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Yep, Still Hurts

10/29/2014

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It was over 35 years ago, but, I remember it like it was yesterday. I was on my way to a neighborhood shindig at our local township building. It was summer, it was hot, and I was wearing terry cloth shorts and a matching terry cloth shirt that tied at the shoulders (it was 1979 people, and I was stylin'). As I shrieked goodbye to my mom, I ran out our big, heavy, wooden, front door and slammed it closed as I had hundreds and hundreds of time before. This time, however, I left a little something behind.

In my haste not to miss out on the shindig, the shindig that I whined all day about attending, the door closed too fast, or I moved too slow, and the tip of my ring finger remained behind...in the latch...where finger tips aren't suppose to remain. I felt the pain, I saw the blood, and that's when the screaming began.

"Mooooom, I cut my finger off in the door!", I screamed through hysterical sobs. "Calm down, you probably just pinched it, let's go rinse it off." (I was unaware a "pinch" could cause so much blood). "Oh my God, you did cut your finger off!" my mother squealed in a hysterical voice that nearly matched my own. Once I saw the panic in my mother's eyes, I knew neither one of us were equipped to handle such an injury, so through my hysteria, I sobbed, "I want Dad!".

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After three sets of eyes determined the fingertip was indeed gone, off to the ER we went with said fingertip placed gently in a Ziploc bag of ice by my much calmer during a bloody crisis father, only to be told upon our arrival that the end of the finger was too small, too insignificant to reattach, so I would just have to live without it. Of course, besides the pain, I worried how my finger would look, since it clearly would not look like the rest of my fingers, or more importantly, look like anyone else's finger in fifth grade. The doctor warned me, it would "look fine", but, even though in time my finger would heal, without that oh, so insignificant fingertip, the nerves would be more exposed, more raw, and would lie closer to the surface where just the slightest bump or whack would make those nerves feel very ouchy and painful, regardless of how much time would pass.

The doctor was right. It's funny how even after 35 years, that finger some days still feels pain that is similar to the day my fingertip was chucked in the hospital waste disposal bag. You would think over time, the pain would dull and those nerve endings would just get used to being a little more exposed and they would sort of toughen up, and I guess in some ways compared to that first day and those first few weeks, the pain has dulled some, but, under certain circumstances, when just the right nerve is hit, the pain is as fresh as it was the day I ruined my favorite light blue terry cloth shorts. Damn, those shorts were cool.

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I was reminded of that long ago distant finger injury just last week. No, I didn't whack my finger on the granite counter top or hit my finger just so on the dog's giant canine tooth while fighting him for his beloved frisbee (which is truly quite painful). No, this long ago forgotten pain didn't have anything to do with my fingertip-less finger, this pain came from an injury to my heart. And just like the damage to my finger that happened so long ago, the pain to my heart is duller now, but, occasionally, a little jab to that wound and I am reminded of how exposed my nerve endings still are, and that raw pain, regardless of how much scar tissue has built up or how much time has passed, the wound definitely still hurts.

Over the summer, Ryan had an updated psychological evaluation. Ryan had not had any type of assessment since his first diagnosis when he was 5. The evaluation was conducted in order to determine if Ryan's ASD diagnosis was having any type of impact on his learning. Ryan did beautifully in school last year, making the Honor Roll every marking period, but, in order for Ryan to achieve those grades, Ryan's brain has many more obstacles to overcome in an effort to learn than his classmates without an ASD.

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When the report came on Friday, even though I knew what would be in that dreaded report, even though there were no big surprises, and even though I thought I was totally prepared to read the report because I thought that old nagging heart wound would have healed by now, I was absolutely positively wrong. When I read the words again, when I saw the words and felt Ryan's struggles in black and white again, I could feel the scab on that old wound tear open. I could feel the scar tissue being pulled away and exposing those raw nerves that I thought had dulled over the years, and the pain felt just like it did when that door slammed, not on my finger, but, on my heart, all those years ago when I first heard The A Word.

Words like "little eye contact", "flicking hands", "language deficits", "executive functioning deficits", "ASD" and struggles like "poor social skills", "anxiety", and "discrepancies between inherent ability and performance" felt like that front door slamming again and again, but, this time, all ten fingers remained intact, it was my heart that was left bleeding in the latch, blood dripping all over my spandex yoga pants, (I gave up terry cloth in 1982). Seeing the words Autism Spectrum Disorder again on paper, the letters and their meaning as evident as my missing fingertip once the blood was washed away, was still painful. Yeah, no matter how much time has passed, it still hurts.

