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Movin' On Up

8/21/2014

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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.
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Pointing the Finger at Autism

7/31/2014

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Ahhhh....the end of July, that glorious time of year when the kids are constantly bickering and ready to rip each other's hair out and you have finally perfected the summer time skill of blocking out the madness with the beautiful image of that big, yellow school bus driving down your street. It's that point in summer where yes, technically there is still a month of summer left, but, yet, you feel the tide turn. Something definitely changes.

As you sit in the backyard gathered around the fire pit, the kids are no longer bugging for smores, in fact, chances are, they are all inside watching television, the novelty of warm summer nights gathered around the fire has faded with the embers of the June flames. The iridescent glow in the backyard that in early June was filled with fireflies, becomes dimmer and dimmer. The nights, although a subtle change at first, are becoming shorter and cooler and every retail establishment has long since abandoned the racks of shorts, bikinis, and tank tops and replaced them with jeans, sweaters and jackets. 

With all these signals of summer slowly coming to an end, nothing is more telling in our house than an empty swimming pool. For some reason, when the calendar is flipped from July to August, the long, lazy days of lounging by the pool do not flip with it. 

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The first summer after the pull went in, I thought for certain Dan was going to buy a time clock and hand each one of us a time card, forcing us to clock in and clock out each and every time we entered through the pool gate. All that money that literally gets dumped in your backyard, better be money well spent, so, by all means, the kids must swim all day, every day. The only allowable exception to swimming that first summer was if a low rumble of thunder could be heard in the distance, and as long as that distance appeared to be ten miles away or less.

One of the main reasons this worrying, whacko mother agreed to have a large body of water placed in the backyard was because Ryan, the most sedentary child on the planet, loved to swim. In fact, I wrote a blog last summer, http://www.awenestyofautism.com/blog/my-fish-out-of-water about my little fish out of water and his love of the quiet peacefulness he discovered in a muted, calming world 8 feet under water. Swimming, was hands down, the best, and quite AWEnestly, the only, form of exercise my boy got, so a big, deep hole was dug in my backyard and filled with money....I mean, water. And for the past three summers, Ryan enjoyed that pool all summer long, until the calendar flipped from July to August of course.

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    So, you can imagine my surprise and my heartache that on this last day of July, my little fish has not so much as stuck his big toe, or should I say big fin, in that pool. The closest Ryan came to "getting wet" was filling a water gun up to squirt the dog. This boy, who once upon a time would have willingly traded his lungs for gills in order to spend half his summer underwater, has now opted for dry land and as of the writing of this blog, he has no intention of "getting in" anytime soon. I am dumbfounded.

As I have done so many times over the course of Ryan's lifetime, I quickly pointed the finger at autism for this drastic change in my boy's behavior. I first assumed that it was a sensory thing, so, I told Ryan if he didn't want to swim because he hated the feel of the icky, sticky sunscreen, he could swim in the evening when sunscreen wasn't necessary. Ryan assured me that he did not hang up his gills due to sunscreen.

I then wondered if there had been one too many bee sightings, even though we purposely did not plant flowering bushes around the pool. Autism tends to make Ryan's anxieties, bugs being at the top of the list, somewhat consuming, so it stood to reason, autism and "killer bees" were to blame. Yet, Ryan, who once needed me to walk past the azalea bush to cross the porch, no longer needs my hand as he bravely, albeit rarely, enters outside. This threw the bee theory out the window.

It also crossed my mind that perhaps with puberty in full bloom, maybe Ryan felt awkward about his changing body. When I carefully inquired about this new line of thinking I was told, "I'm perfectly fine with my body.". Scratch that theory too.

I told Dan, Kyle and anyone who would listen, "Ryan has something stuck in his head about swimming, some new fear, phobia or idea he is perseverating and obsessing about. Curse that autism." I just felt certain it was autism that was keeping my boy from jumping off the diving board and I was determined to push him back in that pool one way or another.

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Ironically, my knee jerk reaction (perseveration) to immediately point the finger at autism regarding Ryan's new found avoidance of the pool, made Ryan move even farther inland. You know the saying, "When you point your finger at someone, there are three fingers pointing back at you"? Yeah, that.

My constant nagging and non-stop barrage of questions in an attempt to decipher why Ryan wouldn't get in the pool, as well as treat bribes, and the occasional threat of diminished screen time, in order to get his butt in the pool, only backfired. My desire to find out "why" only caused Ryan more stress about swimming which has made him dig his heels even deeper into dry land. Pointing the finger at autism, really did point all the other fingers right back at me.

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Refusing to look at those other three fingers pointing at me for making a situation much worse, Denial and I told Ryan we were going to take back his new swim trunks, which all still have the tags on them, as a last ditch, "that oughta show him" resort, to which Ryan very calmly responded, "Yeah, go ahead, they were a waste of money." WTH?!!

