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".
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". 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? 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. 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? 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. 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. 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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One of my BFF's is Indian. She is gorgeous, fun, YOUNG and has more energy than anyone I have ever known. Come to think of it, why am I friends with her anyway? She grew up a military brat, but, spent most of her childhood in India speaking both Hindi and English...English with a British flair (Great Britain ruled India for decades, a little fact this dumb American never knew until she became besties with someone who actually lived outside of PA). Then my girlfriend met this AWEsome Indian doctor and found herself in the middle of Garrison, North Dakota for a few years only then to later wind up in South Central PA. It didn't take poor, lost "Dorothy" to realize she wasn't "in Delhi anymore". The trade off for following a handsome, loving doctor to the middle of nowhere, left my poor Dorothy friend shoe shopping online, learning a new culture and learning all the weirdness that comes with adapting to the English language. The English language that was not taught in a classroom, or in her native India with a great deal of British influence, but, in the good old USA. Sure my girlfriend spoke English, she understood English and she could read English, but, until you are thrown into the English language with no rule books on the metaphors, idioms, inconsistent phonetics, and the slang haphazardly tossed about, my bestie "Dorothy" probably wanted to click her ruby slippers and bust out of Oz (most certainly out of cold, snowy North Dakota winters) and head back to Delhi, taking her fabulous husband in her basket with her. For someone like me, who grew up speaking English and only English, I take for granted the ease of the English language, but, for some people, English isn't that easy. A study was conducted by a language processing company called Idibon to try and determine not which languages are "hard" to learn (Arabic is in the top five), but, which languages are "weird". The Idibon study looked into which languages used the greatest number of unusual features that are not used in many other languages. I am proud (?) to report that English ranked number 33 out of 239 languages in the "weirdness index". I can't decide if that is a good number or bad? I guess the fact that our language made the "weirdness list" should ease the minds of the non-native speakers. Now when they make grammatical, phonetical and pronunciation faux pas, they can acknowledge that they are not in fact weird, but, it is the English language who is to blame. I've often wondered if Ryan's struggle with pragmatic speech (language used to communicate and socialize) makes him feel like he has entered a foreign country, where he is familiar with the language....he speaks it, reads it, interprets it, and for the most part, understands it, until the English language 'weirdness factor" comes into play. My boy, and many kids with an ASD, are so literal that figurative language, metaphors, slang, cliches, etc., get lost on them, which ironically makes them feel weird, even though we now have legitimate proof that it is the English language that is weird. And as far as Ryan is concerned, there is nothing weirder about our language than the use of idioms. So, if you ask Ryan a question and he doesn't respond right away, do not ask him, "if the cat's got his tongue" because I assure you, not only will he think you are "as dumb as a rock", but, you will most certainly be shown his tongue in an attempt to prove to you that the cat in fact did not take his tongue. You will then be told, in a voice full of shock and disdain that you could AWEnestly be so stupid, that since a cat has no hands, taking a human's tongue is next to impossible The English language can be very difficult, "weird" and illogical not only for those who did not grow up speaking the language, but, for many kids with an Autism Spectrum Disorder who interpret all the words they hear in a very literal, very concrete, way. It's funny, because more often than not, I believe that the way Ryan sees and hears the world makes much more sense than the way I do. For instance, on what planet does it make sense that a heavy downpour should be equated to "raining cats and dogs"? Why not horses and cows? After all, if you are trying to talk about the large amount of WATER falling from the sky, aren't horses and cows bigger? Wouldn't that have a more dramatic effect and isn't that what we are trying to do? It makes perfect, logical sense to say, "it's raining heavily today" or "there is a lot of water coming from the clouds today" or more precisely, "I guess the water droplets in the clouds grew too heavy today and gravity forced raindrops to fall from the sky" since that is EXACTLY what is happening. Thank goodness there are no dogs and cats or horses and cows falling from the sky, what in the world would an umbrella cost in order to protect oneself from falling felines or bovines? Just like my bestie from India, has slowly learned the various cliches, idioms, metaphors and slang abundant in our weird English language, she