks because the nausea side effects made me go from blue to green. Uh,
no thank you. Sorry kids, sad, grumpy mommy, beats nauseous, pukey mommy. So,
back to the SAD coping drawing board. The next effort was more effective and has
continued for several winters without making me want to puke. I have discovered that losing myself in a world of fiction, fantasy and make believe keeps my winter blues a little less navy blue and a little more aqua blue. An occasional break from reality is healthy, right?
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Last winter, I found myself talking with a British accent when I served my children breakfast, and frequently referred to Emma as "my lady" while I lost myself in all three seasons of Downton Abbey (clearly I would have been living downstairs with the help where it appeared to be much more fun) during the month of January. With the long months of February and March still ahead of me, I found myself checking out our back window for the White Walkers to come busting out of the woods as I quickly turned from 1920's England to the Medieval era of Games of Thrones. The glow of my iPad could be seen from the street as I lay in bed watching episode after episode until 2 AM. The year before that it was the Fifty Shades of Grey books....Dan didn't mind that distracting coping mechanism. This year, it has been Orange is the New Black (which has convinced me more than ever to stay on the right side of the law) and Breaking Bad (which has convinced me to wear a gas mask every time I set foot in an unidentified RV). And just when I think I'm coping well for this first week of January, on this most depressing day of the year, I look on the kitchen table and smiling up at me is that happy, freaking mouse trying to convince me that the best way to beat the winter blues is to visit him. Suddenly, Walter White and Crazy Eyes no longer seemed so therapeutic. I longed for that happy mouse and that silly dog (He is a dog, right? If he isn't a dog, then what is he?) named Goofy to beat the winter blues.

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Our family has done the Disney thing twice...in 2008 and 2010 and I loved every single second of it (at least this is how I choose to remember it). On that first trip, two members of the family had to be dragged to Disney World kicking and screaming. You guessed it, Ryan ("I've never been there before.") and Dan ("Every ounce of my being doesn't want to go there."), but, they both not only survived Disney twice, they loved it...in their own way (at least this is how I choose to remember it). Ryan feared "new", Dan feared crowds and $6.00 sodas, and well, I feared how we would get there (planes are much too dangerous). We...ok, I, chose the Amtrak Auto Train, which AWEnestly, may have been Ryan's favorite part of our Disney vacation. I'm so glad that my ridiculous fear of dying in a fiery plane crash could provide Ryan with a memorable train ride.

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There are numerous websites and books on how to survive a Disney World Vacation and there are entire chapters devoted to helping a child with an Autism Spectrum Disorder make the most out of this survival. After all, Disney World is the pinnacle of over-stimulating good times. Everything is "magical" and nothing is "typical". A recipe for disaster for a child with an ASD. We received our fair share of doomsday warnings. Our pediatrician kind of chuckled, in a slightly evil way, as he suggested he write a note with Ryan's diagnosis in order to avoid waiting in the overcrowded, loud, long queue area with all the masses. A therapist warned us that our first trip would basically result in sensory meltdowns, over-stimulated tantrums and a great deal of autismy behavior. We were even told by one specialist to think of our first trip to Disney World "as a planning trip for the next time we go back." Seriously? Thousands of dollars spent on an experimental Disney trip? I started to feel more like Dan and Ryan, but, we packed our bags and off we went....with a cloud of doom over our heads.

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With such a doomsday prophecy, I did everything I could to prepare Ryan. We watched videos on Disney World, we checked out all the rides and activities repeatedly on the Disney website and I made a detailed schedule for each and every day which gave him some sense of control. In each and every park, I tried to convince Ryan which rides he would enjoy. Most of the time, Ryan trusted me and with a little trepidation, he would board the ride with the rest of us. You could see the anxiousness coupled with excitement in his face, and at the end of the ride, he would announce whether or not that ride deserved a second go around. I knew that Splash Mountain, The Tower of Terror and Expedition Everest were out of the question, but, I did convince him to try It's a Bugs Life (we lasted 3 minutes on the first trip and sat through the entire thing on our second trip) and although he enjoyed seeing the animals on the Klimanjaro Safari, he got a little freaked out by the gunshots of the imaginary poachers.  Without a doubt, the wave pool at Typhoon Lagoon, with it's deep pressure waves and calming waters, made both trips to Disney World memorable for Ryan.

