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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.

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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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So Worth the Wait

8/15/2014

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We just returned from four days at the beach. The beach....it's great to say the word "beach", type the word "beach" and think of the word "beach" and smile a real, genuine, feel it in your heart, smile. The word "beach" always makes me smile, however, for a few years, my smile went on a brief vacation to Siberia whenever The B Word was mentioned.

My smile didn't head north because I don't love the beach, oh no, I am, and always have been, a beach girl at heart...as long as it's not raining and the water is above 76 degrees and shark free. I have always loved the sand, the sun, and the waves, and believe me, I've got the wrinkles and sun damage from my carefree, SPF free days to prove it. However, once you have kids, days at the beach change. Carting kids and kids' beach essentials make the carefree beach days, not quite so carefree anymore. 

As young, carefree 20 something, I use to laugh at all the crap parents toted to the beach when I happily stepped onto the sand with a chair and a towel. Then I became one of them, sort of, in a way...not really. When you add a dab of autism to the sunscreen, swim diapers, shovels, pails, boogie boards, beach chairs and endless please keep them from whining, bribe them with anything regardless of the sugar content snacks, the once cool ocean breezes can feel as fiery as the gates of Hell.

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When Ryan was little, The B Word, was almost as bad as The F Word. The sun, the sand, the wind, the sticky sunscreen and the shrill, ear piercing sound of the lifeguard's whistle was more than my sensory overloaded boy could take. You would think as a mother I would feel so badly watching my son meltdown as quickly as his overpriced Ice Cream Man popsicle, that I would have scooped him up and taken him back to the safety of his temperature regulated, sand free, ocean breeze free beach house, but, I didn't. Remember how I said I LOVED the beach? Well, come the fiery gates of hell or storm surge high water, this beach girl was determined to make my son love the beach too.

Year after year, as we endured tears and whining, bribes and threats, and after exhausting each and every possible distraction that would not make the sand feel so sandy, the sun feel so sunny, and the wind feel so windy, I would think, "Next year, he will learn to love the beach. Next year". 

Yes, each and every year, as the car was packed up and the beach gear was dragged up from the bowels of the basement, with the remnants of sand and dried tears (both Ryan's and mine) covering the shovels, the pails and the boogie boards, I would silently pray, "Let this year be the year my little man finally gets what all this "down the shore" fuss is about. Amen.".

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For many years, my prayers went unanswered as I sat on my beach chair holding my sand covered boy in my lap as he burrowed his head into my chest and grinded sand into my second and third layer of skin in his attempt to protect himself from all things beachy. 

As I futilely attempted to remove each and every grain of sand from Ryan's stressed out body, I would see those "other mothers" and I can AWEnestly say, I kind of, sort of, really hated them. Those "other mothers" who sat in their beach chairs happily watching their children frolic in the surf and bury their siblings neck deep in the sand. 

Those "other mothers", whom I believed took for granted the perfect beach day. The mothers who stood along the shore, camcorder in hand proudly capturing such beautiful moments so that in their golden years they could reminisce these perfect child rearing memories in the years to come. As I stood by, tears streaking my sand covered face, silently and selfishly hoping a giant sand sinkhole would swallow those "other mothers" and their perfectly recorded memories up. Yep, I hated them.

Ryan oblivious to my tears, because he was literally blinded by his own sunscreen infused tears, would rub his eyes, which of course only made his wails of "burn, burn, burn" grow louder, didn't even know anyone else existed on the beach, let alone his feeling sorry for herself, trying to suck it up, mother. Ryan was too busy trying desperately to survive the onslaught of sensory stimuli, while I shot daggers at mothers I didn't even know and Ryan's big brother Kyle jumped in the waves....alone, hoping one day his little brother would join him. 

Little did I know, that my time, as a mom happily enjoying the beach with all her children, and Kyle's time (having a brother body surf the waves) was coming, we just had to be patient and wait. I hate waiting.

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Being the beach lover that I am, as much as I wanted Ryan to frolic in the ocean like a dolphin and scurry across the sand like a crab, in terms of sea life, my son was more like an oyster than a dolphin or crab. 

Like an oyster, Ryan had a hard to penetrate shell that he used to protect himself from things unfamiliar trying to enter his safe, closed off haven. Over the years, Ryan has slowly allowed unfamiliar and foreign stimuli that are horribly irritating to him, inside his protective shell. And just like an oyster's natural reaction to a foreign substance entering it's shell, is to cover up the irritant to protect itself, Ryan too tried to protect himself by closing up to all things beachy. 

However, just like a pearl takes years and years to develop inside the shell of an oyster, over time, that once irritant that broke through Ryan's shell, has no longer become something to fear, but, something to behold. In an attempt to protect himself from outside stimuli, Ryan was creating something beautiful within the walls of his shell, something that I couldn't see from the outside. The beauty that lied within the shell needed time to grow and develop so that it could turn into something so exquisite and so rare, that was absolutely worth the wait. 

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Finally this year, my oyster revealed the beautiful pearl that had been forming within. Yes, he whined about how long we were on the beach, and yes, the water wasn't his desired temperature, and yes there were too many "annoying people" around, but, this year, I sat on my beach chair like all the "other mothers" and smiled as I watched all my kids enjoying the beach. Unlike those "other mothers" though, I recognized the rareness of the moment and although we captured it with digital media, those moments are forever ingrained in my heart. Moments that were definitely worth the wait. 