still sometimes gets confused and AWEnestly, it is so funny to hear her strong Indian accent saying something so weirdly English (Come on, she's gorgeous, fun, and young, she has to have something I can abuse her about). Just like a non-native English speaker, Ryan can learn and memorize idioms, metaphors and slang, but, having such "weirdness" become part of his English repertoire probably will not happen. Memorizing such English "weirdness" and sort of understanding idioms and metaphors, doesn't necessarily mean they make logical sense to Ryan, and my boy is all about being logical. Being logical, being literal, helps Ryan makes sense of a confusing world. As his mother, who knows him better than anyone, you would think by now I would understand this, but, sometimes I take for granted that some of my weird English phrases make absolutely no sense to him. A perfect example happened on one of the 72 snow days we had this winter (it sure felt like 72 snow days). It was one of those days where it was icy and the roads were hazardous just in time for the morning commute and the weather men predicted a worse scenario than what actually occurred. By noon, the snow and ice had melted and the sun was shining. As Ryan and I headed out to the grocery store he said, "I can't believe we didn't have school today." "Tell me about it.", I replied. Without missing a beat Ryan said, "I just did tell you about it. Didn't you hear me? Maybe you are going deaf." Yes, literally, Ryan did just "tell me about it", but, figuratively, he wasn't going to "tell me about it" again. I smiled the entire way to the grocery store, but, still wondered how much weird English language Ryan misses in social conversations. It makes perfect sense that Ryan chooses to stay quiet, to avoid social settings when the words he is trying to understand are so freaking weird. Ryan and his speech therapist worked on idioms once upon a time and during that time, I bought Ryan this Dictionary of Idioms book thinking Ryan could memorize them and not feel weird about our weird language. Thinking that if Ryan just read the book, memorized some of the more common idioms, he might not feel like his peers are speaking a foreign language. Ryan never cracked the cover because AWEnestly, he could care less about idioms. Idioms don't make sense, to a literal thinker. Idioms are illogical and so why would Ryan waste "a penny for his thoughts" on something so ridiculous. Ryan has learned to recognize some idioms, but, chances are, no matter how much I am rushing him in the morning, screaming for him to put his shoes on and brush his teeth, Ryan will never tell me to "hold my horses" because clearly I don't have any horses and even if I did, a horse would be much too big for me to "hold". As Ryan's mom, I try to speak in a way Ryan understands, but, since idioms, metaphors, and slang have been a part of my repertoire for so long, it's "hard to teach an old dog new tricks". So on particularly tough days, days when autism has a stronger hold on my boy's brain and days when my 40 something hormones have a stronger hold on my brain, and I'm trying to get through to Ryan by telling him he's "making a mountain out of a mole hill" and that by yelling at me is only "adding fuel to the fire" and that if he keeps "getting under my skin", I'm going to "hit the roof" and he most assuredly is going to "be in the doghouse", would do nothing to resolve the situation. In fact, Ryan would look at me like I was speaking Hindi or some other language he does not understand. My dear old friend, Clueless would be sitting on the side of Ryan's bed "in stitches" at my stupidity. If Ryan cared enough to interpret my idiotic idioms, he would assure me that he cannot make a mountain out of a molehill because he does not have heavy equipment machines at his disposal and even if he did, he is not allowed to operate them. Ryan would also point out to me that the gas cans are in the garage and that on the side of the gas cans it reads, "Danger Extremely flammable" so even if there were a fire in his bedroom, Ryan would never add fuel to the fire, instead he would flee the house and dial 911 as he has been instructed to do. Ryan would logically point out that he is entirely too big to "get under my skin" and that getting under anyone's skin would require cutting their skin and making them bleed and since Ryan is not a fan of blood, he would choose to stay outside of my skin rather than under it. After discussing the dangers of climbing on top of the roof in order to "hit the roof" Ryan would then remind me that dog houses are for dogs, not people, and that our dog doesn't even have a doghouse so obviously there is no way Ryan could be "in the doghouse". See, now who makes more sense, Ryan or me? Concrete, literal thinkers have no time or room in their black and white brain for idioms and AWEnestly, who can blame them? When you stop and think about them literally, they make no more sense than someone speaking a foreign language you have never heard before. Clearly, the guy at Game Stop will not take my arm and my leg instead of cold hard cash for the latest Mario game even though I have assured Ryan, that the game "costs an arm and a leg". And although you may have reached your limit with all the crap that happened in one day, and you can't take one more bad thing happening, a piece of straw will not break a camel's back. Camel's are very strong animals, as are their backs, which is evidenced by people riding