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With Ryan's horrific fear of Santa, I figured the characters at Disney World would scare him too. As seen here, I was proven wrong. Ryan gave hugs, high fives, posed for pictures and even got autographs (until he decided autographs were stupid). My anxious little boy, who hid in the bathroom every 4th of July, even survived, and I'm going to go out on a limb here and say, even enjoyed, his first ever fireworks show. Ryan's ears were covered, he was obviously a bit anxious, but, he watched every single explosion light up the night sky....with a smile on his face. Disney really is a magical place.

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Ryan found various ways to cope in Disney World. Lots of ice cream, popsicles and stops at Goofy Candy Shops helped, as did having his iPod Touch charged and at the ready for times when waiting tended to diminish the magic. Checking out Mom's hard core daily schedule also gave him a little peace of mind knowing what was coming next, but without a doubt, the funniest coping mechanism Ryan discovered was Disney's Public Restrooms. I'm not exaggerating when I tell you if that boy saw a restroom sign, magically, he had "to go". With thousands of people entering Disney Parks on any given day, there are a lot of restrooms and lots of very obvious signs pointing out exactly where to find said restrooms.

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Of course, this stopping "to go" became a bit frustrating as potty breaks every ten minutes were not built into my itinerary, but, potty breaks sure beat meltdowns. By the end of the week, being the fabulous parents that we are, Dan and I considered capturing a photo of Ryan heading toward potty stop #275, since next to the wave pool at Typhoon Lagoon, Disney's Restrooms appeared to be the highlight of Ryan's trip, but we acted like grown ups and resisted the temptation (shocking, I know).

It wasn't until long after we were home that I finally got it. The constant potty breaks were not a result of too many juice bags or a bladder infection, the bathrooms were probably the one place where there was not constant stimulation. Yeah, the automatic flushing toilets were loud, but, Ryan was familiar with that sound....he expected that sound. Public restrooms were the one thing in Disney World that Ryan knew would function the same way every single time which brought him comfort (regardless of the smell, the germs, and the loud flushing toilets). In the safety of his bedroom, weeks after we returned home, Ryan told me that he liked how "smooth" the walls felt in the bathroom stalls. Smooth and soothing, not bright, rough, bumpy and loud. He never ceases to amaze me.

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So, yes, our family survived Disney World...twice. And I guess in some ways the first time did prepare Ryan for our next trip, since there were fewer restroom stops. Ryan enjoyed himself ("except for walking around in all those freaking parks") and often begs to go back. We were warned of how difficult a trip to Disney can be for a child with an ASD and we tried to prepare Ryan before we went and heeded the advice from the websites, the books and the specialists, but, not one of them suggested hanging out in the public restrooms with smooth feeling walls when the days got too long and the magic of Disney started to wane.

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Just like I decided to forego the nausea inducing meds to survive my Seasonal Affective Disorder, and have found my own way of surviving the long, cold, ugly winters, Ryan found his own way to survive all the magic of Disney World. Whether it was a swim in the wave pool at Typhoon Lagoon, an $8 popsicle (which gave his father heart palpitations....perhaps a letter from Dan's doctor should be in order for our next trip), a sugary treat from the Goofy Candy Store or a routine pit stop at every visible restroom with it's smooth walls and predictable experience, Disney was still magical, still fun, and still worth the trip.

Ryan will always have naysayers, those who predict the doom and gloom of an autism diagnosis, but, just like Ryan experienced Disney World in his own way, so too, will he experience life in his own way. And although Ryan may not always be able to seek comfort and refuge in a "smooth" walled restroom, I have no doubt, that just like Goofy, regardless of what people think Ryan is or what he is suppose to be, Ryan will continue to discover ways to cope in order to find the magic.  You see, Ryan knows just who he is and worries little about who and what others expect him to be....not even Walt Disney can top that kind of magic.

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Ryan and Goofy....two peas in a pod.
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Bad Santa

12/17/2013

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Santaphobia, an overwhelmingly, terrifying fear of Santa Claus may not be found in the DSM-V as a true phobia diagnosis, but, oh it is real. Just check out Ryan hiding behind the fake presents at Santa's faux workshop at the mall. We do not have one photo of this child sitting on Santa's lap. Not even one of those crying, screaming, reaching for Mommy photos that are so funny to look at when the kids are obnoxious, not afraid of anything, teenagers. Nope, Ryan wouldn't go anywhere near that jolly old elf. Ryan didn't care about Santa's twinkling eyes, his merry dimples or his beard as white as snow. It also didn't matter if Santa had a sack full of toys or a handful of candy canes, my boy wanted nothing to do with him....then this year at the age of 12 (yes at 12 Ryan still believes in Santa...don't judge) a small break through occurred on a cold winter's night.

