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Circles

2/16/2016

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There is always THE group. THE crowd. THE posse of friends that have such a tight circle surrounding them that very few "get in". We can all regress for a moment back to our teens and picture THEM standing in their circle. Maybe you desperately wanted in, but, refused to admit it. Maybe you tried unsuccessfully to penetrate the impenetrable fortress like walls of this desired circle, only to be rejected time and time again. Maybe you were one of the ones afraid to try, admiring the circle from a distance as you watched one person after another bounce off those tightly enclosed circular walls only to walk away dejected and embarrassed for even making an attempt. Or maybe you were the minority. The one who didn't want "in" the one who thought being "in" was so "out". Bravo to you.

​Regardless of which category you fell under, chances are, you knew which circles you belonged in and which ones you didn't. These so called social circles start as early as grade school and last well into adulthood. I'd imagine even in the nursing home there is a coveted circle that the elderly desperately want to get in. I think the hardest time to find your circle though, has to be the early teen years when you are trying to figure out exactly who you are, and if a circle is even the shape you are looking for, which one fits you best.

As a teenager, there are many circles, each one having their own size, their own walls and their own people occupying the circle. Some circles are easier to get into and some are not. There is the athlete's circle and unless you can catch, throw, run, jump, skate, or dance, chances are good they won't let you in. There is the geek circle that only allows kids with a certain GPA and a specific number of Honors courses on their transcript to break through these walls. There is the rich kids circle and entrance to this circle is based on the clothes you wear, the car that drops you off in car line and the neighborhood where you hang those clothes and park that car. There are endless circles each with specific entrance criteria. Sometimes the circle fill up quickly and chances are if you weren't in the circle before the circle closed, you may not ever get in.

​What if, as a parent, you had a child that you thought didn't even know the circles existed? A child whom you believed didn't see the circles at all, therefore, never really felt bad that virtually every circle was closed to him and he was left standing alone outside the circle. That because of an autism diagnosis, and his diminished social awareness, you hoped and prayed he wasn't aware that the people standing within the various circles didn't believe he quite fit into any one. What if the circle's inhabitants saw your child as a square whose different edges would not allow him to fit within the confines of any circles, but, because you believe he didn't see these differences, you thought it was no big deal?

​Then one day, you realize he has seen the circles...across the cafeteria, standing around the lockers, hanging out at the high school football game and he has wondered what it would be like to be in, but, recognizes he is out. He is older and wiser now and understands what he has been missing being alone on the outside of the circle. He recognizes that his differences make it hard to even know where to begin to try and break through any one of circles to find one that fits. Then everything you believed, everything you held onto crumbles and you begin to wonder if you were in fact blind to the circles, not him. You may even begin to wonder if you were blind to him and the circle he has spent years building around himself.

​When Ryan was little, I use to worry that he wanted friends, that he wanted in the circle, any circle. Then one day, he told me, he didn't have any friends and that it didn't make him "sad at all". So, I stopped putting my wants for him in check and started seeing the circle the way he did, a nondescripts shape that he had no desire to enter.

​I spent years trying to help Ryan make friends, then I spent years believing he didn't really "want" friends. Until two weeks ago when someone opened a circle and Ryan clearly wanted "in". He just needed to know how to step through the open circle and somehow make it feel like he fit. We practiced what to talk about, what to say, how trying to "fit in" might feel and all the things about him that made him worth being a part of any circle. It took an invite to a party and the conversations that followed to make me finally see the circle that mattered the most. The circle that Ryan created. A circle big enough for only one.

​Ryan spends every weekend alone. I'm not telling you that to garner sympathy for me as his mom or to make you feel sad for him, it's just a fact. It's hard to know if Ryan prefers to be alone or if being alone is just easier. I think it is a mix of both. Over the years, I have tried to intervene. Sometimes with success (short periods of time with a specific plan and a "safe" friend) and sometimes with less success ("When is he going to leave?").

​Ever since we first heard The A Word, I have lived with the fear that Ryan will spend his life alone, no circle ever opening for him and never letting anyone in the circle he created for himself. Ryan is protective of his circle because when he lets others in, it gets confusing for him. There are social nuances, slang, facial expressions and body language he doesn't quite pick up on and that makes him feel like the circle is closing in on him thus making his circle feel unsafe. However, in recent months, I have watched him take risks and step outside his circle. I see him looking in to other circles and wondering if there is one that will make room for him. I also see him considering making room for others in his circle.

​I understand now that Ryan has always seen the circles, but, until he was ready, the circles didn't hold much shape for him. From things we have discussed and changes in his behavior, I believe now more than ever, Ryan longs to break through a circle and find one that fits. The desire to be included is there. 

​It's easy to point the fingers at others and say, "they won't let him in", but, Ryan and I have discussed that maybe the first thing he needs to do to find a circle, is to let someone into his. To open his self-enclosed circle long enough to let someone in so they can see all that is amazing and unique inside his circle. It is only then, when he finally lets others in, that they may reciprocate.

​I know that Ryan is considering opening his circle. I believe he will open it, if and when, he is ready. And I know that as his mom, the one person he occasionally allows to enter his circle, that no matter how hard it is, I need to step away from his circle and let him decide who is worthy to enter. Not too far away though. Never, ever too far away.

