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Beauty is in the Eye of the BEEholder

5/1/2014

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

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

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

Ryan's fear of springtime flowers, which draw deadly, stinging bees, is no less extreme than my snake/clown phobia. No matter how many times I have explained the beauty of flowers and the sweet nectar that draws the bees in, Ryan does not see the beauty of a daffodil or an azalea bush, he sees pollen sucking deadly bees, horrifically swollen bee stings and sticky antiseptic followed by the suggestion of (shudder) a band aid. Just like Ryan's fear of bees blocks his ability to see the beauty in flowers, and my fear of clowns blocks my ability to see the beauty in a child's smile at the circus, people's fear of "different" may block their ability to see the beauty in a child who does not look or act the same as others. Beauty really is in the eye of the beholder. The phrase, "beauty is in the eye of the beholder" means that each person sees beauty in a different fashion. In other words, different people have different ideas about what is beautiful.
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For years my friends Denial and Clueless tried to make me miss out on Ryan's beauty. They tried to convince me that wearing the cool clothes, having the cool haircut, wearing the cool sneakers and acting like every other kid on the playground is what would make Ryan beautiful. The sometimes odd facial grimaces, the weird noises, and the repeated scripting, Denial said, was not beautiful, and others would not find beauty in such obvious differences either. So, just like the creepy clowns at the circus, who hide who they really are behind makeup and clothes, I tried to camouflage my boy and his differences, by making him someone he was not, because unlike the circus clowns, I did not want people pointing and laughing at my son.

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

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

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

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

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

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

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

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

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

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

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

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

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BEAUTIFUL!
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The Early Bird Gets the Choice Donut

3/6/2014

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I looooove Saturday mornings...sleeping in, no early morning kid activities, and long leisurely breakfasts in my jammies with my hot off the presses, just delivered on Friday, People Magazine. My little piece of heaven. So, when I have to get up early on a Saturday, I am not only tired from celebrating the arrival of the weekend by watching three back to back episodes of Breaking Bad until the wee hours of the morning, I'm grumpy too. "The early bird gets the worm", so goes the old proverb, but, this past Saturday, Ryan and I weren't going for worms (I could just hear his annoyance at such a stupid saying), we were embarking on a 45 minute road trip with a quick stop at Dunkin Donuts. Here's the thing, Dunkin Donuts makes donuts ALL DAY LONG. Oh sure, they want you to believe that their donut baker lumbers out of bed with the early bird while moaning, "Time to make the donuts" so you feel rushed to be the FIRST ones in line for the freshest, choice donut, but, it's all a scam. You can be the late bird and still score a tasty, trans fat and cream filled donut. 

Ryan was about as thrilled as I was with the early morning Saturday change in routine, so instead of telling him the "early bird gets the worm" (eyes roll), I told Ryan the early bird gets the choice donut. Yeah, I'm as big of a phony as the "time to make the donuts" guy. Ryan whined, complained and stumbled out of bed and refused to brush his teeth because it would "ruin" the taste of the coveted donuts (he popped in a piece of gum after the donuts which I know a dentist would not approve of as a toothbrush substitute). Before we headed out the door, I was ordered to fill Ryan's Thermos with Welch's Grape Juice because my boy's elephant memory, recalled that Dunkin Donuts does not have Welch's Grape Juice and that their orange juice has pulp in it (the horror). We early birds, were so early, Ryan and I even had time to go inside Dunkin Donuts and peruse the plethora of choices rather than risk a donut catastrophe at the drive thru. Once we recovered from the near meltdown that took place when my early bird spied the strawberry iced donuts being placed on the shelf after our order was placed, bagged and paid for (clearly when it was "time to make the donuts" the strawberry iced ones weren't at the top of the old, tired baker's list), we were on our way, to our real destination.
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Ryan loves a road trip, and I love having him in the passenger seat next to me (even though I stress a little because I know he is safer in the back, but, now that he is 12 and the law says he can ride up front, there is no going back...figuratively and literally). Quality time, just the two of us, enhanced with a little donut sugar high. I tried for a while to chit chat, but, after being grunted at numerous times, I gave up and was equally happy listening to my boy singing, scripting and laughing at whatever show he was watching inside his head. In that moment, I sort of related to that early bird and his successful worm hunt, although I was tired and longed for my leisurely breakfast while happily admiring Matthew McConaughey in a black tuxedo (sorry Matthew, the white was a little too Saturday Night Fever for me) in People, maybe getting up early, really did enable me to score the coveted worm.

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Although I was enjoying the morning, I didn't get out of bed early and leave the Oscar predictions in my latest People Magazine sitting on the kitchen table for Dunkin Donuts. Nope, our destination was a Music Festival at a local college for piano students. This was Ryan's first time attending so I had no idea what to expect and for a boy who likes a plan and struggles with "new", he didn't know what to expect either. Ryan's fabulous piano teacher had written out a schedule for him instructing him when to be where. First up on the list, was a workshop on the Progression of Left Hand Accompaniment Patterns. What? I made Ryan LOL, even though he shushed me with embarrassment, when I did my best Charlie Brown's teacher impersonation. I am completely illiterate when it comes to anything music, so this professor's "wah, wah, wah, wah, wah", was like a foreign language to me. I tried to pay attention, but, after Ryan moved two rows in front of me, not because I was such an embarrassment to him, but, because the professor told him to (although, I'm sure he was relieved to put some distance between himself and his musically inept mother), I found my mind start to wander. 

