All content on this website is copyrighted and may not be shared or copied without the author's permission
The AWEnesty of Autism
  • Blog
  • Contact Me
  • About Us
  • AWEnest Advocacy

Believe

12/23/2013

1 Comment

 
Picture
We are told, of that first Christmas so long ago, that the Three Wise Men traveled miles and miles from the east following a star to find the baby Jesus. There was no proof that this baby was the Son of God, or proof that the star they followed would lead them to the baby, but the Wise Men wrapped the first gifts of Christmas, packed their camels and off they went (Can you imagine how uncomfortable that trip must have been? As the youngest of five girls, I always had to sit on "the hump" in the car and even for a short trip, it was not pleasant.). Throwing comfort aside, the Wise Men traveled a great distance to meet this baby that was prophesized to them. This baby that was foretold to the Wise Men would be different than any baby before him or any baby since. The Wise Men had no proof, they had no scientific data, no laboratory evidence, no DNA to prove a virgin birth and no GPS. Nope, the Wise Men went to Bethlehem, not because they had empirical evidence, but, because they believed.

Picture
According to Webster, to believe is to "accept as true or real; to have faith, confidence or trust". Maybe it was easier to believe back in Biblical times. There was no Google, no data at the tip of the Wise Men's fingers to test their belief, no Twitter to tweet their belief only to have others re-tweet, comment, and denounce their belief. The Christmas season is immersed in the ability to believe. To believe in the birth of Jesus, to believe in Santa Claus, to believe in flying reindeer, to believe in a talking snowman, to believe in a magical train to the North Pole. Even to believe in the good of mankind (Wow, with all the negative social media and news at our fingertips, believing in the Grinch might be easier than believing in mankind).

Picture
Most of the Christmas television shows and movies are designed to make children believe. To believe that Santa can travel the globe in 24 hours, or that a flying red-nosed reindeer can save Christmas or that a Grinch's heart can grow three sizes in one day. The irony is, most children do believe. It is us grown ups who need convincing (which is evident by my smug retort at the goodness of mankind). Children don't need proof, they don't need empirical evidence to convince them that Christmas magic is possible, because children don't believe with their minds, they believe with their hearts. And that's why we adults lose our ability to believe somewhere along the way. We grown ups become as cynical and tarnished as old, forgotten Christmas ornaments. Typically, the only cure for our adult cynicism is to believe like a child, and sometimes, it is to believe in a child.

PictureRudolph, the Red Nosed Reindeer
One of my all time favorite Christmas shows is, without a doubt, Rudolph the Red Nosed Reindeer. It is a timeless classic, that I have loved since childhood. I love the show even more today, for what it represents....that being different is not a bad thing, in fact, being different might just make you a hero. Rudolph's differences, and the unwillingness of others to accept his differences, lead him to run away from people who all seemed "the same". Rudolph hoped to find a place where he would fit in, but alas, even on the Island of Misfit Toys, Rudolph couldn't blend because, although different than all the other reindeer, Rudolph was not a toy. Yes, even among misfits, Rudolph and his equally different elf friend Herme, were misfits. Although Rudolph may have not found his place on The Island of Misfit Toys, he believed that children in the world had enough love in their hearts to love toys that were "different", even a Charlie in the Box or a squirt gun that shoots jelly. Once Rudolph discovered his difference could make a difference he rescued the misfit toys, knowing full well, children would believe even misfit toys deserve to be loved.

Picture
When Ryan was younger, the innocence and the ability to believe, made children unaware of his differences which made fitting in and being accepted much easier. Kids believed Ryan was just like them, no ASD, no quirky traits, just a quiet, sometimes angry little guy, who kept to himself. As kids got bigger, Ryan's differences became bigger too and it was harder for kids to accept and understand  his differences. More and more frequently Ryan, felt like he belonged on The Island of Misfit Toys. A safe, accepting island where Ryan felt like he belonged with other kids more like him. I believe, these kids don't need to jump on the first iceberg that floats by to escape a world filled with sameness, these kids need a misfit reindeer...or a loving, somewhat neurotic mom, to believe in them.

All the Christmas shows have a belief element to them, but what they also have, that often goes unnoticed, is the protagonist of the story, finds someone who believes in him, before he is able to believe in himself. Think about it, Rudolph had Herme, the Grinch had Cindy Lou Who, Frosty had Karen, and George Bailey had Clarence the Guardian Angel. Even Ebenezer Scrooge's old partner, Jacob Marley, believed enough in Scrooge that he carried his heaven chains for the netherworld and haunted Scrooge one Christmas Eve in an effort to save him. Once these "misfits" had someone believe in them, they could finally believe in themselves. I wish I would have picked up on this story line many, many Christmases ago.