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Opening the circle to someone very kind and very safe.
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Exit Stage Right

7/17/2014

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PictureUzo Aduba as "Crazy Eyes"
As I watched the announcements for the 2014 Emmy Award Nominations, I jumped off the couch like Tom Cruise and gave a "woohoo" when I heard Uzo Aduba's name (which I have no idea how to pronounce) as a nominee in the category for Outstanding Guest Actress in a comedy. Uzo Aduba plays Suzanne "Crazy Eyes" Warren in Netflix's Orange is the New Black series and she is crazy....and AWEsome!  

After I calmed down and realized how pathetic I was, I couldn't help, but, daydream just a little....ok, fine, a lot...about perhaps one day, when I'm old and gray...ok, fine, older and grayer...sitting on my couch and woohoo'ing after hearing Ryan's name announced as a potential Emmy Winner. Chances are it would not be in the comedy category, since, although Ryan is freaking hysterical, he rarely tries to be or rarely gets his own humor. Now that I think about it, that might actually make him funnier and more believable, thus more Emmy worthy.

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It's not like I think an Emmy is eminent for Ryan because he has extensive acting experience (His only theatrical production was the role of Hippo in a second grade play...he was an outstanding Hippo) or because he has expressed interest in the theater (besides sitting in a movie theater seat watching the latest kid friendly movie with a bucket of popcorn), but, for a boy who can memorize just about anything, who can imitate any sound he hears and who can sing his heart out, a future actor seems like a good fit. Which most assuredly will lead to an Emmy nod.

Like any good actor or actress, Ryan can memorize lines. In fact, he has spent his entire life doing just that...using lines he hears elsewhere to communicate. Very rarely does Ryan use his own words, his own script, or his own lines when communicating. There is very little ad libbing and improvisation going on with this future Emmy Nominee. If it's not in the script, it's not in the show.

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Most of Ryan's language is comprised of lines from television shows, movies, video games, or from the lips of yours truly. Even when my boy plays with the dog, it is my lines, my silly voice, my puppy love songs, my facial expressions, and my body language. However, since Ryan is so AWEsome, and because a 45 (what?) year old woman singing to a 90 pound lab looks a little like Crazy Eyes, it sounds and looks so much better when Ryan does it. Even though it may be unintentional, my boy totally upstages me and I am left back stage, alone, during the curtain call.

One of the telltale signs of autism is deficits in verbal and nonverbal communication, so it seems illogical that I would think Ryan has a future on the stage where language, verbal and nonverbal communication are essential. The thing is, an actor or actress is playing a role. They are not chitchatting with friends, trying to understand the social nuances of peers, or figuring out the appropriate response to a vague, hard to understand question, unless of course the role calls for that, and if the role did call for such situations, there would be a script telling the actor what to say and how to say it. Ryan would nail it.

During Ryan's first ever evaluation, I remember telling the folks from Early Intervention that Ryan rarely used his own language, almost everything he said was language he had heard elsewhere. This was the first time I heard the word "scripting". Ryan "scripts" lines, he has heard elsewhere, but, ironically is able to use them in just the right manner in a conversation. 

PictureMike Myers as "Fat Bastard"
Whether it's Jim Carrey as The Grinch or Mike Myers as Fat Bastard (Ryan calls him "Fat B" because he isn't allowed to swear until he is 16...I swear I have no idea where that rule came from), Ryan has comedic impersonations down to a science, yet, over the years as Denial and Clueless sat next to me in the "audience" listening to Ryan's scripting, I was not laughing, applauding or enjoying the show, instead, I was wringing my hands and worrying. 

I would say things like, "Fat B" is freaking hysterical, but, I think Ryan is even funnier. Can I hear Ryan talk now?". To which "Fat B" would respond, in a near perfect impersonation, "Maybe. It did sound a little wet there at the end." Did I mention Fat B loves potty talk? Too bad Ryan is not a Ryan Gosling fan, he'd have all the girls at school swooning. 

At Ryan's most recent evaluation, his "scripting" and language deficits were at the top of my concerns and it turns out, I was right (sometimes I hate being right...not very often, but, sometimes). Ryan greeted the doctor and her staff in the most amazing British accent which had them all smiling, After the evaluation, the lovely doctor, in a very nice, professional manner basically told me that with as many kids as she sees, Ryan's language is poorer than most kids who walk through her door. Ryan's scripting, his verbal and non-verbal communication might just have peaked at the age of 12 and chances are, it's a good as it's gonna get. I felt like I was going to throw up. 

I believe this wonderful psychologist was typecast perfectly for her role. To deliver such powerful lines, in a very kind and compassionate way to this worried freaked out mom, could have easily won her an Emmy. This kind doc was doing her job and she had memorized her lines and played her role beautifully, but, Denial and I still wanted to exit stage right and silently hope the curtain fell on her head.

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The doc had her lines down, but, sadly, I did not. There was no script for this worried mom. Being told that my beautiful leading man will always struggle with communication, as his critically acclaimed (let me have my moment please) supporting actress, I didn't know what to say or how to act. In that moment, all of the lines I had memorized over the years vanished, and I sat in that office with a serious case of stage fright.  

Even though I have spent hours trying to understand autism, and even though, I have always been told that autism is a "life long disability", with Denial wiping my tears and repairing my makeup, I recognized that this supporting actress, this director, this stage mom had always hoped that the antagonist, Autism would exit stage left and never, ever be cast in a performance of Ryan's again. 

I smiled through my tears and thanked the lovely doctor. I knew this kind psychologist was not the antagonist in this scene, nope, that role belonged to autism, and it always had. Talk about being typecast. And even though I felt like I had read and heard this script before, with a different cast, in a different scene, it still felt raw, new, and horribly painful.