Like I said, there was nothing in that report that surprised me, and no, I didn't think the doctor would say that Ryan no longer had autism.....or did I? Denial was next to me while I read the report and she can be very, very persuasive, so maybe there was just one tiny part of my wounded heart that believed, maybe they got it wrong all those years ago. Maybe, just like I closed our front door too fast, accidentally slamming my finger, maybe someone closed the neurotypical door too fast accidentally slamming my heart? As I sat next to Denial, absorbing every word of that report, I knew no one intentionally hurt my heart, but, I also knew that the ASD diagnosis was right and that no one slammed the neurotoypical door, but, instead, someone opened the autism door and in doing so, opened my heart. A heart that has taken a long time to heal and that occasionally, if poked, slammed, or whacked just the right way, exposes those sensitive nerve endings that still tend to sting a little.

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Just like I don't spend much time thinking about the days before I smashed my finger in the door, wishing for my missing fingertip (or wondering what the heck they do with fingertips that can't be reattached), I don't spend much time wishing for the days before my heart was so wounded by that 6 letter A word. Sure, there are days that just like a little whack to the end of my finger makes me scream, cuss, and kind of want to vomit, there are days, like last week, where my heart is hit in just the right spot that makes that old wound start to fester.

They say "time heals all wounds", but, I don't know if all wounds "heal" or if we just get really good at covering the scars, doing what we can to keep those ever present raw nerve endings tucked right below the surface where they don't hurt so much.

Just like a little whack to my finger triggers a pain from so long ago, that pain also helps remind me that as traumatic as the events of that day were at the time, that I have lived a happy, beautiful life no less wonderful had that finger remained intact, looking just like everyone else's. Without the protection of that much needed fingertip, the nerves of my finger are exposed, sometimes leaving my finger vulnerable to pain, just like Ryan's ASD diagnosis leaves my heart vulnerable to pain sometimes too. However, maybe my heart needs an occasional whack, to remind me how AWEsome and wonderful my life is despite that long ago injury. Sure, there are days that the nerves from that injury are more exposed, the pain bubbling just below the surface, but, most days, the pain is all but gone and I'm left with only the tiniest scar, a mark that only those closest to me can see. 

Ironically, just days after I received Ryan's updated psychological evaluation, days after the wound to my heart was re-opened, my heart was triaged by two fabulous teachers (teachers wear many, many hats). These teacher sent me emails that not only shared how well Ryan was doing, but, shared that my son was being a leader, that my son was socializing with peers, that my son was outshining his fellow classmates in both music and computer aided drafting. With every word I read, I felt my wound closing again. A wound that I feared would never heal, with a bandage I did not know existed. The scar is still there, but, with each passing day, it becomes less visible, and I remain grateful for the occasional pain that reminds me of how much healing there has been.

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Seeing how far he has come, has helped my heart heal, but, there are still days when that old boo boo reopens.
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The Hormones Are Coming, the Hormones Are Coming

10/23/2014

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Saturday night was date night for Ryan and me, but, whatever you do, don't call it a "date" because "a date with your mother is creepy". Ok, fine, on Saturday night, Ryan and I had dinner...just the two of us, we hung out....just the two of us, and we watched The Hunger Games...just the two of us, but, it was not a date, it was just, well...the two of us.

While snuggling on the couch, with my not a date son, I was relishing our snuggle time since now that Ryan is an official teenager, cuddles with Mom on the couch, or anywhere for that matter, are few and far between. Basking in the moment that I knew would end all too quickly, I would occasionally glance over at Ryan, the glow of the television and the orange Halloween lights casting shadows that danced across his beautiful face, and I would smile. As I happily studied that face, I was amazed at how in just the past six months, Ryan's face has become less boy and more man. This was even more evident to me as one particular "shadow" seemed to remain on Ryan's face regardless of how bright The Capitol of Panem's lights shone forth from our television screen. This "shadow" was located right above Ryan's upper lip. I smiled and thought to myself, "chocolate milk mustache", until I remembered Ryan does not drink chocolate milk.

Like any good mother, who in an instant forgot about the threat of Ebola, I licked my finger and tried to wipe the "shadow" from Ryan's face, which almost put an end to our not a date, date night. I'm not sure who was more horrified, Ryan, from my germ ridden, saliva face washing, or me, once I realized that "shadow" was not chocolate milk, Oreos, or leftover Little Ceasar's Pizza. Nope, no matter how much mom saliva can remove, it cannot remove darkening peach fuzz that is slowly morphing into whiskers. Katniss Everdeen's fight for survival as she fled from the onslaught of deadly Tracker Jackers was quickly forgotten as my entire body wanted to scream, "Who the hell cares about Tracker Jackers....the hormones are coming....the hormones are coming!".