Picture
I admit, like the kid in the Polar Express, there have been times over the years that I was "a doubter". After spending so much time worrying about Ryan's future, there were times I was missing his present. My fear from all things Google, often impaired my ability to believe. However, it was Ryan who helped me believe, who helped me see past my own fears, who helped me to understand, that just like Rudolph and the Misfit Toys, having someone believe in you, differences and all, makes an uncertain future, as bright as a shiny, red nose. It took an ASD diagnosis, "accidentally" pushing Denial off Santa's sleigh, and watching my boy continue to overcome obstacles to make me believe like a child on Christmas morning. I still worry, I still have moments of doubt, but, those moments melt away faster than Frosty in a greenhouse, as my Ryan, with his uncanny ability to overcome, makes me believe.

Picture
I'm sure occasionally Ryan would still love to jump on an iceberg and find an Island of Misfits, an island filled with kids who are just like him, but, I think most days, Ryan is happy being just who he is and he believes in himself. Unlike Rudolph, who had to save Christmas to get people to believe in him, Ryan has always had a group of believers. Whether it's been a teacher who saw past his different style of learning and adapted her way of teaching, or a piano teacher who saw past his anxiety to the talent hidden behind the fear, or the chorale teacher who heard the beautiful voice behind the concern of trying something new. Or a mother, who although scared, worried and initially heartbroken, saw through the label, through the differences, through the scary internet descriptions, to the boy who hid behind the differences....the boy whose uniqueness is not less, it is AWEsome.

Picture
The ability to believe, may not give you statistical certainty that a man in a red suit is the mother of all toy bearers, or that a red nosed reindeer once saved Christmas, or that a baby born thousands of years ago was different than any baby before or after him, because believing is not a number, a piece of evidence or a logical explanation. Believing is a feeling....a feeling inside your heart. So, no matter what my eyes may see on the internet, no matter what my ears my hear from professionals and no matter what my brain may obsess and internalize, it is my heart that I must trust. For it is the love inside my heart that gives me faith in my son, and  strengthens my ability to believe that Ryan's differences make him as unique and outstanding as a red nosed reindeer, not a misfit toy on a frozen, deserted island.

Although my uniquely amazing boy may not save Christmas, he has found a way to save me. Ryan has saved me from believing in a world where everyone should look the same, act the same, and be the same. A boring world where I once believed it was so important to "fit in". A world that once upon a time, there would have been no place for different, no place for him. I believe that the world will continue to get better at accepting different, and I believe that one day the world will believe, like me, "different, not less". I believe in Christmas magic, I believe in that exceptional birth so long ago, and I believe in my son. And because I believe in Ryan, he believes in himself, and that my friends is the difference between canceling Christmas and using our differences to light the way.

I hope that not only at Christmas time, but, each and every day, you believe.
1 Comment

Bad Santa

12/17/2013

1 Comment

 
Picture
Santaphobia, an overwhelmingly, terrifying fear of Santa Claus may not be found in the DSM-V as a true phobia diagnosis, but, oh it is real. Just check out Ryan hiding behind the fake presents at Santa's faux workshop at the mall. We do not have one photo of this child sitting on Santa's lap. Not even one of those crying, screaming, reaching for Mommy photos that are so funny to look at when the kids are obnoxious, not afraid of anything, teenagers. Nope, Ryan wouldn't go anywhere near that jolly old elf. Ryan didn't care about Santa's twinkling eyes, his merry dimples or his beard as white as snow. It also didn't matter if Santa had a sack full of toys or a handful of candy canes, my boy wanted nothing to do with him....then this year at the age of 12 (yes at 12 Ryan still believes in Santa...don't judge) a small break through occurred on a cold winter's night.

Picture
We have a very cool local fire company that cruises through our township with Santa on the front of the firetruck stopping for kids to tell Santa their Christmas wishes and handing out candy canes. For the longest time, the firetrucks came right past our house which was so AWEsome! We would forego our coats and hats and run outside, camera in hands to capture the moment. While the rest of the family was running to Santa, Ryan was running from Santa....fast....upstairs...to the bathroom....where he immediately locked the door. At first, with Ryan's sensory sensitivities, I thought his terror stemmed from the occasional wail of the siren from the firetruck that let kids know Santa was on his way. After Santa was safely down the street and out of sight, I would unlock the bathroom door and find Ryan cowering on the floor hands over his ears, so it seemed like the siren fear was a plausible theory. However, the siren theory didn't explain Ryan's fear of Santa at the mall, Santa on the street corners, or Santa who visited the holiday parties at Ryan's school (which by the way, he hated....because of Santaphobia). Ryan's fear of Santa was extreme and puzzling....until he finally found the words to tell me.