on camel's backs across the Sahara Desert. And even though you spend hundreds of dollars on your new dress, shoes, and accessories in order to look hawt at your upcoming class reunion for that old flame of yours, no matter how much your shoes cost or how many lines that Botox erased, that old boyfriend will not "eat his heart out", unless of course your high school boyfriend's name was Hannibal Lecter. My bestie from India has been in this country for 12 years, ironically, Ryan has been in this world and this country (only) for 12 years too. My girlfriend and Ryan couldn't be more different socially. Her social circle and friends on Facebook are in the hundreds, Ryan's circle is in the single digits with no Facebook account, however, when it comes to understanding and interpreting the weirdness of the English language, they have both had their misunderstandings, confusions and funny moments. The English language may not be hard to learn, but, it can be weird in it's interpretations with all it's metaphors, slang, and idioms. Misunderstandings, misinterpretations and getting the wrong idea happens frequently which we now understand doesn't make the speaker "weird", just the language. Just like Ryan may look at you creepily if you tell him your going to "lose your shirt" at the casino, you may look at my Indian British influenced girlfriend creepily if after a day of shopping with her, she asks you to pop your "dickie". Regardless of how much money you may lose at the casino, you will not walk out of the casino shirtless and my friend who wants you to pop your "dickie" (which may sound horribly forward, after only one shopping date), does not want you to pull your pants down, all she wants you to do is open the "trunk" of your car where her shopping treasures are located. The weirdness of language can lead to weird, but, funny moments, that leave you feeling like "a fish out of water" or make you want to "bite your tongue". When I hear my friend speaking Hindi, which is "all Greek to me", I recognize that getting Ryan to speak in idioms or metaphors is like asking him to speak a foreign language and that I'm "barking up the wrong tree", so I have stopped "beating a dead horse" and put the Dictionary of Idioms away. Ryan may not memorize idioms, metaphors and slang, in order to enhance his pragmatic speech, but, as with so many things in the world of autism, I have learned, that there is "more than one way to skin a cat" so, even though Ryan may be a "tough nut to crack", I keep in mind that "Rome was not built in a day" and when it comes to helping my son succeed, I will never, ever "throw in the towel". Milestone birthdays. Some we can't wait for, counting down the days on a calendar until the big day finally arrives, and some we hide from, lie about, and completely ignore. Remember in college, hating all your friends who had fall birthdays and went right from their Poly Sci class to happy hour while you went back to your apartment and watched Seinfeld instead? Wondering why your parents clearly preferred "alone time" in August than in January. And to add just a little salt from your under age drinking tequila shot to your, "I wish I would have born in October" wound, turning 21 in May, a week after summer breaks starts, is one of the greatest injustices of the college world. I specifically remember the May that I turned 21. After I gave my parents a stern lecture on giving birth to, not one, but, three girls in the month of May and how their insensitivity gravely impacted their daughters' 21st birthday celebrations, I recall wondering, what was left? I mean, isn't 21 the pinnacle of milestone birthdays? Those happily celebrated milestone birthdays belong to someone else now, since I have decided not to have any more birthdays (I will still accept a cake or Zappos gift card on May 19th, but, just because you love me, nothing else). A very, very, very long time ago, I couldn't wait to turn 13 and officially become a teenager. Then at 16 I could finally drive a car, no more mom taxi needed. At, 18, "woohoo I'm finally an adult" and I can vote (AWEnestly, voting wasn't nearly as exciting as getting into R rated movies). Then the pinnacle of all milestone birthdays...21, I'm officially legal. Not that I would have ever dreamed of driving a car, sneaking into an R rated movie, or drinking a beer before those milestone birthdays allowed me to do so....ohhhh noooo, not me. All those milestones, all those celebrations, all those moments to look forward to, then 21 hit, and I went, "ok, now what?". Whether it was 13, 16, 18, or 21, once you got "bigger" you realized in many ways, being "little" wasn't so bad after all. Getting bigger means being more responsible and hearing your parents nag you about, "Well, now that you are bigger, we expect you to act your age, be responsible, hold yourself accountable, blah, blah, blah." Ultimately, the bigger your get, the more that is expected from you. What a drag. If you only knew how good you had it when your were little. For example, turning 16, and being able to drive gives a teenager a sense of freedom they never had before, but, the downside to that freedom comes the lectures and the nagging from good ole' mom and dad. Seat belt safety, drinking and driving (even though of course at 16 they would never touch a drop of alcohol), texting while driving (not a problem in my day) lectures occur daily and each lecture is followed with the grave warning that failing to heed any of these