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Those awful hormones may not be as lethal as Tracker Jackers, but, they are as sneaky as those British Redcoats. Sneaking in at the dead of the night, while emotionally fragile mothers lie sleeping dreaming of days gone by when our babies still crawled on our laps, held our hands in public, didn't talk back to us, and believed no one else existed in the world besides their mama. Those traitorous hormones wash ashore and quietly take our sweet, snuggly, angelic children and replace them with pubescent, hard to reach, hard to understand, hard to snuggle teenagers, all while leaving a path of destruction in their wake.

Unlike the American Colonists, I did not have Paul Revere come galloping in on horseback and screeching through the streets, warning me of this hormonal uprising. There was no townsman perched aloft in the church tower holding a lantern to warn me the hormones were coming, "one, if by land, and two, if by sea", nope those hormones washed up on my shore and took me completely unaware with no warning whatsoever. I swear, I never saw them coming.

The American Colonists had scouts on the lookout for those sneaky Redcoats, but, me, well, I only had Denial keeping a watchful eye for hormones with me and clearly she was NOT paying attention while perched in her church tower. For example, when Ryan would call out my name from upstairs and I assumed it was Kyle due to this large man voice coming from Ryan's room, Denial assured me that it was pollen induced allergies, not hormones effecting Ryan's voice. When Denial said that Ryan's love of Old Spice Fiji Scent deodorant was not really necessary, but, just something Ryan used to "feel grown up", I believed her, even though the scent in Ryan's bedroom last week when he ran out of that Fiji island smell told a very different story. And yeah, it's true Ryan keeps the bathroom door shut tight every time he showers, and although I wondered if his need for privacy was because of his changing body, Denial reminded me how drafty it is when you leave the bathroom door open and no one likes to be chilled when you are wet. So, of course I believed Denial when she told me that little shadow on Ryan's upper lip, must certainly be a permanent Welch's Grape Juice stain and not the start of (whisper) whiskers.

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Even though Denial assured me that we were safe and that the hormones were not going to invade any time soon, I still tried to prepare myself for their imminent onslaught by attending seminars, trainings, and reading books on Autism and puberty (not exactly easy bedtime reading folks). According to my sources, although hormones and puberty are tough for any kid, hormones and autism make the Boston Tea Party seem like....well, a tea party.

Ryan struggles with change and prefers routine, so you can understand why I chose to believe every single word Denial said rather than consider The Big Change was just a few miles off shore. Some days, Denial is much easier to live with than others. Believing the "Redcoats" weren't coming was so much easier than preparing for their onslaught, even though, a little voice in my head seemed to be getting louder and louder than both Denial and Paul Revere combined.

Some days, the voice in my head won't shut up and so many questions reverberate through my brain. For a kid who hates the feel of paper touching his skin, how in the world am I going to get Ryan to put a sharp, scratchy "deadly razor" against his skin, and more importantly, against his jugular, and assure him he will survive? Will Ryan, by no choice of his own, wind up looking like a member of the Duck Dynasty family with a beard that touches the ground? As sensitive as Ryan is, will he literally feel each and every whisker being pulled from his chin and decide immediately that a razor is a left over torture device that the Redcoats brought to terrorize Colonial Americans?

Will all that info I learned about boys and the "stuff" that goes on "down there" freak Ryan out as much as it freaks his mother out? Will he be afraid, ashamed, or embarrassed when that "stuff" starts working "differently"? Will Ryan's social struggles become bigger and more apparent as boys his age begin taking an interest in girls, going to dances, and going on dates? Will this lead Ryan to feel more "different", more awkward, more alone? Will these feelings then lead to anxiety, depression, drugs or alcohol?

See why I love Denial? I'm pretty sure even if Paul Revere would have come galloping down my street, warning me of these unwanted invaders, I probably would have knocked him off his horse. Denial is a much better friend.

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I think it's safe to assume that even if someone as watchful and sharing as Paul Revere had given me ample time to prepare myself for the onslaught of teenage hormones, I probably still would have grabbed a few militia and staged a rebellion. I guess what I need to keep in mind, is that even though the American Colonists feared the Redcoats' invasion and worried about all the damage and destruction that came in the wake of a revolution, the Colonists recognized that no matter how difficult, or how ugly it got, change was part of the transformation to a bigger, better, world filled with new and exciting opportunities. Opportunities that may have never presented themselves without those sneaky invaders washing ashore and slowly granting the occupants freedom. And in order to gain such freedom and make such progress, a little uprising from time to time may be necessary.