I came home and cried and sulked just like poor Susan Lucci, who needed 19 Emmy nominations before finally winning the coveted award. In my heart, I believed that Ryan could still make progress, that he could find different scripts, different directors, different supporting cast and different settings that will enable him to do a lot more ad libbing and improvising. Just like directors have the ability to bring out performances in their actors and actresses that lead to Emmy Awards, with proper direction, Ryan may outperform any actor who has stood on the stage before him. 

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Ryan is the protagonist of his production, as well as the executive producer and although he may steal lines from other cast mates, as well as upstage them with his charming AWEsomeness, I believe Ryan will never let the antagonist, Autism, steal the show. Ryan will continue to act out his scenes, and I will do my best to direct him to a happy ending. There will be production problems, creative differences, long intermissions and quite possibly the occasional strike, but, no one, not even Autism, can predict Ryan's upcoming scenes. No one can say how Ryan's story will unfold or how it will end, but, between the two of us, we can make a beautiful production that we will continue to share with others so they can see, that the protagonist can overcome whatever obstacles the antagonist puts in their way and that good guys do not always finish last.

This is not a dress rehearsal, this is the real, sold out show. I refuse to let anyone predict the script...not doctors, not therapists, not experts, not even Autism. Whether Ryan's performance is held before a live audience or in the comfort of friends and family, I promise you, that during the last scene, when the final lines of the script are spoken, and the audience demands a curtain call, I will quietly exit stage right, and watch my star receive his much deserved standing ovation. And quite possibly that Emmy.

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Won't he look so much better than Susan Lucci when he gets his Emmy?
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#TBT

5/29/2014

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I try to be a "cool" mom, you know, a loving mom who does just the right amount of nagging that makes you a responsible parent, but, not over the top nagging that makes your kids think you are lame. I try to be the kind of mom that makes our house the hang out for all my kids' friends because, "Kyle's mom is so chill" (and because I have a sweet tooth like a child and my pantry is living proof of this fact). The kind of mom that my mom was when I was growing up (and of course still is today), with the added bonus of trying to be cool on social media. I am told by my teenage son that in the world of social media where I have mistakenly and humiliatingly crossed into his web universe, that I fail miserably in the Cool Mom Department. And if there is anyone who is going to tweet that you are without a doubt the most embarrassing mother in the world of social media, it's going to be your 16 year old, know it all, teenage son. #epicfail

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I have been told, by my horribly embarrassed teenage son, that we "old heads" have ruined Facebook for the youngins (no one who is anyone over the age of 14 has an "active" Facebook account) and now, even worse, we over the hill, inept, social media blunderers are hashtagging on Facebook. #OMG 

For those who may be even lamer than me, a hashtag (#) originally began on Twitter then went to Instagram and it is a way to sort or categorize your tweets and pics so that other people who search under that hashtag can find similar tweets, pics and comments. For example, #embarassingmoms could be a hashtag on my son's Twitter account that would follow a comment something like this, "Mom's #'ing on FB again WTH?" and then his followers may share a similar horrific mother story with the same #embarassingmoms. 

Until recently, us old heads using a hashtag on Facebook was just for fun (or embarrassment) because there was no direct link from one hashtag to the next. Facebook changed that, but, according to teenagers, it's still not an acceptable hashtag outlet. In fact, when you put "hashtagging on Facebook" in your search engine, the second search title that comes up is "hashtagging on Facebook is stupid", which I'm sure was written by a horribly mortified teenager. #ohwell

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According to my social media extraordinaire son, one of the biggest hashtag Facebook blunders, is #TBT. For you lame-o's, #TBT stands for Throwback Thursday, a day when people post pics of days gone by on Instagram not on Facebook, yet, every Thursday morning, I wake up to my Friends on Facebook sporting big puffy sleeves and even bigger puffier hair. Most of these photos are pictures with large groups of friends from the high school or college era. I AWEnestly love seeing these photos because they do indeed throw me back to a different time, a time when I was young, carefree, responsibility free and worry free (with the exception of my obsessive fretting over Aqua Net Super Strong Hold Hair Spray's ability to keep my hair puffy until 2AM). Ahhh....yes, the good old days. There are, however, some friends and some times, you don't want to throw back to, no matter how good the photo may look and how many Likes, Comments or Retweets you get.

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Ironically, it was last Thursday, that I had a #TBT moment, and it wasn't pretty. I agreed to help out with Ryan's end of the year Honors Party in Middle School. Yeah, I know, the fact that my son made the honor roll for the first three marking periods and was not only invited to attend, but, WANTED to attend, should have made it a phenomenal Thursday, throwback or not, but, old #TBT habits die hard. If someone would have snapped a photo of me last Thursday, waiting for the kids to be dismissed to the party, they would have seen the same woman (albeit a bit older) as the woman in this photo, smiling, happy, on the outside, but, a worried, hot mess on the inside. Yes, last Thursday, as I waited to collect the Honors Party Invitations for the invited attendees, I was thrown back with my old friends Denial and Clueless flanked on either side of me, but, my newer, much more fun to be around friend, Hope, was giving them both a nonchalant elbow shot as I waited and watched for Ryan to appear.