Turns out, I wasn't the only mom harvesting oysters on this particular beach trip. Right down the beach was a group of mothers, who, chances are, at one time or another, hated all those happy smiling "other mothers" with their beach loving neurotypical kids like I did.  It just so happened that the same week we were at the beach, so was Surfers Healing http://www.surfershealing.org/, an organization that provides surfing opportunities for kids and adults living with autism. 

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I watched as these kids who fight so hard to keep anything from seeping in between the cracks of their shell, open up just enough to experience something AWEsome. Many kids went into the waves closed up tightly and protecting themselves because they were afraid and unsure, but, they all came out shining beautifully to the applause and cheers of an entire beach. Yes, that day, I watched the shoreline shimmer with beautiful pearls who found pride and joy in the ocean waves while standing up on a surf board. While their parents looked on at the precious and rare gem that outshone any other.

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Ryan may never love the beach like his mother, which will probably decrease the signs of aging and his risk for skin cancer, but, for this beach girl, there was just something different about this beach trip. There was a peacefulness about what is and not so much concern for what could be. Maybe when I finally stopped worrying so much about my little boy's protective shell, I could finally see the pearl that had been forming and growing inside all those years. I just had to sit back and wait. 

And just like a string of cultured pearls that takes a single grain of sand an entire decade to form, only time enables the exquisiteness of such beauty to shine forth and be appreciated in the precise color, shape and size it was destined to be.

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So worth the wait.
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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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Exit Stage Right

7/17/2014

4 Comments

 
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 "i" in Team

6/5/2014

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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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#TBT

5/29/2014

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I try to be a "cool" mom, you know, a loving mom who does just the right amount of nagging that makes you a responsible parent, but, not over the top nagging that makes your kids think you are lame. I try to be the kind of mom that makes our house the hang out for all my kids' friends because, "Kyle's mom is so chill" (and because I have a sweet tooth like a child and my pantry is living proof of this fact). The kind of mom that my mom was when I was growing up (and of course still is today), with the added bonus of trying to be cool on social media. I am told by my teenage son that in the world of social media where I have mistakenly and humiliatingly crossed into his web universe, that I fail miserably in the Cool Mom Department. And if there is anyone who is going to tweet that you are without a doubt the most embarrassing mother in the world of social media, it's going to be your 16 year old, know it all, teenage son. #epicfail

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I have been told, by my horribly embarrassed teenage son, that we "old heads" have ruined Facebook for the youngins (no one who is anyone over the age of 14 has an "active" Facebook account) and now, even worse, we over the hill, inept, social media blunderers are hashtagging on Facebook. #OMG 

For those who may be even lamer than me, a hashtag (#) originally began on Twitter then went to Instagram and it is a way to sort or categorize your tweets and pics so that other people who search under that hashtag can find similar tweets, pics and comments. For example, #embarassingmoms could be a hashtag on my son's Twitter account that would follow a comment something like this, "Mom's #'ing on FB again WTH?" and then his followers may share a similar horrific mother story with the same #embarassingmoms. 

Until recently, us old heads using a hashtag on Facebook was just for fun (or embarrassment) because there was no direct link from one hashtag to the next. Facebook changed that, but, according to teenagers, it's still not an acceptable hashtag outlet. In fact, when you put "hashtagging on Facebook" in your search engine, the second search title that comes up is "hashtagging on Facebook is stupid", which I'm sure was written by a horribly mortified teenager. #ohwell

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According to my social media extraordinaire son, one of the biggest hashtag Facebook blunders, is #TBT. For you lame-o's, #TBT stands for Throwback Thursday, a day when people post pics of days gone by on Instagram not on Facebook, yet, every Thursday morning, I wake up to my Friends on Facebook sporting big puffy sleeves and even bigger puffier hair. Most of these photos are pictures with large groups of friends from the high school or college era. I AWEnestly love seeing these photos because they do indeed throw me back to a different time, a time when I was young, carefree, responsibility free and worry free (with the exception of my obsessive fretting over Aqua Net Super Strong Hold Hair Spray's ability to keep my hair puffy until 2AM). Ahhh....yes, the good old days. There are, however, some friends and some times, you don't want to throw back to, no matter how good the photo may look and how many Likes, Comments or Retweets you get.

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Ironically, it was last Thursday, that I had a #TBT moment, and it wasn't pretty. I agreed to help out with Ryan's end of the year Honors Party in Middle School. Yeah, I know, the fact that my son made the honor roll for the first three marking periods and was not only invited to attend, but, WANTED to attend, should have made it a phenomenal Thursday, throwback or not, but, old #TBT habits die hard. If someone would have snapped a photo of me last Thursday, waiting for the kids to be dismissed to the party, they would have seen the same woman (albeit a bit older) as the woman in this photo, smiling, happy, on the outside, but, a worried, hot mess on the inside. Yes, last Thursday, as I waited to collect the Honors Party Invitations for the invited attendees, I was thrown back with my old friends Denial and Clueless flanked on either side of me, but, my newer, much more fun to be around friend, Hope, was giving them both a nonchalant elbow shot as I waited and watched for Ryan to appear.