This is certainly going to be new uncharted territory for both Ryan and me, but, in order to move forward, we cannot cling to the past, no matter how delightfully snuggly and hormonal free those days gone by were. So while I continue to fret, worry and perseverate, I will prepare Ryan as best I can for the impending invasion, by scouring Target for the gentlest of razors and by loving him, and supporting him just like I did before the Redcoats, I mean, hormones showed up. There were 13 Colonies who fought the Redcoats, so I certainly don't plan to handle this battle alone. I will happily leave the "man stuff" for Ryan's dad to handle because, after all, my son is very literal and, well, I'm not a man with the same parts so how could I possibly know anything about said parts?! I didn't say anyone would be left unscathed in this invasion.

In the meantime, I will enjoy every single not a date, date night Ryan and I share...just the two of us....knowing full well, one day these moments will be just a beautiful memory, a page in our history. And although our history may not make it to the pages of a middle school social studies textbook, I believe for one little boy and his mother, our journey is as remarkable as Paul Revere's ride.

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Looking ahead, with the occasional glance back.
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To My Dear, Sweet Emma

10/15/2014

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Dear Emma,

When you think no one is looking, when you think no one is listening, when you think no one knows how you feel, I want you to always remember....

I see you. I hear you. I feel you.

I saw you. I saw you as a little girl when you tried so hard to make your brother see you. I saw you run to him with chubby outstretched arms proudly waving your latest artwork from preschool, so desperately wanting his approval, yet there was not so much as a glance in your direction from the brother you so desperately wanted to please. I saw you beg for a playmate in a brother who shouted, "go away", "get out" or worst yet, who completely ignored you, making you wonder if you were invisible. I saw your hope tucked secretly under your bed in the form of a drawing with each waxy crayon mark telling a story of a brother and sister playing happily on the swings, playing together and smiling, like so many brothers and sisters do. I saw your persistence when you refused to take no for an answer no matter how many times you were turned away. I saw you as you wiped away your tears, confused and saddened time and time again.

I heard you. I heard you as a little girl when you tried so hard to make your brother hear you. I heard you when you called his name again and again and again and I heard the loud silence when your calls went unanswered, knowing full well, the silence was much louder to your tender ears. I heard your muffled cries soaking your butterfly pillow as you tried to understand why your brother's words, his actions, his inactions could sometimes be so hurtful. I heard the genuine concern in your tiny toddler voice when you asked me why Ryan wouldn't let you hug him, and the even greater concern when you worried how he would know you love him without your hugs and kisses. I heard you pretend with an imaginary brother in your bedroom, a brother who played with you, listened to you, shared with you, and hugged you. I heard you giggle with joy on the occasions your real brother let you in....in his room...in his space...in his heart, quickly forgetting the imaginary brother who would still be waiting for you in your bedroom when this rare moment passed.

I felt you. I felt you as a little girl when you tried so hard to make your brother feel your love. I felt your confusion as you proudly tried to teach your brother how to tie his shoes, and rather than thank you, he shouted at you, angered and frustrated that so many things come easier for you. I felt your sadness as you watched the lucky four leaf clover you found in an open field float to the ground after you shared your good fortune with a brother who doesn't believe in luck, and proved his disbelief by carelessly slapping the lucky clover out of your hand. I felt your body shake with heartbreaking sobs on numerous occasions as you tried to understand "Why?" yet were too little to understand my answers. I felt your loneliness as you watched your brother walk along the seashore with his big brother while you, his little sister, stood by alone, invisible to him yet again.

I see you. Now, I see you as a bigger girl, yet still a little sister, a sister who is trying to understand what an autism diagnosis means and trying to find your own path on this journey. I see that the desire you have to reach your brother, regardless of the countless rejections, remains inside your tender heart as you painstakingly wrap a birthday gift you purchased with your own money in hopes of just once, pleasing him. I see your face light up when, on the rare occasion, your brother calls your name, talks to you and treats you in a way you once only dreamed about. I see your joy, your hope, your pride when he asks YOU, his baby sister, a question about Minecraft. I see you watch your two brothers laugh together, script together and tease one another, wondering if one day, it will be you.

I hear you. Now, I hear you as a bigger girl and I hear the resignation in your voice as you are ignored once again or are told to "be quiet", "stop talking" or the ouchiest one of all, "great, she's coming too" as you hop next to him in the car and glare his way and mumble, "Whatever, Ryan". I hear the once confused innocence in your voice replaced with anger, now that you are fed up, and I hear you shout, "Shut up Ryan!" or "What was that for?", or my least favorite,"You're such a jerk!".  However, the words that shoot like an arrow from my ears to my heart, are your grown up, well beyond 8 years words that you mumble as you shrug your shoulders and say, "I know it's 'cause of his autism" and then go about your business. Today, what I hear most is the silence, however, now the tables have turned and the silence is not coming from your brother, it is coming from you. The attempts to reach your brother are fewer. The hope for him to see you, hear you and feel you has diminished. There have been too many tears, too many rejections, too many slights, and too many hurt feelings.