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My throwback was more of a scary, "must have done some brain damage from spraying all the Aqua Net, oh please don't make me relive it again", flashback. As I waited for my 95 pound, almost teenage son to appear, in my throwback mind, I kept seeing an angry, scared, overwhelmed, lost 4 year old boy camouflaged among the wood chips, playing alone under the sliding board at daycare. My palms became sweaty, I felt my heart rate pulsating to the sound of Pharrell Williams annoying Happy song being played by the DJ and all I could think was, if Pharell Williams entered this room right now, I would stuff an Honors Invitation in his big hat then shove it down his Happy throat. I was anything, but, Happy, I was more like Neurotically Nauseous (maybe I should write a song). I quickly forgot about my new friend Hope and was immediately back in my old inner circle with Denial and Clueless, praying, bartering, and willing my son, not to walk into that commons area alone. All the years I spent accepting that Ryan is happy being just who he is, disappeared as quickly as a trending hashtag. #oldnews

As I continued to watch and wait, unaware of the fact that I was literally holding my breath, I found myself whispering to Hope, "Maybe Ryan will round the corner and come through the doors with a friend", while acknowledging to both Denial and Clueless, "Ryan will not only probably be alone, he will probably be the last one to show up". As I stood there transfixed between the present and #TBT, I watched the non-stop streams of kids flowing through the hallways like salmon fighting to get upstream, literally pushing and plowing their way through the masses. I watched as the cool kids in their high black socks and trendy clothes moved together in packs like a group of hungry wolves, just waiting to take a bite out of the vulnerable kids who walked alone wearing high white socks and the same five shirts all school year long. I watched, I trembled, and I waited. "He will be last and he will be alone and that's ok" was ongoing, repetitive, mumbling mantra.
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Then just when my new friend Hope was ready to go hang out with some of the more optimistic, cool moms, my boy rounded the corner, in the middle of the pack, with no bite marks, wearing his high white socks, smiling, laughing and walking with, dare I say it....a friend. Ryan and his friend approached me with their Honors Party Invitation, and I got that very happy, yet trying not to smile grin from my boy and a nice, "Hello Ryan's mom!" from Ryan's friend. Ryan wasn't 4 years old anymore. He wasn't angry, he wasn't scared, he wasn't overwhelmed, he wasn't lost, and just like that annoyingly joyful Pharrell Williams predicted, Ryan was Happy and therefore, so was I. Would I have been less happy if Ryan rounded that corner alone, but, still smiling and happy while Hope quickly left my side for some other cooler mom, AWEnestly, yes, I would have, because no matter how hard I try not to project my version of happy onto Ryan, sometimes, I still do. #pharrellandme

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Any of my #TBT photos that I would post onto Facebook, horrifying my social media savvy son, would show me surrounded by a group of friends, no matter how far back I would throw the photo. I always found myself in a group, mostly because I loved hanging out with my friends, but, also because being part of a group was how I identified myself. I was a salmon. Being in the middle of gang of friends for me, was, and sometimes still is, easier than being alone. Ryan is quietly confident in who he is and yes, autism makes having friends difficult, so sometimes being alone is preferred, because for Ryan, being alone beats swimming up stream with a bunch of pushy, obnoxious, teenage salmon. For Ryan, traveling his journey in a pack of wolves or a school of fish is not his thing, for Ryan, sometimes, having just one friend to happily script away with, is all he needs. #1isallyouneed

As hard as I try to be a "cool mom", I'm pretty sure Ryan's poor friend probably did not think there was anything cool about me as I followed them around smiling like some weirdo, taking photos, but, not posting them (well, not all of them) on Instagram with a cool hashtag like #bitemeautism or #dumpeddenial or #justbeyou. As I stalked, I mean, watched, Ryan and his friend walk around, scripting the latest Gumball episode together, I stood alone with no friends....not Hope...not Denial....and not Clueless, yet, I did not, for one second, feel the least bit lonely. Students, teachers and parents milled around me, but, I didn't try to hide my falling tears. I embraced my joy as my heart filled with pride while I watched in AWE the #TBT moment transport Ryan and me to the present. 

Some days I'm cool, some days, I'm not, but, one thing we lame "old heads" have over these youngins is the wisdom that comes with age. We recognize that there are moments that don't need a #, a tweet, a post, or a comment.  Such wisdom may not make us cool, hip, trendy or keep us from humiliating our children, but, our old head knowledge enables us to see that there are some moments that really are better experienced alone, because no one who "follows" you, "friends" you, or "tweets" you, can fully comprehend the significance of a moment, of that moment, except, YOU. #mymoment

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Ryan just chilling with his friends (one is hidden to protect his privacy).
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The Idiocy of Idioms

4/17/2014

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One of my BFF's is Indian. She is gorgeous, fun, YOUNG and has more energy than anyone I have ever known. Come to think of it, why am I friends with her anyway? She grew up a military brat, but, spent most of her childhood in India speaking both Hindi and English...English with a British flair (Great Britain ruled India for decades, a little fact this dumb American never knew until she became besties with someone who actually lived outside of PA). Then my girlfriend met this AWEsome Indian doctor and found herself in the middle of Garrison, North Dakota for a few years only then to later wind up in South Central PA. It didn't take poor, lost "Dorothy" to realize she wasn't "in Delhi anymore". 

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The trade off for following a handsome, loving doctor to the middle of nowhere, left my poor Dorothy friend shoe shopping online, learning a new culture and learning all the weirdness that comes with adapting to the English language. The English language that was not taught in a classroom, or in her native India with a great deal of British influence, but, in the good old USA. Sure my girlfriend spoke English, she understood English and she could read English, but, until you are thrown into the English language with no rule books on the metaphors, idioms, inconsistent phonetics, and the slang haphazardly tossed about, my bestie "Dorothy" probably wanted to click her ruby slippers and bust out of Oz (most certainly out of cold, snowy North Dakota winters) and head back to Delhi, taking her fabulous husband in her basket with her.

