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Going Down the Rabbit Hole. Again.

1/12/2018

2 Comments

 
I ignored the house phone when it rang. No one who really needs us calls that phone anymore. Then my cell phone rang, and since it was a local number I didn't recognize, I ignored it too. After all, it was Christmas break and my only goal was to hang with the family, eat cookies, drink wine and finish Season 2 of The Crown.

However, when the voicemail message alert popped up on my cell phone, I decided that even if I did want to see how Queen Elizabeth handled a remorseful Jackie Kennedy (even classy, grown up girls can be mean), I needed to check my message.

As soon as I heard the voice, I felt the hair on the back of my neck stand up. When a school official is calling over Christmas break you know they aren't calling to see if you got an Instant Pot for Christmas. Then I heard words like, "red flags", "teacher concerns", "out of the ordinary" and "worried" and that’s when the cold sweats began.

In a writing assignment, Ryan had written words that lead his teacher to all the words I just wrote above. I was literally trembling as I called the school administrator back. And as quickly as this nice man answered his phone, he was cut off and gone. I prayed after I yelled the word that rhymes with “duck” REALLY, REALLY, REALLY loud, that we truly were disconnected and that he didn't hear that expletive come so easily and freely from my mouth.

As I waited, hoping this nice man who was working over his break would call back this really sweary mom back, the worst case scenarios went through my head. As one fear lead to another, I sat on the couch willing my phone to ring and tried to calm myself down, but, the glow of the Christmas trees lights reminded me that any type of teacher or administrator calling over their sacred holiday break equals some type of big deal. Bigger than the deal Queen Elizabeth just made with the Prime Minister from Ghana on The Crown.

It only took 60 seconds for this school administrator to call me back, but, in those 60 seconds my brain went down the rabbit hole. Did he write about guns or bombs? I mean he spent all break killing creepers on Minecraft so it made sense. Did he script something that would be perceived as a threat? Did someone hear him script, “I have crippling depression” from his most favorite meme and think a call to Crisis Intervention was needed? My son has NEVER been violent or the least bit aggressive, but the rabbit hole is a place where only ugly thoughts creep in your head.

When the phone finally rang and I got the story, none of my catastrophizing scenarios came true. What this school administrator shared was sad, but, nothing like the scenarios I had created in my head. And after Ryan and I discussed it, Ryan’s words that were concerning to some, made sense to me.
 
As much as Ryan's words and his worries hurt my heart, I was so proud of Ryan’s ability to communicate his feelings and his concerns. What I wasn't proud of was my reaction. Damn it, I hate that rabbit hole.

Yes, the sense of panic with a call over Christmas break was somewhat worthy of alarm, but, to immediately go to such awful scenarios had me feeling shameful. I know my son better than anyone and there isn't an aggressive bone in his body, yet, I know when he scripts, he might not know the impact his words could have on people who don’t know him.
 
Whether it's on AWEnesty, my Facebook page or at an IEP Meeting, I beg and plead for everyone to not see the label, but, to see my son, yet, with one phone message and without so much as a backward glance at my son whom I know so well, I jumped both feet first down the rabbit hole and did exactly what I ask no one else to do, I saw autism first and Ryan second. And the guilt of it made me feel so ashamed.

Rather than wallow in my own shame and guilt, I decided to do something about it. I decided I needed to apologize to my son. After we discussed what had caused his teacher to be somewhat concerned and precipitated the phone call, I told him, "I was worried it was something else". Then when I told him about my trip down the rabbit hole he said, "Well, that's not a surprise since you over worry about everything."

Ryan's right. I do "over worry" about everything, like seriously, everything. So maybe my "over worry" to a holiday break phone call from school personnel and jumping down the rabbit hole wasn't quite so out of character for me. As for my son, who never disappoints me, he stayed true to his character too by pulling me out of the rabbit hole, as he has so many times before by being exactly who is meant to be.

He teaches me so much.

​Every. Single. Day.
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He really is AWEsome.
2 Comments

Movin' On Up

8/21/2014

2 Comments

 
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Next Monday school begins and no one is more excited about that upcoming date than Ryan. He longs for the feel of a freshly sharpened wooden pencil (#2 Ticonderoga only please) held securely in his hand, as well as the soothing, steady hum of the fluorescent lights (please Mr. and Mrs. Custodian replace any blinking, flashing bulbs as well as any super loud buzzing bulbs) and the smell of the freshly waxed classroom floors drifting through the hallways that within hours, will be replaced with the stench of hundreds of teenagers wearing fall back to school clothes on an 80 degree summer day. The routine of routine is just around the corner for my soon to be seventh grader and he will breath a big, sigh of relief having survived another "boring" summer.