I feel you. I feel you pulling back, protecting yourself. I feel your anger, your jealousy, your confusion, and sadly, your acceptance. I feel you slowly, quietly giving up. Before you do, I want YOU to see, to hear and to feel.

Just as I see you, just as I hear you, and just as I feel you, I also see, hear and feel your brother. I see him run to your side when a group of boys won't let you play with them and make you cry. I hear him yell at those same boys, "Do you know who that is?! That's my sister. You need to let her play too." I feel his pride, his protectiveness, and his love for you. I see him smile when you talk to one another about a Minecraft video in Minecraft language that no one else in the house speaks, that is something only the two of you share. I hear the pride in his laughter when you script a scene from his favorite show and you are spot on with your imitation. I feel his love for you when he smiles at you after you kindly share a favorite snack or treat with him regardless of how many times he has refused to share with you.

Whether it's a group of meanie pants boys, a math problem you can't figure out or a new Minecraft world you are having trouble navigating, your brother is and always has been by your side. You may not see it, hear it, or feel it, but, I promise you, it is true. Although your brother may not ever jump next to you on the swing as you once hoped for, and he may talk to you in his bossy voice more frequently than in his nice voice, because you "aren't serious enough", your brother loves you and no matter how many times it feels like he has turned his back on you, I believe he always has and always will have your back. 

You can go ahead and blame autism on the days it hurts more, sometimes Mommy does too, but, regardless of autism, regardless of more hurtful moments than good moments, please don't every give up on your brother, I promise, he will never give up on you. 

I believe in the deepest part of my heart, one day, you too will walk along that seashore with both your brothers, and they will both be grateful to have you by their side, and in their heart. How they show that gratitude will be very different, but, as their little sister, you will know the love for you is there...you will see it...you will hear it...you will feel it.

Yes, my little love you must never forget....I see you. I hear you. I feel you. And believe it or not, he does too.

Love, 
Mommy 
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He sees you.
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He hears you.
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He feels you.
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He loves you.
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Stay Gold

10/9/2014

1 Comment

 
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I have a confession to make. I promised that when I started this blog a year and a half ago, that I would be AWEnest. I promised I would be real and raw and that I wouldn't hide anything from my readers, so here goes....in 1983, I was a member of The Outsiders Fan Club. Wow. There, I said it. That was hard to admit, since when I told Ryan this little piece of mommy trivia, he said, "Wow, I can't believe how ridiculous you were as a child.". After such an embarrassing confession, and such a horrified response, I did not share with Ryan that I may or may not be 1 of 6 Likes on The Outsiders Facebook Page.

To say that I LOVED The Outsiders book and movie would be a gross understatement. I had 106 pictures of Ponyboy Curtis (cut out of my Tiger Beat Outsiders Fan Club Magazines) on my bedroom wall. As enamored as I was with Ponyboy, my two best friends were equally in love with Johnny and Dally. We may or may not have won switchblades at our local carnival (I know it was the 80's, but, who in the he** has switchblades for prizes in ring toss?) and carried them around to prove we were "tuff" like a Greaser. We dreamed of rescuing a bunch of little kids from a burning church and making headlines in our local paper, but, alas, we never got to be Greaser heroes which is probably best because even though the knife I may or may not have carried in my Jordache jeans made me feel tuff, at 13, I don't know that I would have had the courage to run into a burning church, kids or no kids.

PictureThe Outsiders movie, Francis Ford Coppola
Ponyboy, Dally, Johnny, and Sodapop were the Harry, Hermione, Ron, and Draco of my generation. The Outsiders, by S.E. Hinton was published in 1967, but, The Outsiders movie made the book come to life for my equally "ridiculous" friends and me. In many ways, my "gang" resembled the Socs more than the Greasers because we came from good homes, we were part of the "in" crowd, and we could afford switchblades at the local carnie, yet, we were still drawn to the unfairness, the harsh life and the stereotypes of the kids from the wrong side of town...the hoods...the punks...the delinquents...the Greasers. Whether or not I was an "insider", The Outsiders, was the coming of age novel that not only turned me into a reader, but, taught how stereotypes and prejudices can literally mean life or death.