Picture
Many kids, especially toddlers have a fear of Santa Claus or people in costumes, it's a pretty common fear, but I always thought it was funny that Ryan had no fear of the characters at Disney World, Chuckie Cheese or those creepy fake characters hitting you up for cash on the streets of New York City for a photo op. Ryan's fear was strictly Santa Claus. Perhaps his phobia was not Santaphobia, but, actually Pogonophobia which is a fear of beards. Mickey and Donald don't have beards, Chuckie Cheese appears to shave daily, but, Ryan has known other people that have beards and these folks' beards did not cause Ryan to run away and hide in the back of the car. The other possibility may be Hagiophobia which is the fear of saints. After all, Santa Claus is Saint Nicholas, but, since we know so few saints, it's hard to test that theory. Then I started to wonder, if maybe, Ryan hid under the Christmas tree one cold, winter's night as Dan and I watched one of our favorite adult holiday movies of the season, Bad Santa. Billy Bob Thornton as Santa Claus would strike fear in the bravest  of children.

Picture
Bad Santa, is without a doubt, the most inappropriate, raunchiest, wrongest (horrible grammar, but trust me, "wrongest" is fitting) Christmas movie out there, and yes, I have to admit Dan and I watch it. Ok, fine, we own it. Ok, fine, whatever, we own Badder Santa which is even raunchier and while I'm sitting in the confessional booth, I may as well admit to rewinding some of the wrongest scenes and laughing until I cry. I know it's inappropriate, I know it's un-Christmasy, and I know there is not a Badder Santa around than Billy Bob Thornton, but, my gosh it is pee your pants funny. I promise that every time we have watched it, Dan and I made sure that the kids were busily occupied or sleeping. Which is kind of hard to believe since by the age of five, our kids could quote all of the curse words Clark Griswold rants at the end of Christmas Vacation when he receives his Jelly of the Month Club subscription. I guess a frustrated father during the holidays is acceptable in our home, but, fortunately we draw the line at drunken, cussing, fornicating Santa Claus. Maybe one night, Ryan snuck under the Christmas tree as Dan and I watched Bad Santa and heard Billy Bob Thornton dressed as Santa drop the F bomb as some innocent child sat upon his knee or maybe Ryan caught a glimpse of drunken Santa beating the stuffing out of the fake reindeer after crawling off the escalator in a drunken stupor. Or maybe, it's not Billy Bob Thornton's Santa that Ryan worries about, it's the Santa who actually puts the presents under his own tree that freaks Ryan out a bit.

Picture
As any parent knows, the holiday season can be a time of stress and madness. All the expectations that the likes of Martha Stewart, Nate Berkus and those horribly perfect, crafty moms who pin away on Pinterest, put upon us mothers are ridiculous. Trying to make the most wonderful season for children even more wonderful by baking the right cookies, making gingerbread houses that Hansel and Gretel would be jealous of, decorating the house with enough lights to make your neighbors wear sunglasses at night, and trying to deliver on the, all so important, Christmas Gift List. Christmas is after all, the most wonderful time of the year, which begs the question, why do we try and kill ourselves to make it more wonderful? I would love to blame it on Facebook and Pinterest, but sadly, I have been trying to make Christmas perfect long before social media pressed upon me the importance of such a task.

With all the holiday stress, all the holiday perfection, the one guest who never fails to show up over the Christmas holiday, completely uninvited is good old Denial. Yep, Denial constantly reminds me that Christmas time is a magical time for children and that all children feel the same way about Christmas....complete and utter JOY! With Feliz Navidad pumping out of the stereo, as I baked yet another batch of Christmas cookies that will be found in the freezer in April and tossed in the trash, Denial would yell, "Yes, sure, the lights, the decorations, the changes in routine may be difficult for a kid on the spectrum, but Christmas ONLY comes once a year, so you have to make the most of it!". It doesn't matter that even with Denial putting such notions in my head, in my heart I often wondered if all the holiday madness was too much for a boy who hates change, who has a photographic memory and remembers exactly what you did last year, so, heaven forbid if you don't remember the precise glass he drank his special Holiday Punch out of, and who loves his family, but in small doses, not everyone all at once. 
Picture
Yes, Denial was there forcing mittens and a hat on a three year old boy as I pinned him down amongst the Douglas Fir at our annual "Find the Perfect Tree" outing at our local Christmas tree farm. Denial also helped me stuff my boys' flailing arms into sweaters and stiff shirts for our annual Christmas card photo begging Ryan in my best Grinch like voice (with swear words to match Billy Bob Thornton) to "just sit still for five minutes" while he yanked, tugged and wailed at his scratchy, yucky clothes for the perfect family photo (if you happen to get one of our cards, know that the picture on the card is a fallacy). Denial has sat shotgun next to me as I have dressed the kids and taken them to sit on Santa's lap at the mall, assuring Ryan that Santa is not scary and begging him to sit on his lap, just one time in order to capture another phony photo. And Denial is also there every year, including this one, when I beg Ryan for his Santa list and race around trying to fill his near empty list with things I hope he likes.