I just didn't understand it. Why would autism take swimming away? Friends, yeah, I get it. Parties, yep, totally understand that too, but swimming? I just couldn't wrap my head around it. Why take something away that Ryan loved so much? Then after asking Ryan for the 150th time, why he didn't want to swim anymore, he finally looked at me and said, "I'm over swimming, it just got boring." I finally put my aging, non-manicured, pointy finger down. If autism could smile, and say, "na nee na nee poo poo", it totally would have. Ryan should have done it for autism instead.

It seems that if I choose to point the finger at someone, if there has to be someone to blame, I needed to stop pointing the finger at autism and start pointing it at Father Time. Was Ryan's lack of swimming as simple as something he outgrew? Sure, many kids still like to swim as teenagers and even adults, but, Ryan has always been his own guy, not worrying what others do, or what others expect. 

When Ryan stopped playing with his Thomas the Tank Engine trains, I didn't point the finger at autism, I just chalked it up to growing up and losing interest. When Ryan gave up Blues Clues for Spongebob, I didn't point the finger at autism, I just accepted that Steve was no longer as funny as Patrick. So, I guess when it comes to swimming, maybe Ryan has decided that there is more exciting things to do on dry land than there is in an 8 feet deep swimming pool. As a mother who "goes under" and actually soaks my hair about four times a pool season, and who prefers to float atop a raft with a well designed cocktail holder, one would think I would get it.

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I guess old habits die hard. Denial pops in for a brief summer time visit and I am quick to point the finger at autism for anything about Ryan that seems "different". 

It's time I retire that pointer finger (the middle finger will continue to remain active, since as of yet, I have not found anything else more suitable for the a** who cuts me off on the highway) and take a look at the three fingers pointing back at me. I need to accept that Father Time will transform my boy into a teenager in just a few short weeks and along with that change, more changes will be on the way. Changes that I may see coming and changes that may knock me off my raft and get my hair wet. Changes that have little to do with The A Word.

Rather than pointing the finger at autism, I am learning to be grateful that Ryan has come so far and is able to make choices, decisions and have thoughts that are in no way influenced by autism. Most days, the choices Ryan makes are made just because he is Ryan, not because he has autism. 

So, as the summer days slowly come to an end, I will need to tear up Ryan's time card for the pool time clock because it appears he has hung up his swim trunks this summer. Just in case he has a change of heart, (very doubtful since it will be August tomorrow) I will keep at least one of the three new swim trunks I purchased this summer. 

If the swim trunks still have the tag on them by winter, I will hold on to them, just like I have held on to all the Thomas engines as well as the VHS Tapes of Ryan's beloved Blues Clues. Some things I must let go of and some things I will always hold on to....things that are bittersweet reminders of days gone by, days that are fading as quickly as the summer sunsets, days that have had nothing at all to do with autism, but, days that have been filled with choices, changes and progress. 

The only finger pointing for such change and progress should be at Ryan. He has made the changes and the choices, not autism. The only finger Ryan should see is his own, shimmering in his reflection of the boring, backyard pool that he refuses to swim in anymore, regardless if there is still nine hours left until we flip that calendar from July to August and the "Pool Closed" sign is hung up for the season.

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This is as close as Ryan came to getting wet this summer...showers aside.
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When Worlds Collide

7/24/2014

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PictureGeorge Clooney in Gravity. Warner Bros Film
As my husband and I watched Gravity this past weekend, I wondered why I was subjected myself to the terrors of space a second time, since after watching George Clooney, who can even make a space suit look sexy, float off into space nearly killed me the first time I watched it, why in the world was I watching such a horror happen again? I mean, losing George briefly to former pro-wrestler Stacy Keibler was hard enough to take, watching him drift off into space alone...without me....twice, well, that's more than any woman should have to bear.

Besides losing George to the infinite vastness of space, Gravity was tough for me to watch. I have issues with the whole running out of oxygen, freezing to death, and possibly burning up while entering the atmosphere, type conditions. I know there are brave astronauts and scientists who risk the dangers of space due in part for the betterment of mankind, and due in part because it really makes them look good on match.com, and I say, kudos to them. Lord knows we sure are doing a number on this world so someone, yes, even if it means sacrificing George, better find us a new world fast.

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Along with these super smart rocket scientists, there are even some dumb, adventure seeking civilians ready to board the Virgin Galactic Space Shuttle for a mere $200,000 in order to experience the rush of leaving the Earth's atmosphere for a round trip ticket to space (and hopefully a better outcome than poor George). AWEnestly, for me, the only thing scarier than blasting off from this world in search of a new world in the oxygen-less, freezing cold, meteor ridden, vastness of space, would be blasting off this world with The Biebs in a drooping butt spacesuit strapped into the seat next to me.

