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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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The Special

3/19/2014

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PictureThe Lego Movie, Warner Brothers
We finally saw The Lego Movie! Hooray! Yeah, we are a little behind the eight ball, but, at least we saw it while it was still in theaters which is somewhat of a miracle. I always have great movie plans, but, somehow, the old, "We will see it on DVD" excuse gets in the way. Ryan was thrilled that this time, Mom actually opted for the $30 movie experience versus the $1.20 Redbox experience. Ryan was so excited that he didn't even complain (too much) that he was forced to take a shower on a Saturday. After cleaning himself up, Ryan grabbed our movie theater coupon book, his wallet (for the games and vending machines) and out the door he went, smiling from ear to ear. Unfortunately, the smile didn't last long.

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Once we parked the car and entered the theater, I informed my delighted son that the coupon we had, afforded him a free drink with a purchase of a large popcorn, which he would have to share with me...the woman who gave birth to him. Clearly, nine months of gestating him, had no impact on his desire to share popcorn with me. "I am NOT sharing. I want my OWN!", Ryan grumbled...loudly. I have to be AWEnest, I didn't really want to share either. Even though Ryan had just showered, I was still less than thrilled at the idea of his frequently chewed on fingers digging in my popcorn bag, but, I also didn't want to spend $20 on freaking popcorn. After trying to reason with Ryan and reminding him (again) how big his head was upon his delivery into this world, I gave up and told Ryan that if he could not be a "flexible thinker" than he would need to buy his OWN popcorn with his OWN money. Ryan begrudgingly pulled a $5 bill out of his wallet and got his popcorn. About half of his coveted OWN popcorn, which he assured me would be eaten in it's entirety, got tossed in the trash the next day.

We eventually got to our seats just in time for the previews and all was right with Ryan's world, until I pulled out a can of Diet Coke that I had stuck in my purse before we left the house. You see, our coupon did not allow for two sodas, and yes, I'm that cheap. Ryan knows the "no outside food permitted" rules because he saw it on a sign, and Ryan follows directions, instructions and rules without fail...ever. So, the poor boy nearly had a stroke when he heard the "pop" and "whoosh" of my soda tab opening. Mom did not read the "no outside food or drink sign". Mom was not following the directions. Mom was breaking a rule. It wasn't until the movie started that Ryan finally stopped looking over his shoulder, waiting for the movie police to cart me off to movie prison. Movie prison truly doesn't sound too bad. As long as I can bring my own soda and do not have to share popcorn with my germy, finger chewing, cell mate.
I want to issue a spoiler alert for those of you who may not have seen The Lego Movie. I'd hate to make you pay $300 for movie tickets, popcorn, and soda for you family and have me blow the ending. I have to be AWEnest, I can't believe I went to see this movie. I can't believe that I am blogging about this movie. Most importantly, I can't believe how much I loved this movie. I had zero interest in seeing The Lego Movie, in fact when I saw the preview months ago I laughed and thought how ridiculous it looked. Now Director Adam McKay is laughing and spitting in my popcorn as he finds various ways to spend the $224 million dollars the movie has made thus far. The movie, in one word was AWEsome. There was adult humor, a great cast, and a beautiful story. There was also the sound of giggles and munching popcorn from my finally satisfied, happy son.
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As I watched the movie, I couldn't help but think, Ryan would probably love to live in Lego World. Where all the pieces have their place and everything fits together just so. Piece number 685 always fits together with piece number 686. In the instructions, page 10 never comes before page 9, there are visual cues for each step and their is semblance to the world. Such order, such instruction following is how Ryan survives the world and how Ryan builds with Legos. I couldn't help but compare Ryan to the lead character Emmet, who like Ryan, follows the instructions down to the very last brick and struggles with the creativity needed to become a "Master Builder". Ryan struggles to think beyond the Instruction Manual, to occasionally bend the rules. Skipping ahead from page five to page seven for Ryan is like sneaking in a .22 Diet Coke instead of paying $4 for one at the snack bar. If Ryan had to do it, if he had to build section 29 before section 27, he could, but, he'd be horribly uncomfortable, and he would keep an eye out for the Lego Police.

