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"Mommy, Kiss It and Make It Better"

9/12/2014

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As a mother, after your baby is born and you get over the whole, "OMG I am responsible for taking care of this squirming, squishy, helpless creature", whose only form of communicating his or her needs and wants is via a banshee type cry, it doesn't take long for your maternal instincts to kick in and you quickly learn how to decipher one banshee wail from the next. It's funny how the cries of a child vary from situation to situation and how quickly we moms figure out which cry you need to run to with a bucket, a band aid, or a kiss.

There is the "Feed me now I don't care if it's 3AM cry". The "How many more episodes of Friends are you going to watch before you change my big, puffy, soggy diaper?" cry. The "I'm never going to nap, no matter how long you hold out so just get in here and pick me up because you know you are going to pick me up anyway" cry. And of course, a personal favorite of mine, the "Oops Mommy forgot the baby's head sticks out farther than Mommy's elbow and when Mommy walks through the door she whacks baby's head on the door frame." cry. Even as our babies get bigger and are able to communicate with more than a cry, a wail or a scream, the cry is still what gets our attention. The cry calls moms to action. And as crying experts, regardless of the age of our child, we moms are still able to differentiate the cry of fear, hurt, heartache, stress, and anger.

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A "big brother who just ran over little sister's favorite, can't live without it, Cinderella doll with his Tonka truck" cry, is very discernible from "brother just pinched little sister because he likes to watch her get what she has coming to her" cry. A "someone finished the Pringles and left the empty container in the pantry" cry is much different than an "I got tearless, burnless shampoo (doesn't exist) in my eye" cry. 

Yes, we moms know the wail of a skinned knee, the crocodile tears of a broken heart, the stifled, hiding the face in a couch pillow sob of a Disney movie death (AWEnestly, someone always dies and 9 chances out of 10, it's the mother), and the terrified scream of a nightmare. We know when mommy's kiss will make it all better or when more extreme measures are necessary. Maybe it comes with years of training our ear to hear a cry that signals a real emergency so we don't have to pause the DVR during the season finale of Downton Abbey, or maybe it's just that moms have a direct line from our child's heart to our own. We feel their needs, so we know when and how to respond. Whatever the reason, a child's cry is mom's signal that help is wanted or needed, and so, we act. 

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But what if there are no cries, no wails, no screams, or no tears? What if a child suffers quietly, alone and in silence? How then does a mother discern the kind of pain, the degree of pain and the right treatment of the pain if she is completely unaware the pain even exists? How do you kiss it and make it better when "it" is completely unknown?

When Ryan was little, I use to worry that he had some freakishly high threshold of pain. I'd put him in the tubby in what felt like "just right" tubby water only to discover he was firetruck red from the waist down with not so much as a peep out of him. Then as Ryan got older, I believed his threshold for pain was so low that I wondered if he had some type of neurological problem. A tiny little bump to his finger or toe would elicit blood curdling screams of what he believed was certain impending amputation. Then once I knew, once we heard The A Word, than I realized that Ryan's pain level may vary somewhat due to his overtaxed sensory system, but, for the most part, Ryan's level of pain isn't much different than yours or mine, but, how Ryan expresses his pain, or doesn't express his pain, is what varies from you or me.

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Just this week I found out that for Ryan, some boo boos are too ouchy to cry about.  Some pain is too difficult to share, so the hurt is hidden, buried away, and the pain does not illicit a cry, a scream or a tear. Some hurts remain hidden behind a veil of silence until one day, a simple English assignment pulls the veil away.

Ryan had to do a writing assignment about himself. Some of his major accomplishments, things he enjoys, as well as writing about "some of the worst things that have happened to you". It was in this category where Ryan's cry was finally heard. He wrote, "4th grade" then "massive humiliations that I don't want to mention here". What? Fourth grade? There were no cries of help, no screams of injustices, no tears of pain. How did I, his mother, his protector, his translator of cries, not know Ryan had suffered "massive humiliations"?