Picture
Ryan never really played with toys, not in the way a neurotypical kid does, so Christmas shopping has never been easy. Santa would end up "making" toys, and wrapping them up, just so Ryan had something to open. Most of the toys would be tossed aside once the one and only coveted electronic device or video game was opened. Even when Ryan was little, if the toy didn't beep, light up or provide him with sensory stimulation, he wasn't interested. The one exception was wooden blocks, which Ryan would scatter on the floor then roll his body all over them for sensory feedback his body was craving after tolerating another Christmas Season with Bad Santa. Of course, I did have my Good Santa moments and I tried to be a fair and equitable Santa. Santa didn't feel it was "fair" if Ryan's siblings had more gifts, more presents or more money spent on their gifts, even though the gift receiver could have cared less. Even this year, Ryan has three video games on his list and that's it. Poor Dan stood in line on Thanksgiving night (yes, the horror....we broke the "No Shopping on Thanksgiving Rule" and as evidenced by the wait time at the check out, clearly hundreds of others did too) to score Ryan an iPad Mini. A $300 item that wasn't even on Ryan's list, but Santa thought he would like one. The Mini was returned the next week when Ryan assured me he did NOT want an iPad Mini and if he got one he was selling it. Even Bad Santa knows that's a bad idea.

Picture"Bad Santa", Dimension Films
Perhaps Ryan's Santaphobia didn't stem from an accidental viewing of Billy Bob Thornton as Bad Santa, maybe the Santa Ryan fears is the one who tries so hard to make Christmas perfect for him and his siblings that she winds up behaving like a demonic elf. Ryan loves Christmas. He loves all the treats, the traditions, the Christmas shows (especially The Grinch, ironic isn't it?) the presents and the music. What Ryan's mother needs to tell Denial is that Ryan is happy celebrating Christmas without a list of exactly 10 gifts (no more no less), a perfect Christmas tree, a perfectly candied gingerbread house, Martha would be jealous perfect cookies and a perfectly posed family on a phony Christmas card. Maybe if Mom's Atelophobia (the fear of imperfection) would subside, so would Ryan's Santaphobia.


Picture
As for this holiday season, Ryan still suffers from Santaphobia, but, he had a bit of a breakthrough this year. Although Ryan started the evening off hiding in the car while we all went and greeted Santa on the next street over (with all the housing development, Santa can no longer hit every house, you have to meet him on the corner), some progress was made. When I told, the very young, very hip, very cool Santa about Ryan's phobia, he jumped down from his perch on the fire truck, gently walked to the car and wished Ryan a Merry Christmas with an outstretched white gloved hand holding a candy cane as a peace offering. When Santa asked Ryan if he's been good, Ryan got out of his hiding spot, made his huge, trying not to smile face, and with little to no tremble in his voice, Ryan said, "Pretty good". With that, young, cool Santa high-fived my boy and walked back to his handful of tiny, waiting fans. As Santa walked away, Ryan was grinning from ear to ear, no longer trying to hide his Christmas joy. Ryan immediately scripted in his best Agnes voice from Despicable Me, "He's nice, but scary, like Santa."

Ryan then assured his worried, guilt ridden mother, I mean Santa, that his Santaphobia didn't stem from his Atelophobic mother, or his concern if he'd been naughty or nice, and he didn't see Santa as the pre-curser of Mommy losing her holiday mind. It wasn't the fear of the beard or the fear of saints. Ryan's fear came from the fact that "Santa is a stranger who creeps down your chimney, comes into your house when you are sleeping and that's just creepy." For someone like Ryan, who thinks so logically, a man dressed as a giant elf, regardless of his degree of jollyness, who breaks into your house when you are sleeping, should not be someone whose lap you sit upon, but someone you should run and hide from. So, although Denial and I may have contributed to Ryan's Dentrophobia (the fear of Christmas trees) after torturing him year after year seeking the perfect Christmas tree and I may have ruined his chances of being a model due to Fotografizophobia (the fear of having your photo taken) from all those holiday card photo shoots that went up in flames, I had ABSOLUTELY NOTHING to do with Santaphobia. Whoosh. Even though, I have provided Ryan with years of therapy material, I think I have also helped him develop phenomenal coping skills. That most certainly make me Good Santa, don't you think?

Picture
Still a little uncertain, but a huge breakthrough!!
1 Comment

Is This THE Year?

12/10/2013

1 Comment

 
Picture
School conferences. You either love them or hate them. As you walk down that school hallway, it may feel like a slow, long walk to the gallows or a skip a dee do dah day on the Yellow Brick Road. Depends on the kid, depends on the year. It also depends on if you are one of those nauseatingly glass half full people or more like me, a neurotic, worrying, psycho who doesn't care what's in the glass or how full or empty it may be because my kid isn't a glass and last time I checked, school personnel and college recruiters don't compare educational success to how much liquid is in a glass. To he** with the glass, I just want reassurances that my kids will lead happy, enriching, successful lives and I'd like my kids' elementary school teachers to all, but promise me that by the time my kid is 8. Yeah, regardless of the kid or the year, walking down that closing in hallway to my designated school conference location, feels like a frenzied skip to the gallows. You throw in The A Word and the first year of middle school, and this year, on my way to Ryan's conference, I kept looking to see if Tom Hanks was next to me as I walked The Green Mile in shackles and handcuffs.