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We have a very cool local fire company that cruises through our township with Santa on the front of the firetruck stopping for kids to tell Santa their Christmas wishes and handing out candy canes. For the longest time, the firetrucks came right past our house which was so AWEsome! We would forego our coats and hats and run outside, camera in hands to capture the moment. While the rest of the family was running to Santa, Ryan was running from Santa....fast....upstairs...to the bathroom....where he immediately locked the door. At first, with Ryan's sensory sensitivities, I thought his terror stemmed from the occasional wail of the siren from the firetruck that let kids know Santa was on his way. After Santa was safely down the street and out of sight, I would unlock the bathroom door and find Ryan cowering on the floor hands over his ears, so it seemed like the siren fear was a plausible theory. However, the siren theory didn't explain Ryan's fear of Santa at the mall, Santa on the street corners, or Santa who visited the holiday parties at Ryan's school (which by the way, he hated....because of Santaphobia). Ryan's fear of Santa was extreme and puzzling....until he finally found the words to tell me.

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Many kids, especially toddlers have a fear of Santa Claus or people in costumes, it's a pretty common fear, but I always thought it was funny that Ryan had no fear of the characters at Disney World, Chuckie Cheese or those creepy fake characters hitting you up for cash on the streets of New York City for a photo op. Ryan's fear was strictly Santa Claus. Perhaps his phobia was not Santaphobia, but, actually Pogonophobia which is a fear of beards. Mickey and Donald don't have beards, Chuckie Cheese appears to shave daily, but, Ryan has known other people that have beards and these folks' beards did not cause Ryan to run away and hide in the back of the car. The other possibility may be Hagiophobia which is the fear of saints. After all, Santa Claus is Saint Nicholas, but, since we know so few saints, it's hard to test that theory. Then I started to wonder, if maybe, Ryan hid under the Christmas tree one cold, winter's night as Dan and I watched one of our favorite adult holiday movies of the season, Bad Santa. Billy Bob Thornton as Santa Claus would strike fear in the bravest  of children.

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Bad Santa, is without a doubt, the most inappropriate, raunchiest, wrongest (horrible grammar, but trust me, "wrongest" is fitting) Christmas movie out there, and yes, I have to admit Dan and I watch it. Ok, fine, we own it. Ok, fine, whatever, we own Badder Santa which is even raunchier and while I'm sitting in the confessional booth, I may as well admit to rewinding some of the wrongest scenes and laughing until I cry. I know it's inappropriate, I know it's un-Christmasy, and I know there is not a Badder Santa around than Billy Bob Thornton, but, my gosh it is pee your pants funny. I promise that every time we have watched it, Dan and I made sure that the kids were busily occupied or sleeping. Which is kind of hard to believe since by the age of five, our kids could quote all of the curse words Clark Griswold rants at the end of Christmas Vacation when he receives his Jelly of the Month Club subscription. I guess a frustrated father during the holidays is acceptable in our home, but, fortunately we draw the line at drunken, cussing, fornicating Santa Claus. Maybe one night, Ryan snuck under the Christmas tree as Dan and I watched Bad Santa and heard Billy Bob Thornton dressed as Santa drop the F bomb as some innocent child sat upon his knee or maybe Ryan caught a glimpse of drunken Santa beating the stuffing out of the fake reindeer after crawling off the escalator in a drunken stupor. Or maybe, it's not Billy Bob Thornton's Santa that Ryan worries about, it's the Santa who actually puts the presents under his own tree that freaks Ryan out a bit.

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As any parent knows, the holiday season can be a time of stress and madness. All the expectations that the likes of Martha Stewart, Nate Berkus and those horribly perfect, crafty moms who pin away on Pinterest, put upon us mothers are ridiculous. Trying to make the most wonderful season for children even more wonderful by baking the right cookies, making gingerbread houses that Hansel and Gretel would be jealous of, decorating the house with enough lights to make your neighbors wear sunglasses at night, and trying to deliver on the, all so important, Christmas Gift List. Christmas is after all, the most wonderful time of the year, which begs the question, why do we try and kill ourselves to make it more wonderful? I would love to blame it on Facebook and Pinterest, but sadly, I have been trying to make Christmas perfect long before social media pressed upon me the importance of such a task.