After a bit of prompting, Ryan admitted that a boy in his grade had been bullying him for years. I felt like someone kicked me in the stomach. I truly thought I might throw up directly on his writing assignment, which would have lead to one more example for my poor boy to put in the category, "some of the worst things that have ever happened to you". I had my suspicions about this boy, in my gut I knew something was going on, but, Ryan did not cry, he did not scream, he did not wail so how could I interpret silence? I was terrified, that somehow, when Ryan needed me most, our connection, the line from his heart to mine, had been disrupted.

As I tried to go back and recall signs of what I had been missing, I wondered, was it my good old bullying friend Denial whispering in my ear, "He's fine, there would be signs if he was being bullied." the reason that I didn't hear Ryan's cries? What parent wants to believe their child is being harassed, taunted and made to feel badly about himself? Even with Denial's influence, I followed my gut and I still warned Ryan's teachers, his principal and his guidance counselor to be on alert for this bully. They watched out for problems, they listened for cries, they looked for tears, yet they were as blinded by bullying as I was. Ryan saw it, he heard it and what's worse, he felt it, yet, Ryan never cried. He never told Mommy to kiss it and make it better. So I didn't.

When I asked Ryan why he didn't tell me, or tell one of his teachers, he said, "I couldn't find my words". Along with my dinner contents, the blood from my heart spilled over onto Ryan's writing assignment. Ryan's words, along with his pain, were buried deep inside his AWEsome brain and he wasn't sure how to get the words out. Along with processing his pain differently, autism causes Ryan to process his feelings and his language differently. It's hard for him to put words to feelings, so instead of trying, instead of crying, he suffered in silence. A silence that even Mommy's kiss couldn't break through.

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I have cried more tears than I can count this week and have gone through a range of emotions...heartache, anger, guilt, shame....feelings that all stem back to, Mommy failed to protect him and could not kiss it and make it better. As easy as it would be to blame myself, blame the school, and even blame Ryan for not telling, I blame no one other than the bully, with a little bit of blame directed toward the bully's parents.

Bullies are sneaky. Bullies are manipulative. Bullies prey on those they perceive as weak. Bullies are nice to their victims in front of school personnel, in front of students who will "tell" and even in front of the victim"s mother. The bully hides in the shadows where no one is looking, where no one can hear the cries of his victims.

The irony for you bully, is that my son is not weak. Despite your name calling, your teasing, your harassment, my son has thrived. My son has reached goals you could only ever dream of reaching. My son has more accomplishments under his belt than mean names that you shamelessly carry under yours. You did not win bully. You will never win.

In the middle of my angst this week, one of my BFF's said, "One day (insert bully's name here) will be washing Ryan's Mercedes". In that moment, it felt good to picture this bully washing the rims of Ryan's shiny new Benz, while Ryan sat inside looking down at the boy who no longer posed any kind of threat, feeling like justice had finally been served. The moment of gleeful retribution quickly passed though because Ryan does not have a Mercedes today. 

Today, Ryan is not worrying about who will wash his imaginary car or what he will be when he grows up or what prison the bully may wind up in, Ryan just wants to go to school, to learn about the metric system and algebraic equations, and to continue singing his heart out in a safe place free of bullies. In a place where Ryan feels valued, a place where Ryan feels pride, a place where Ryan feels special, a place where Ryan feels protected.

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With the range of emotions that hit you as a mother when they place that squishy, funny looking creature on your chest seconds after they enter the world, the strongest of these emotions is the instinct to protect. Regardless of how smooshy and wrinkly that new baby looks, and how very briefly you have known him, you know that you would do anything to protect him, but, sometimes we can't always be there to kiss it and make it better. Sometimes we can't be there to kiss the scraped knee at recess, to hug a broken heart sitting alone in a college dorm room, or to call out the bully in the classroom, and to a mother, this inability to protect is anguishing. The pain of your silently suffering child makes the pain of childbirth feel as mild as a scraped knee. It is when we can't kiss it and make it better that we mother's need an epidural to ease our pain.