Whether you are crazy like me (very few people are) or not, I think the first school conference of middle school can be nerve wracking. After all, for many kids it's the first year they have a new teacher for every class, a school locker, bigger class sizes and to top it off, the teachers insist that we hovering helicopter mothers fly away and hover somewhere else. Hrumph!  It can be a tough adjustment for any neurotypical kid (and their helicopter mom), but, for a child like Ryan, who loves routine, who has difficulty communicating his concerns and needs and who cried his heart out at elementary school graduation, well, it's no wonder his crazy mom, was just a little bit edgier on school conference night. 
Picture
Every year since we heard The A Word, I worry that THIS year will be THE Year. THE Year it gets too hard. THE Year Ryan's different learning style becomes too different. THE Year a 504 Plan won't cut it anymore and Ryan will need additional support in the classroom. THE Year I have been waiting for since that late afternoon when we sat in a psychologist's office and heard The A word that would quickly attach itself to my son and his future. Every back to school night, when the teacher laid out the educational plan for the year, I would barely make it to the hallway, where I would find Denial waiting for me, when the tears would start to flow down my cheeks. Yep, this year will be too tough, this year the teacher won't "get him", this year will be different than last year. This year will be THE Year that I have spent hours wringing my hands over and now it will finally come to fruition. THE Year rears it's ugly head at me at the start of every single school year, bullying me and badgering me with the inevitable question, as Ryan's mother, did I do enough? Was a 504 Plan enough or should there have been an IEP in place? Were the accommodations appropriate? Did I push him enough? Did I expect too much? And on, and on, and on. And guess what? Every single year, Ryan takes his 3 inch three ring binder (which is very heavy by the way) and slaps me in the face (not literally of course...had to clarify in case Ryan reads this post) and proves me wrong...year, after year, after year.

As I walked The Green Mile a few weeks ago to meet with Ryan's English teacher, I felt a little nauseous. Although I was recovering from some hideous stomach virus that forced me to postpone the conference until I was able to get off my bathroom floor, it wasn't the dirty little virus that made me queasy, it was that fear...the "have I done enough to ensure the best path of success for my beautiful boy" fear that had me searching for the closest garbage can. As I sat down with Ryan's teacher, whose hand I did not shake for fear of contaminating her with the potentially still contagious stomach ache, not the self-induced one, I'm sure my nervous energy spilled out as I babbled in time warp speed. I assured the teacher that even though I looked like someone she might want to report to the CDC, much of my pale, clamminess was self-induced and not anything that required her to don a hazmat suit. She let me stay in her classroom, but, I'm sure between my ailment and the frenzied look in my eyes, this kind teacher kept her finger on the panic button under her table.

Picture
In middle school, you meet with one teacher who gives you a report from all the other teachers on your child's "team". I heard quotes from Ryan's teachers like, "Ryan is off to a nice start...", "Often it seem like Ryan's isn't paying attention, but when he is called on, he is on topic."...."Ryan is growing in confidence and is beginning to feel "safe" in class."..."Ryan asked for clarification and came during flex for additional help."..."Ryan prefers to work alone and seems content to do so." My favorite, was this one, "Ryan seems to be enjoying science and I love catching him smile!". What? No difficulty in adjusting to the new schedule? No misunderstanding of his funny quirks and facial expressions? No, I think he needs an IEP with additional support? No, occasional outbursts or scripting of Spongebob, The Grinch or Uncle Grandpa (It was reported that he occasionally does this, quietly and subtly after lunch and most kids don't notice....we hope)? Nope, not a word. When your son has a 94 GPA, I guess there isn't much doom and gloom to report.