For someone like me, who grew up speaking English and only English, I take for granted the ease of the English language, but, for some people, English isn't that easy. A study was conducted by a language processing company called Idibon to try and determine not which languages are "hard" to learn (Arabic is in the top five), but, which languages are "weird". The Idibon study looked into which languages used the greatest number of unusual features that are not used in many other languages. I am proud (?) to report that English ranked number 33 out of 239 languages in the "weirdness index". I can't decide if that is a good number or bad? I guess the fact that our language made the "weirdness list" should ease the minds of the non-native speakers. Now when they make grammatical, phonetical and pronunciation faux pas, they can acknowledge that they are not in fact weird, but, it is the English language who is to blame.

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I've often wondered if Ryan's struggle with pragmatic speech (language used to communicate and socialize) makes him feel like he has entered a foreign country, where he is familiar with the language....he speaks it, reads it, interprets it, and for the most part, understands it, until the English language 'weirdness factor" comes into play. My boy, and many kids with an ASD, are so literal that figurative language, metaphors, slang, cliches, etc., get lost on them, which ironically makes them feel weird, even though we now have legitimate proof that it is the English language that is weird. And as far as Ryan is concerned, there is nothing weirder about our language than the use of idioms. So, if you ask Ryan a question and he doesn't respond right away, do not ask him, "if the cat's got his tongue" because I assure you, not only will he think you are "as dumb as a rock", but, you will most certainly be shown his tongue in an attempt to prove to you that the cat in fact did not take his tongue. You will then be told, in a voice full of shock and disdain that you could AWEnestly be so stupid, that since a cat has no hands, taking a human's tongue is next to impossible

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The English language can be very difficult, "weird" and illogical not only for those who did not grow up speaking the language, but, for many kids with an Autism Spectrum Disorder who interpret all the words they hear in a very literal, very concrete, way. It's funny, because more often than not, I believe that the way Ryan sees and hears the world makes much more sense than the way I do. For instance, on what planet does it make sense that a heavy downpour should be equated to "raining cats and dogs"? Why not horses and cows? After all, if you are trying to talk about the large amount of WATER falling from the sky, aren't horses and cows bigger? Wouldn't that have a more dramatic effect and isn't that what we are trying to do? It makes perfect, logical sense to say, "it's raining heavily today" or "there is a lot of water coming from the clouds today" or more precisely, "I guess the water droplets in the clouds grew too heavy today and gravity forced raindrops to fall from the sky" since that is EXACTLY what is happening. Thank goodness there are no dogs and cats or horses and cows falling from the sky, what in the world would an umbrella cost in order to protect oneself from falling felines or bovines?

Just like my bestie from India, has slowly learned the various cliches, idioms, metaphors and slang abundant in our weird English language, she still sometimes gets confused and AWEnestly, it is so funny to hear her strong Indian accent saying something so weirdly English (Come on, she's gorgeous, fun, and young, she has to have something I can abuse her about). Just like a non-native English speaker, Ryan can learn and memorize idioms, metaphors and slang, but, having such "weirdness" become part of his English repertoire probably will not happen. Memorizing such English "weirdness" and sort of understanding idioms and metaphors, doesn't necessarily mean they make logical sense to Ryan, and my boy is all about being logical. Being logical, being literal, helps Ryan makes sense of a confusing world. As his mother, who knows him better than anyone, you would think by now I would understand this, but, sometimes I take for granted that some of my weird English phrases make absolutely no sense to him.
 
A perfect example happened on one of the 72 snow days we had this winter (it sure felt like 72 snow days). It was one of those days where it was icy and the roads were hazardous just in time for the morning commute and the weather men predicted a worse scenario than what actually occurred. By noon, the snow and ice had melted and the sun was shining. As Ryan and I headed out to the grocery store he said, "I can't believe we didn't have school today." "Tell me about it.", I replied. Without missing a beat Ryan said, "I just did tell you about it. Didn't you hear me? Maybe you are going deaf." Yes, literally, Ryan did just "tell me about it", but, figuratively, he wasn't going to "tell me about it" again. I smiled the entire way to the grocery store, but, still wondered how much weird English language Ryan misses in social conversations. It makes perfect sense that Ryan chooses to stay quiet, to avoid social settings when the words he is trying to understand are so freaking weird.
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Ryan and his speech therapist worked on idioms once upon a time and during that time, I bought Ryan this Dictionary of Idioms book thinking Ryan could memorize them and not feel weird about our weird language. Thinking that if Ryan just read the book, memorized some of the more common idioms, he might not feel like his peers are speaking a foreign language. Ryan never cracked the cover because AWEnestly, he could care less about idioms. Idioms don't make sense, to a literal thinker. Idioms are illogical and so why would Ryan waste "a penny for his thoughts" on something so ridiculous. Ryan has learned to recognize some idioms, but, chances are, no matter how much I am rushing him in the morning, screaming for him to put his shoes on and brush his teeth, Ryan will never tell me to "hold my horses" because clearly I don't have any horses and even if I did, a horse would be much too big for me to "hold".