Call me a scaredy cat, a cissy, a wus or boring, but, there is no way I'd want to leave the world that I have become so accustomed to, a world with plenty of oxygen, AC, heat, and Oreos that don't float away when you try to dip them in milk that also floats away, for a world that is confusing, different, scary and hard to navigate. Especially, if I had Bieber leading the way. 

Even if I didn't burn up, freeze to death or run out of air, but, landed safely in a new world, what if upon my arrival, no one understood me? What if no one tried to understand the world I came from in order to make me feel safe, happy and at home? What if no one cared enough to learn about my world and all they wanted was for me to assimilate to their world, so I wouldn't look or act so different from the local natives? Sometimes, it just feels safer and easier to stay in my own world, and I would bet a $200,000 First Class ticket to space, that Ryan feels exactly the same way.

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I have to be AWEnest folks, there are days, ok, fine, weeks, where I feel like it's safer, easier and better to stay in my world, so I constantly suit Ryan up and do my best to shuttle him into my world, while often forgetting to put on my spacesuit and enter his. Ryan often fights this ride, because to him, his world is far superior and much easier to navigate than mine.

This summer, more so than any other time, it has felt like Ryan and I have been living in two different worlds. So, in order to close the space between our two worlds, I have been busting my butt to strap Ryan into a space shuttle and rocket him into my world, with very little regard to what he is leaving behind in his world.

I rationalize these space shuttling decisions by reminding myself that my neurotypical world is where most people live and where most people are comfortable. After all, isn't my world the acceptable ideal? A world where people socialize, communicate and interact with one another to make a happier, productive world. Not a solitary world, where video games, television shows, silence and the oh, so great Steve from Minecraft, is preferred over all other lifeforms?

I have spent so much time and energy telling Ryan to "check back in", "turn off the game", "go outside and play", "come to the store with me", and yes, even, "Earth to Ryan", yet, I have spent very little time or energy visiting his world and finding out what is so life sustaining for him there. After nearly burning Ryan up, time and time again, while trying to pull him into my orbit, I decided it was time for this scaredy cat girl to break out of the comforts of my world and join Ryan in his. Turns out, Ryan's world wasn't so different from mine, and the bonus was, I didn't even need a spacesuit.

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Ryan was in his world, in his bedroom to be more specific, playing Minecraft on the laptop with his iPod Touch right next to it playing some type of music. And for a change, I did not try and force Ryan into leaving his world and coming to visit me in mine, instead, I sat down next to him and asked Ryan what made his world so special. This opened a portal into his world he very rarely shares with me, or with anyone, because most people, including his guilt ridden mother, are too busy trying to close that portal in order for him to join a world where it is often cold and the air feels so thin that it makes it hard for my beautiful boy to breath.

After propping Ryan's portal open, and spending time in his world, it turns out, that Ryan's world is not so different from mine. He was listening to Minecraft parody songs on his Ipod Touch while snuffing out creepers on Minecraft. Not so different than me listening to my latest playlist while snuffing out dust bunnies with the vacuum cleaner. These songs he was listening to, which are so unfamiliar in my world, are all parodies of chart topping songs that are very familiar in my world thanks to Pandora, Sirius, and iTunes Radio. I suggested that we play Ryan's music on the bluetooth speaker in my room so we could really jam to it. Ryan beamed at the idea.

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As the first chords of Moves Like Creeper (sorry Maroon 5 it may top Moves Like Jagger) blared out of the speaker, I swear, the sun illuminated my boy and his world in a way I had not witnessed all summer long. Ryan's smile, his joy was palpable as I finally landed on his soil. 

Ryan sang the lyrics to Moves Like Creeper  while I belted out, "I got the mooo-oooo-oooo-oooo-ooo-oves like Jagger". Ryan was so happy while we both sang and danced on my bed that he didn't even criticize my "terrible voice" until at least 15 minutes into our sing off/dance off had begun. As we were singing, dancing, laughing and living together in that moment, I realized that finally both of our worlds had collided, and it was not a cataclysmic event, in fact, it was perfectly AWEsome. This collision has hands down, been the best night of my summer and I am so glad that I finally took the time to see the stars that make his world so bright.

As often as the gravitational pull of my world tries to suck Ryan in, I recognize that I need to occasionally shut down my gravitational field and shoot on over and join Ryan in his world. While there, I must look for ways that both of our worlds can collide with minimal damage to the lifeforms that inhabit our unique, but, strikingly similar worlds. I so frequently ask Ryan to risk his air supply to come to my world, yet, I get so caught up in breathing my own air, sometimes I forget to breath his.