The relief I'm sure was apparent on my face (green, sickly pallor aside) as I told Ryan's teacher of my fear of THE Year. And there, as I sat with this teacher who has taught hundreds of kids before mine and who has only known my son for approximately 88 days, she said, "Maybe THE Year will never come." Six words, six standard, nothing to put on the SAT vocab list words, were strung together to make such a powerful sentence that it took my breath away. A sentence that this helicopter mom needed to hear in order to finally ground me. Yes, this was an English teacher and words are her medium, but, I assure you this teacher had no idea the impact her grammatically correct, beautifully connected words had on this mother. "Maybe THE Year will never come." Maybe, like pretty much everything I worry about (my mother once told me that 90% of the things you worry about never come true, but, I'm not sure that is a statistical fact or something she said just to shut me up), THE Year won't come to fruition. Maybe as Ryan continues to mature and grow, he will adapt to each passing school year with pride in his work and a desire to continue to prove his nutty mom wrong as he has done year, after year, after year. Maybe instead of worrying about THE unforeseen, may never come to pass, Year, I should look back collectively at the YEARS...each and every one that Ryan has taken my fears and stomped the he** out of them.
Picture
In the brief 88 days that I knew this teacher, I knew she was the perfect choice for Ryan in a subject that has proven to be difficult for him in the past, but little did I know, she was the perfect choice for me too. I wanted to hug this woman. In a moment when my son was no longer the student, this wise teacher gifted a teachable moment to a worried, anxious mother. I swear, I felt my arms start to reach out and hug this teacher, however, I feared that hugging her might have been a little creepy and, since I looked a little like I just stepped off the set of The Walking Dead, I feared my touch would have resulted in a call to the CDC. This wonderful, fabulous teacher had no idea what those six simple words did for this anxious ridden mother. I wanted to tell her, but the full impact had not quite sunk in yet, and other parents were lining up on The Green Mile outside her doorway. I left the conference, no longer feeling like "Dead Man (or should I say Mom) Walking", but, instead I felt like someone who just received a pardon from the governor, and I hope one day, a pardon from my son. As the cool night air hit my cheeks, then and only then, did I allow the tears to fall. This time, Denial was not beside me, I was alone and this time, they were tears of joy, not tears of worry.

It's not that I doubt Ryan's ability, it's just all those years ago when I first heard The A word, I was broken and scared. It has taken me years to heal and to try and shake the words that traumatized me on Google. Words like, "lifelong disability", "neurological impairment", "Refrigerator Mother", and "group home" (shudder). It's hard not to worry, not to awfulize, when those words painted such a bleak future for your child.

When I was in Graduate School, we learned about Labeling Theory. This is a theory based on "how the self-identity and behavior of individuals may be determined or influenced by the terms used to describe or classify them" (thanks again Wiki). A sort of self-fulfilling prophecy. For example, had Ryan spent the hours on Google like I did, reading words about all the things he wouldn't be able to do, shouldn't try to do or never dream about doing, then according to Labeling Theory, Ryan would have internalized those descriptors and believed he wasn't capable of what others without an ASD label are capable of, therefore, Ryan would never try and would wind up being less....just like the label predicted. Fortunately, Ryan has never Googled autism, he has never spent hours worrying about his future, and although he knows there are things that are more challenging for him than for others, Ryan tends to focus on what he excels at, and fortunately school is one of them. Clearly, labeling theory did not address what reading those "terms" would do to a borderline crazy mother. 
Picture
I was thrilled to leave Ryan's conference being worried for nothing once again (it really may be 90% of the time, especially when you worry about EVERYTHING). Although I know I will still worry....I'm a mom, it comes with the label....the powerful words of an incredibly wise and kind teacher have helped me gain some perspective of my fear of THE Year. Just like any child, Ryan will have ups and downs in any given year, but, his diagnosis, his label, does not predict his future anymore than a child without a designer label. So, thank you to this wonderful teacher whose six words changed the way this anxious mother will approach all of the years to come. Thanks to you, Mrs. M, next year at back to school night, if Denial is waiting for me in the hallway, I will be prepared. I will carry Ryan's very heavy, 3 inch, three ring binder to slap Denial upside the head if she opens her ugly mouth. There will be no tears as I anxiously fret over, "Will this be THE Year?". No, next year I will remember, that the progress Ryan has made, the goals he has achieved, and how hard he has worked to overcome challenges in YEARS past, are more indicative of what ALL the Years ahead of him will look like, than a single label and the terms used to strike fear in a mother's vulnerable heart. "Maybe THE Year will never come", indeed.

Picture
I worried about Ryan's adjustment to 5th grade and as you can see, Ryan loved it and was reluctant to "graduate". Ryan has proven once again, that 6th grade is not THE Year either.
1 Comment

A "New Fan"

12/3/2013

5 Comments

 
Picture
So, if five years ago, someone would have asked me if I'd be interested in blogging, I would have responded with a, "No thank you, I don't think I'm the kind of girl you'd want holding a chain saw, plus, I've never really liked the flannel Lumber Jack (or Jill) look.". After I received a, "What the heck is she talking about look?" by this hypothetical person, and said person then clarified that the word was "blogging", not logging, I probably still would have had a blank, clueless look in my eyes because five years ago, the words "blog", "blogging" and "blogger" never entered my simple mind. Once my simple mind grasped the meaning of blogging, I probably would have still declined the opportunity to blog because after all, what could I possibly have to write about, I mean blog about?

Picture
Then into my life, without an invitation walked, The A Word with Denial on one side and Clueless on the other. I had to spend a little time with Acceptance after those three arrived on the scene, but over time, a fire began burning inside of me that no stack of burning logs could ever match (no pun intended). Those three uninvited guests that came and swooped into my life, helped me find my purpose, my passion, my voice and, eventually, my blog. Although, Autism, Denial and Clueless helped me find the words, my inspiration came from a beautiful, anxious, misunderstood boy that was, and is my heart. My passion, my fire, was ignited by Ryan.