As Ryan's mom, I try to speak in a way Ryan understands, but, since idioms, metaphors, and slang have been a part of my repertoire for so long, it's "hard to teach an old dog new tricks". So on particularly tough days, days when autism has a stronger hold on my boy's brain and days when my 40 something hormones have a stronger hold on my brain, and I'm trying to get through to Ryan by telling him he's "making a mountain out of a mole hill" and that by yelling at me is only "adding fuel to the fire" and that if he keeps "getting under my skin", I'm going to "hit the roof" and he most assuredly is going to "be in the doghouse", would do nothing to resolve the situation. In fact, Ryan would look at me like I was speaking Hindi or some other language he does not understand. My dear old friend, Clueless would be sitting on the side of Ryan's bed "in stitches" at my stupidity. 
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If Ryan cared enough to interpret my idiotic idioms, he would assure me that he cannot make a mountain out of a molehill because he does not have heavy equipment machines at his disposal and even if he did, he is not allowed to operate them. Ryan would also point out to me that the gas cans are in the garage and that on the side of the gas cans it reads, "Danger Extremely flammable" so even if there were a fire in his bedroom, Ryan would never add fuel to the fire, instead he would flee the house and dial 911 as he has been instructed to do. Ryan would logically point out that he is entirely too big to "get under my skin" and that getting under anyone's skin would require cutting their skin and making them bleed and since Ryan is not a fan of blood, he would choose to stay outside of my skin rather than under it. After discussing the dangers of climbing on top of the roof in order to "hit the roof" Ryan would then remind me that dog houses are for dogs, not people, and that our dog doesn't even have a doghouse so obviously there is no way Ryan could be "in the doghouse". See, now who makes more sense, Ryan or me? 

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Concrete, literal thinkers have no time or room in their black and white brain for idioms and AWEnestly, who can blame them? When you stop and think about them literally, they make no more sense than someone speaking a foreign language you have never heard before. Clearly, the guy at Game Stop will not take my arm and my leg instead of cold hard cash for the latest Mario game even though I have assured Ryan, that the game "costs an arm and a leg". And although you may have reached your limit with all the crap that happened in one day, and you can't take one more bad thing happening, a piece of straw will not break a camel's back. Camel's are very strong animals, as are their backs, which is evidenced by people riding on camel's backs across the Sahara Desert. And even though you spend hundreds of dollars on your new dress, shoes, and accessories in order to look hawt at your upcoming class reunion for that old flame of yours, no matter how much your shoes cost or how many lines that Botox erased, that old boyfriend will not "eat his heart out", unless of course your high school boyfriend's name was Hannibal Lecter.

My bestie from India has been in this country for 12 years, ironically, Ryan has been in this world and this country (only) for 12 years too. My girlfriend and Ryan couldn't be more different socially. Her social circle and friends on Facebook are in the hundreds, Ryan's circle is in the single digits with no Facebook account, however, when it comes to understanding and interpreting the weirdness of the English language, they have both had their misunderstandings, confusions and funny moments. The English language may not be hard to learn, but, it can be weird in it's interpretations with all it's metaphors, slang, and idioms. Misunderstandings, misinterpretations and getting the wrong idea happens frequently which we now understand doesn't make the speaker "weird", just the language.
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Just like Ryan may look at you creepily if you tell him your going to "lose your shirt" at the casino, you may look at my Indian British influenced girlfriend creepily if after a day of shopping with her, she asks you to pop your "dickie". Regardless of how much money you may lose at the casino, you will not walk out of the casino shirtless and my friend who wants you to pop your "dickie" (which may sound horribly forward, after only one shopping date), does not want you to pull your pants down, all she wants you to do is open the "trunk" of your car where her shopping treasures are located. The weirdness of language can lead to weird, but, funny moments, that leave you feeling like "a fish out of water" or make you want to "bite your tongue".

When I hear my friend speaking Hindi, which is "all Greek to me", I recognize that getting Ryan to speak in idioms or metaphors is like asking him to speak a foreign language and that I'm "barking up the wrong tree", so I have stopped "beating a dead horse" and put the Dictionary of Idioms away. Ryan may not memorize idioms, metaphors and slang, in order to enhance his pragmatic speech, but, as with so many things in the world of autism, I have learned, that there is "more than one way to skin a cat" so, even though Ryan may be a "tough nut to crack", I keep in mind that "Rome was not built in a day" and when it comes to helping my son succeed, I will never, ever "throw in the towel". 

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Sometimes his "bark is worse than his bite", especially when he is as "mad as a wet hen", but, "make no bones about it", my boy loves like no other.
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Champions (noun) and Their Champions (verb)

4/2/2014

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

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

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

PictureI'm no Misty May-Treanor, but, I got Bruce beat.
It would be delightful if someday Wheaties would have an autism champion (verb) on the front of their box, but, chances are, that won't happen. So, in order to make up for General Mills' lapse in judgement, I want to make sure the champions championing autism awareness are visible today. These fighters, these tigers, are not roaring because they want to be difficult, these champions (verb) are roaring because they need to be heard since they are "fighting on behalf of someone else"...their child. If they don't roar, then who will? 