With all the holiday stress, all the holiday perfection, the one guest who never fails to show up over the Christmas holiday, completely uninvited is good old Denial. Yep, Denial constantly reminds me that Christmas time is a magical time for children and that all children feel the same way about Christmas....complete and utter JOY! With Feliz Navidad pumping out of the stereo, as I baked yet another batch of Christmas cookies that will be found in the freezer in April and tossed in the trash, Denial would yell, "Yes, sure, the lights, the decorations, the changes in routine may be difficult for a kid on the spectrum, but Christmas ONLY comes once a year, so you have to make the most of it!". It doesn't matter that even with Denial putting such notions in my head, in my heart I often wondered if all the holiday madness was too much for a boy who hates change, who has a photographic memory and remembers exactly what you did last year, so, heaven forbid if you don't remember the precise glass he drank his special Holiday Punch out of, and who loves his family, but in small doses, not everyone all at once. 
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Yes, Denial was there forcing mittens and a hat on a three year old boy as I pinned him down amongst the Douglas Fir at our annual "Find the Perfect Tree" outing at our local Christmas tree farm. Denial also helped me stuff my boys' flailing arms into sweaters and stiff shirts for our annual Christmas card photo begging Ryan in my best Grinch like voice (with swear words to match Billy Bob Thornton) to "just sit still for five minutes" while he yanked, tugged and wailed at his scratchy, yucky clothes for the perfect family photo (if you happen to get one of our cards, know that the picture on the card is a fallacy). Denial has sat shotgun next to me as I have dressed the kids and taken them to sit on Santa's lap at the mall, assuring Ryan that Santa is not scary and begging him to sit on his lap, just one time in order to capture another phony photo. And Denial is also there every year, including this one, when I beg Ryan for his Santa list and race around trying to fill his near empty list with things I hope he likes.

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Ryan never really played with toys, not in the way a neurotypical kid does, so Christmas shopping has never been easy. Santa would end up "making" toys, and wrapping them up, just so Ryan had something to open. Most of the toys would be tossed aside once the one and only coveted electronic device or video game was opened. Even when Ryan was little, if the toy didn't beep, light up or provide him with sensory stimulation, he wasn't interested. The one exception was wooden blocks, which Ryan would scatter on the floor then roll his body all over them for sensory feedback his body was craving after tolerating another Christmas Season with Bad Santa. Of course, I did have my Good Santa moments and I tried to be a fair and equitable Santa. Santa didn't feel it was "fair" if Ryan's siblings had more gifts, more presents or more money spent on their gifts, even though the gift receiver could have cared less. Even this year, Ryan has three video games on his list and that's it. Poor Dan stood in line on Thanksgiving night (yes, the horror....we broke the "No Shopping on Thanksgiving Rule" and as evidenced by the wait time at the check out, clearly hundreds of others did too) to score Ryan an iPad Mini. A $300 item that wasn't even on Ryan's list, but Santa thought he would like one. The Mini was returned the next week when Ryan assured me he did NOT want an iPad Mini and if he got one he was selling it. Even Bad Santa knows that's a bad idea.

Picture"Bad Santa", Dimension Films
Perhaps Ryan's Santaphobia didn't stem from an accidental viewing of Billy Bob Thornton as Bad Santa, maybe the Santa Ryan fears is the one who tries so hard to make Christmas perfect for him and his siblings that she winds up behaving like a demonic elf. Ryan loves Christmas. He loves all the treats, the traditions, the Christmas shows (especially The Grinch, ironic isn't it?) the presents and the music. What Ryan's mother needs to tell Denial is that Ryan is happy celebrating Christmas without a list of exactly 10 gifts (no more no less), a perfect Christmas tree, a perfectly candied gingerbread house, Martha would be jealous perfect cookies and a perfectly posed family on a phony Christmas card. Maybe if Mom's Atelophobia (the fear of imperfection) would subside, so would Ryan's Santaphobia.