Yes, as my beautiful boy happily enters the hallowed middle school doorway, movin' on up as a seventh grader, Ryan will not look back to sixth grade days gone by.....ever. I want to apologize in advance to all his former sixth grade teachers, the 6R Team, but, just like George and Louise (aka, Weezy) moved to that "deeeeluxe apartment in the skyy-hii-hiii" after they finally "got a piece of the pie", their old neighbors in Queens, Archie and Edith Bunker, became a distant memory. Ryan will remember you all fondly, but, now that he has moved on up to the East Side, chances are he won't ever look back down. Yes, in this scenario you are The Bunkers and sorry, but, chances are also good that you won't make a guest appearance in a later episode.

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Try not to take it personally, you wonderful teachers who so willingly and eagerly helped my boy feel at home each and every day, this sort of love 'em and leave 'em pattern has been going on for quite some time. 

Sometimes I think this behavior is a result of autism's hold on Ryan's brain and he sees little benefit in a long term relationship with someone who has fulfilled their purpose. He needed you last year, you did your job so well last year, that he no longer needs you this year, so, sayonara, end of story. 

However, sometimes I think this love 'em and leave 'em attitude has nothing to do with autism and Ryan's brain, but, more to do with his heart. As I have watched my boy love and leave so many, I believe this attitude has more to do with protecting his sensitive, beautiful heart, than his atypical social and communication skills. Good byes are hard, pretending he never knew you is easier.

Ryan cries at the end of every school year, rejoicing in his success at getting closer and closer to finding his piece of the pie, but, sad that it is once again, time to move on up. Ryan truly loves the folks who helped serve him his piece of the pie, but, it's easier to just toss his pie plate aside waiting for the next bigger piece of pie than it is to get caught up in remembering all the ingredients it took to make that pie. It's not that Ryan doesn't realize the sugar, the butter, and the milk is what made his pie so sweet, it's just that eating the pie and tossing the plate aside is a lot less stressful on his overtaxed brain and a lot less painful on his ultra sensitive heart.

It has happened year after year, Ryan will pass his former teachers in the hallway and they may occasionally get a grunt or a halfhearted trying not to smile smile, but, chances are much higher that Ryan may completely ignore them. Some of Ryan's most beloved teachers have come to me at the beginning of the next school year, gripping their heart with a look of confused bewilderment in their eyes, and before the first syllable starts to from on their trembling lips, before the next beat of their abandoned heart, I know exactly what they are going to say, "Ryan just ignored me....again."  

As for you sooooooooo....last year teachers, still hanging out in the 6th grade hallway of Queens, sorry, but, you are no longer needed and you have quickly been replaced since my boy has moved on up. Ryan may occasionally allow his doorman to let you visit, but, chances are you won't get a key to his new place. 

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I know it's hard not to take his love 'em and leave 'em attitude personally, especially for a student who has so few friends, who often stands alone in the hallway or on the playground, who for 180 days trusted you, relied on you, needed you, above anyone else, to allow you to fade away as quickly as summer break, is difficult to understand, but, inevitably, it still happens. Ryan doesn't really mean to leave you behind in Queens, it's just that Ryan struggles to find a place for the past, while he puts all his effort into movin' on up, because for kids like Ryan, it takes "a whole lot of tryin' just to get up that hill".

Trust me, this summer more than ever, I have felt the love'em and leave 'em attitude as my almost teenage son has decided he no longer needs me to tuck him in at night, snuggle him or kiss him when "WE ARE IN PUBLIC". Just last year, before he moved on up, as a 6th grader in the Queens Borough hallway, I bragged about Ryan walking hand in hand into school with me, giving me a big "I love you" hug at the bus stop and not giving a hoot about what his fellow neighbors in Queens thought about his public displays of affection with dear old mom.

PictureCast from "All in the Family"
This summer, I have felt more like The Bunkers, staying behind watching my boy movin' on up. Standing in the shadow of Ryan's new high rise on the East Side, as he moves on up without me...just as he should...just as I want him to....just as I feared he never would. And yet, as much as I hoped this day would come, I can't help, but, feel a little like Archie Bunker, pretending I don't care even though watching Ryan movin' on up as he repeatedly pulls away from my snuggles and kisses, feels like getting hit by the 7 train traveling from Queens to Manhattan.

