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Expect the Unexpected

8/7/2014

1 Comment

 
PicturePrincess Fiona, Shrek
Once upon a time, a very, very, very long time ago in what feels like a kingdom far, far, far away, a young 20 something year old princess lived in a castle, I mean, a single bedroom apartment, on her own. One night after returning home from a night of revelry, with other princesses, the princess approached her castle door to turn in for the night. Little did the princess know, that on that evening, her very own Prince Charming opted to replace his prince hat with a court jester hat. In Prince Charming's attempt to bring joy and laughter to the princess, he decided to hide in the bushes right at the doorway to the castle, I mean apartment, and scare his future queen.

Prince Charming jumped out of the bushes and nearly scared the princess to death. The princess found very little humor in such entertainment and she quickly went all ogre on his a**. The princess, who at the time was performing her less than royal duty as a juvenile probation officer, fortunately was not packing heat that evening, for if she had been, Prince Charming may have laid alongside Snow White in a glass bed deep in the forest.

Sorry, we've been watching a lot of Shrek this summer and AWEnestly, Ryan makes a much better Donkey than Eddie Murphy himself.

Yes, one summer a long, long time ago, Dan thought it would be funny to hide in the bushes, jump out at me and make my heart stop beating for a millisecond. Needless to say, this princess almost soiled her pants, which would have been very undignified behavior for a princess. As I approached my apartment, I certainly was not expected someone to be hiding in the bushes, no matter how many horror movies had prepared me for that exact scenario over the years. So, when the unexpected happened, I was not the least bit prepared for it and my bodily functions reacted as poorly as my future husband's role as court jester.

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Whether it's your creepy fiance (I did not kill him and yes he still enjoys scaring me) hiding in the bushes, or your boss showing up at your office door to tell you that the deadline for that report you have been stalling on has been moved from next week until tomorrow, being ill-prepared for the unexpected can make you feel, well...ill. 

Your pulse may quicken. You can feel your heart pounding in your chest...in your ears...and in your brain. Your mouth immediately goes dry and you feel like you may hurl your breakfast all over your new shoes. Then suddenly, your brain no longer works. You are momentarily frozen and at a total loss for words. Then finally, your fight or flight goes into overdrive and you either wind up running or swinging. When your body is so incredibly freaked out, it makes preparing for the unexpected very difficult.

Yes, the unexpected, can do a number on a person. Whether the unexpected is something wonderful or something dreadful, your body may still react the exact same way. An unexpected surprise birthday party, an unexpected marriage proposal, or an unexpected fortune bequeathed by a long, lost relative (does that really ever happen?) are all wonderful events, but, your brain just may not see it that way initially. If your brain didn't see it coming, your body reacts accordingly to such an unexpected event.

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For Ryan, and many kids with an ASD, the unexpected, be it good (a surprise visit from the Ice Cream Man) or bad (a thunderstorm knocks out the cable five minutes before the new Gumball episode is about to begin) is not expected, so their reaction may not be what you or the family sitting next to you at the restaurant where they just removed grilled cheese sandwiches from the menu, expected either.

This week, Ryan is attending a Vocal Camp at a local music center. I did a poor job preparing him for the unexpected. I showed Ryan the website online, but, we did not do a drive by for him to get a visual of the music center. Ryan has been looking forward to this camp all summer as he loves his new found "instrument", his voice, so, he eagerly got up early, got himself ready and out the door we went. Ryan happily scripted Shrek and Donkey on the way to camp and all seemed right with the world, until the unexpected happened.

As I parked on the street outside the music center, the scripting stopped and the worrying began. Ryan quickly surveyed the music center and in a not so happy, more ogre, less donkey like voice, he grumbled, "This can't be it. This is not what I expected." Turns out, in Ryan's mind, a music center for a vocal camp should be held in a school or a church, not in a turn of the century house...where there is an unexpected dog and an unexpected window air conditioning unit that blows his hair and freezes him to death.

You could physically see Ryan's body react. His latest sniffing tick became more rapid. His eyes darted around inspecting this unexpected location for perceived danger. I swear if that boy had his driver's license, we would have been back home where it was safe...where everything is as he expected. It took some persuading to get Ryan to accept the unexpected, but, he did and he is LOVING vocal camp....in a house, not in a church or a school with a dog who just lays around and does not jump on him unexpectedly.