Picture
Bloggers tend to blog about something they feel passionate blogging about (Wow! That sentence will not win me a Pulitzer.). Educating others about ASD has become my passion and blogging has given me the platform to share it. I am grateful for every word, typo, grammatical error and self-deprecating comment I have blogged, because it has turned my passion into my purpose. This blogging, (not logging...although log rolling might be kind of fun to try...as long as I don't have to wear flannel) has become more than I ever imagined.

Picture
Occasionally, we bloggers (funny, how five years ago I thought a blogger was a logger and now I define myself as one...a blogger that is, not a logger. No flannel for me.) invite a guest blogger to post on our site. Someone whose words evoke a similar passion to the blog owner. Someone whose words may very well make the blog owner's words look as mundane as a Britannica Encyclopedia. Someone who most certainly is going to steal the blog owner's spotlight. Why in the world would I ask a guest blogger to share HIS words on MY blog that will make my voice sound like Charlie Brown's teacher, "wah, waah, wah, wah"? The reason is simple, no matter how much I read about autism, how much I try and educate myself and others about autism, I will never comprehend what it is like to live with autism, but, my guest, Scott can.

Picture
Meet Scott Lentine. Scott is a 26 year old young man with high-functioning autism (PDD-NOS/Asperger's Syndrome) from Billerica, MA, just outside of Boston. Scott graduated from Merrimack College magna cum laude with a Bachelor's Degree in Religious Studies and a minor in Biology. Scott is currently an office intern at the Arc of Massachusetts in Waltham, where he strives to persuade lawmakers to pass key disability resource legislation to improve the lives of people with developmental disabilities. Scott loves dogs, traveling, the beach, meeting new people and going to the movies. When Scott isn't traveling or haggling with lawmakers, he is writing....poems and songs. Scott has found a beautiful way to put his experiences, his voice, his words into songs and poems and today, with Scott's permission, I will share Scott's words with you.

Just a Normal Day

Never knowing what to say
Never knowing what to do
Always looking for clues
Just a normal day

Feeling unsure
Totally perplexed with everyday life
Always on edge never certain
I wish I could lift this curtain
Needing to constantly satisfy my
need for information
Always online searching for new revelations
Going from site to site
Obtaining new insights every night

Trying to connect with people my
age
Attempting to reveal my unique
vision
But ending up alone and
unengaged
Feeling like my needs a total
revision

Just a normal day



Can't You See

Can't you see
I just want to have a friend
Can't you see
I need the same connections in
the end

Can't you see
I want a good job
Can't you see
I need to have stability and
independence and be part of the general mob

Can't you see
I want to be independent on my
own
Can't you see
I want to be able to have my own
home

Can't you see
I want the same things as
everyone else
Can't you see
I want t be appreciated for myself


The Ode to the Autistic Man

Try to understand the challenges
that I face
I would like to be accepted as a
human in all places
Where I will end up in life I don't
know
But I hope to be successful
wherever I go
I would like to expand my social
skills in life
Making new friends would be very
nice

Stand proud for the autistic man
For he will find a new fan
I hope to overcome the odds I
face today
Increased acceptance will lead
me to a brighter day

By the age of 20, I will have made
tremendous strides
I know in the future, life will
continue to be an interesting ride
I have made new friends by the
year
I will be given tremendous respect
by my family and peers
I hope to get noted for bringing the
issue of autism to the common
man
So that autistic people can be
accepted in this great land

Stand proud for the autistic man
For he will find a new fan
I hope to overcome the odds I
face today
Increased acceptance will lead
me to a brighter day



AWEnestly, I could have never put those words together so beautifully. Thank you Scott, and I assure you, with these words, you most certainly have found a "new fan". Please add me to your list of fans along with the likes of John Elder Robison, Melissa Manchester, Tom Rush, Jonathan Katz and John Sebastian. If you would like to follow Scott's blog and read more of his heartfelt words, check out his blog at http://scottlentine.wordpress.com/


I have to say, I'm really glad I chose blogging over logging, flannel shirts aside. Thanks to this blogosphere I have entered, I have met truly wonderful people like Scott who share my passion. T.D. Jakes said, "If you can't figure out your purpose, figure out your passion. For your passion will lead you right into your purpose." Scott and I have very different voices, very different perspectives, but in this blogosphere and beyond, our passion and our purpose have collided which is an incredibly cool thing. Even cooler than log rolling and climbing big trees with spiky shoes. Thanks again Scott...keep writing, keep educating, keep advocating, but most importantly, keep being you!



5 Comments
    The Mighty Contributor

       Author

    Picture
    Keeping it real, raw, and AWEnest while laughing, loving and living in our world 
    touched by Autism.
    If you would like to subscribe to this blog ...

    Enter your email address:

    Delivered by FeedBurner

    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.