I know that part of growing up means moving up...without me...yet I know that I will always be a part of Ryan's life. And on the days where I feel more like Florence the housekeeper than good old mom, I will keep in my heart the days gone by when a little hand warmed mine as we walked down the street ("IN PUBLIC"), I will touch my cheek right where his sweet little lips use to hurriedly brush across as he ran to the bus ("IN PUBLIC") and I will remember the AWE in his voice as we watched popsicle sunsets on our front porch back in the good old days in Queens, before Ryan moved on up. 

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So, come Monday morning, I will happily watch Ryan run, bent over, wearing new, uncomfortable not yet broken in clothes, charging at the bus like a bull, holding my cold cheek where his kisses once left my cheek warm and smelling of toothpaste. No doubt, I will shed a tear...or two. Not for my own selfish needs of hugs and kisses, but, for this AWEsome boy who is becoming more and more independent....just as he should be....just as I want him to....just as I feared he never would. 

As for you glorious 6R teachers, still hanging out in the Queens Borough Hallway, remember that alone, you may have been the 2 tbs of butter, the cup of sugar, or the 1/2 cup of milk, but, combined together, you, along with every other teacher Ryan has been blessed to have, all helped my son get that elusive piece of the pie. 

So, if you catch a glimpse of my boy movin' on up, through the seventh grade hallways on the East Side, keep saying hello, keep trying to reach him because I promise you, you have made an everlasting mark, even if you are ignored, you have not been forgotten. And if you keep trying, I promise, one day, you may be given just a tiny little crumb of that pie you helped bake, in the form of a smile or a quick hello, which may not be as filling as it once was, but, I hope it will still be equally satisfying.

As for me, well, just like Archie Bunker watched his former neighbor George Jefferson move on up without him, I will grumble and complain about being left behind, but, inside I will be beaming with pride hoping that one day, my boy remembers who was always by his side helping put all the necessary ingredients together before he finally got a piece of the pie. And selfishly, like any mom who loves her son and never, ever wants him to move on up without her, I will constantly remind Ryan that "as long as we live, it's you and me baby, there ain't nothing wrong with that".

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Click on the audio below and you will be Movin' On Up too. Bet the song is stuck in your head for the next 24 hours. You're welcome.
2 Comments

The "i" in Team

6/5/2014

6 Comments

 
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Tick tock, tick tock....there are only a mere 24 hours until the school year ends, 24 hours until this mom can breath a sigh of relief that Ryan not only survived his first year of middle school, but, that he kicked butt and took names. Actually, he really didn't "take names" because names are not his strong suit, and where in the world would he "take" a name anyway? And even though I think Ryan "kicked butt" he would tell you he most certainly did not kick butt because that would be rude, violent, against the rules and a lie. So, I guess I will just say that with only hours left of 6th grade, Ryan's school year was AWEsome! Hooray!

There will be plenty of "I told you so's", from the likes of my husband, Ryan's therapists, my friends, his brother, and his former teachers. People ready to gloat that all my fingernail chewing, all my sleepless nights, all my How to Survive Middle School with an ASD Survival Guides that I created, were all for not. Gloat away folks, because no one could be happier about being wrong than me. I just wish all these gloaters would share their crystal balls with me and spare me all the anxiety that will surely roll around in August once again. 

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When Ryan reluctantly walked out the doors of elementary school last year at this time, anxious for what was yet to come and heartbroken for what was left behind, my biggest worry wasn't school yard bullies, getting him up at 6:15AM or the shape of the school pizza (although those were all very genuine and legit concerns), what kept me up at night on the "what if" roller coaster that is my brain, was the concern of what if Ryan, my one man, man, can't survive being placed on a middle school team. I don't meant the basketball team, the volleyball team or the debate team, I mean an academic team that consisted of five teachers for core subjects and ten other teachers for various specials. Ryan was use to one or two teachers that he had to get to know and who had to get to know him. I was AWEnestly convinced that rather than be placed on the 6R Academic Team, Ryan would have chosen to take his chances of a spike to the face on the middle school volleyball team. The pain of a volleyball spike would diminish much quicker than enduring a different teacher for nine periods each day. 

I know it's probably been a while since you have done middle school math (unless of course you have a middle schooler and unlike me, you can actually help your kids with math past the second grade), so I am going toss out two equations for you. Here goes:

9 class periods+9 teachers+9 varying teaching styles+9 sets of rules=1 anxious boy

1 anxious boy=1 worried, fretting, nutsy mom

I always hated math.