Yes, I will probably always suffer from the guilt of not hearing my son's silent cries, for not listening more with my heart than with me ears. I will wonder if autism stood in Ryan's way, if autism made it hard for Ryan to "find his words" and to find his cry. As Ryan continues to grow and mature, I may not always be able to kiss it and make it better, that is the sad reality for all parents. However, just like a newborn baby knows that even if you don't hear their cries at first, eventually you will be there to pick them up, to soothe them, to hold them, and to kiss it and make it better. 

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I take comfort in knowing that no matter what was happening in the classroom, on the playground and in the hallways, Ryan knew that when he got home, when he made it safely to my arms, then, at that time, he felt safe, he felt happy, he felt loved. Ryan knew that even if I wasn't "there", eventually, I would be, and Mommy would kiss it and make it better, without him ever needing to utter a word. 

Autism may sometimes disrupt the line of communication between Ryan and me, making it harder for me to hear him, but, that disruption doesn't make our line, our connection, or the message Ryan is conveying any weaker. Ryan's difficulty with expressing himself just makes me appreciate the words, the cries and even the banshee wails all the more because I know how hard he worked to"find his words" which makes the line from my heart to his, even stronger.

In this instance, although my heart may ache and lead me to believe that my connection with Ryan was weak, and that I failed him, my brain knows our connection was strong and even though I didn't "hear" him, the love, support, and encouragement Ryan felt at home, helped him prevail. The only thing weak here, is the bully and his meager, failed attempt to keep my son from succeeding. 

Ryan is not weak, Ryan is strong. Strong enough to know that even though this bully's teasing and words may have caused Ryan "massive humiliations", when he was in 4th grade, and even though the bully still makes Ryan feel "uncomfortable" today, Ryan now believes in himself, not in the empty words of a bully. I believe going forward, it will be Ryan who will find his words and it will be the bully that will be at a loss for words, for names, for taunts and the bully will find himself cast out of the shadows. And we all know, that without the shadows, the bully's words, his actions, and sometimes even the bully himself, amount to nothing.

As for my friend's glimpse into Ryan's Mercedes driving future, and the bully's soap and bucket car washing future, well, all I can say is, I hope Ryan picks a white or a black Mercedes because those two colors are very, very, difficult to clean and Ryan is incredibly meticulous.  

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Protecting him from bees, bugs and bullies, but, mostly giving him the confidence to protect himself.
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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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When Worlds Collide

7/24/2014

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Little sister Emma has found the portal to Ryan's world.
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#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 Placebo Effect

4/24/2014

1 Comment

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

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

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

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

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

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

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

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

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Chuckie Disease, I mean, Chuckie Cheese. A hypochondriac's worst nightmare.
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Small Talk is BIG

3/27/2014

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

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

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Ok, fine, my dirty little secret it out. I'm terrified of creepy looking dolls, and I'm a chatter box blessed with the gift of gab who can engage in small talk all day long with my blah, blah, blah, Chatty Cathy mouth... often at tongue straining speed. If any kind of alcohol or medication is added to my gift of gab, it's highly recommended that anyone within 50 yards of me, grab some ear plugs and an interpreter in order to protect your hearing and decipher what the he** I am saying. Even during my college days, I never "experimented" with stimulants because I felt certain that between my already hyper, overstimulated personality and my gift of gab, someone would have surely tossed me over a balcony. I promise you, had I been given an opportunity to score some of Walter White's highly addictive blue meth from the series Breaking Bad, regardless of it's 99% purity, I still would have never become a meth head junkie. Walter would have shot or poisoned me within three minutes of my first meth buzz. I would have never stood a chance of becoming addicted. 

Good thing we have no balconies at our home and it's probably in my best interest to never have my science loving, money loving Ryan ever meet up with Walter White because Ryan does not believe my gift of gab is a gift at all. In fact, to Ryan, most of the time I am just noise...noise that makes his "brain hurt". Ryan loves me to the sun and back, but, as far as my small talk gift of gab, well, quite frankly, Ryan would happily have me re-gift my gab and Dan would probably help Ryan wrap it. Re-gifting my gab is a much better scenario than having those two inquire with Walt how big of a barrel they need for me.
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Ryan loves small talk about as much as Walter White loves the DEA. Autism, or Autism Spectrum Disorder (ASD) is a social communication disorder. Many people with an ASD, have difficulties with socialization and communication and Ryan is no exception. Small talk involves both communication skills and social skills and Ryan struggles with both. Ryan is also a perfectionist. If Ryan can't get something right, or if Ryan thinks he won't get something right, Ryan is not going to risk being wrong. So, whatever this "something" is, just ain't gonna happen. This is why, more often than not, Ryan remains silent in social settings. 