naggings could catastrophically end your life or someone else's life. Jeez, 15 sure was a lot less lecturery (new word for teenagers only) and a lot less "I could die at any moment behind the wheel" scary. Then there is the magical milestone of turning 18 which makes you "bigger", and an official adult, but, with adulthood comes the realization that one major screw up means goodbye "juvy", hello Big House. And although turning 21 brings a whole new meaning to the word bigger...bigger parties, bigger clubs, bigger dating pool, 21 also means that the fun and partying college days are quickly coming to a close and the "real world" is slowly looming over the horizon. Mom and dad might still lecture and nag, but, now you own the laundry, the bills and the cooking. Big ain't all it's cracked up to be. I don't know when the change comes, when we realize life was easier when we weren't so big. Was it after our first hideous hangover from one too many tequila shots? Was it our first real job when it finally dawned on us that there were no more summer's "off"? Was it after life's first big disappointment...a job that didn't happen....a relationship that didn't happen....a dream that didn't happen? Regardless of when or why, at some point in time, we have all thought, "Wow, if I could just go back in time so I could slap my younger self, and realize how good I had it...before I got big." Although I wouldn't want to go back permanently, (especially not to middle school), I would love a quick trip every now and then, to be able to fully appreciate the comfort, the security and the ease of being little. I mean, if Tom Hanks got to do it, why shouldn't I? The movie that turned Tom Hanks into an official movie star, also turned him from a child to a man in the movie Big. Just like the real world (dripping sarcasm), when being big got too hard, conveniently, Hanks, got to be little again. In the movie Big, Hanks played Josh Baskin, a boy who becomes fed up with the injustices of childhood and longs to become big. Josh finds a magic Zoltar fortune telling machine and with the pull of a lever, wishes to be big, and overnight, Zoltar grants Josh his wish. The next morning, Josh was big...on the outside. He was over 6 feet tall, he had facial hair, and his voice was deeper, but, on the inside, Josh was still 13 trying to navigate a very grown up world, a world he didn't understand. Josh couldn't tell his parents what happened, so, he was on his own in the big world, just like he wanted...or so he thought. It didn't take Josh long to realize that being big, isn't all it's cracked up to be, so he desperately tries to find the magic Zoltar machine in order to become little again. Oh, if it were that easy Zoltar. Here is a scene from the movie Big, where it is very apparent, that Josh is not so big on the inside... I swear, some days I think Ryan must have pulled the lever on the Zoltar machine, because in the blink of an eye, he too has become big. As I listen to Ryan, scripting in his bedroom with his best British accent, his voice deepening each and every day, I sometimes freak out, ready to dial 911 and report that some British man has broken into my house and is playing Minecraft in my son's bedroom. As I approach Ryan's bedroom, baseball bat in hand ready to take on this would be British intruder, I don't find a stranger, I only find my little boy who has gotten big with just a pull of the Zoltar lever. How did he grow up so fast? Where did my little boy go? What will his future hold? Being big, certainly has it's advantages. The horrors of potty training are long behind us (thank you God), as are the battles over haircuts and sandals, but, new struggles, new quirks, have taken their place. Some are bigger, some are not, but, just because Ryan is bigger, and in many ways "better" does not mean that autism was left behind in the toddler years. As we are still navigating the waters of adolescents and quickly approaching the waves of teens, I worry about the tsunami of adulthood. Getting big is hard. Getting big on the outside, yet staying little, naive, and confused on the inside, is even harder. Just ask Josh Baskin. In Big he recognized that his wish to be big, was nothing but, a big mistake. Still a child inside, Josh didn't understand this new world filled with grown ups and grown up problems. Although the troubles that plagued Josh when he was little went away, Josh discovered that being big, had troubles of it's own. Similarly, a child with an ASD may have different struggles when they become an adult, but, getting bigger doesn't mean autism magically disappears. Some difficulties get littler, some difficulties get bigger, and some remain the same. With new expectations, new adult rules, and new adult consequences, it's easy to see why some of these adults would like to go back to being little. Unlike the movies though, children living with an ASD are not able to search out a Zoltar machine, pull a lever and wish to be little again. Once big, always big, yet, we hear so little about what happens when children with an ASD become big. The faces of Autism Awareness belong to those who are little. During the month of April, when Autism Awareness is celebrated, most of the faces you will see belong to young children and the occasional teenagers. Rarely, will you see a photo of a grown man or woman living with autism. A picture of a grown man is not as appealing to the hearts of strangers as a photo of little boy with big blue eyes. When