Fast forward many, many, many years, and I am sitting at Ryan's 7th grade back to school night with Denial and Clueless sitting in the desks right next to me. When Ryan's teacher announced they would be reading The Outsiders this year, as quick as a flip of a switchblade knife, I regressed back to my middle school years. As I remembered sitting in my room reading The Outsiders for the first time, I thought, "Ryan is going to love this book. He hates to read, but, this book, these characters, are going to change all of that for him. The Greasers and the Socs are going to quickly replace Mario and Luigi.". Denial and Clueless assured me I was right and of course, those two never lead me astray.

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I swear it felt like the cold metal of a switchblade knife was shoved deep into my heart when the oh so sacred book, The Outsiders, was thrown at my head weeks later with the exasperated cry of, "This book is so complicated! I don't understand it at all!". It was like blasphemy to my ears. What? How could it be complicated? After all it's about friendship, loyalty, social norms, stereotypes, societal expectations, fitting in, not fitting in....ohhhh...wait a minute. For a child with an ASD, all those themes in one book would make their head hurt. Which is precisely why Ryan said, "I think the stress in my brain is going to make my head explode.". So, like any good mom, I went on Amazon and ordered the movie (I swear it was to help Ryan, it wasn't for me to relive my Greaser wannabe youth).

When I asked Ryan what he thought the overall theme of the book was about he said, "a warfare between the Greasers and the Socs". Ryan understood there was a fight. He understood (spoiler alert) that someone died. He understood there was a winner and a loser, but, what Ryan did not understand was the deeper meaning of the book. He did not recognize the stereotypes placed upon each group. He did not fully comprehend the "outsiders" versus the "insiders". Ryan did not see the subtle themes woven throughout the authors words trying to convince the reader that in many ways the Socs and the Greasers were very much alike, but, it was the stereotypes placed upon the two groups that lead them to believe that they were different. The fact that both the Socs and the Greasers, felt pressure from their "gangs", felt a loyalty to their friends, and that no matter what part of town they came from, they all watched the same sunset regardless of their differences, was lost on Ryan, because in his mind, this book was about a rumble and winners and losers. The end. Move on to a less complicated book please, preferably non-fiction.

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As I tried to explain about stereotypes and how they impact people's perceptions about others and sometimes even themselves, I no longer felt like Cherry Valance, caught up in the trials and tribulations of Socs and Greasers, I felt like a mom who tries so hard to make people see past the autism "Rainman" stereotypes and see the beautiful boy who lies behind the soft cotton Hollister tshirt (Ryan would never wear madras or a jean jacket regardless of what side of the rumble he was on). I want people to look beyond the autism stereotypes to a beautiful boy that is more like you than different. I want people to understand that if you would take the time to get to know Ryan, many of your stereotypes would expire as quickly as my Outsiders Fan Club Membership.

I'm not sure how much my explanation of stereotypes sunk in, since Ryan failed his Chapter 3 and Chapter 4 combined quiz. Ryan may not get the deeper meaning of The Outsiders other than "warfare", he may not understand that seeing past the stereotypes allows you to see the person, not the label, but, I do, so I will continue to be a member of Ryan's gang and lead him safely into any rumble that lies ahead.

Even though Ryan may not fully understand the stereotypes of autism, he is aware of how it feels to be an outsider. Ryan knows he is "different" and I believe there are times that Ryan wishes he was more Soc than Greaser. I hope that with the love and encouragement Ryan is surrounded by, he understand that the stereotypes of someone living with autism, can be torn apart as quickly as a Socs' Mustang by a gang of Greasers and that all of us, regardless of labels, watch the very same sunset.

As a silly 13 year old girl, in love with Ponyboy Curtis, my favorite part of The Outsiders movie was when Ponyboy recites a poem from Robert Frost called, "Nothing Gold Can Stay":

Nature's first green is gold,
Her hardest hue to hold.
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.
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As a teenage girl, I didn't even care what that poem meant, I just stared dreamily at my 106 pictures of Ponyboy on my bedroom wall dreaming that he was reading the words to me. As a mom, I now know that the gold in the poem signifies the innocence of the young, before the outside elements tarnish the shine and luster of such a precious element. As we get older and are influenced more by what others think or believe, it gets harder and harder for people to hold onto that golden hue thanks to stereotypes and discriminations that surround us.

Although it breaks my heart that Ryan "hates this stupid book", I hope that the reason Ryan finds The Outsiders book so difficult to understand is because Ryan is still "gold" and that his luster and shine never dulls due to the stereotypes and ignorance of others. The deficits autism brings to Ryan's understanding of the world, in some ways makes it difficult for him to "read between the lines", but, the blessing of such deficits also keeps Ryan free of stereotyping, it keeps him innocent and most importantly, it keeps Ryan gold...the "hardest hue to hold". We should all be so fortunate.