Small talk is a way of social bonding, a way of trying to fit in or be accepted. Ryan spends very little time concerning himself with fitting in. That's not to say that Ryan does not care about fitting in, but, socializing, bonding, and fitting in exhaust Ryan. Socializing for Ryan means too many social cues that he misses, too many words with double meanings, too many facial expressions that are hard to read and too much body language that is hard to interpret. More times than not, Ryan decides that small talk and "fitting in" is all just way too hard and not worth the risk, so he frequently chooses to be alone. Small talk is also used as a way to start or end a conversation or to fill in that awkward silence in a conversation many of us find uncomfortable. Since conversing is difficult for Ryan, and since silence to him is not awkward, but, a welcome relief, it makes perfect sense that for Ryan, small talk is BIG.

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Back when Denial and I were often engaging in small talk, Denial would tell me that if I just kept talking at, I mean to, Ryan, he would eventually respond. So, every day on our way home from daycare, I would barrage Ryan with questions about his day. Just trying to prompt him to say something. "What did you have for snack?"..."Did you take a nap?"..."Did you make any crafts?"...and my favorite, most terrifying question that always came last, "Who did you play with on the playground today?". All my questions would go unanswered as Ryan stared out the car window, wishing there was a balcony to toss me and Denial over. I kept thinking, every single day, if Ryan would just answer one question, if he would just connect with me on one thing, I would be so much happier. Just like my friend, Fence Post, I felt certain that all my chatter, all my small talk would eventually make Ryan creak. Funny, how in those moments when I was so worried and so scared and wondered, "Why doesn't he respond to me?", Ryan's happiness didn't come into my mind. Getting Ryan to small talk was for me, not him. All Ryan wanted after a long day of daycare, school, and expectations, was to finally be in a place where he was safe, loved, and free of the stress of what he was expected to say next.

When Ryan continually failed to engage in my small talk chatter, or in small talk with friends, Denial assured me that Ryan just didn't care about friends, so small talk wasn't even necessary. This "didn't care" conclusion that Denial enabled me to draw, lead to many quiet car rides home with only Spongebob playing in the DVD as company. For Denial to have me believe, or anyone believe, that Ryan doesn't care about the social bonding of small talk or making friends is unfair. Certainly, small talk may not be as desirable for Ryan as it is for his mother, Chatty Kathy, but, just because Ryan's small talk is minimal, doesn't mean he cares little about acceptance, it just means that for Ryan, it is easier, and safer, to stay silent. After all, with silence, there is no chance of social mishaps, there is no chance of misinterpreting what someone means, there is no chance of saying the wrong thing at the wrong time, so, there is no chance of getting hurt. Whether he likes it or not, Ryan needs to learn what to say, and how to effectively communicate to survive in a world full of Chatty Kathy's. Coming from the heart of a Chatty Kathy mom, I hope that one day Ryan will not only know how to small talk, I hope that maybe one day he will actually want to chat with me.
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Ryan has worked with Mrs. P, an amazing speech and language therapist, for five years, not because Ryan is non-verbal, not because he has poor articulation, but, mostly to help Ryan with his social speech, to help him engage in small talk. We all know that regardless of a designer Autism label, small talk is big when it comes to relationships with peers, teachers and colleagues. Ryan can do it, he can be taught to small talk, but, chances are, small talk for Ryan will always be BIG. Mrs. P has given Ryan the foundation he needs to small talk with his family, his friends, and his teachers, but, Mrs. P, no matter how wonderful she is, can't make Ryan want to do it. Autism may always have a hand ready to cover Ryan's mouth and keep him silent, but, maybe one day, Ryan will willingly and confidently push that hand aside. I have seen it happen...on rare occasions.