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As for this holiday season, Ryan still suffers from Santaphobia, but, he had a bit of a breakthrough this year. Although Ryan started the evening off hiding in the car while we all went and greeted Santa on the next street over (with all the housing development, Santa can no longer hit every house, you have to meet him on the corner), some progress was made. When I told, the very young, very hip, very cool Santa about Ryan's phobia, he jumped down from his perch on the fire truck, gently walked to the car and wished Ryan a Merry Christmas with an outstretched white gloved hand holding a candy cane as a peace offering. When Santa asked Ryan if he's been good, Ryan got out of his hiding spot, made his huge, trying not to smile face, and with little to no tremble in his voice, Ryan said, "Pretty good". With that, young, cool Santa high-fived my boy and walked back to his handful of tiny, waiting fans. As Santa walked away, Ryan was grinning from ear to ear, no longer trying to hide his Christmas joy. Ryan immediately scripted in his best Agnes voice from Despicable Me, "He's nice, but scary, like Santa."

Ryan then assured his worried, guilt ridden mother, I mean Santa, that his Santaphobia didn't stem from his Atelophobic mother, or his concern if he'd been naughty or nice, and he didn't see Santa as the pre-curser of Mommy losing her holiday mind. It wasn't the fear of the beard or the fear of saints. Ryan's fear came from the fact that "Santa is a stranger who creeps down your chimney, comes into your house when you are sleeping and that's just creepy." For someone like Ryan, who thinks so logically, a man dressed as a giant elf, regardless of his degree of jollyness, who breaks into your house when you are sleeping, should not be someone whose lap you sit upon, but someone you should run and hide from. So, although Denial and I may have contributed to Ryan's Dentrophobia (the fear of Christmas trees) after torturing him year after year seeking the perfect Christmas tree and I may have ruined his chances of being a model due to Fotografizophobia (the fear of having your photo taken) from all those holiday card photo shoots that went up in flames, I had ABSOLUTELY NOTHING to do with Santaphobia. Whoosh. Even though, I have provided Ryan with years of therapy material, I think I have also helped him develop phenomenal coping skills. That most certainly make me Good Santa, don't you think?

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Still a little uncertain, but a huge breakthrough!!
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B is for Brave

11/13/2013

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The cold sweats. You know, the sweaty, clammy, chilled feeling you get when you are about ready to "toss your cookies", give a speech in front of your classmates or colleagues on a topic you really know nothing about, hear the door slam on Disney's Mission Space ride and wonder why, when you suffer from claustrophobia, you Fast Passed in the first place, or send your son off to middle school with a project he completed that you feel certain will irrevocably impact the rest of his middle school career. Yeah, that kind of sweat. I didn't have the stomach bug, I wasn't giving a speech and I wasn't standing in a hideous line at Disney World, so that leaves one cold sweat producing option.

I broke out in a full fledged, panicky, clammy, cold sweat as I waited in car line at middle school a few weeks ago. As my heart raced, and a bead of sweat began forming on my brow, I sat behind the wheel of my mini van wishing I was on Mission Space and all I needed to do was frantically scream that I wanted out and some nice Floridian teeny bopper would roll her eyes at my pathetic self and open the door to end my torture. Ryan was unaware of my near hysterical state as he sat next to me happily humming the theme song to Total Drama Revenge of the Island. In Ryan's hand, THE Project, an acrostic poem he had created on poster board, quite proudly, on his own. For those of you who had to Google "acrostic poem", like I did when Ryan received the assignment, an "acrostic" is a poem or other form of writing in which the first letter in the text spells out a word or phrase. In this assignment, Ryan had to use the title of a book he read, and each letter in the title had to relate to something that happened in the story. Easy breezy, right? Well, sort of, if you don't have a whacko for a mother.

The book for the project was titled, "Anything, but Typical", by Nora Raleigh Baskin. I picked this book up at an autism conference. I believed Ryan would enjoy it. I told Ryan he should read it for his book report. I felt certain in doing all of the above, that I just sent my son to the gallows. "Anything, but Typical" is a fictional story about a boy with an ASD. When I turned to the first page and read the main character's abhorrent description of art class, I thought, "Well, that sounds like someone else I know.", so I was hopeful Ryan would see past the words, past the laborious task of (shudder) reading, and see a little bit of himself. Ryan HATES reading, especially fiction because in Ryan's mind, fiction is a waste of time and "utterly ridiculous". If it's not true, or real, why bother? What good could come from such a big waste of time? So, needless to say, when my boy read the book and said he "loved" it, I gave myself a huge pat on the back!
 