Just like Ryan, Emmet, the protagonist of The Lego Movie, followed the instructions. Emmet didn't think there was any other way to build. There was no need to be creative, to be a "Master Builder" when everything you needed to do was laid out right in front of you in the instructions. This was never a problem for Emmet, he thought this was how the world worked, how everyone in Lego World operated, until one day he was told that it wasn't. Until one day, Emmet was told that he was was The Special. The Special was a unique, one of a kind builder foretold to the Lego people by the wizard Vitruvius who was suppose to save them from the evil Lord Business. The Special was suppose to be....special. Once the Lego people discovered that Emmet had to follow the instructions, that he couldn't think outside the box, they decided Emmet wasn't so special after all. Emmet just blended into the background, people at work didn't notice him, his neighbors didn't notice him and this was all because Emmet followed the instructions, he went through life following the rules, not standing out. Following the instructions, living his life, "by the book" seemed boring to the other Lego people. In fact, they no longer thought Emmet was The Special, because in their minds, "special" had a very distinctive meaning. 
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I guess I'm a bit like the Lego People, not in my ability to have my head spin around, which it occassionally does, but, like the Lego People, I have a misconception of The Special. I have never been a fan of the term "special needs". Aren't every kids needs, regardless of a label or not, "special"? To many people, "special education" and "special needs" are not the same as, "special occasion dresses" or "special agent". In the former, "special" often has a negative connotation, and AWEnestly, when people say it about my son, I still kind of flinch. In The Lego Movie, the Lego People had an expectation, a misconception of what "special" actually meant. Their idea of "special" was some save the world hero who had unique and amazing abilities. Unfortunately, their vision, their definition of "special" blinded them to the abilities Emmet did have. Emmet was always "special", until one day, he wasn't...thanks to them.

You see, Emmet always felt happy, he always felt good about himself, he always felt...special in a "special agent" kind of way. Emmet didn't feel different from anyone else, but, once his differences were pointed out, once he recognized that he was suppose to be someone he wasn't, then and only then, did Emmet's happiness falter. Then and only then, did Emmet feel "less". Emmet may have needed the instructions to build, he may not have had the creativity to save the world, but, Emmet was special and it was his belief in himself, it was how he saw himself and not how others saw him that made him special. Once the Lego People discovered that "special" had various interpretations, various qualities, and various meanings, they finally started seeing Emmet and his different abilities as special too.

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Just like the Lego People, I have to change my views on The Special. The words, "special needs", "special education", "special accommodations" are no more negative than "special shoe sale". Those words can be harmful, when you fail to see what "special" really means. You see, ever since the day Ryan was born, I have told him he was "special". I have called him my "special" love, my "special" boy, and my "special" fella. Those phrases, those terms of endearment, those words all came before The A Word. The A Word did not diminish how special those words were, how special my love for Ryan was, or how heartfelt those words were when whispered in my boy's ear, but, how I started to hear them, how I began interpreting those words was a very different story. Like the Lego People, I had to see past my definition, to see past the "special" that I had grown up believing was something negative, something bad, something less, to see that Ryan really is The Special. I still tell Ryan he is "special" and it's not because he has an ASD, or because he has "special" needs, or "special" accommodations, Ryan is "special" because he is Ryan. 

Ryan may not create the next Lego master piece, he may not save the world from Lord Business by freeing the Master Builders with his unique creation, but, Ryan is The Special. For some, Ryan's "special needs" may make him appear "less", but, if they remove the word "needs", the only word left is "special". Special means, "better, greater, or otherwise different from what is usual". Yes, my boy is indeed The Special.