Needless to say, for a Chatty Kathy, someone who rambles on and on and on and on and on, having my son not engage in small talk with me, regardless of the reason, is still difficult. The AWEsome thing about my attempts at small talk with Ryan now is that Ryan has the communication skills to tell me, I'm "setting his brain on fire", or that I'm "speaking gibberish" or that he has "no possible idea" what the heck I am saying. Even Chatty Kathy knows when someone is nicely telling her to shut the he** up. I recognize that when Ryan gives me an inch, just a tiny hint of his willingness to engage in some small talk, I go for the mile, speaking gibberish at a high rate of speed that gets muddled up somewhere between Ryan's ears and his brain. In my hyper-crazed excitement to find Ryan, I wind up losing him again. Someone needs to tie a knot in this Chatty Kathy's pull string.
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You can only imagine that on the rare occasions that autism releases it's hand from my boy's mouth, and he does decide to strike up some small talk with me, I feel like I am getting a glimpse inside his soul. I never, ever take these moments for granted and I try so hard to tape Chatty Kathy's mouth shut. A few weeks ago, while driving to pick Kyle up at baseball, Ryan said, "Are you aware that the mineral fluorite has the ability to glow in the dark?". I almost hit a pedestrian. First of all, Ryan STARTED the conversation, second of all, he asked it in the form of a question (never happens unless it's "Where's my lunch?") and finally, I had no idea what he said because for once his words sounded like "gibberish" to me. Fluorite? What in the name of Sam Hill was fluorite? I tried to wrack my brain with a smart mineralogist type of response. Turns out, my, dumb mother response of, "I had no idea!! What else can you tell me about fluorite." was all I needed for my brilliant son to chat for a good five minutes about minerals. 

Thank God for minerals, rocks and an AWEsome science teacher. Those five minutes were a gift so beautiful and so amazing that my gift of gab only interrupted twice...and he called me on it both times by saying, "I wasn't finished yet.", and that's when I almost struck a light pole (Clearly Ryan's moments of small talk should not happen while I'm driving.). "I wasn't finished yet.", meant Ryan didn't give up, he didn't shut down because mom couldn't shut up, small talk got hard, but, Ryan stuck it out. Autism raised it's hand to cover Ryan's mouth and he crushed that hand with a big chunk of pyrite (aka Fool's Gold...I knew that one). Wow! It was without a doubt, the most amazing small talk, I have ever engaged in...and I'm still gushing over it.

As the van slowly pulled up to the curb at the high school, the magical moment ended, but, my heart continued to soar. Ryan crawled into the back seat, making room for Kyle, and turned on Spongebob. Our small talk had ended, but, it gave me a glimpse into my son's future. I pictured him surrounded with other sciencey like, smarty pants mineralogists in white lab coats discussing minerals (I realize mineralogists may wear polo shirts instead of lab coats, but, please let me have my moment) and Ryan not only engaging in the small talk, but, enjoying it. Surrounding himself with like minded people discussing something he is interested in, may be all Ryan needs to have small talk not be so BIG. I just hope that this group of white lab coat wearing mineralogists need a dumb, old Chatty Kathy to work in the lab cleaning up mineral dust and answering the phones, so I can continue to witness my AWEsome boy, finally being so comfortable with who he is, that small talk comes as easy as pulling a string.
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Said Ryan never...yet.
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The Early Bird Gets the Choice Donut

3/6/2014

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I looooove Saturday mornings...sleeping in, no early morning kid activities, and long leisurely breakfasts in my jammies with my hot off the presses, just delivered on Friday, People Magazine. My little piece of heaven. So, when I have to get up early on a Saturday, I am not only tired from celebrating the arrival of the weekend by watching three back to back episodes of Breaking Bad until the wee hours of the morning, I'm grumpy too. "The early bird gets the worm", so goes the old proverb, but, this past Saturday, Ryan and I weren't going for worms (I could just hear his annoyance at such a stupid saying), we were embarking on a 45 minute road trip with a quick stop at Dunkin Donuts. Here's the thing, Dunkin Donuts makes donuts ALL DAY LONG. Oh sure, they want you to believe that their donut baker lumbers out of bed with the early bird while moaning, "Time to make the donuts" so you feel rushed to be the FIRST ones in line for the freshest, choice donut, but, it's all a scam. You can be the late bird and still score a tasty, trans fat and cream filled donut. 