I asked Ryan, "Did you like the book because you saw a little of yourself in the main character?". Clearly, I forgot who I was speaking to, "No, I'm not like that boy at all because my name is Ryan, his name is Jason. I live in Pennsylvania and he lives in another state. I hate writing, and he loves writing." Ok, ok, so for a minute, I thought maybe Ryan could see past the black and white print and "read between the lines" to find the gray. It wasn't until Ryan finished his acrostic poem that I realized that even though Ryan may not "see" the similarities in himself and Jason, he clearly felt them. Once I read Ryan's words, I no longer was patting myself on the back, I was kicking myself in the a**, terrified that my book choice for Ryan and this project, would not only have a deep and lasting impact on his middle school years, but, this poster, this "acrostic poem", may possibly have negative consequences that could potentially reverberate throughout the halls of high school too.

For those of you over 40 and who need to hold anything you read at arms length because you refuse to buy reading glasses at CVS, I will write out Ryan's acrostic poem in case the words aren't legible in the photo above.

Autistic
Neurotypical
Yearn to feel normal
Therapist help
Hawthorne is Jason's art teacher
Insecure
Nervous about new experiences
Gifted with the English language

Bennu is a dwarf in Jason's story
Unusual behavior/habits    QUIRKY
Trouble always searches for Jason

Talking was difficult
Yelling is what people did to Jason when he had no response
Phys Ed is what he hated the most
Isolated
Clay caused Jason to flip and turned him into a laughing stock
Art is one subject Jason really hates
Loves to write
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As I read Ryan's words, I felt an all out war begin in my brain. I can't even begin to describe the pride I felt in the work that Ryan had done, the words that he often is unable to say, but was clearly able to write down. However, if I'm being AWEnest, I also felt a panic rising in my chest. What if Ryan's classmates made the connection between Ryan's acrostic poem and Ryan? What if words like "autisitic", "unusual behaviors", "quirky", "isolated", "laughing stock" and "insecure" all pertained to Ryan and not Jason, the main character in the book? What if after years of believing Ryan was "odd", "weird", or "nerdy", Ryan's classmates recognize that Ryan's differences go much deeper than that, deep enough to make his differences worthy of the label "autistic"? What if after all my soap box preaching, all my "look beyond the label" regurgitation, I actually do prefer "quirky" or "weird" over that heartbreaking A Word. What if I'm a fake, a phony, a horrible mother?

What, if, what if, what if?!! The panic was close to overflowing, so close that I almost screamed for Ryan and dragged him and his poster back in the car. I considered bribing Ryan with a donut and taking him back home and putting him in the bubble I often longed for, where I knew Ryan would be safe from prejudice, ignorance, bullies and a certifiably crazy mother. My hands were gripping the steering wheel so hard, my knuckles were white and I no longer could think straight. The other parents in car line, whose kids walked care free into school with no acrostic poem that linked a label to their kid, were angrily beeping their horns at me. The death grip I had on the steering wheel loosened enough that one particular finger was almost ready to shoot up in the air as I slowly pulled away. What could I do now? Ryan was walking happily through those middle school doors with none of the fear or the backlash that had me close to puking. I drove home with panic in my heart, regret in my mind, and Denial chatting annoyingly next to me.

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I frantically raced into the house to share my breakdown with Dan (poor Dan, he has had to talk me off my cliff so many times I stopped counting...he probably hasn't). As I rambled through my lists of fears, some completely irrational ("What if they call him Rainman?", like these kids watch anything other than YouTube and Vine videos) and some more rational ("What if the other kids do read between the lines and this discovery "Isolates" Ryan further, making him Yearn even more to "feel normal"?), Dan stood calmly and listened. When I finally exhausted my neurotic list of whys....Why did I buy him that book?....Why did I let him expose his vulnerabilities?....Why didn't I homeschool him?....Why wasn't Dan trembling in a cold sweat and racing to the school to rescue Ryan from the injustices and bullies of middle school?....my emotionally spent, and highly adrenaline filled brain collapsed in a heap on the couch. Dan looked at me, calmly and without so much as a bead of sweat or a tiny tremble and said, "I think it was brave." My gosh how I wanted to kick him. If my body hadn't been transformed into a wet noodle, I surely would have given him just one quick shot to the knees. This glass half full, annoying husband of mine, whom without I would have long since been institutionalized, was so right, so spot on, and I kind of despised him for it. Just because Dan has never committed me against my will (aka, a "302") for a much needed "rest", doesn't mean I have to love when he is right. Obviously, it kills me when Dan is right, especially when he is so calm about it. But what grinds that knife just a little bit deeper, is when I have been so very, very wrong. 