Autism makes understanding stereotypes, social caste systems, racism, and being an insider or an outsider difficult to comprehend. Don't get me wrong, Ryan and people living with an ASD know when they are shunned, when they are treated unfairly, and when stereotypes surround them, but, what they don't understand is why. 

Ryan can be rude, curmudgeonly, and a little mean if you get in his way, change the rules, change the routine, act too silly, or talk too fast, but, Ryan would never be mean to someone because of the clothes they wear, the car they drive, the neighborhood they live in, the color of their skin, the religion they practice, who they love, or a label attached to their name. Ryan will not discriminate against anyone who eats the last donut, because it doesn't matter if you are a Soc or a Greaser, there is going to be a rumble, and if that donut happenes to be a white iced with seasonal colored icing on top, I'd put my money on gold every time.

Whether you were a member of The Outsiders Fan Club or not, whether you ever read The Outsiders book or watched The Outsiders movie, what S.E. Hinton wanted us all to know was that "even though we must sometimes except what is happening now...in the present...there is always the potential to change what it could one day be". So rub off that tarnish, remove all that build up, and do your best to shine and stay gold. If not for yourself, if not for Ryan and kids like him, well, then, "let's do if for Johnny".

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When Kyle's class read The Outsiders they got to dress up as their favorite Soc or Greaser and Kyle chose Sodapop. I'd bet all my weight in gold that Ryan will be the only Greaser in a Hollister shirt.
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Not Guilty....By Reason of Insanity

10/5/2014

3 Comments

 
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If I didn't have pictures of Ryan at birth, entering the world in only his birthday suit, I might not believe that it was his exceedingly large cranium that caused me so much discomfort upon his arrival. If the proof wasn't in the photos, it would not have taken much convincing had the doctor said, "It's a boy.... and he's holding an Xbox controller!". It would have made perfect sense that it wasn't Ryan's large pumpkin shaped head that got hung up in the birth canal, but, rather the unmalleability of the Xbox Controller's plastic form that had caused me so much pain, since after all, Ryan was able to hold a video game controller long before he could hold crayons or scissors. 

Ryan loved electronic toys at a very early age. The sensory input of toys that beeped, lit up, and had cause and effect provided Ryan with more joy than any ball or Matchbox car every could. So, it was no surprise that video games would give Ryan unmitigated joy as well. Little did I know, that one day, that sensory buzz Ryan got from video games would supersede all things in life for him, except maybe donuts.

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The minute Ryan first held a Gameboy in his hand, Thomas the Tank Engine went hurtling over a cliff, doomed to spend his retirement years covered in a pile of dust next to the likes of Blues Clues and Tickle Me Elmo. Once Ryan found his way into the glorious land of Video Games, he did not leave a trail of bread crumbs for anyone to find him. Ryan was happy to be left alone with Sonic the Hedgehog, Mario and Luigi, and Kirby. Even without the trail of breadcrumbs, I could occasionally pick up the scent of stinky boy and hear the exact mimic of Mario's Italian accent coming from Ryan's room and I would try and lure Ryan out, but, leaving behind Ryan's "friends" only worked if there was a good episode of Spongebob On Demand.

I admit, Ryan spends way too much time in front of a screen. If I had to appear before a judge and jury and the judge asked, "Does your son spend countless hours playing video games?", I would respond, "Guilty Your Honor". "Do you allow your son to pick up the Comcast remote as soon as he puts down the XBox controller? Lowering my head in shame, I would quietly mumble, "Guilty, Your Honor." "Even though, as his mother, you are aware that too many video games, too much television and too much screen time may impact his socialization, yet you still allow it?" Now trying to hide under the defense table, I would whisper "Guilty, Your Honor", but, before the jury left the courtroom to deliberate I would jump up from under the table and shout, "Guilty, by reason of insanity".

Before I would begin proving my insanity plea, like any good mother defending her case, I would try to place the guilt elsewhere to take the heat off of me and totally throw big brother Kyle under the bus, in an attempt to absolve my guilt and save my own a**. "Well, Your Honor, my son Kyle had the video game first, so naturally, his brother wanted to have a video game too. No, I did not buy the games for Kyle or Ryan, that jolly old elf named Santa Claus did." Just like the insanity defense is hard to prove in a court of law, proving that a 5 year old boy and Santa Claus are culpable in my negligent video game allowances would be equally as difficult to prove to the judge and to myself.

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I know too much "screen time" is not good for Ryan, I know it's not helping him be more social, and I know as his mom, I need to do better, but, when video games is the one thing Ryan perseverates on, the one thing he talks about, the one thing he can relate to with other kids, the one and ONLY thing he has any interest in, it's HARD to pull him away. Not hard, like my family is starving and I don't know where our next meal is coming from hard, but, hard like, autism keeps his interests so limited and rigid, Ryan struggles to find joy in anything else and I shamefully admit to throwing in the towel. 