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I understand that the world of autism in many ways is very different than the neurotypical world many of us live on. I also understand that it is important for Ryan to assimilate to my world since that is the standard most inhabitants of this world expect, but, I think it is equally important that those of us who are aliens to the autism world, are respectful and kind, and that we do our best to understand what is so important in a world that differs from our own. We must respect those differences and allows those differences to remain when those living with autism visit our neurotypical world.

If the price of space travel is greatly reduced over the next few decades and I get a little braver, perhaps I will venture out into "the great unknown". If I do, I promise I will not sit next to Bieber, no matter how many trips he has taken before me or if he finally decides to pulls his pants up. 

There is no doubt that it is Ryan I will want beside me since he has become so successful at living in and navigating an unfamiliar world. Ryan has proven that no matter how difficult the terrain may be, how unforgiving the natives are, or how unfamiliar a new world may be, Ryan can adapt, and in the process, he has shown how important it is for others to adapt too. And if there is room on our shuttle, I will save a seat for Tom Hanks, since he survived a deserted island with only a ball named Wilson, and he landed Apollo 13 safely in the South Pacific. Sorry George, you will need to take another shuttle, I just can't trust you to commit. 

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Little sister Emma has found the portal to Ryan's world.
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Exit Stage Right

7/17/2014

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Won't he look so much better than Susan Lucci when he gets his Emmy?
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The Placebo Effect

4/24/2014

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I am a self-admitted, self-diagnosed, hypochondriac. In fact, if there were a club for hypochondriacs, I feel certain I would be unanimously voted president, as long as I wasn't out sick or at a doctor's appointment the day of the nominations. If it's a scab on my arm that's been there for three days, it's most certainly skin cancer. A week filled with achy joints is not my "Welcome to the Mid-40's Party", chances are good, I have Lyme Disease. A tight feeling in my chest is not a result from skipping the gym for three weeks then hitting the weights as if I hadn't missed a day. Oh nooo, that tight feeling most assuredly is not muscle strain, it must be angina, therefore, a stress test is right around the corner. A cold and cough that sticks around as long as the pollen sticks to my porch furniture, is not something as simple as seasonal allergies, but, chances are very high that I have contracted a rare form of Avian Influenza, aka, Bird Flu. Yes, if I have read about it, chances are, I have it, or I will get it...soon. A doctor once told me that I "look for the unicorn instead of the horse" which is a much nicer way of saying, "Lady, you are bat sh** crazy".

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I would love to tell you that my hypochondria is limited to just my own perceived illnesses, but, that wouldn't be AWEnest of me. Every one of my doctors, and sadly, my children's doctors, have a photo of me lassoing a unicorn in their files. I never leave the doctors disappointed as I constantly walk right past the horse, completely ignoring him, so worried about finding that stupid, elusive unicorn. In fact, I think I leave many of the doctors shaking their head in bewilderment and looking forward to their lunch break when they can share my latest disease fearing, unicorn searching frenzy with the other doctors in the lunchroom. Yes, I'm a frantic worrier about my children's health, more so than my own (my primary care physician, my gynecologist, my breast care doctor and even my dentist would all find that VERY hard to believe). So, when Ryan was sick for a week with a fever, cold, and horrific cough (Bird Flu, Swine Flu, West Nile Virus...have the mosquitoes even been born yet?), WebMD was constantly pulled up on my phone and Ryan and I made a trip to the pediatrician's office....twice.

I was convinced Ryan had pneumonia, RSV, strep throat or something that would require some type of medication and a quick fix, but, alas, it was not bacteria born, it was the dreaded V Word...virus, which meant no antibiotic, no quick fix, just plenty of fluids with the oh so wise words, "just let the virus run it's course". Are you sure there isn't a pill, an ointment, an elixir, something to speed up and ease up this so called course? I mean, Ryan had already missed a week of school which meant he was way off schedule and that translates to lots of make up work that will come home upon his return to school, which increases the likelihood of meltdowns, which greatly increases the probability that I may feign a case of Ebola Virus so the CDC can quarantine me until all the make up work is completed. Are you absolutely, positively sure there isn't a pill for this?
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Whatever this VIRUS was (I no longer say "bug", read my blog post, Literally Speaking in March, 2013 to understand why), it made the dreaded, media hyped, Swine Flu seem like a walk in the park. Most days, Ryan's fever was in the 103-104 range, you know the kind of fever where they feel so miserable and just want cuddled and you have to put on a spacesuit to protect your skin from the heat. Fortunately, the fever is now gone, but, the cough, which at night echoes off the walls sounding remarkably like we are living in a wing in an old tuberculosis hospital, still lingers on...and on....and on. Poor fella, he's not a fan of being sick, and like any mom, I hate to see my kids sick too, until one day, several years ago, my old friend Denial plopped down on the couch next to me and my fever ridden boy and showed me a research article she had just discovered on Google (of course). 