you see the little boy and his beautiful, innocent blue eyes, you want to "help" him, you want to "save" him, you want to "accept' him, you want people to be "aware" of him, but, the grown man, you quickly "disregard" him, even though he once was the boy with the big, blue eyes. After all, this adult, is big, he is a grown up. He should be able to have a handle on his autism by now with all the years of therapy and support he had as a child, right? Wrong. Autism does not magically go away at the age of 18 or 21. The problems, the struggles may become different, but, for some, getting big is the most difficult challenge of all. The most recent study conducted by the Centers for Disease Control, lists that 1 in 68 children or 1 in 42 boys and 1 in 189 girls now have an Autism Spectrum Disorder. These children, these boys, these girls, will get big and when they do, there is very little support for them. According to a study completed by the Pennsylvania Autism Services Bureau, "If your child is 3 now, we estimate that there will be 54,486 adults with autism in PA by the time he is 21" and "As the person gets older, the availability of services decreases". There are so few services available for adults with an ASD. The waiting lists for adult services may run hundreds of people deep and many years of waiting. Once that magical milestone age of 21 hits, the only support many of these "children" have, are from their parents and when these parents are helping their big kid make it in the big world, many spend a great deal of time worrying about what will happen to their big kid once they are gone. There is no magic Zoltar machine to change these adults from big to little, when supports may not have been in abundance, but, at least support in the educational system was available. Our state and federal government has to be the Zoltar for these kids who are now big. Pulling a lever and making a wish isn't going to cut it. Programs, services and funding needs to begin now. If waiting lists for adult services are in the hundreds when the rates of an ASD diagnosis for these adults was 1 in 330, then how long will the wait be in twenty years? If getting services for adults living with an ASD were as easy as pulling a lever on a Zoltar machine on a Jersey shore boardwalk, there would be a line across the entire state of New Jersey waiting to pull that lever. It's not that easy folks. For most of us, when we turned 21, our biggest concern was which bar had the cheapest pitchers of beer and no cover charge. Sure, maybe at 21, we had no idea what we wanted to be when we grew up, but, regardless of our path, we knew, that like it or not, one day we would be out on our own. Some of us, to the dismay of our parents (love you Mom and Dad) took a little longer than others. For parents loving a grown child with an ASD, it's not always that simple. Some big kids with an ASD are able to go to college, find a job and live on their own with little support, but, many, are not and that is why it is so important to change our perspective, change our view, and change what and who we see, when we hear the word autism. Just keep in mind every gorgeous little boy you see promoting autism awareness this month will one day have facial hair, a deep voice, and possibly tower over you. Do your part in raising autism awareness this month and every month, by remembering that when you see a face like this... ....that one day that face will look more like this.... These faces, big or little, need your awareness, your advocacy, your understanding, but, mostly your acceptance. We have come a long way in advocating for children with an ASD, but, we must not forget the faces that we don't see. For every parent loving a child, big or little, with an ASD, our hope is that one day there will not be a need for a magic Zoltar machine to grant wishes, because with the right support, the right services, these little kids, who will one day become big, will be able to make their own wishes come true.
These big kids with an ASD may not worry about which bar to hit at exactly 12:00AM on their 21st birthday the way you did, but, it is still a day that each child and their family should be able to celebrate and not worry, "Now what?". Chances are, the day after their 21st birthday, these big kids...these adults living with an ASD...who are smarter than most of us neurotypicals, won't wake up wondering what crawled in their mouth and died, who the he** put a vice on their head while they were sleeping and where they can find the closest Zoltar machine to make them 6 years old again. For most of us, bigger doesn't mean smarter. When I was a kid, I used to occasionally put aside the Lucky Charms and opt for a bowl of Wheaties because just like I believed Lucky Charms were "magically delicious", I also believed that Wheaties was "The Breakfast of Champions". Who doesn't want to trade in some marshmallows and a leprechaun in order to be a champion? Back in my younger days, Misty May-Treanor was not on the front of the Wheaties Box because quite frankly, Misty wasn't even born yet (ouch). No, back in the old days, Bruce Jenner held the coveted Wheaties Box Champion Title. Oh Bruce, Bruce, Bruce, times they have a-changed. The 1976 decathlon Gold Medalist Bruce Jenner, was most certainly a champion and worthy of a Wheaties box cover, but, the Bruce Jenner of today, well, suffice it to say, Wheaties may want their box back. Poor Bruce, he got so caught up with those Kardashians