Since I know there is not a Judge in the land who would find Kyle or Santa guilty (have you seen Miracle on 34th Street?) of Ryan's video game obsession, I would absolutely plead the insanity defense to save my own sorry self. After all, defense attorneys try this defense when they believe their clients are "not responsible for his or her actions during a mental health episode." Uh, hello? 

Suffice it to say, that when I watched Ryan struggle to play, to have friends, to "fit in", when I saw the joy video games gave him and how playing these games made Ryan seem "like all the other kids", I may have had a "mental health episode". I may have had a moment of temporary insanity where at the time of the purchase of a Gameboy, Nintendo DS, Wii, Wii Plus, iPod Touch, etc, etc I was "briefly insane at the time the acts were committed", blinded by my craziness to have Ryan "be like everyone else".

Temporary insanity legitimately kicks in during one of my "I love him, I accept him, but, I really still want him to fit in occasionally" mental health episodes. And during one of these episodes, I may be "briefly insane", as I commit acts such as signing Ryan up for baseball, soccer, or buying him countless video games in an attempt to have him "be like all the other kids". 

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For a little boy who rarely played with toys in a typical manner, when Ryan picked up his first Game Boy and actually played it, not tossed it aside, not rolled his body on it, but played it the way it was suppose to be played, all I could think in that frenzied, crazed moment was, "He's playing something the way it's supposed to be played....like his brother....like our neighbors....like everyone else.". My temporary insanity lead Ryan down the video game path, my "mental healthy episode" caused me to believe that video games would help Ryan fit in, lead me to my insanity defense.

Perhaps it was temporary insanity that lead Ryan and me down the dark, and evil video game path, but, insanity plea or not, what I was most assuredly guilty of back in those early days, was trying too hard for so long to make Ryan "fit in" as I constantly compared him to other kids. And in my defense, although there was and still is too much "screen time", video games is the one connector, the one link between Ryan and friends. 

So if today, I had to appear in a court of law, after taking the oath and taking my seat in the witness stand, when the prosecutor asked, "Does your son play video games too much?", I would first ask if Apps on his iPod Touch count as "video games" before turning to the judge and telling him I would like to plead guilty, by reason of insanity. 

Because today, I am still guilty for allowing Ryan too much screen time. I am insane because it makes me crazy that I can't get Ryan to go outside, learn to ride a bike, play a board game or read a book. I lose my mind worrying about his love of all things electronic and his lack of desire to socialize in the "real world". I look temporarily insane when my head spins around and I scream, "turn off that blankety blank, blank, blank video game right now" then 2 hours later after Ryan moans he is bored and has eaten an entire bag of Goldfish Crackers out of sheer boredom, asks, "Can I play my game now?" and I sweetly kiss him on the head and say, "Sure, but not too long". Cra-a-zy.

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The famous Temple Grandin, who I had the pleasure to meet and hear speak this past spring, has a very strong opinion on video games and kids with an autism diagnosis. As I sat beaming listening to her wonderful insights on what living with autism has been like for her, my smile quickly faded as she turned to the topic of video games. 

When Temple adamantly insisted on getting "these kids off the video games and out of the basement" I was so relieved because Ryan doesn't have video games in the basement, the xBox, Wii, WiiU and his Nintendo DS are all in his bedroom. As I breathed a sigh of relief Denial, who was sitting next to me, and I happily gloated that surely Temple wasn't talking to us. I looked around the room and saw loads of other mothers, mothers who put their kids video game systems in the basement, hiding their eyes, cowering under chairs and pretending that Temple was talking to someone else, not them. 

As I listened to Temple describe her life, I realized that just like it is unfair for me to compare Ryan to other neurotypical kids, it is unfair for me to compare him to other kids with autism. It's true, like many kids with an ASD, Ryan needs more social time, and it's true that Ryan is obsessed with video games and has too much screen time, but, Ryan is still remarkably successful and happy. Yes, I need to work harder at increasing his interests outside of Minecraft and Mario Kart, but, I also need to stop going insane and feeling so guilty when I can't. 

With Temple's video game lecture still ringing in my ears, I smiled to myself as I watched a slew of mothers pulling out their phones, excusing themselves to the restroom and doing everything, but, plugging their ears, to drown out Temple's words that rang all too true in their hearts. I realized that day, that if my insanity plea sticks, there are going to be a boat load of other mothers in the medication line with me at the psychiatric facility whether Temple likes it or not.

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I would like to introduce this as Exhibit A into evidence.
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