Like Emmet, Ryan follows the instructions right down to the last Lego block. Ryan lives in a world where directions, instructions and rules have a calming effect on him. A world that can be so confusing with it's subtle social cues, and "unwritten rules". After the movie ended, Ryan decided he was more like The Man Upstairs than Emmet. The Man Upstairs also built his Lego creations by following the instructions and he did not believe that you should ever build with Lego's any other way. In fact, The Man Upstairs was so rigid in his beliefs that he wanted to use Kragle (Crazy Glue) so his creations would always remain the same, so his creations could never be used in a different way. As we exited the theater, and I discreetly hid the potential rule breaking evidence of an empty Diet Coke can in my coat pocket to avoid prison time, I smiled to myself. Ryan may relate to the rigidity of The Man Upstairs and his Lego building technique, but, Ryan could never be The Man Upstairs, because using Kragle, aka, Crazy Glue, is not found anywhere in the instruction book. 

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Such a rare occurrence for Ryan to build his own creation, that I took a photo of it a few years ago...when Lego's were still cool.
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Sweet (and a Little Sour) 16

3/13/2014

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Yesterday, Kyle turned 16. My hands trembled a little as I typed those words. For various reasons, 16 makes me anxious. 16 means almost a man...16 means driving a car...16 means parties...16 means parties where drugs, alcohol and (whisper) empty bedrooms with no parents at home, may take place. Ok, I just threw up as I typed those words. Yes, driving, drugs, alcohol and unsupervised parties at 16 makes my hands tremble, my pulse race, and my stomach churn, but, what hits my heart about 16, is that there are only two more years until (gulp)....college.

Picture"Love You Forever", Robert Munsch
As Kyle's mother, watching Kyle head off to college will be bittersweet. I will worry incessantly, in a way I have never worried before, once my "baby" is no longer under my roof. Under my roof, I know where he is at all times (as long as he is being AWEnest). I know where his EpiPens are located in case of an accidental exposure to peanuts or shellfish (I keep telling Kyle I will be like that creepy mother in the children's book, "Love You Forever" hiding in the bushes of his college dorm with EpiPens...just in case). And under my roof, I know if Kyle is happy, sad, or sick with the flu. Along with all of my "what if" worries, my nausea and my medication, there will be joy. Joy for this new adventure and all the fun and excitement that comes with being a college kid on your own for the first time (this "excitement" will be exactly what will keep me up at night with my brain awfulizing just how much fun Kyle is having). When we pull away from Kyle's chosen baseball college, waving good bye, I will cry for myself and my inability to control Kyle's safety, his decisions, and his food exposure, but, I will sob for Ryan, who will find little to be excited about as his brother, his confidante, his ally, his best friend, packs up and leaves Ryan behind.

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Kyle shares a connection with Ryan that Ryan has with no other human being. Sure, Ryan is connected to me because I am his mom...I take care of him, protect him, help him, and love him, but, as Ryan's brother, Kyle gets the very distinguished title that no one else holds...friend. Of course as brothers, they fight, irritate each other, and make their mother crazy, but, they also laugh, love and enjoy each other's company, at least for a little while. Since the day Ryan was born, Kyle has been Ryan's compass, guiding him through twists and turns and leading Ryan on the journey through kid-dom in a way that I could not. 

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Many kids with an ASD aren't exactly chillin' with the "in crowd", because quite frankly, many don't know what it takes to be "in". The social cues, the social exchanges, the hierarchy of school "coolness" is difficult for a child with social and communication struggles. Ryan is not "in", but thanks to his brother, he is not totally "out" either. Although Ryan may not hang with the "in crowd", he is at least up on what is cool on television, video games, and most importantly, the slang or "street talk" teenagers use, thanks to big brother Kyle. Just last week, Ryan saw something on TV and said, "Wow, that's so sick". I turned around fully expecting a lion to be eating an antelope or something equally "sick", but, no, it was a "sick", cool pair of sneakers. I was amazed that Ryan used the word "sick" in an Urban Dictionary way, not a Webster Dictionary way and it was about fashion! AWEnestly, I couldn't have been more shocked or surprised had I turned around and saw that "sick" was the antelope snacking on the lion. Ryan talking "street" about fashion, almost goes against the laws of nature.