This was back in the day when my old friend Denial and I were thick as thieves. Denial told me that some parents believed their child's autism symptoms abated when their child was sick with a fever. What? Yep, many parents noticed a reduction in stimming, an increase in language and an overall reduction of autism symptoms when their kids ran a fever. Once the fever went away, the autism symptoms returned. In fact, this was reported by so many parents enough times that a paper published in the journal Pediatrics in 2007 by Drs Dominick Purpura and Mark Mehler of the Albert Einstein College of Medicine, addressed this phenomenon. These two doctors discovered that the correlation between a fever and reduction of autism symptoms had to do with a part of the brain called the locus coeruleus. Yeah, I don't know how to pronounce it and I certainly had no idea that was part of my brain either. AWEnestly, I didn't care about all the scientific stuff that I couldn't even begin to say or understand, I was just astounded that a fever might allow me a chance to connect with my son! Well alrighty then, I decided to sit back and wait for the next virus to hit.
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Don't worry, no need to call child services, I didn't go all Munchausen Syndrome by Proxy on Ryan. I didn't intentionally get my kid sick by sneezing on him, running him into the neighbors house where strep throat was running rampant, or hide his Flintstones Vitamins from him, but, I have to be AWEnest, this complete and total hypochondriac was almost as excited for the next cold and flu season to hit as I was when I discovered WebMD. I couldn't help but wonder, if my guy got sick, would I starve his cold and feed his fever, to see if maybe, just maybe those parents were right? For a kid who constantly chews on his fingers, it didn't take long for Ryan to pick up a virus and for this mom to sit back and see if a fever, would in fact, crack his beautiful, impenetrable shell. 

I remember that virus like it was yesterday. I recall checking Ryan's temperature religiously, which of course he hated, but, I kept telling myself, that if these parents were right and his autism symptoms abated with the fever, then eventually when the fever rose, he wouldn't mind me sticking a thermometer in his ear every five minutes. Sure enough, in a matter of hours, Ryan's fever crept up and once it hit 101, I gave him some Motrin (I'm not that twisted that I'd make him suffer), but, I did sit next to him on the couch observing my sweet boy before the Motrin kicked in, waiting to see if his language improved, his connection got stronger, or if his Thomas the Tank Engine scripting subsided. In my heart of hearts, I did believe that Ryan seemed more "checked in". He answered my questions more readily, he responded more appropriately, and he let me snuggle him for hours. Was this a result of the fever taking hold of Ryan's locus coeruleus or was this just a little guy who felt so miserable he answered my questions so I'd leave him the hell alone and he could get back to watching Thomas?
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Denial assured me that Ryan's fever made him "better" which of course was an oxymoron for a kid whose eyes were glazed over with fever and who had snot dripping off his chin. Were Ryan's autism symptoms really reduced or was Denial fooling me again? Was my fear of The A Word so visceral that this research study became my placebo? My quick fix, my belief that something "wrong" got "better" with something as simple as a fever, or was it "all in my head"? As a mother who was so frightened by autism due to my lack of understanding, I think I would have believed anything might make Ryan "better". The placebo effect, a belief that some type of treatment will change a particular condition is so strong, that there is a perceived actual improvement in the condition, when in fact, there is none. For a long time, Denial and the placebo effect were hands down, part of my journey into autism acceptance. I kept looking for the "quick fix" whether it was real or all "in my head". I needed something to hold onto, something to give me hope, something to believe in, something that would one day make my son "better". More importantly, I needed something to wean me off of this powerful addiction I had with Denial. Or at the very least, a pill that made me think I had.

Don't we all want a quick fix or a pill to "make it better"? A pill that will heal a broken heart. An amnesiac syrup that will cause us to forget painful mistakes. An ointment that can rub away and clear up hurtful misunderstandings. A shot that may sting for a second, but, can protect us from hurt in the future. A fever that effects the locus coeruleus and makes autism fade away. Just like so many things in life, there are no "quick fixes" to make it all better, nor are there placebos to make you think things are better (unless of course you count wine). A broken heart needs time to heal. Mistakes may be hard to admit, but, sometimes, it's the only way to learn a valuable lesson. Misunderstandings take patience and forgiveness. Suffering through dark, hurtful times, makes us appreciate the light that much more. 
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So, whether or not a fever helped Ryan "check in" all those years ago by reducing some of the hold autism had on his locus coeruleus, or whether the study I had read about became a sort of placebo, I will never know. What I do know, is back when Denial was my friend, I was terrified, I felt terribly lost and alone and the quick fix I was looking for wasn't to make Ryan "better" because he was not, and is not, sick, broken or diseased, the quick fix was for me. I was the one with the damage, the boo boo, the hurt. A hypochondriac mother who was so worried about finding that stupid unicorn, that I almost missed the beautiful, magnificent, colt galloping right in front of me. 