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My throwback was more of a scary, "must have done some brain damage from spraying all the Aqua Net, oh please don't make me relive it again", flashback. As I waited for my 95 pound, almost teenage son to appear, in my throwback mind, I kept seeing an angry, scared, overwhelmed, lost 4 year old boy camouflaged among the wood chips, playing alone under the sliding board at daycare. My palms became sweaty, I felt my heart rate pulsating to the sound of Pharrell Williams annoying Happy song being played by the DJ and all I could think was, if Pharell Williams entered this room right now, I would stuff an Honors Invitation in his big hat then shove it down his Happy throat. I was anything, but, Happy, I was more like Neurotically Nauseous (maybe I should write a song). I quickly forgot about my new friend Hope and was immediately back in my old inner circle with Denial and Clueless, praying, bartering, and willing my son, not to walk into that commons area alone. All the years I spent accepting that Ryan is happy being just who he is, disappeared as quickly as a trending hashtag. #oldnews

As I continued to watch and wait, unaware of the fact that I was literally holding my breath, I found myself whispering to Hope, "Maybe Ryan will round the corner and come through the doors with a friend", while acknowledging to both Denial and Clueless, "Ryan will not only probably be alone, he will probably be the last one to show up". As I stood there transfixed between the present and #TBT, I watched the non-stop streams of kids flowing through the hallways like salmon fighting to get upstream, literally pushing and plowing their way through the masses. I watched as the cool kids in their high black socks and trendy clothes moved together in packs like a group of hungry wolves, just waiting to take a bite out of the vulnerable kids who walked alone wearing high white socks and the same five shirts all school year long. I watched, I trembled, and I waited. "He will be last and he will be alone and that's ok" was ongoing, repetitive, mumbling mantra.
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Then just when my new friend Hope was ready to go hang out with some of the more optimistic, cool moms, my boy rounded the corner, in the middle of the pack, with no bite marks, wearing his high white socks, smiling, laughing and walking with, dare I say it....a friend. Ryan and his friend approached me with their Honors Party Invitation, and I got that very happy, yet trying not to smile grin from my boy and a nice, "Hello Ryan's mom!" from Ryan's friend. Ryan wasn't 4 years old anymore. He wasn't angry, he wasn't scared, he wasn't overwhelmed, he wasn't lost, and just like that annoyingly joyful Pharrell Williams predicted, Ryan was Happy and therefore, so was I. Would I have been less happy if Ryan rounded that corner alone, but, still smiling and happy while Hope quickly left my side for some other cooler mom, AWEnestly, yes, I would have, because no matter how hard I try not to project my version of happy onto Ryan, sometimes, I still do. #pharrellandme

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Any of my #TBT photos that I would post onto Facebook, horrifying my social media savvy son, would show me surrounded by a group of friends, no matter how far back I would throw the photo. I always found myself in a group, mostly because I loved hanging out with my friends, but, also because being part of a group was how I identified myself. I was a salmon. Being in the middle of gang of friends for me, was, and sometimes still is, easier than being alone. Ryan is quietly confident in who he is and yes, autism makes having friends difficult, so sometimes being alone is preferred, because for Ryan, being alone beats swimming up stream with a bunch of pushy, obnoxious, teenage salmon. For Ryan, traveling his journey in a pack of wolves or a school of fish is not his thing, for Ryan, sometimes, having just one friend to happily script away with, is all he needs. #1isallyouneed

As hard as I try to be a "cool mom", I'm pretty sure Ryan's poor friend probably did not think there was anything cool about me as I followed them around smiling like some weirdo, taking photos, but, not posting them (well, not all of them) on Instagram with a cool hashtag like #bitemeautism or #dumpeddenial or #justbeyou. As I stalked, I mean, watched, Ryan and his friend walk around, scripting the latest Gumball episode together, I stood alone with no friends....not Hope...not Denial....and not Clueless, yet, I did not, for one second, feel the least bit lonely. Students, teachers and parents milled around me, but, I didn't try to hide my falling tears. I embraced my joy as my heart filled with pride while I watched in AWE the #TBT moment transport Ryan and me to the present. 

Some days I'm cool, some days, I'm not, but, one thing we lame "old heads" have over these youngins is the wisdom that comes with age. We recognize that there are moments that don't need a #, a tweet, a post, or a comment.  Such wisdom may not make us cool, hip, trendy or keep us from humiliating our children, but, our old head knowledge enables us to see that there are some moments that really are better experienced alone, because no one who "follows" you, "friends" you, or "tweets" you, can fully comprehend the significance of a moment, of that moment, except, YOU. #mymoment

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Ryan just chilling with his friends (one is hidden to protect his privacy).
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Beauty is in the Eye of the BEEholder

5/1/2014

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After what can only be described as the coldest, iciest, most hideous winter of all time (which by the way, is how I describe every winter), last weekend, we finally had 48 hours filled with warmish temperatures AND sunshine. I feared it was a sign that the end of the world was coming, since warm and sunshine in PA rarely occur on the same day, so in between my soaking up a little Vitamin D (with SPF 50 of course) and swinging with my daughter on the playground, I kept my eye out for a plague of locusts. Fortunately, no locusts unearthed themselves after such a cold winter, but, what did pop up out of the ground with the return of warmth and sunshine, were beautiful flowers. Yes, the flowers were blooming everywhere which meant the bees were a buzzing. Even though I did plenty of research, and discovered that swarms of bees do not appear anywhere on Google as a sign of the apocalypse, there was still no convincing Ryan of this pertinent information as he remained inside the house building his arc.... and waiting.

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To say that Ryan is a little afraid of bees, would be like saying The Book of Revelation being read to school age children, long before a child is ready to hear such horrific doomsday predictions, may cause a child to need a little bit of therapy. We all have things we are afraid of...bees, snakes, clowns, a clown holding a snake...which  would be my own version of Hell. AWEnestly, if there is a Purgatory and I'm stuck there, chances are I will be stuck next to a snake handling clown. Curse my college years sins. Some things we fear are utterly ridiculous...I mean besides the creepy murdering clown from Stephen King's It movie, most clowns may be a little disturbing, but they should not keep me from going to the circus, but they do. When you think about Stephen King's somewhat demented imagination that enables him to come up with such creepy, freaky books, that include a possessed car, a demonic clown, a pig blood soaked prom queen, and un-dead pets, Stephen King is who should haunt my nightmares, not some sad, hiding behind his makeup, creepy faced clown!