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

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

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

To the insurance companies (whom AWEnestly, I have NO sympathy for), who don't understand that a trip to the dentist is like a trip to Hades for our kids, we are not trying to harass you with our repeated phone calls or get your fired when we ask to speak to your supervisor. We need the right code for the right surgical center so our child can get a cavity filled without fire and brimstone raining down on them in the dental chair. Our kids need good dental hygiene, and we champions will walk through fire to ensure you pay for some of it (then curse all insurance companies to Hades when you fail to pay a cent).
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We are the voice, the fighter, the educator, and the tiger. We champion for our kids whose communication struggles makes it easier for them to remain silent. We champion for our kids who hate the feel of leather boxing gloves. We champion for our kids who cringe at the sound of a deafening roar. We will continue to argue, to fight, to walk through fire in order to champion our champions, and even though you may never see our face on the front of the Wheaties box, I promise you will always hear us ROAR.

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Small Talk is BIG

3/27/2014

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For those of you who know me personally, you know I have been blessed (or cursed, depends on how long you have to sit next to me) with the "gift of gab". It's very rare, that my mouth isn't open and moving. Even as I sleep, my mouth hangs wide open, as I mumble and chat with the folks who are brave enough to enter my dreams. This gift of gab is not new, I'm pretty sure I came out of the womb talking. Teachers in elementary school gave me the nickname, "Chatty Kathy" (I'm a K, not a C), just like the very scary, Chucky's twin sister, 1960's Chatty Cathy doll that could "chat" (and possibly kill you in your sleep) when you pulled a string on her back. 

AWEnestly, look at that doll...is she pointing at me in a "I'm coming for you next?" kind of way (shudder)? That doll is so freaky and as a fourth grader had I known how offensive the nickname "Chatty Kathy" was, I would have put one of those creepy, possessed looking dolls under my teacher's bed with a toy knife in it's hand. Who needs a tack on teacher's chair, when a Chatty Cathy doll lies await under teacher's bed? Dan, who is not a small talker and who amazingly has not put a Chatty Cathy doll under our bed to scare me into silence, once told me that I could befriend and small talk with a fence post. As long as the fence post occasionally creaked to show some type of interest in what I was chatting about, I probably could befriend and chat with a fence post. A fence post isn't nearly as scary as Chatty Cathy.

PictureBreaking Bad, Sony Pictures
Ok, fine, my dirty little secret it out. I'm terrified of creepy looking dolls, and I'm a chatter box blessed with the gift of gab who can engage in small talk all day long with my blah, blah, blah, Chatty Cathy mouth... often at tongue straining speed. If any kind of alcohol or medication is added to my gift of gab, it's highly recommended that anyone within 50 yards of me, grab some ear plugs and an interpreter in order to protect your hearing and decipher what the he** I am saying. Even during my college days, I never "experimented" with stimulants because I felt certain that between my already hyper, overstimulated personality and my gift of gab, someone would have surely tossed me over a balcony. I promise you, had I been given an opportunity to score some of Walter White's highly addictive blue meth from the series Breaking Bad, regardless of it's 99% purity, I still would have never become a meth head junkie. Walter would have shot or poisoned me within three minutes of my first meth buzz. I would have never stood a chance of becoming addicted. 

Good thing we have no balconies at our home and it's probably in my best interest to never have my science loving, money loving Ryan ever meet up with Walter White because Ryan does not believe my gift of gab is a gift at all. In fact, to Ryan, most of the time I am just noise...noise that makes his "brain hurt". Ryan loves me to the sun and back, but, as far as my small talk gift of gab, well, quite frankly, Ryan would happily have me re-gift my gab and Dan would probably help Ryan wrap it. Re-gifting my gab is a much better scenario than having those two inquire with Walt how big of a barrel they need for me.
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Ryan loves small talk about as much as Walter White loves the DEA. Autism, or Autism Spectrum Disorder (ASD) is a social communication disorder. Many people with an ASD, have difficulties with socialization and communication and Ryan is no exception. Small talk involves both communication skills and social skills and Ryan struggles with both. Ryan is also a perfectionist. If Ryan can't get something right, or if Ryan thinks he won't get something right, Ryan is not going to risk being wrong. So, whatever this "something" is, just ain't gonna happen. This is why, more often than not, Ryan remains silent in social settings. 

Small talk is a way of social bonding, a way of trying to fit in or be accepted. Ryan spends very little time concerning himself with fitting in. That's not to say that Ryan does not care about fitting in, but, socializing, bonding, and fitting in exhaust Ryan. Socializing for Ryan means too many social cues that he misses, too many words with double meanings, too many facial expressions that are hard to read and too much body language that is hard to interpret. More times than not, Ryan decides that small talk and "fitting in" is all just way too hard and not worth the risk, so he frequently chooses to be alone. Small talk is also used as a way to start or end a conversation or to fill in that awkward silence in a conversation many of us find uncomfortable. Since conversing is difficult for Ryan, and since silence to him is not awkward, but, a welcome relief, it makes perfect sense that for Ryan, small talk is BIG.

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Back when Denial and I were often engaging in small talk, Denial would tell me that if I just kept talking at, I mean to, Ryan, he would eventually respond. So, every day on our way home from daycare, I would barrage Ryan with questions about his day. Just trying to prompt him to say something. "What did you have for snack?"..."Did you take a nap?"..."Did you make any crafts?"...and my favorite, most terrifying question that always came last, "Who did you play with on the playground today?". All my questions would go unanswered as Ryan stared out the car window, wishing there was a balcony to toss me and Denial over. I kept thinking, every single day, if Ryan would just answer one question, if he would just connect with me on one thing, I would be so much happier. Just like my friend, Fence Post, I felt certain that all my chatter, all my small talk would eventually make Ryan creak. Funny, how in those moments when I was so worried and so scared and wondered, "Why doesn't he respond to me?", Ryan's happiness didn't come into my mind. Getting Ryan to small talk was for me, not him. All Ryan wanted after a long day of daycare, school, and expectations, was to finally be in a place where he was safe, loved, and free of the stress of what he was expected to say next.