As Ryan and I sat in the pediatrician's office (twice) last week, and my boy's temperature registered 103.7, he was the same Ryan he was before the fever. Ryan was brilliant as he assured the doctor that a strep test would not be needed since he felt fairly confident his "lungs had pneumonia" so the stethoscope was the only form of torture necessary. Ryan was anxious as he insisted (in a bossy, not terribly nice voice) on doing the flu swab in his nostril himself for fear the doctor would "poke" his brain then held the "contaminated" swab over his head refusing to give it to the doctor for fear she would "poke" him anyway. Ryan was proud that he survived the doctor's appointment with only a hint of tears and no shot or strep test. And Ryan was clever as he told me his blood sugar was dropping and convinced me that the only way to elevate it was via a Sheetz slushie.  
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With or without a fever, Ryan is AWEsome and just like a virus that has to "run it's course", autism will continue to run it's course throughout Ryan's lifetime. Some days, some situations, some moments, autism will be a bigger "symptom" than others. Some of the symptoms may disappear and be replaced with new symptoms, symptoms that may not show up on WebMD, leaving me completely at a loss. As I continue to watch Ryan grow, achieve and succeed, I am amazed at the fear that once held such a life altering grip on me. My fear, my unicorn searching, was all part of my journey that had to "run it's course" because without my mistakes, my worries, my obsessive Google searching, I would not be where I am today, therefore Ryan may not be where he is today either. 

You see, as Ryan's mother, I am his placebo. I cannot make autism go away with a pill, a shot or an untreated fever (I swear I always give him Motrin), but, I can be the voice when Ryan can't find his words, I can be the advocate when Ryan is too scared or too confused to fight, I can find the support he needs to be successful and I can be the arms that squeeze him to let him know he is loved. I will always be Ryan's placebo, because on the days when life is hard, the days when his differences stand out, the days when his "symptoms" are more severe, as Ryan's mother, I will always be what makes him "feel better" and no, "feeling better" is not "all in his head", that my friends, is "all in his heart".

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Chuckie Disease, I mean, Chuckie Cheese. A hypochondriac's worst nightmare.
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Champions (noun) and Their Champions (verb)

4/2/2014

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

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

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

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

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

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

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

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

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Small Talk is BIG

3/27/2014

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

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

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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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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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Pampered, Inspired and Humbled

2/23/2014

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This is a quick shout out to all the strong, loving, AWEsome moms I met yesterday at the 2014 Day of Pampering at the First United Methodist Church of Mechanicsburg. So many women shared their heartache, their struggles, but, mostly, their joy with me. To quote the beloved Dr. Seuss, my "heart grew three sizes that day". I promised these AWE inspiring moms that I would post the video I shared yesterday since there was a bit of a technical glitch with the audio. I also promised that I would invite everyone in attendance to my house for a glitch free showing along with wine, but, due to my public speaking anxiety, I failed to give the audience my address. I swear, it had nothing to do with my fear of the bill for the wine I would have needed to purchase for these amazing ladies.

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I was AWEstruck by your compassion, strength and determination to make sure your intricate, one of a kind snowflake remains visible and that their uniqueness is never lost in the blanket of snow. Remember, even on the days when your snowflake seems invisible to everyone, YOU will always make sure he or she can be seen. "Stand up Mother!" because you are not invisible either. Your child sees you and so does every mother loving their unique snowflake with a "different" ability!

Here is the clip from the Emmys when Temple asked her mother, who believed, "different, not less" to "Stand up mother". Makes me cry EVERY SINGLE TIME.
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I Have Spawned Into a Minecraft Creeper

2/20/2014

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Minecraft. If you haven't heard of it, then you obviously do not have school aged kids, you do not ever enter into retail establishments and you quite obviously have not fallen prey to social media. In other words, you must be living under a virtual pile of Legos. I admit, I'm no Minecraft expert, but, since Minecraft in the ONLY thing that comes out of Emma and Ryan's mouths these days, I have been dragged into the Minecraft world, with no sword or pick axe to gauge my ears out, so I've picked up on the basics.