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Some days, when Ryan is not expecting the unexpected, opportunities are missed. One day last week, Ryan's friend called and invited Ryan over to his house to play video games. I wasn't sure what to expect, at this unexpected invitation, but, I had a pretty good idea. "Hey Ryan, your friend wants you to go hang out at his house." "Great, when?", Ryan asked. "He wants you to go over now." In an utterly dumbfounded and amazed voice Ryan bellowed, "What?! Right now? Oh no, no, no, no, I can't go now, I wasn't expecting that. I will go tomorrow, when I am expecting it." Unfortunately, Ryan's friend wasn't expecting a play date for the next day, and already had plans, so, the play date didn't happen. A missed social opportunity because Ryan wasn't expecting the unexpected.

The unexpected is difficult for Ryan because processing too many things at once is hard for him. When he knows what to expect, he is better able to prepare his body for the sensory overload, he is better able to anticipate social interactions, and he is better able to develop a script in his mind about forthcoming conversations. Ryan's brain just needs a little more time to process the unexpected. A little more time, helps Ryan better prepare for the change coming at him, a change that may seem ever so subtle to you and me, but, to Ryan feels like an unexpected person hiding in the bushes that immediately transforms him from a sensitive, kind, little boy into a grumpy, "get out of my swamp" kind of ogre. 

Just like all of us, the unexpected can be quite an assault on our system, so, don't we all function better when we are prepared? When the system is taxed even harder by autism, it makes perfect sense that Ryan would rather avoid that assault altogether by playing it safe, regardless of missed opportunities.

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Ryan continues to work so hard to expect the unexpected in order to keep the ogre at bay, but, in his world that is filled with so many things hiding in the bushes, it is hard for him to throw down his pitchfork and let his guard down. As Ryan gets older and develops more scripts, more scenarios and more "what if's" in his constantly building repertoire, the unexpected will become expected and although the ogre may always hide deep in the recesses of his brain, Ryan will have the skills that will make him more "prince" and less "ogre".

I may not know how Ryan's fairy tale will end, but, one thing I can promise you is, that if a fair maiden ever catches Ryan's eye, chances are high that my little prince will never lie waiting in the bushes to scare the daylights out of her because Ryan will never see the humor in such unexpected entertainment. No, this unknown, 20 years in the future, fair maiden will never have to worry about expecting the unexpected with my little prince. Chances are, she will always know what is lying right around the bend and what, or who, will not be hiding in the bushes by the front door. 

Now, as for what this fair maiden can expect from her future mother and father-in-law, well, that's an entirely different, completely unexpected, yet relatively entertaining fairy tale. I just hope she doesn't pack heat.

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An unexpected trip to Rita's...with ample notice, of course.
1 Comment

The "i" in Team

6/5/2014

6 Comments

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

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

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

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

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

1 anxious boy=1 worried, fretting, nutsy mom

I always hated math.

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

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

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

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

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

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

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Where Ryan spent hours putting the "i" in team.
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Groundhog Day

5/21/2014

0 Comments

 
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You say tomato, I say tomahto, basically means, that not matter how you say the word tomato, it is still a tomato, but, what I want to know is, who actually ever says "tomahto"? I recognize that I certainly am not the most cultured or well traveled woman in the world, but, I have several friends who grew up in various countries, speaking various languages with various accents and I have never, ever heard any of them, or anyone at all for that matter, call a tomato a tomahto. I get the meaning, boy do I get the meaning, because most days as I'm getting Ryan out the door for school I think, "his routine, my routine", tomato, tomahto...no matter how you say it, it has the exact same meaning which basically translates to, never stray from the routine unless you want a rotten tomato, tomahto thrown at your head.