and all that plastic surgery....bad plastic surgery, that I wonder if General Mills has bought all the Bruce Jenner Wheaties off of eBay to cover their champion idolizing tracks. For some reason, when I hear the word "champion", I almost automatically think champion (noun), and picture an athlete (not Bruce Jenner...sorry Bruce) on a podium being given a trophy or medal. According to Webster, the definition of THAT champion is "someone or something that has won a contest or competition especially in sports." Obviously, in 1976, Bruce deserved to be on The Breakfast of Champions box, after all, he was an Olympic Gold Medalist. The definition of the verb champion, is never on the front of the box, heck this type of champion isn't even on the side or the back of the box, which incidentally is where champion's photos were placed prior to 1958 (A little Wheaties trivia that could one day make you a champion (noun) on Jeopardy. You're welcome). Champion (verb) is "a person who fights or argues for a cause on behalf of someone else". This type of champion (verb) may be outspoken, may fight, argue and advocate for someone they believe in, but, these champions never make it on the front of the Wheaties box, preferring to allow the champion (noun) they are championing, to remain front and center. In honor of Autism Awareness Month, today's blog is for all the champions who don't make it to the front of the Wheaties box, but, who are no less a champion than an Olympic Gold Medalist. These champions of children and adults living with an Autism Spectrum Disorder, are mothers, fathers, brothers, sisters, grandparents, teachers, and therapists. They educate, advocate, and support the belief of "different, not less". Because of their love, because of their commitment, because of their desire to see their child, sibling, grandchild, or student "win", these champions (verb) have helped create champions (noun). Just like an Olympic Gold Medalist, these champions work tirelessly in order to make sure their son or daughter stands on that podium. They "fight or argue on behalf" of their champion who may one day be on the front of the Wheaties box. They are the champion (verb)...the fighter...the coach...and the voice...that helps create a champion (noun). It would be delightful if someday Wheaties would have an autism champion (verb) on the front of their box, but, chances are, that won't happen. So, in order to make up for General Mills' lapse in judgement, I want to make sure the champions championing autism awareness are visible today. These fighters, these tigers, are not roaring because they want to be difficult, these champions (verb) are roaring because they need to be heard since they are "fighting on behalf of someone else"...their child. If they don't roar, then who will? Until I began championing my champion, I was scared, beaten down by The A Word and my cohorts, Denial and Clueless, and I had no idea what I was doing. I worried more about other people's impressions than what was right for my son. Now I will fight, champion, advocate and roar when I need to, because in order for my son to become a champion (noun), he needs a champion (verb). Most days I don't have to tie on my boxing gloves. Most days people are aware that what every person, with or without an ASD, wants is ACCEPTANCE. The month of April is about Autism Awareness and Autism Acceptance. So, today I am championing for all the champions (verb) loving a child with an ASD. Here are a few examples of moments that are front of the Wheaties box worthy: For those folks in the mall who may be out looking for spring sandals for your child, we want you to know that the meltdown in the shoe store is not meant to disrupt your shopping experience or make you feel uncomfortable, but, the lights, the noise and the smell of the shoe store for our child is too much. Our kids also wear shoes and we champions have to shop for shoes and put them on our kids feet. For the school administrators who are tired of words like FAPE (Free Appropriate Public Education), IDEA (Individuals with Disabilities Education Act), and IEP (Individualized Education Plan), and who often believe that autism is "the flavor of the month", we are not trying to make your job harder. Our kids need an education. We champions make sure they get it. To the insurance companies (whom AWEnestly, I have NO sympathy for), who don't understand that a trip to the dentist is like a trip to Hades for our kids, we are not trying to harass you with our repeated phone calls or get your fired when we ask to speak to your supervisor. We need the right code for the right surgical center so our child can get a cavity filled without fire and brimstone raining down on them in the dental chair. Our kids need good dental hygiene, and we champions will walk through fire to ensure you pay for some of it (then curse all insurance companies to Hades when you fail to pay a cent). We are the voice, the fighter, the educator, and the tiger. We champion for our kids whose communication struggles makes it easier for them to remain silent. We champion for our kids who hate the feel of leather boxing gloves. We champion for our kids who cringe at the sound of a deafening roar. We will continue to argue, to fight, to walk through fire in order to champion our champions, and even though you may never see our face on the front of the Wheaties box, I promise you will always hear us ROAR. |
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