As much as Denial tried to help me wrestle Ryan and his poem back in the car that morning, I knew that Dan was right (dammit). Ryan was brave. Ryan is brave. Even though Ryan and the main character, Jason, had some differences in Ryan's black and white brain, Ryan wrote down words that he understood, that he related to, that he himself has felt. Words like "isolated", "unusual behaviors", "prefers to be alone", and yes, even The A Word, "autism". Whether or not Ryan gave a moment's thought to his fellow classmates recognizing those same traits in him, I AWEnestly can't say. Maybe Ryan thought about it and didn't care, or maybe it never even crossed his mind. We neurotypicals get so caught up in worrying about what others think, say, or do, that we lose a little bit of who we really are. Other people's perceptions have so much weight in our lives, that sometimes we lose sight in who we really want to be....who we are really meant to be. Ryan spends very little time concerning himself about other people's perceptions which gives him the freedom and the bravery to just be. Exposing your differences is brave. Not hiding who you are is brave. Being unashamed of who that is, is brave. Keeping Denial on speed dial and calling her every time life gets scary, is not.
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The definition of brave is "to face or endure with courage". When we think of bravery, we envision fireman running into a burning building while others run out. We picture police officers in a firefight, bravely protecting their community. We see soldiers putting themselves in harms way, to protect innocent civilians and to protect our freedom. All perfect scenarios of bravery, and of course, such bravery should be exemplified and celebrated, however, bravery has many faces. There are other brave heroes who "face or endure with courage" very different battles. The bravery of a child who sits for a haircut when each snip of the scissors feels like a thousand needles in his head. A child who wears scratchy, hard jeans when every fiber in his being is screaming for those pants to come off. A child who spends his time at recess alone, preferring the solitude to a social mishap on a playground filled with social cues he can't begin to understand. The teenager who bravely walks into a crowded, noisy lunchroom where the noise, the smells and the chaos are like walking onto a battlefield, but in this battle, he is alone, with no flak jacket, no protective gear, and no back up.

Bravery takes various forms. In order to be brave, one doesn't have to put out a blazing fire, learn how to fire a semi-automatic handgun or drive a humvee. Sometimes, being brave means finding the right words in an acrostic poem and proudly sharing those words, with little to no fear, and the only back up being a hot mess of a mother curled up in the fetal position a mile down the road. Even though it kills me to say it again, Dan was right (ugh). All my worrying, sweating, and panicking was for nothing. Ryan's teacher said, Ryan "rocked" his presentation! Ryan said what he wanted to say, got all the words out, and not a "Rainman" was mumbled in the class. For a boy who often says so little, who often struggles to find his words, when Ryan does say something, it certainly is worth listening to.

Maybe that day Ryan taught his classmates what it is to be brave. Maybe, brave has a new face. Or maybe, middle school kids are just too young to "see it", so consumed with fitting in and being just like everyone else, brave doesn't matter. One thing is for certain, my brave boy and kids like him, are proving to anyone who is fortunate enough to read between the lines, that there is so much more to these kids than words in a psych report, words in an IEP, words in a book, or words in an acrostic poem. The day Ryan shared his words, he was, indeed, brave. Every day Ryan walks out the door into a confusing world that doesn't understand him, and rarely tries to, he is brave. Every sensory sensation that Ryan tolerates and doesn't run from, he is brave. Every social blunder Ryan survives and social cue he misses, yet keeps on going, he is brave. Accepting his differences and being just who he is meant to be, may not make the nightly news, but Ryan's bravery, his courage in the face of adversity, makes him an ally worth having on any battlefield. Dr. Robert Anthony, author and self-help guru said, "The opposite of bravery is not cowardice, but conformity." My courageous, handsome, little non-conformist, might just be the bravest kid I know.

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