PictureGroundhog Day, Columbia Pictures
"His routine, my routine" is a little like Bill Murray's routine in the movie Groundhog Day. Bill Murray stars as Phil Connors, an arrogant, big wig meteorologist who is sent to check out good old Punxsutawney Phil for Groundhog Day, an assignment Phil believes is soooo... beneath him. In a weird twist of fate, or perhaps karma, Phil wakes up every single day at the exact time and repeats the same day....Groundhog Day, over and over and over again. This repetitive monotony for Phil Connors seems to be a sort of punishment, or purgatory if you will, for belittling the importance of the Groundhog Day routine as well as his dismissive attitude towards the repetitious, humdrum, doesn't quite get them, folks of Punxsutawney, PA.

Every morning, Phil wakes up at the exact same time, takes the exact same freezing cold shower, is greeted by the exact same woman, has the exact same cup of coffee and heads out the door to the exact same place, Gobbler's Knob, to give the exact same weather report over and over and over again. AWEnestly, Bill Murray's got nothing over on me....except maybe some hazy, drug induced memories of the 1970's. For a mom loving my AWEsome son, who craves routine like Punxsutawney Phil craves the privacy and media free seclusion of his groundhog hole and an additional six weeks of winter so he can go back to sleep, Ryan's routines and rituals have become my routines and rituals. Tomato, tomahto.

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My alarm goes off at 6:15 every morning, I hit the snooze (much to my light sleeper husband's dismay), then finally roll out of bed with the second alarm squeals and here is how Ryan's routine, my routine goes:

6:20-I wake Ryan up to groans of "I'm still tired."
6:28-In a hushed, but, yelling voice, I tell/yell for Ryan to hurry up or he will miss the bus (missing the bus is a fear much scarier than a groundhog's shadow).
6:30-Feed Ryan a sugar filled breakfast of Cinnamon Toast Crunch and Welch's Grape Juice (only the kind with high fructose corn syrup...I tried the others, he noticed, I got reprimanded) in the same glass and the same bowl, every single morning.
6:32-Pack Ryan's lunch...cheese sandwich (two pieces of Land O' Lakes Cheese, no substitutes acceptable, a light spread of Hellman's Mayonnaise, again, no substitutes allowed) cut into triangles (never, ever, ever rectangles), grapes (not too many, not too few...it's a gamble), Pringles (I have figured out how many by the feel of them in my fingers), Jello Vanilla Pudding (another food where a brand substitute would not be acceptable), a plastic spoon, and a juice bag, one of three choices are acceptable.
6:43-I'm called to "catch" his clothes which he tosses over the two story foyer railing for me to "heat up" in the dryer on high heat, not medium, not low for 3 minutes, not 4, not 5, and especially not 2 (trust me he can tell).
6:46-Deliver warmed up clothes to Ryan which I tuck inside my shirt to retain the heat so as to avoid another 30 second warm up if the clothes are deemed "freezing".
6:48-Untie Ryan's shoes (which are easily a size too small, but, he refuses to wear a new pair), set them at the bottom of the step with lunch bag and gym bag.
6:50-Ryan comes downstairs, backpack in hand, sits on the bottom step, not the second, not the third, puts his lunch box in his backpack, puts his left shoe on (never, ever the right one first, "it doesn't feel right"), I help him tie his shoes even though he can now finally do it himself, but, they just "stay better" when I do it.
6:51-Ryan puts his coat on (the exact same coat all year long regardless of season), if it's too warm, he still gets the coat, covers up with it, while I wrap a towel around his neck and use a wet brush (never, ever a dry brush, even though ironically, once upon a time it could never, ever be a wet brush), and brush his hear.
6:52-Depart for the bus stop, by jumping in the van to drive one block (bugs and inclement weather makes that one block feel like one mile).
6:53-Bus arrives, I am kissed and hugged twice, unless he is mad at me for not fully heating his clothes properly or running out of Cinnamon Toast Crunch, and off he goes.