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I'm old enough now to recognize some of my fears as being irrational, but that still doesn't make me any less afraid. Once, a small garter snake was coming at me, slithering at an extraordinarily high rate of speed, fangs showing, looking for blood (at least that's how I remember it) and although I would throw myself in front of a train for my daughter, clearly I will not throw myself in front of what I feared was a deadly, poisonous, garter snake. In fact, I will run in the opposite direction and leave my two year old daughter in my dust without a second glance backward until I'm safely in the house while my innocent toddler stands transfixed in the yard wondering how Mommy could possibly run so fast. Wrong? Yes. Sorry? Yes. Would I do it all again? Yes...unless of course there was the slightest possibility that a clown was lying in wait for me inside the house.

Ryan's fear of springtime flowers, which draw deadly, stinging bees, is no less extreme than my snake/clown phobia. No matter how many times I have explained the beauty of flowers and the sweet nectar that draws the bees in, Ryan does not see the beauty of a daffodil or an azalea bush, he sees pollen sucking deadly bees, horrifically swollen bee stings and sticky antiseptic followed by the suggestion of (shudder) a band aid. Just like Ryan's fear of bees blocks his ability to see the beauty in flowers, and my fear of clowns blocks my ability to see the beauty in a child's smile at the circus, people's fear of "different" may block their ability to see the beauty in a child who does not look or act the same as others. Beauty really is in the eye of the beholder. The phrase, "beauty is in the eye of the beholder" means that each person sees beauty in a different fashion. In other words, different people have different ideas about what is beautiful.
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For years my friends Denial and Clueless tried to make me miss out on Ryan's beauty. They tried to convince me that wearing the cool clothes, having the cool haircut, wearing the cool sneakers and acting like every other kid on the playground is what would make Ryan beautiful. The sometimes odd facial grimaces, the weird noises, and the repeated scripting, Denial said, was not beautiful, and others would not find beauty in such obvious differences either. So, just like the creepy clowns at the circus, who hide who they really are behind makeup and clothes, I tried to camouflage my boy and his differences, by making him someone he was not, because unlike the circus clowns, I did not want people pointing and laughing at my son.

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Denial made me feel like I was doing the right thing when people would see Ryan, dressed in the "clown suit" clothes that were really not him, and say, "Look how beautiful he is!". Denial also assured me that making Ryan participate in all the same activities the other kids did, like baseball and soccer, would make Ryan look less "different", regardless of the fact that Ryan looked like a charging bull running down the baseline due to the awful feeling of the batting helmet. Denial's assurance that everyone would see past Ryan's difference and see his beauty if I tried to make him look and act more like everyone else, blinded me to how difficult being "beautiful" had become for Ryan. 

In fact, Denial had me so convinced, that I saw right past the stretched out shirt collars, the constant tugging at the hard, stiff denim jeans and the non-stop pulling of the low cut socks that would never reach his knees no matter how hard Ryan pulled. The irony was, Ryan was more beautiful in his unstylish fleece pants, his collar-less 100% cotton tshirts and his high white socks, happily scripting away while playing his latest video game because he was no longer wearing the clown makeup, hiding who he really was underneath, just so others would see their version of beautiful. It's a shame it took this beholder so long to finally see Ryan's beauty.

Now that I can see Ryan's beauty, I am dumbfounded that others can't.

I see the beauty in a smart, funny, little boy transforming into a handsome young man.

I see the beauty in a boy's ability to memorize and mimic everything from the microwave beep to Jim Carey's version of The Grinch.

I see the beauty in Ryan's unique and often hilarious way of interpreting our strange and crazy world.

I see the beauty in a boy whose confidence in his musical ability makes him stand apart from his athletic brother and sister.

I see the beauty in a boy who may struggle socially, but, has found happiness in the absence of being a part of "the crowd".

I see the beauty in a boy who has given me the gift of seeing the world through a very different lens and his willingness to share that world with me, even when I didn't deserve it.

I see the beauty in a boy who has loved his mother through her own phobias, fears, and poor choice of "friends", while still forgiving that mother for the times she was once blind to his unique beauty.

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Even though I finally mustered up the courage to tell Denial she was wrong about the beauty of "different", she still comes around every now and then and suggests that Ryan wear the high black socks that are "in" versus the high white socks that he prefers. Most days, I slam the door in her face, but, I have my weak moments. Unfortunately, I still come across people who have many weak moments and who are still blind to the beauty of "different". I don't get angry with this people, because after all, beauty is in the eye of the beholder, but, I do feel sad for them. To miss such beauty because what they see is so different from what I see, is not something to judge, it's not something to be angry about, it's just something that these blind beholders will miss out on, just like I miss out on the circus....every....single....year.

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How we see and what we see as beautiful varies from person to person. To Barnum and Bailey, a clown is not something to be feared, but, a clown is a thing of beauty because for most people (those without strange clown phobias), clowns equal laughter and laughter equals "ca-ching". To a beekeeper, springtime flowers are not something that is equated to deadly bee stings, but, the beauty of these flowers equals busy, honey producing bees. To a mother, a boy, who has finally grown comfortable in his own skin by being just who he is, regardless if others find him beautiful or not, is hands down the most beautiful sight a mother could every lay eyes on. For Ryan, beauty is in the eye of the BEEholder and chances are, he may never see the beauty in flowers or bees, just like I will never, ever, ever for the rest of my life and not even in Purgatory, find anything remotely beautiful about a clown, but, the two of us together will continue to help others see the beauty of "different", just not at a flower show or at a circus.