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From what I have been able to grasp, right before my eyes glaze over from the obsessive Minecraft chatter, you are alone in a virtual world that sort of resembles an island. With little to survive than your bare hands and the various minerals and materials you can find in said world to build shelter, tools, and whatever else you need to protect yourself from the things that go bump in the night. Think Tom Hanks in Castaway, sans Wilson, and throw in a zombie or creeper...or two. There is a creative mode with lots of creative building options to enhance your anything goes virtual world and a survival mode where you also get to build, in order to protect yourself from the zombies, creepers and spiders who are just waiting to take you out. Tom Hanks had no idea how good he had it with only madness barking at his makeshift cave door. And unlike Tom Hanks, in your Minecraft virtual world, you can continue to be alone in your deserted island like world, or you can invite friends to join you.

In addition to the Minecraft game itself, there are also YouTube Videos where people narrate and record their actions in their Minecraft virtual world. The most famous of these is Stampylonghead, with over 1.6 million followers and over 818 videos. This dude, with his horribly overexaggerated and highly excitable British accent, has a lot of time on his hands. I swear, I hear Stampylonghead while awake and in my sleep. This is because Ryan can mimick Stampy's voice to a tee and does so most of the day and in his dreams at night. I swear, Ryan's British accent is so good, he could easily land a role on Downton Abbey. I understand why parents like this Minecraft game. There is a lot of creativity, imagination and wholesome, mostly non-violent fun that draws kids in like bees to honey. As cool as the game is though, I'm ready for a bug zapper.
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I had been telling Ryan for months that I thought he should try Minecraft since I read that tons of kids, including kids with an ASD, love the game, but Ryan kept saying it was stupid, because Ryan has a teenage brother who told him it was stupid. Needless to say, this teenage brother, who shoots Nazis in Call of Duty and runs from the police in his Lamborghini while playing GTA (Grand Theft Auto for all you newbs) feels that a virtual Lego type world, of old style graphics, is lame and since Ryan has worshipped Kyle from the moment Ryan was born, Ryan believed Minecraft was stupid too. Until Ryan's little sister built her first shelter and killed her first Creeper. Emma didn't reach "worship" status, but, she did impress her brother Ryan, which is more difficult than taking out a zombie with a diamond sword (we sound like a terribly violent family, don't we?).

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Ryan's worship like nature of his big brother Kyle is twofold. One, Kyle has an extremely big heart and he "gets" Ryan, and two, quite simply, is birth order. Kyle was here first, so, Ryan doesn't know a life without Kyle, but, you can bet all your Minecraft diamonds that Ryan remembers life before his little sister arrived on the scene. Suffice it to say, Ryan would never string the words "worship" and "Emma" together in the same sentence.

Prior to Emma's arrival, Ryan had Mommy's attention most of the time. After all, Kyle was older and let's be AWEnest, Kyle was easier. Ryan struggled with sensory overload which lead to meltdowns. Ryan had a hard time communicating, which lead to frustration and subsequently, more meltdowns. In those early years, with all those meltdowns (Ryan and mine), we were more like a run for your life Chernobyl Disaster than a happy go lucky family. So, for a kid who craved routine, who survived on same, and who counted on Mommy to get him safely through his day, a new baby was a swell idea! Poor guy. Ryan had no idea what he was in for, and quite frankly, neither did I.
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When Ryan came to visit Emma and I in the hospital after Emma was born, he literally threw a stuffed animal on her head and he did not acknowledge her presence. He was more interested in the buttons that raised and lowered the bed, the nurse call button (we almost got thrown out) and the cookie I had on my tray from lunch. This "pretend she doesn't exist" routine lasted a few weeks, until one day Ryan decided enough was enough and he locked his traitorous mother and screaming, smelly baby sister outside twice in one day.
 
It was a sticky, humid, beautiful summer day. The kind of day you appreciate in mid-August because you know all too soon, the heat and warmth of summer will soon be replaced with the crisp, cool days of fall. As I sat on the porch swing, sniffing my new baby's head, taking in the fading days of summer, I smiled happily thinking all was right with the world. My smile was quickly replaced with a puzzled expression at the slight "click" I heard at the back door. I saw a flash of red run past the window and I knew in an instant, that "click" was not the sound of summer wishing me well and locking me out, it was my darling son locking me and his baby sister out of the house...with not another soul inside the house.

I slowly got off the porch, trying not to jostle my sleeping princess and went and knocked on the door. "Hey baby, will you unlock the door and let sissy and I back in?", I said sweetly while peering through the window. There Ryan sat on the couch blatantly ignoring me while he happily played on his Leapster. "Ryan let Mommy in", a little more sternly. Ryan got off the couch and I immediately felt relief since I assumed he was coming to open the door. Nope. Ryan climbed on the back of the love seat, looked me in the eye (no trouble making eye contact in this situation) and shook his head no. Well, suffice it to say, that the postpartum hormones kicked in at that point, "Open the #*%$*%# door right #*%$%# now", as veins bulged out of my neck. Still, Ryan sat on the couch, shaking his head back and forth. No way, was his evil mother, who ruined his world, and that no good, smelly, loud, baby getting back in the house. Not until I called Dan, who had to come and let us in, not once, but twice (hormones, remember?). Yeah, it's pretty safe to say that Ryan did not "worship" his sister Emma the way he did big brother Kyle. She was a disruption...a change...a deal breaker. 