    Archives

    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013

    Categories

    All
    A Blink Of An Eye
    Acceptance
    Advocates
    Aestivation
    Alone
    ASD
    ASD
    ASD And Disney
    ASD Empathy
    Asd Love
    Atypical
    Austin Powers
    Autism
    Autism Acceptance
    Autism Adults
    Autism And Alone
    Autism And Disney
    Autism And Emotions
    Autism And Fevers
    Autism And Field Trips
    Autism And Friends
    Autism And Homework
    Autism And Hope
    Autism And Lonely
    Autism And Media
    Autism And Police Interaction
    Autism Awareness
    Autism Awareness 2016
    Autism Brothers
    Autism Emotions
    Autism Empathy
    Autism Feelings
    Autism Friends
    Autism Idioms
    Autism Journey
    Autism Lessons
    Autism Love
    Autism Meltdown
    Autism Moms
    Autism Routine
    Autism Routines
    Autism Self Advocacy
    Autism Self-Awareness
    Autism Siblings
    Autism Speaks
    Autism Spectrum Disorders
    Autism Swimming
    Autism Tour Guide
    Autistic Enough
    Awe Inspiring
    Awe-inspiring
    Back To School
    Baseball
    Beach
    Beauty
    Beauty Is In The Eye Of The Beholder
    Big
    Black And White Thinking
    Brady Bunch
    Bravery
    Breaking Bad
    Bridge Over Troubled Water
    Bugs
    Bullying
    Champion
    Change
    Change Of Heart
    Changes
    Chatty Cathy Doll
    Childhood
    Christmas
    Clothes And Autism
    Clueless
    College
    Communicating
    Communication Skills
    Comparing Disabilities
    Confidence
    Conscious Uncoupling
    Creepers
    Criticsm
    Day Of Pampering
    Death And Dying
    Denial
    Diet
    Differences
    Different
    Different Not Less
    Disability
    Disney World
    Donkey
    Donuts
    Dr. Seuss
    Early Bird Gets The Worm
    Eddie Murphy
    Ed Sheeran
    Educators
    Emily Dickinson
    Emoji
    Estivation
    Facebook
    Facial Cues
    Fear Of Santa
    Fears
    Fifty Shades Of Grey
    First
    Flags Of Autism
    Friends
    Gifts
    Groundhog Day
    Growing Up
    Guest Blogger
    Hades
    Halloween
    Happy
    He Is There
    Helicoptoring
    He Loves Me
    He Loves Me Not
    History Of Autism
    Holidays And Autism
    Homecoming
    Homework
    Honesty
    Hope
    Hovering
    Hygiene
    Hygiene Autism
    I Am Sorry
    I Am You
    Idioms
    Include
    Inclusion
    Inside Out
    Instagram
    Invisible
    IPhone
    It Takes A Village
    John Elder Robison
    Judgement
    Julia Muppet
    Kate Upton
    Kisses
    Language
    Left Out
    Legacy Of Autism
    Letter To Me
    Letter To My Son
    Lifeguard
    Limited Diet
    Listen To Your Heart
    Literal Thinking
    Loch Ness Monster
    Loving A Child With Autism
    Matthew McConaughey
    Minecraft
    Minecraft Autism
    Moms
    Mother's Day
    Mothers Day
    Mothers Disabled Children
    Mothers Love
    Mothers Of Children With Autism
    Music
    Musical Gift
    Music Autism
    Myths About Autism
    Neurotribes
    New Clothes
    New Years
    Not Alone
    Not Less
    Parenting
    Peanut Gallery
    People Magazine
    Peter Brady Voice Change
    Pets
    Piano
    Placebo Effect
    Play
    Pointing
    Police
    Pool
    Proud To Stand Out
    Read Across America
    Relief Pitcher
    Remorse
    Risks
    Rituals
    Roar
    Routines
    Same Old Song And Dance
    School
    Scripting
    Sensory
    Sesame Street
    Sharing Interests
    Sharks
    Showers
    Showing
    Shrek
    Siblings
    Singing
    Small Talk
    Social
    Social Circles
    Social Communication Disorder
    Social Media
    Social Skills
    Speech
    Stereotypes
    Steve Silberman
    Stickers
    Summer
    Summer Camps Autism
    Support
    Surfers Healing
    Talk The Talk
    #TBT
    Teacher
    Teachers
    Team
    Temple Grandin
    Thankful
    Thanksgiving
    The AWEnesty Of Autism
    The A Word
    #thedress
    The Jeffersons
    The Old Me
    The Outsiders
    Throwback Thursday
    To Tell Or Not To Tell
    Touch
    Trick Or Treat
    Trying To Understand
    Unexpected
    Vacations And Autism
    Vacations And Autism
    Video Games
    Walk The Walk
    Walter White
    Weather
    Wheaties
    Wine
    Wishes
    Wizard Of Oz
    Words
    World Autism Awareness Day
    Zombies

    RSS Feed

Powered by Create your own unique website with customizable templates.