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BEAUTIFUL!
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The Idiocy of Idioms

4/17/2014

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One of my BFF's is Indian. She is gorgeous, fun, YOUNG and has more energy than anyone I have ever known. Come to think of it, why am I friends with her anyway? She grew up a military brat, but, spent most of her childhood in India speaking both Hindi and English...English with a British flair (Great Britain ruled India for decades, a little fact this dumb American never knew until she became besties with someone who actually lived outside of PA). Then my girlfriend met this AWEsome Indian doctor and found herself in the middle of Garrison, North Dakota for a few years only then to later wind up in South Central PA. It didn't take poor, lost "Dorothy" to realize she wasn't "in Delhi anymore". 

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The trade off for following a handsome, loving doctor to the middle of nowhere, left my poor Dorothy friend shoe shopping online, learning a new culture and learning all the weirdness that comes with adapting to the English language. The English language that was not taught in a classroom, or in her native India with a great deal of British influence, but, in the good old USA. Sure my girlfriend spoke English, she understood English and she could read English, but, until you are thrown into the English language with no rule books on the metaphors, idioms, inconsistent phonetics, and the slang haphazardly tossed about, my bestie "Dorothy" probably wanted to click her ruby slippers and bust out of Oz (most certainly out of cold, snowy North Dakota winters) and head back to Delhi, taking her fabulous husband in her basket with her.

For someone like me, who grew up speaking English and only English, I take for granted the ease of the English language, but, for some people, English isn't that easy. A study was conducted by a language processing company called Idibon to try and determine not which languages are "hard" to learn (Arabic is in the top five), but, which languages are "weird". The Idibon study looked into which languages used the greatest number of unusual features that are not used in many other languages. I am proud (?) to report that English ranked number 33 out of 239 languages in the "weirdness index". I can't decide if that is a good number or bad? I guess the fact that our language made the "weirdness list" should ease the minds of the non-native speakers. Now when they make grammatical, phonetical and pronunciation faux pas, they can acknowledge that they are not in fact weird, but, it is the English language who is to blame.

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I've often wondered if Ryan's struggle with pragmatic speech (language used to communicate and socialize) makes him feel like he has entered a foreign country, where he is familiar with the language....he speaks it, reads it, interprets it, and for the most part, understands it, until the English language 'weirdness factor" comes into play. My boy, and many kids with an ASD, are so literal that figurative language, metaphors, slang, cliches, etc., get lost on them, which ironically makes them feel weird, even though we now have legitimate proof that it is the English language that is weird. And as far as Ryan is concerned, there is nothing weirder about our language than the use of idioms. So, if you ask Ryan a question and he doesn't respond right away, do not ask him, "if the cat's got his tongue" because I assure you, not only will he think you are "as dumb as a rock", but, you will most certainly be shown his tongue in an attempt to prove to you that the cat in fact did not take his tongue. You will then be told, in a voice full of shock and disdain that you could AWEnestly be so stupid, that since a cat has no hands, taking a human's tongue is next to impossible

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The English language can be very difficult, "weird" and illogical not only for those who did not grow up speaking the language, but, for many kids with an Autism Spectrum Disorder who interpret all the words they hear in a very literal, very concrete, way. It's funny, because more often than not, I believe that the way Ryan sees and hears the world makes much more sense than the way I do. For instance, on what planet does it make sense that a heavy downpour should be equated to "raining cats and dogs"? Why not horses and cows? After all, if you are trying to talk about the large amount of WATER falling from the sky, aren't horses and cows bigger? Wouldn't that have a more dramatic effect and isn't that what we are trying to do? It makes perfect, logical sense to say, "it's raining heavily today" or "there is a lot of water coming from the clouds today" or more precisely, "I guess the water droplets in the clouds grew too heavy today and gravity forced raindrops to fall from the sky" since that is EXACTLY what is happening. Thank goodness there are no dogs and cats or horses and cows falling from the sky, what in the world would an umbrella cost in order to protect oneself from falling felines or bovines?

Just like my bestie from India, has slowly learned the various cliches, idioms, metaphors and slang abundant in our weird English language, she still sometimes gets confused and AWEnestly, it is so funny to hear her strong Indian accent saying something so weirdly English (Come on, she's gorgeous, fun, and young, she has to have something I can abuse her about). Just like a non-native English speaker, Ryan can learn and memorize idioms, metaphors and slang, but, having such "weirdness" become part of his English repertoire probably will not happen. Memorizing such English "weirdness" and sort of understanding idioms and metaphors, doesn't necessarily mean they make logical sense to Ryan, and my boy is all about being logical. Being logical, being literal, helps Ryan makes sense of a confusing world. As his mother, who knows him better than anyone, you would think by now I would understand this, but, sometimes I take for granted that some of my weird English phrases make absolutely no sense to him.
 