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Kyle's innate guidance, for his brother began immediately. Kyle loved and nurtured Ryan the minute he came to visit us in the hospital. I worried that Kyle would be jealous or angry that his baby brother took his place, took too much time away from his Mommy, but, that never happened. Ever. In fact, once when I told Kyle that I was worried he'd be angry about having a baby brother he looked at me, and with as much indignation as a four year old could muster and said, "How could you ever think I wouldn't love my baby brother?!" Well, AWEnestly, I didn't accuse Kyle of not loving Ryan, but, Kyle read between the lines, something he has become a bit of an expert at since his brother leaves a lot of space between the lines. As I watched Kyle "mother" Ryan when they were little, I pictured the two of them growing up playing together, getting into trouble, sharing secrets and taking on the world hand in hand. That was before....before The A Word. 

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I remember not long after we heard The A Word, I would watch other brothers playing baseball outside, riding bikes, building with Legos, interacting with one another in a way Kyle and Ryan didn't. Kyle would try and sometimes Ryan would respond, but, mostly, Ryan preferred to be alone with some electronic toy. I would watch these other brothers together and I would mourn the relationship I had expected my boys to have. I became jealous and angry and wondered, "Why Kyle? Why Ryan?", and AWEnestly, "Why me?". As I have watched my boys grow up, watched their relationship strengthen, I now know why. Ryan needed Kyle as his compass to navigate a confusing, loud, busy, world, but, Kyle needed Ryan to show him that there is more than one way to explore that world. It just depends on how you see it. A lesson, I too had to learn.

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As the boys got bigger, I worried that Kyle didn't understand Ryan's lack of interaction and that it would somehow impact Kyle negatively. As a result of my worry, I suggested to Kyle that perhaps he join a sibling group for kids with a brother or sister with an ASD. Kyle looked at me like I was an antelope eating a lion. I explained to Kyle that sometime it's hard for siblings who have a brother or sister with an ASD because their relationships are "different" than relationships with a neurotypical sibling and it might be nice for Kyle to talk about that with other kids who feel the same way. "I don't need to talk about anything, Ryan is my brother and we get along great. I don't have a problem. Sounds like you do though." Wow! Any chance you can push that knife in just a wee bit deeper, darling child I gave birth to? 

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Kyle was right though, even if his delivery cut me and made me bleed out on the kitchen floor, worrying over Kyle and Ryan's relationship was my problem. It was my misconceived notion, my idyllic picture, my never even had a brother view of what a relationship between two brothers should be like, not Kyle's. In Kyle's mind, he is the big brother and it is his job to look out for his little brother, ASD or no ASD. And sure, Kyle has admitted from time to time that he wished he and Ryan had more shared interests and that Ryan would want to come outside and play baseball, ride bikes, whatever, but, Kyle recognized a long time ago that lack of a shared interest could be the case with any sibling, not just a sibling with an ASD. If Kyle could see this, then I wondered why couldn't I? It took me years to figure it out, but, in time I understood that it was easier for Kyle to see Ryan with his child like heart than it was as Ryan's mother. For me, I was often so blinded with worry, that I couldn't see Ryan or the beautiful relationship, dare I say, friendship, blossoming between him and his big brother.