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Over the years, Emma has felt this preferential treatment for Kyle over her when it comes to Ryan's love and affection. Most days she accepts it, and other days, it breaks her sweet, sensitive heart. I once found a birthday card Emma had made for Ryan crumpled up and stuffed under her bed. Drawn on computer paper and carefully folded in half, was a 4 year old's exact replica of our backyard with a stick figure of a Emma and Ryan happily swinging together, which at the time, rarely ever happened. The crayon strokes spoke volumes of this little sister's true desire, to have her brother interact with her, to have her brother play with her, to have her brother look at her, the way he looked at Kyle.  When I asked Emma why she didn't give it to Ryan, her dejected little shoulders shrugged and she said, "Because he will think it's stupid.". I told Emma to give it to Ryan anyway. Ryan looked at the card, tossed it on his dresser and said, "It's not my birthday anymore" and went back to his game. As much as I wanted to smack Ryan on the head with the card, I tried to explain how much love and time Emma had put into making his card and that his actions hurt Emma's feelings. This past Valentine's Day when Emma made a card for everyone in our family, except Ryan, I didn't need to ask why and I didn't insist on her running up to her room and making him one. Ryan would have thought the card was stupid (again), unless of course Emma had taped candy to the card. Ryan loves his sister, he just doesn't communicate that love in a way that Emma understands...yet.

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Although I have explained autism to Emma and I have read books about autism specifically written for siblings of an autistic child, it's hard for a 7 year old's head and heart to grasp. AWEnestly, some days it's hard for a 44 year old mother to grasp. It's difficult for Emma to understand why Ryan doesn't hug and kiss her like Kyle does. It's hard to understand why cards and pictures made with love are rejected or ignored by him. It's hard to understand why she can connect with with every person she meets, but, not the one person she really wants to...her brother. Then along comes a guy named Steve with his blocks made of cobblestone, dirt, and clay as well as a pick axe and sword to keep the creepers and zombies out of their carefully constructed, mutually adored, virtual world and block by block, a connection has been made. 

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Who knew the phenomenon called Minecraft could not only build homes in virtual lands, but, Minecraft has helped build a relationship between a brother and sister that once seemed as unlikely as a creeper and zombie sitting down for afternoon tea. A bridge has been built that not only connects their virtual worlds, but, has also connected their hearts. Emma had to go to a deserted world and dig deep to find the proper materials to build a pick axe that was strong enough, and unique enough, to finally break through the wall of autism and find her brother. And Ryan, who for so many years, kept building his house with thicker, stronger bricks, finally let his little sister in and has promised her that he will continue to do so, as long as she doesn't chose a user name that is "stupid and ridiculous". 

Now I'm the creeper standing outside their real world, outside Ryan's bedroom door where they play Minecraft for hours, hoping that neither one of them senses me and comes at me with their diamond sword. As I slowly crack the door while creeping, I see Emma on the top bunk, the glow of the iPad illuminating her smiling, happy face. On the bottom bunk is Ryan, wrapped from head to toe in his Angry Birds blanket, the only sign that someone is under the blanket is the perfect British accent coming from Ryan's mimicking lips. As an unwanted, spawned creeper, I quietly and stealthily push the bedroom door open wider, risking my safety by breaking the darkness with the hallway light in my attempt to get even closer to this somewhat magical moment. As I hold my breath, trying to stay hidden, I finally hear, with no trace of Stampylonghead's British accent, Ryan yell, "Hey Emma, can you come into my world?". As I stifle my tears at the deeper meaning to those long awaited words, I swear Emma feels the dual meaning too. I can almost feel the joy emanating from Emma's heart as she happily yells back, while tap, tap, tapping her iPad, "I'm coming Ryan! I finally found you in your world!".

I recognize that when the Minecraft obsession ends, so may the intensity of the connection, but, for now, Ryan is not locking his little sister out on the back porch...he has finally...finally, let her in. I hope that whatever zombies and creepers lie ahead in the real world, Ryan will tackle them with a diamond sword in one hand, while holding onto his little sister with the other, because alone he can build a shelter, but, together they can build a fortress. A fortress that hopefully, will keep out their mean, old, creeper mother who makes them occasionally leave their virtual world for the real one.
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Building together to keep out creepers like their mother.
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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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