When Ryan continually failed to engage in my small talk chatter, or in small talk with friends, Denial assured me that Ryan just didn't care about friends, so small talk wasn't even necessary. This "didn't care" conclusion that Denial enabled me to draw, lead to many quiet car rides home with only Spongebob playing in the DVD as company. For Denial to have me believe, or anyone believe, that Ryan doesn't care about the social bonding of small talk or making friends is unfair. Certainly, small talk may not be as desirable for Ryan as it is for his mother, Chatty Kathy, but, just because Ryan's small talk is minimal, doesn't mean he cares little about acceptance, it just means that for Ryan, it is easier, and safer, to stay silent. After all, with silence, there is no chance of social mishaps, there is no chance of misinterpreting what someone means, there is no chance of saying the wrong thing at the wrong time, so, there is no chance of getting hurt. Whether he likes it or not, Ryan needs to learn what to say, and how to effectively communicate to survive in a world full of Chatty Kathy's. Coming from the heart of a Chatty Kathy mom, I hope that one day Ryan will not only know how to small talk, I hope that maybe one day he will actually want to chat with me.
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Ryan has worked with Mrs. P, an amazing speech and language therapist, for five years, not because Ryan is non-verbal, not because he has poor articulation, but, mostly to help Ryan with his social speech, to help him engage in small talk. We all know that regardless of a designer Autism label, small talk is big when it comes to relationships with peers, teachers and colleagues. Ryan can do it, he can be taught to small talk, but, chances are, small talk for Ryan will always be BIG. Mrs. P has given Ryan the foundation he needs to small talk with his family, his friends, and his teachers, but, Mrs. P, no matter how wonderful she is, can't make Ryan want to do it. Autism may always have a hand ready to cover Ryan's mouth and keep him silent, but, maybe one day, Ryan will willingly and confidently push that hand aside. I have seen it happen...on rare occasions.

Needless to say, for a Chatty Kathy, someone who rambles on and on and on and on and on, having my son not engage in small talk with me, regardless of the reason, is still difficult. The AWEsome thing about my attempts at small talk with Ryan now is that Ryan has the communication skills to tell me, I'm "setting his brain on fire", or that I'm "speaking gibberish" or that he has "no possible idea" what the heck I am saying. Even Chatty Kathy knows when someone is nicely telling her to shut the he** up. I recognize that when Ryan gives me an inch, just a tiny hint of his willingness to engage in some small talk, I go for the mile, speaking gibberish at a high rate of speed that gets muddled up somewhere between Ryan's ears and his brain. In my hyper-crazed excitement to find Ryan, I wind up losing him again. Someone needs to tie a knot in this Chatty Kathy's pull string.
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You can only imagine that on the rare occasions that autism releases it's hand from my boy's mouth, and he does decide to strike up some small talk with me, I feel like I am getting a glimpse inside his soul. I never, ever take these moments for granted and I try so hard to tape Chatty Kathy's mouth shut. A few weeks ago, while driving to pick Kyle up at baseball, Ryan said, "Are you aware that the mineral fluorite has the ability to glow in the dark?". I almost hit a pedestrian. First of all, Ryan STARTED the conversation, second of all, he asked it in the form of a question (never happens unless it's "Where's my lunch?") and finally, I had no idea what he said because for once his words sounded like "gibberish" to me. Fluorite? What in the name of Sam Hill was fluorite? I tried to wrack my brain with a smart mineralogist type of response. Turns out, my, dumb mother response of, "I had no idea!! What else can you tell me about fluorite." was all I needed for my brilliant son to chat for a good five minutes about minerals. 

Thank God for minerals, rocks and an AWEsome science teacher. Those five minutes were a gift so beautiful and so amazing that my gift of gab only interrupted twice...and he called me on it both times by saying, "I wasn't finished yet.", and that's when I almost struck a light pole (Clearly Ryan's moments of small talk should not happen while I'm driving.). "I wasn't finished yet.", meant Ryan didn't give up, he didn't shut down because mom couldn't shut up, small talk got hard, but, Ryan stuck it out. Autism raised it's hand to cover Ryan's mouth and he crushed that hand with a big chunk of pyrite (aka Fool's Gold...I knew that one). Wow! It was without a doubt, the most amazing small talk, I have ever engaged in...and I'm still gushing over it.

As the van slowly pulled up to the curb at the high school, the magical moment ended, but, my heart continued to soar. Ryan crawled into the back seat, making room for Kyle, and turned on Spongebob. Our small talk had ended, but, it gave me a glimpse into my son's future. I pictured him surrounded with other sciencey like, smarty pants mineralogists in white lab coats discussing minerals (I realize mineralogists may wear polo shirts instead of lab coats, but, please let me have my moment) and Ryan not only engaging in the small talk, but, enjoying it. Surrounding himself with like minded people discussing something he is interested in, may be all Ryan needs to have small talk not be so BIG. I just hope that this group of white lab coat wearing mineralogists need a dumb, old Chatty Kathy to work in the lab cleaning up mineral dust and answering the phones, so I can continue to witness my AWEsome boy, finally being so comfortable with who he is, that small talk comes as easy as pulling a string.
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Said Ryan never...yet.
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    Definition of Awe:
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    spelling AWEtism.

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