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Ever since Ryan was little, Kyle always had an understanding, a sort of sense about his little brother. Many times when Ryan was upset and I didn't know why, I would be freaking out wondering, "What's wrong with him?" and Kyle, without his worried blinders on, would recognize the loud noise, the bright lights or the button on the coat that was too tight. I joked that Kyle was a better parent than me and in some ways he was and some ways he still is today. Kyle has always been able to see Ryan through the eyes of a child...through the eyes of a brother. There was and is, love and acceptance. Period. End of story. Kyle didn't have the worry part that I did as Ryan's mother. Kyle didn't have to worry about whether or not Ryan would hit a kid at school when he became frustrated, or if the horrific diet Ryan lived on was going to lead to high cholesterol or heart disease later in life. Kyle didn't spend time worrying about Ryan's ability to balance a check book, pay bills and live on his own when Ryan was only four years old. Kyle lived in the present with his brother, enjoying Ryan and loving him, without worrying what the future would hold. Every year I resolve to be more like Kyle, living in the present and worrying less about the future. Clearly, a resolution doesn't cut it for me when it comes to worrying, I think only a lobotomy will resolve that issue. 

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As I remind myself that college is still two years away for Kyle, I will try and be more like Kyle, living in the present and not worrying about the future (I LOL'd as I typed that). I will embrace the moments that these two brothers have together, whether it's annoying one another, or making each other laugh. I will savor moments, like the one I had this fall when shopping for shorts for Ryan, and Kyle immediately walked over, looked at the shorts and said, "Nope, don't get this pair, there are no pockets in it and he needs pockets for candy out of the vending machines.", as I broke down and sobbed in Dick's Sporting Goods, utterly horrifying Kyle. I will continue to admire their bond as Ryan brings home another stellar report card knowing that Kyle insisted on which team Ryan should have for 6th grade and telling me to request the most amazing group of teachers that have lead to Ryan's success. I will try not to cringe when Ryan says something inappropriate for a 12 year old knowing the words are coming directly from a 16 year old's lips as Ryan lovingly admires and worships his big brother. I will try not to picture Kyle's empty bedroom and the emptiness that I know will be in Ryan's eyes as he wonders when Kyle will be home next. I will remind myself, repeatedly, that 16 is not 18 and to enjoy the moment. Enjoy today.

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One thing I do know, that when 16 becomes 18, regardless of the distance between these two brothers, Kyle will always be Ryan's compass. The pull of Kyle's heart will always guide Ryan, regardless of time and distance between them. These two brothers share a special bond like no other, and once upon a time I worried about their bond being so "different". Now I can see, like so many things, this difference is not less, in fact, this difference is so much more. Kyle may be Ryan's compass, but, Ryan has become a window for his big brother, providing his brother a view of the world like Ryan sees it. Giving Kyle a view he never would have seen had his little brother not shown him. And just like Ryan will be in AWE of his big brother with the first crack of the bat this baseball season, Kyle will sit at a piano recital in June mesmerized and jealous by his brother's gift of music. Two unique brothers whom individually are incredible, but, whom together stand apart from any brothers I have ever known. I will try to keep that in mind the next time I tell Ryan it's time for bed and in Ryan's best Peter Griffin (Family Guy) impersonation he responds with, "Who the he** cares?", that the influence of 16 can be good, the influence of 16 can be bad, but, mostly the influence of 16 can be downright freaking hysterical. 

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Brothers.
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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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April is Coming...I Swear

3/3/2014

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Even though it's still snowing, it's still cold and the flowers aren't even thinking about blooming, April is right around the corner...I swear. April means a month dedicated to Autism Awareness which is near and dear to my heart. This April, I want to do something special not only to celebrate all the amazing kids and adults living with an ASD, but, I want to celebrate the people who love them. I would love to create a video with photos from all of you who love someone with an ASD. I am looking for photos of your children with a parent or grandparent or someone who loves, advocates and fights for them and who understands, "different, not less". If you would like to share a photo, and give me permission to use the photo on the blog as well as on The AWEnesty of Autism Facebook page, please submit your photos to me at khooven3@gmail.com

Although, I'm a little biased, I think Ryan is pretty darn cute, but, you guys may be getting tired of seeing all these pics of our family. I want to celebrate your family and I want my readers to celebrate your family too. Thanks in advance for your cooperation and support!!
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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 
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    spelling AWEtism.

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