A perfect example happened on one of the 72 snow days we had this winter (it sure felt like 72 snow days). It was one of those days where it was icy and the roads were hazardous just in time for the morning commute and the weather men predicted a worse scenario than what actually occurred. By noon, the snow and ice had melted and the sun was shining. As Ryan and I headed out to the grocery store he said, "I can't believe we didn't have school today." "Tell me about it.", I replied. Without missing a beat Ryan said, "I just did tell you about it. Didn't you hear me? Maybe you are going deaf." Yes, literally, Ryan did just "tell me about it", but, figuratively, he wasn't going to "tell me about it" again. I smiled the entire way to the grocery store, but, still wondered how much weird English language Ryan misses in social conversations. It makes perfect sense that Ryan chooses to stay quiet, to avoid social settings when the words he is trying to understand are so freaking weird.
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Ryan and his speech therapist worked on idioms once upon a time and during that time, I bought Ryan this Dictionary of Idioms book thinking Ryan could memorize them and not feel weird about our weird language. Thinking that if Ryan just read the book, memorized some of the more common idioms, he might not feel like his peers are speaking a foreign language. Ryan never cracked the cover because AWEnestly, he could care less about idioms. Idioms don't make sense, to a literal thinker. Idioms are illogical and so why would Ryan waste "a penny for his thoughts" on something so ridiculous. Ryan has learned to recognize some idioms, but, chances are, no matter how much I am rushing him in the morning, screaming for him to put his shoes on and brush his teeth, Ryan will never tell me to "hold my horses" because clearly I don't have any horses and even if I did, a horse would be much too big for me to "hold".

As Ryan's mom, I try to speak in a way Ryan understands, but, since idioms, metaphors, and slang have been a part of my repertoire for so long, it's "hard to teach an old dog new tricks". So on particularly tough days, days when autism has a stronger hold on my boy's brain and days when my 40 something hormones have a stronger hold on my brain, and I'm trying to get through to Ryan by telling him he's "making a mountain out of a mole hill" and that by yelling at me is only "adding fuel to the fire" and that if he keeps "getting under my skin", I'm going to "hit the roof" and he most assuredly is going to "be in the doghouse", would do nothing to resolve the situation. In fact, Ryan would look at me like I was speaking Hindi or some other language he does not understand. My dear old friend, Clueless would be sitting on the side of Ryan's bed "in stitches" at my stupidity. 
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If Ryan cared enough to interpret my idiotic idioms, he would assure me that he cannot make a mountain out of a molehill because he does not have heavy equipment machines at his disposal and even if he did, he is not allowed to operate them. Ryan would also point out to me that the gas cans are in the garage and that on the side of the gas cans it reads, "Danger Extremely flammable" so even if there were a fire in his bedroom, Ryan would never add fuel to the fire, instead he would flee the house and dial 911 as he has been instructed to do. Ryan would logically point out that he is entirely too big to "get under my skin" and that getting under anyone's skin would require cutting their skin and making them bleed and since Ryan is not a fan of blood, he would choose to stay outside of my skin rather than under it. After discussing the dangers of climbing on top of the roof in order to "hit the roof" Ryan would then remind me that dog houses are for dogs, not people, and that our dog doesn't even have a doghouse so obviously there is no way Ryan could be "in the doghouse". See, now who makes more sense, Ryan or me? 

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Concrete, literal thinkers have no time or room in their black and white brain for idioms and AWEnestly, who can blame them? When you stop and think about them literally, they make no more sense than someone speaking a foreign language you have never heard before. Clearly, the guy at Game Stop will not take my arm and my leg instead of cold hard cash for the latest Mario game even though I have assured Ryan, that the game "costs an arm and a leg". And although you may have reached your limit with all the crap that happened in one day, and you can't take one more bad thing happening, a piece of straw will not break a camel's back. Camel's are very strong animals, as are their backs, which is evidenced by people riding on camel's backs across the Sahara Desert. And even though you spend hundreds of dollars on your new dress, shoes, and accessories in order to look hawt at your upcoming class reunion for that old flame of yours, no matter how much your shoes cost or how many lines that Botox erased, that old boyfriend will not "eat his heart out", unless of course your high school boyfriend's name was Hannibal Lecter.

My bestie from India has been in this country for 12 years, ironically, Ryan has been in this world and this country (only) for 12 years too. My girlfriend and Ryan couldn't be more different socially. Her social circle and friends on Facebook are in the hundreds, Ryan's circle is in the single digits with no Facebook account, however, when it comes to understanding and interpreting the weirdness of the English language, they have both had their misunderstandings, confusions and funny moments. The English language may not be hard to learn, but, it can be weird in it's interpretations with all it's metaphors, slang, and idioms. Misunderstandings, misinterpretations and getting the wrong idea happens frequently which we now understand doesn't make the speaker "weird", just the language.
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Just like Ryan may look at you creepily if you tell him your going to "lose your shirt" at the casino, you may look at my Indian British influenced girlfriend creepily if after a day of shopping with her, she asks you to pop your "dickie". Regardless of how much money you may lose at the casino, you will not walk out of the casino shirtless and my friend who wants you to pop your "dickie" (which may sound horribly forward, after only one shopping date), does not want you to pull your pants down, all she wants you to do is open the "trunk" of your car where her shopping treasures are located. The weirdness of language can lead to weird, but, funny moments, that leave you feeling like "a fish out of water" or make you want to "bite your tongue".

When I hear my friend speaking Hindi, which is "all Greek to me", I recognize that getting Ryan to speak in idioms or metaphors is like asking him to speak a foreign language and that I'm "barking up the wrong tree", so I have stopped "beating a dead horse" and put the Dictionary of Idioms away. Ryan may not memorize idioms, metaphors and slang, in order to enhance his pragmatic speech, but, as with so many things in the world of autism, I have learned, that there is "more than one way to skin a cat" so, even though Ryan may be a "tough nut to crack", I keep in mind that "Rome was not built in a day" and when it comes to helping my son succeed, I will never, ever "throw in the towel". 