As I sat waiting for the workshop to end, I began to worry about Ryan's "adjudication" on his piano skills which would be next. Ryan would be judged on various piano playing skills while in a room...alone...without me. As my anxiety began to escalate, awaiting this so called, "adjudication", I couldn't help but recall a different type of adjudication that I regularly attended as a juvenile probation officer. Waiting for a judge to make a different kind of adjudication for a different kind of kid. As a juvenile probation officer, it was my job to provide testimony to the court about the juvenile who stood next to me. I couldn't help but compare my role as a mother whose job it was to protect, advocate and fight for my child being that much different, yet, I struggled with whether or not Ryan would object to my testimony or if the judge would find my testimony relevant. 

I wondered, if at this adjudication for my child, do I present the facts...all the facts, or do I let Ryan take the stand on his own without my testimony? Will Ryan incriminate himself when he doesn't make eye contact with the judge? Will the judge think Ryan is rude if he forgets to say, "thank you" or ignores a question the judge asks that has nothing to do with the piano? What if Ryan drops his paper and refuses to pick it up because he hates the feel of paper? Will the judge think Ryan is not taking his adjudication seriously? Will Ryan's flat out refusal to put on a name tag because stickers have caused him anxiety since he was two, make him appear defiant? If Ryan refuses to take his coat off because the hot air blowing from the vents makes his skin feel dry and scratchy, will the judge think Ryan has no respect for the Music Festival, the adjudication and the piano itself? There was a whole lot going on in my scary head for a 45 minute piano workshop. 
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This battle going in my psyche came to a standstill when I watched Ryan practice in a sound room minutes before his adjudication. It was then that I decided not to hang my kid out to dry (he would have assured me he was not wet). I decided that if I don't want a label to define Ryan, even when his quirks and social struggles make him stand out, then I can't define him with that label at every turn either. There are times when The A Word, has to be mentioned...at a 504 Plan Meeting with school officials, at the dentist office when they realize total sedation will be necessary to fill a cavity (or three), at the pediatrician's office when a strep test is necessary, or at the hair salon when it's a new stylist, but, not at a piano adjudication. This was not because I didn't want Ryan to do well. It was not because my lack of interest in music minimized the importance of music to my son. The reason I let Ryan take the stand on his own was because unlike those courtroom adjudications when my words were needed to describe the juvenile standing before me, my words were not needed before a judge in a sound room. Sharing words....sharing The A Word, was unnecessary because this was music and music is one place where Ryan's quirks and differences disappear into the ivory of the keys.

I wished Ryan luck, although I knew it was not necessary, and Ryan walked past me, piano books in hand, a smile on his face and no name tag whatsoever. As I heard the judge greet Ryan, Ryan mumbled a monotonic, "hello", then he quietly closed the door and left me to wait on the other side. This was new for me, being on the other side of the door, not being Ryan's voice. Although I trembled with nervous energy, I had never been more proud of my son. As I listened through the door, frustrated that I didn't bring a cup to hold against the door to enhance the sound (AWEnestly people, I can't cut the cord completely), I did not hear Ryan speak in his British accent scripting Stampylonghead in a diatribe about Minecraft, I did not hear Ryan stumble over his words with his sometimes "cluttered" speech and I did not hear Ryan complain about the heat blowing out of the vents. All this spying, worried mom heard, was the beautiful sound of Ryan's fingers finding the right chords, timing his intervals and "expanding the use of the keyboard" as Ryan's label, his quirks, his differences, dissipated with each beautifully played note.
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I all but fell into the room once Ryan finished and opened the door, and I quickly and discreetly wiped away my tears so Ryan wouldn't reprimand me for being "too proud". Ryan bounced out of the room and said, "That judge guy was AWEsome and he said I did great!". In fact, "that judge guy" gave Ryan the highest marks, "superior", in every category with the exception of one "excellent". Clearly, Ryan did not need my testimony, the facts of who he is and what he is capable of, were evident without any input from me. I did not need to share The A Word with the judge who adjudicated my son because he did not need words or a label to see Ryan's ability. There will always be times when Ryan's quirks will make me want to quickly defend him by throwing that A Word under the bus, but, more and more, Ryan doesn't need excuses, labels, or me defining him. Ryan is finding his own place in the world, and as he has told me time and time again, "I don't feel different, I just feel like me."

This is one early bird, who is so glad that my love of sleep, a late breakfast and a date with People Magazine did not cause me to miss the worm. Not because I wanted the fattest worm or the choice donut, but, because I got to spend a day with someone who constantly puts the AWE in AWEsome. Someone who will never let a label, a judge or even his mother, define him. Some days it takes me longer to wake up than others. This past Saturday, even with my donut sugar high, it took me all day to wake up, but, when I finally did, I realized that even a full page spread of Matthew McConaughey playing strategically placed bongos in People Magazine, takes a back seat to the wonderfully gifted piano player sitting in the front seat next to me. 

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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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    Definition of Awe:
    "a mixed emotion of
    reverence, respect, dread and wonder inspired by authority, genius, great
    beauty, sublimity or might." Yep, someone should have consulted a mom 
    before
    spelling AWEtism.

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