Ryan was about as thrilled as I was with the early morning Saturday change in routine, so instead of telling him the "early bird gets the worm" (eyes roll), I told Ryan the early bird gets the choice donut. Yeah, I'm as big of a phony as the "time to make the donuts" guy. Ryan whined, complained and stumbled out of bed and refused to brush his teeth because it would "ruin" the taste of the coveted donuts (he popped in a piece of gum after the donuts which I know a dentist would not approve of as a toothbrush substitute). Before we headed out the door, I was ordered to fill Ryan's Thermos with Welch's Grape Juice because my boy's elephant memory, recalled that Dunkin Donuts does not have Welch's Grape Juice and that their orange juice has pulp in it (the horror). We early birds, were so early, Ryan and I even had time to go inside Dunkin Donuts and peruse the plethora of choices rather than risk a donut catastrophe at the drive thru. Once we recovered from the near meltdown that took place when my early bird spied the strawberry iced donuts being placed on the shelf after our order was placed, bagged and paid for (clearly when it was "time to make the donuts" the strawberry iced ones weren't at the top of the old, tired baker's list), we were on our way, to our real destination.
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Ryan loves a road trip, and I love having him in the passenger seat next to me (even though I stress a little because I know he is safer in the back, but, now that he is 12 and the law says he can ride up front, there is no going back...figuratively and literally). Quality time, just the two of us, enhanced with a little donut sugar high. I tried for a while to chit chat, but, after being grunted at numerous times, I gave up and was equally happy listening to my boy singing, scripting and laughing at whatever show he was watching inside his head. In that moment, I sort of related to that early bird and his successful worm hunt, although I was tired and longed for my leisurely breakfast while happily admiring Matthew McConaughey in a black tuxedo (sorry Matthew, the white was a little too Saturday Night Fever for me) in People, maybe getting up early, really did enable me to score the coveted worm.

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Although I was enjoying the morning, I didn't get out of bed early and leave the Oscar predictions in my latest People Magazine sitting on the kitchen table for Dunkin Donuts. Nope, our destination was a Music Festival at a local college for piano students. This was Ryan's first time attending so I had no idea what to expect and for a boy who likes a plan and struggles with "new", he didn't know what to expect either. Ryan's fabulous piano teacher had written out a schedule for him instructing him when to be where. First up on the list, was a workshop on the Progression of Left Hand Accompaniment Patterns. What? I made Ryan LOL, even though he shushed me with embarrassment, when I did my best Charlie Brown's teacher impersonation. I am completely illiterate when it comes to anything music, so this professor's "wah, wah, wah, wah, wah", was like a foreign language to me. I tried to pay attention, but, after Ryan moved two rows in front of me, not because I was such an embarrassment to him, but, because the professor told him to (although, I'm sure he was relieved to put some distance between himself and his musically inept mother), I found my mind start to wander. 

As I sat waiting for the workshop to end, I began to worry about Ryan's "adjudication" on his piano skills which would be next. Ryan would be judged on various piano playing skills while in a room...alone...without me. As my anxiety began to escalate, awaiting this so called, "adjudication", I couldn't help but recall a different type of adjudication that I regularly attended as a juvenile probation officer. Waiting for a judge to make a different kind of adjudication for a different kind of kid. As a juvenile probation officer, it was my job to provide testimony to the court about the juvenile who stood next to me. I couldn't help but compare my role as a mother whose job it was to protect, advocate and fight for my child being that much different, yet, I struggled with whether or not Ryan would object to my testimony or if the judge would find my testimony relevant. 