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Sometimes his "bark is worse than his bite", especially when he is as "mad as a wet hen", but, "make no bones about it", my boy loves like no other.
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I Wish I Were.....Big.

4/9/2014

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Milestone birthdays. Some we can't wait for, counting down the days on a calendar until the big day finally arrives, and some we hide from, lie about, and completely ignore. Remember in college, hating all your friends who had fall birthdays and went right from their Poly Sci class to happy hour while you went back to your apartment and watched Seinfeld instead? Wondering why your parents clearly preferred "alone time" in August than in January. And to add just a little salt from your under age drinking tequila shot to your, "I wish I would have born in October" wound, turning 21 in May, a week after summer breaks starts, is one of the greatest injustices of the college world. I specifically remember the May that I turned 21. After I gave my parents a stern lecture on giving birth to, not one, but, three girls in the month of May and how their insensitivity gravely impacted their daughters' 21st birthday celebrations, I recall wondering, what was left? I mean, isn't 21 the pinnacle of milestone birthdays?

Those happily celebrated milestone birthdays belong to someone else now, since I have decided not to have any more birthdays (I will still accept a cake or Zappos gift card on May 19th, but, just because you love me, nothing else). A very, very, very long time ago, I couldn't wait to turn 13 and officially become a teenager. Then at 16 I could finally drive a car, no more mom taxi needed. At, 18, "woohoo I'm finally an adult" and I can vote (AWEnestly, voting wasn't nearly as exciting as getting into R rated movies). Then the pinnacle of all milestone birthdays...21, I'm officially legal. Not that I would have ever dreamed of driving a car, sneaking into an R rated movie, or drinking a beer before those milestone birthdays allowed me to do so....ohhhh noooo, not me. All those milestones, all those celebrations, all those moments to look forward to, then 21 hit, and I went, "ok, now what?".

Whether it was 13, 16, 18, or 21, once you got "bigger" you realized in many ways, being "little" wasn't so bad after all. Getting bigger means being more responsible and hearing your parents nag you about, "Well, now that you are bigger, we expect you to act your age, be responsible, hold yourself accountable, blah, blah, blah." Ultimately, the bigger your get, the more that is expected from you. What a drag. If you only knew how good you had it when your were little. 
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For example, turning 16, and being able to drive gives a teenager a sense of freedom they never had before, but, the downside to that freedom comes the lectures and the nagging from good ole' mom and dad. Seat belt safety, drinking and driving (even though of course at 16 they would never touch a drop of alcohol), texting while driving (not a problem in my day) lectures occur daily and each lecture is followed with the grave warning that failing to heed any of these naggings could catastrophically end your life or someone else's life. Jeez, 15 sure was a lot less lecturery (new word for teenagers only) and a lot less "I could die at any moment behind the wheel" scary. Then there is the magical milestone of turning 18 which makes you "bigger", and an official adult, but, with adulthood comes the realization that one major screw up means goodbye "juvy", hello Big House. And although turning 21 brings a whole new meaning to the word bigger...bigger parties, bigger clubs, bigger dating pool, 21 also means that the fun and partying college days are quickly coming to a close and the "real world" is slowly looming over the horizon. Mom and dad might still lecture and nag, but, now you own the laundry, the bills and the cooking. Big ain't all it's cracked up to be.

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I don't know when the change comes, when we realize life was easier when we weren't so big. Was it after our first hideous hangover from one too many tequila shots? Was it our first real job when it finally dawned on us that there were no more summer's "off"? Was it after life's first big disappointment...a job that didn't happen....a relationship that didn't happen....a dream that didn't happen? Regardless of when or why, at some point in time, we have all thought, "Wow, if I could just go back in time so I could slap my younger self, and realize how good I had it...before I got big." Although I wouldn't want to go back permanently, (especially not to middle school), I would love a quick trip every now and then, to be able to fully appreciate the comfort, the security and the ease of being little. I mean, if Tom Hanks got to do it, why shouldn't I? 

PictureDavid Moscow in Big, 20th Century Fox
The movie that turned Tom Hanks into an official movie star, also turned him from a child to a man in the movie Big. Just like the real world (dripping sarcasm), when being big got too hard, conveniently, Hanks, got to be little again. In the movie Big, Hanks played Josh Baskin, a boy who becomes fed up with the injustices of childhood and longs to become big. Josh finds a magic Zoltar fortune telling machine and with the pull of a lever, wishes to be big, and overnight, Zoltar grants Josh his wish. The next morning, Josh was big...on the outside. He was over 6 feet tall, he had facial hair, and his voice was deeper, but, on the inside, Josh was still 13 trying to navigate a very grown up world, a world he didn't understand. Josh couldn't tell his parents what happened, so, he was on his own in the big world, just like he wanted...or so he thought. It didn't take Josh long to realize that being big, isn't all it's cracked up to be, so he desperately tries to find the magic Zoltar machine in order to become little again. Oh, if it were that easy Zoltar. 

Here is a scene from the movie Big, where it is very apparent, that Josh is not so big on the inside...

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I swear, some days I think Ryan must have pulled the lever on the Zoltar machine, because in the blink of an eye, he too has become big. As I listen to Ryan, scripting in his bedroom with his best British accent, his voice deepening each and every day, I sometimes freak out, ready to dial 911 and report that some British man has broken into my house and is playing Minecraft in my son's bedroom. As I approach Ryan's bedroom, baseball bat in hand ready to take on this would be British intruder, I don't find a stranger, I only find my little boy who has gotten big with just a pull of the Zoltar lever. How did he grow up so fast? Where did my little boy go? What will his future hold?