His routine, my routine. Tomato, tomahto.
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When Ryan was little, his need for routine and sameness AWEnestly freaked me out. Back then, Denial was whispering in my ear, "It's not a strict adherence to rituals and routines like the DSM-IV described as a risk factor for "The A Word", Ryan is just stubborn and likes things HIS way." Clueless and Denial would then bully me and say, "Wrestle that new coat on Ryan and MAKE him wear it, you paid all that money for it, so he HAS to wear it." Of course I listened to my so called, "friends" and the end result would be both Ryan and I in tears while Denial and Clueless just "tsk, tsk, tsk'ed" me from across the room and the coat remained crumpled on the floor as useless and discarded as I felt. Denial and Clueless also use to grocery shop with us and one day, Denial said, "Just skip aisle 5 and go right from aisle 4 to aisle 6 because you don't need anything in aisle 5 and Ryan has to get over it." Listening to my not so well intended friends, I skipped aisle 5, much to the dismay of every shopper in aisles 3 through 7 who became officially hearing impaired by the time I returned to aisle 5. His routine, my routine. Tomato, tomahto.

Ryan's need for routine, his desire for Groundhog Day, helps him predict a very unpredictable world. When Ryan doesn't know what vague, unpredictable, fictional assignment he will receive in English class, knowing that right after English, he will find a cheese sandwich cut in triangles with just the right amount of grapes and Pringles in his lunch box, helps balance out Ryan's world. Walking out the door into a world that is confusing and filled with bees, thunderstorms and bullies, wearing one of five soft, cotton tshirts, and the same broken in too small shoes, makes taking on that scary world a little less frightening. 

We all have our routines and rituals. We all have our Groundhog Day days, yet, sometimes, even the most tedious of routines provides us with a sense of comfort. You could probably make it through your day without that must have morning cup of Joe, but, you might be an intolerable bear to all your co-workers who immediately start a central line of coffee for you desk side. For Ryan and kids and adults living with an ASD, that cup of Joe is a necessity to survive Groundhog Day, no matter how tedious and inconsequential it may seem to an outsider looking in.
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The term "Groundhog Day" has become known as a sort of negative connotation. The mundane, boring, predictable tasks of life. In fact, "Groundhog Day" has become military lingo for soldiers who have had multiple tours of duty in the same country, fighting the same war. Ryan may not be traveling roads decimated by years of war, with the threat of an aggressive attack around every corner, but, in Ryan's mind, putting his left shoe on first, eating the same lunch every single day, and wearing the same five shirts day in and day out, is as essential for his survival as a flak jacket in the middle of an unpredictable, unstable, war torn country.

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In the movie, Groundhog Day, Phil Connors had to relive Groundhog Day over and over again because he didn't "get it". To Phil, the meaningless routines and rituals of Groundhog Day were ludicrous and a complete waste of his precious, valuable time, so Phil's form of purgatory was to relive Groundhog Day over and over again until he did "get it". Until Phil recognized the importance of this day, of these rituals and routines to the folks of Punxsutawney PA, he would never be fully vested in his assignment. Once Phil got it, once he understood, he was able to see the significance, the joy, and the pride of Groundhog Day for people he once did not understand.

Denial and Clueless kept me from seeing the importance of routine for Ryan. His routine, my routine, tomato, tomahto, once felt like Groundhog Day to me. There are still moments where I think, "Can you please just eat/wear/do something different?", but, once I see the fear and anxiety cross his beautiful, trusting eyes, I realize that I'm no better than Phil Connors. This is my assignment, one that I have been fortunate enough to cover and report on. Now that I "get it", I do respect Ryan's need for routine, but, if I'm AWEnest, I still try to occasionally switch things up a bit, because sadly, there are a lot of Phil Connors in the world who will not get the importance of a cheese sandwich cut into triangles, so it's just as important that Ryan "gets" that too. 

So, no matter how you say it, his routine, my routine, I'm just so grateful that I'm the lucky one who gets to make the cheese sandwich, with two slices of Land O' Lakes White (never, ever orange) American Cheese, a thin layer of Hellman's Mayonnaise (never, ever the light mayo), cut into perfectly symmetrical triangles (never, ever a rectangle, a square, or some weird sandwich cutter shape) and always without fail, no matter what....always, always hold the tomato, tomahto.

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The only thing worse than six more weeks of winter, is an empty Pringles can on a school day.
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    Definition of Awe:
    "a mixed emotion of
    reverence, respect, dread and wonder inspired by authority, genius, great
    beauty, sublimity or might." Yep, someone should have consulted a mom 
    before
    spelling AWEtism.

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