I wondered, if at this adjudication for my child, do I present the facts...all the facts, or do I let Ryan take the stand on his own without my testimony? Will Ryan incriminate himself when he doesn't make eye contact with the judge? Will the judge think Ryan is rude if he forgets to say, "thank you" or ignores a question the judge asks that has nothing to do with the piano? What if Ryan drops his paper and refuses to pick it up because he hates the feel of paper? Will the judge think Ryan is not taking his adjudication seriously? Will Ryan's flat out refusal to put on a name tag because stickers have caused him anxiety since he was two, make him appear defiant? If Ryan refuses to take his coat off because the hot air blowing from the vents makes his skin feel dry and scratchy, will the judge think Ryan has no respect for the Music Festival, the adjudication and the piano itself? There was a whole lot going on in my scary head for a 45 minute piano workshop. 
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This battle going in my psyche came to a standstill when I watched Ryan practice in a sound room minutes before his adjudication. It was then that I decided not to hang my kid out to dry (he would have assured me he was not wet). I decided that if I don't want a label to define Ryan, even when his quirks and social struggles make him stand out, then I can't define him with that label at every turn either. There are times when The A Word, has to be mentioned...at a 504 Plan Meeting with school officials, at the dentist office when they realize total sedation will be necessary to fill a cavity (or three), at the pediatrician's office when a strep test is necessary, or at the hair salon when it's a new stylist, but, not at a piano adjudication. This was not because I didn't want Ryan to do well. It was not because my lack of interest in music minimized the importance of music to my son. The reason I let Ryan take the stand on his own was because unlike those courtroom adjudications when my words were needed to describe the juvenile standing before me, my words were not needed before a judge in a sound room. Sharing words....sharing The A Word, was unnecessary because this was music and music is one place where Ryan's quirks and differences disappear into the ivory of the keys.

I wished Ryan luck, although I knew it was not necessary, and Ryan walked past me, piano books in hand, a smile on his face and no name tag whatsoever. As I heard the judge greet Ryan, Ryan mumbled a monotonic, "hello", then he quietly closed the door and left me to wait on the other side. This was new for me, being on the other side of the door, not being Ryan's voice. Although I trembled with nervous energy, I had never been more proud of my son. As I listened through the door, frustrated that I didn't bring a cup to hold against the door to enhance the sound (AWEnestly people, I can't cut the cord completely), I did not hear Ryan speak in his British accent scripting Stampylonghead in a diatribe about Minecraft, I did not hear Ryan stumble over his words with his sometimes "cluttered" speech and I did not hear Ryan complain about the heat blowing out of the vents. All this spying, worried mom heard, was the beautiful sound of Ryan's fingers finding the right chords, timing his intervals and "expanding the use of the keyboard" as Ryan's label, his quirks, his differences, dissipated with each beautifully played note.
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I all but fell into the room once Ryan finished and opened the door, and I quickly and discreetly wiped away my tears so Ryan wouldn't reprimand me for being "too proud". Ryan bounced out of the room and said, "That judge guy was AWEsome and he said I did great!". In fact, "that judge guy" gave Ryan the highest marks, "superior", in every category with the exception of one "excellent". Clearly, Ryan did not need my testimony, the facts of who he is and what he is capable of, were evident without any input from me. I did not need to share The A Word with the judge who adjudicated my son because he did not need words or a label to see Ryan's ability. There will always be times when Ryan's quirks will make me want to quickly defend him by throwing that A Word under the bus, but, more and more, Ryan doesn't need excuses, labels, or me defining him. Ryan is finding his own place in the world, and as he has told me time and time again, "I don't feel different, I just feel like me."

This is one early bird, who is so glad that my love of sleep, a late breakfast and a date with People Magazine did not cause me to miss the worm. Not because I wanted the fattest worm or the choice donut, but, because I got to spend a day with someone who constantly puts the AWE in AWEsome. Someone who will never let a label, a judge or even his mother, define him. Some days it takes me longer to wake up than others. This past Saturday, even with my donut sugar high, it took me all day to wake up, but, when I finally did, I realized that even a full page spread of Matthew McConaughey playing strategically placed bongos in People Magazine, takes a back seat to the wonderfully gifted piano player sitting in the front seat next to me. 

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    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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