Being big, certainly has it's advantages. The horrors of potty training are long behind us (thank you God), as are the battles over haircuts and sandals, but, new struggles, new quirks, have taken their place. Some are bigger, some are not, but, just because Ryan is bigger, and in many ways "better" does not mean that autism was left behind in the toddler years. As we are still navigating the waters of adolescents and quickly approaching the waves of teens, I worry about the tsunami of adulthood. Getting big is hard. Getting big on the outside, yet staying little, naive, and confused on the inside, is even harder. Just ask Josh Baskin. In Big he recognized that his wish to be big, was nothing but, a big mistake. Still a child inside, Josh didn't understand this new world filled with grown ups and grown up problems. Although the troubles that plagued Josh when he was little went away, Josh discovered that being big, had troubles of it's own.

Similarly, a child with an ASD may have different struggles when they become an adult, but, getting bigger doesn't mean autism magically disappears. Some difficulties get littler, some difficulties get bigger, and some remain the same. With new expectations, new adult rules, and new adult consequences, it's easy to see why some of these adults would like to go back to being little. Unlike the movies though, children living with an ASD are not able to search out a Zoltar machine, pull a lever and wish to be little again. Once big, always big, yet, we hear so little about what happens when children with an ASD become big. 

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The faces of Autism Awareness belong to those who are little. During the month of April, when Autism Awareness is celebrated, most of the faces you will see belong to young children and the occasional teenagers. Rarely, will you see a photo of a grown man or woman living with autism. A picture of a grown man is not as appealing to the hearts of strangers as a photo of little boy with big blue eyes. When you see the little boy and his beautiful, innocent blue eyes, you want to "help" him, you want to "save" him, you want to "accept' him, you want people to be "aware" of him, but, the grown man, you quickly "disregard" him, even though he once was the boy with the big, blue eyes.  After all, this adult, is big, he is a grown up. He should be able to have a handle on his autism by now with all the years of therapy and support he had as a child, right? Wrong. Autism does not magically go away at the age of 18 or 21. The problems, the struggles may become different, but, for some, getting big is the most difficult challenge of all. 

The most recent study conducted by the Centers for Disease Control, lists that 1 in 68 children or 1 in 42 boys and 1 in 189 girls now have an Autism Spectrum Disorder. These children, these boys, these girls, will get big and when they do, there is very little support for them. According to a study completed by the Pennsylvania Autism Services Bureau, "If your child is 3 now, we estimate that there will be 54,486 adults with autism in PA by the time he is 21" and "As the person gets older, the availability of services decreases". There are so few services available for adults with an ASD. The waiting lists for adult services may run hundreds of people deep and many years of waiting. Once that magical milestone age of 21 hits, the only support many of these "children" have, are from their parents and when these parents are helping their big kid make it in the big world, many spend a great deal of time worrying about what will happen to their big kid once they are gone. There is no magic Zoltar machine to change these adults from big to little, when supports may not have been in abundance, but, at least support in the educational system was available. 

PictureTom Hanks, in Big.
Our state and federal government has to be the Zoltar for these kids who are now big. Pulling a lever and making a wish isn't going to cut it. Programs, services and funding needs to begin now. If waiting lists for adult services are in the hundreds when the rates of an ASD diagnosis for these adults was 1 in 330, then how long will the wait be in twenty years? If getting services for adults living with an ASD were as easy as pulling a lever on a Zoltar machine on a Jersey shore boardwalk, there would be a line across the entire state of New Jersey waiting to pull that lever. It's not that easy folks. 

For most of us, when we turned 21, our biggest concern was which bar had the cheapest pitchers of beer and no cover charge. Sure, maybe at 21, we had no idea what we wanted to be when we grew up, but, regardless of our path, we knew, that like it or not, one day we would be out on our own. Some of us, to the dismay of our parents (love you Mom and Dad) took a little longer than others. For parents loving a grown child with an ASD, it's not always that simple. Some big kids with an ASD are able to go to college, find a job and live on their own with little support, but, many, are not and that is why it is so important to change our perspective, change our view, and change what and who we see, when we hear the word autism.

Just keep in mind every gorgeous little boy you see promoting autism awareness this month will one day have facial hair, a deep voice, and possibly tower over you. Do your part in raising autism awareness this month and every month, by remembering that when you see a face like this...
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....that one day that face will look more like this....
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These faces, big or little, need your awareness, your advocacy, your understanding, but, mostly your acceptance. We have come a long way in advocating for children with an ASD, but, we must not forget the faces that we don't see. For every parent loving a child, big or little, with an ASD, our hope is that one day there will not be a need for a magic Zoltar machine to grant wishes, because with the right support, the right services, these little kids, who will one day become big, will be able to make their own wishes come true. 

These big kids with an ASD may not worry about which bar to hit at exactly 12:00AM on their 21st birthday the way you did, but, it is still a day that each child and their family should be able to celebrate and not worry, "Now what?". Chances are, the day after their 21st birthday, these big kids...these adults living with an ASD...who are smarter than most of us neurotypicals, won't wake up wondering what crawled in their mouth and died, who the he** put a vice on their head while they were sleeping and where they can find the closest Zoltar machine to make them 6 years old again. For most of us, bigger doesn't mean smarter.
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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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    Keeping it real, raw, and AWEnest while laughing, loving and living in our world 
    touched by Autism.
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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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