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Ryan isn't much of a "team" kind of guy. Being part of a team, means getting to know your teammates, understanding everyone's role on the team, and being able to interpret facial expressions, body language, and social cues that often go hand in hand with being part of a team. Autism makes all those things hard for Ryan, not impossible, but, difficult enough that he would rather stick with his one man show. Ryan is a solo sport kind of guy, he prefers having to only look out for himself and being responsible for "I" not "we". The saying goes, "There is no i in team", but, Ryan most assuredly would beg to differ (actually he probably wouldn't since there literally is no letter "i" in the word team, but, work with me here folks, it's been a long school year).

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Throughout the school year, I never once heard Ryan say "we" or "team", but, he frequently and proudly used the word "I". "I made the honor roll!"...."I got a 100% on my test!"...."I handled it on my own."...."I passed."...."I understand the material perfectly". "I, I, I", not "we, we, we" and Ryan's right, he did do all those things, but, just like a pitcher may run off the mound screaming, "I threw a no hitter!", without his team's flawless defense, without his team's support, a no hitter would have been impossible. A quarterback who is patting himself on the back for having such a successful season may say, "I hold the NFL record for most completed passes." which may be true, however, without his defensive line protecting him and he receivers catching the ball, that quarterback would not have thrown a single completion.  

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For Ryan, whose fight or flight is so heightened, taking care of "I" makes recognizing the importance of "we" challenging. Autism makes the notion of even an academic team, seem full of unforeseen, unexpected, danger and peril. An academic team, may seem almost as dangerous as a rope team climbing Mt. Everest. The English teacher may use a stopper knot to keep her team together and safe, while the Science teacher may prefer to use prusiks on the rope, a completely different way of reaching their goal safely. These different strategies all work, but, for a child who prefers "same" getting to know all those differences and understanding them, is like free climbing Mt. Everest without a Sherpa.

A mountain climber who screams from the top of the Earth, "I climbed Mt. Everest", would have never made it to the summit without being tethered to a team, a team whose soul job is to keep each member safe, while they reach the summit. Being part of a climbing team, the team members understand the whole "you go, I go" motto, even though none of them want "to go". They understand that being tied to that team helps each climber, regardless of the differences in ability and stamina, reach their goal. Often the distance of the rope is shortened for the climber who occasionally stumbles and struggles to ascend, the climber who may struggle to see the crevasse buried beneath the snow. The members of a good rope team, know when and how to make the adjustments and keep a struggling climber close, ready to self-arrest and do whatever it takes to make each member of the team reach the summit safely...even the climber who struggles. No mountain climber can ever say "I" without the "we" of his rope team that guided him through hazardous and unpredictable terrain. 
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The academic team that Ryan was fortunate enough to tether himself to for his first year of middle school, kept him close and kept him safe as he found his way over the hills and peaks of the strange terrain of metaphors and figurative language, as he eased himself over algebraic methods, and happily explored the elements of the Earth's crust, all while making new discoveries on the people, climate, and culture of French Guiana. This amazing team, knew when Ryan felt safe enough, when he became more confident in his abilities and they extended the distance between themselves and him on the rope. A distance great enough to make him forget the "we" in team and happily declare, "'I' made it to the top!".

With only hours left until 6th grade comes to an end, I promise you Ryan will descend the bus steps on that last day, with tears in his eyes since ending something familiar and beginning something new is both difficult and heartbreaking for my sensitive son. With all his successes, all his accomplishments, Ryan could scream from the rooftops,"I did it, I made the Honor Roll all four marking periods and I am a seventh grader!", but, he won't because bragging isn't his thing and because climbing on the roof, untethered is as dangerous as free climbing Mt. Everest. This declaration may not be shouted from the rooftops, and chances are high that he won't even utter a single word about it, but, as his forever grateful, lifetime Sherpa, no one knows Ryan better than me, and I promise you 6R Team, he feels it, he knows it, and he believes it, all because he was tied tightly to an amazing team. 

Thank you 6R Team, for pulling my son, for pushing him, for securing him, for reaching him, for teaching him, and for believing, "different, not less".  Mostly, this worried, tired, about to open a bottle of wine mom, thanks this team of AWEsome teachers for not allowing my son to fall through a crack or a crevasse by providing him with just the right amount of rope that gave him the strength and the confidence, to reach the top and to proudly find the "i" in team.
"I cannot emphasize enough the importance of a good teacher."
    -Temple Grandin

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Where Ryan spent hours putting the "i" in team.
6 Comments

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.

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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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Walk the Walk

1/24/2014

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

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

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

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

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

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

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

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

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

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

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

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

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

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

11/13/2013

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

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

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

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

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

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

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

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

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

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

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

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

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

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