So, I had to run to Target (again) this weekend, which was probably my third trip there this week. I swear, I feel like Norm from Cheers when I walk in to the place where everybody knows my name. The employees all greet me with a "What could she possibly need now?" smile and treat me like Norm, minus the beer. Suffice it to say, I'm a frequent Target shopper, so a Sunday morning trip to the store that has everything, was not really a big deal, except, Ryan wanted to go with me...on a Sunday....the day that comes after Saturday and since Saturdays are Ryan's "day off", I was torn with what to do. When some folks take a day off, they may spend it doing chores around the house, or sitting poolside with friends, or perhaps taking a little holiday with family, not Ryan. Ryan's idea of a "day off" each and every Saturday is no homework, no reading, no piano practice, no changing clothes, no brushing hair and unfortunately, no shower. This use to be no big deal, until puberty hit and with the rush of hormones, came the rush of greasy hair, oily skin and the stench of teenage boy. This stench tends to linger when said boy wears the same clothes for 36 hours. The weekends are a bit sketchy around here especially if a Target trip is planned following the "day off". I know what you are thinking, if Ryan wants to go to Target on a Sunday then he needs to shower and change his clothes before I take him out in public right? Wrong. Showering Sunday morning or afternoon prior to a trip to Target, which ironically was for soap and laundry detergent, would not hold off the boy stench until Monday after school and asking Ryan to shower and change his clothes Sunday morning and Sunday night....twice in one day is AWEnestly the funniest thing I have ever heard. Ever. I promise you, Ryan will never be a believer in the old adage "clothes make the man". Mark Twain is the chap we owe the "Clothes make the man" quote, but, did you know the entire quote is, "Clothes make the man. Naked people have little to no influence on society."? Ha! That's the second funniest thing I have ever heard. Poor Mark would have to revamp the second half of his quote if he spent ten minutes in front of a television or computer screen and saw our nearly naked influential society now. Good ole Mark Twain, whose real name was Samuel Langhorne Clemens (you're welcome), believed that people will judge you based on the way you dress, and I'm afraid that part of his 100 plus year belief still holds true today. I'm sure my Target employee friends were judging Ryan's rumpled clothes and uncombed hair on Sunday, but, I bet they were grateful for worn out fleece pants versus no pants at all. Time for some naked AWEnesty my friends. Prior to having a child with an ASD, a so called, "special needs child" (Isn't every child's needs "special"?), when I would see kids with different abilities looking disheveled with unkempt hair, clothes that didn't match, weren't in season, or in style, or in the proper size, I would think to myself, "Even though their child may have special needs, why in the world do the parents dress them like they do?". Clueless, who stood right next to me, with her impeccably dressed kids, agreed wholeheartedly. Oh how naive and ignorant I was then, succumbing to Mark Twain's belief that clothes, do indeed, make the man. It's difficult enough when you have a neurotypical child and you want to dress them just "so", and your idea of "so" and their idea of "so" is not even close. Well, throw in a dash of autism, and it kind of makes you want to resurrect Mark Twain so you can kick him in the head. I'm betting Mark Twain never had to dress a child with an ASD, so he didn't have to take into account the way clothes feel, sound or even smell (yes, smell). Many kids with an ASD are so sensitive to how things feel that they would prefer an old cotton pajama top, worn 24/7, that is so small it cuts off the circulation at their armpits, rather than wear a fits just right, hasn't been washed 85 times, new shirt. Face it, if you didn't worry about people like Mark Twain judging you, you'd wear your cozy fleece jammies to the the office, to the grocery store, and to the symphony. Fleece jammies are much more comfortable than a stiff, pressed shirt, wedgie inducing tights, or a scratchy wool sweater, but, many of us believe Mark Twain, so we save our comfy clothes for curling up on the couch at home alone...where no one will see us or judge us. Cleanliness helps make the man too, and any mother of a pre-teen or teenage boy will tell you, showers don't rank very high on the "Things I Need To Do Today" chart. For a kid who feels the water is too "stingy", the shampoo too "flowery" and the towel too "scratchy", showers rank even lower on the chart, thus the creation of Shower Free, Day Off, Saturday. Ever since Ryan was little, he hated rubbing a towel over his skin to dry off. There were moans, groans, and accusations of me tearing his skin off while just trying to keep him from dripping all over the place. Heaven help me, and my hearing, if I accidentally scraped his skin with the tag on the towel. It's truly a miracle this boy was ever clean. Just like many things that Ryan has struggled with, he found his own way to cope with the horror of towel drying after a shower....he air drys. Yep, he lays on the floor in a heap with a towel draped over him waiting for his skin to be dry enough to throw on shorts that are too small and a soft fleece Mario blanket that he wears like a shawl. Mark Twain would most certainly tsk, tsk, tsk over such an ensemble. This new found drying method certainly increases shower time two fold, but, the boy is clean, the boy is dressed (sort of), and the boy is happy. With Ryan's reluctance to have anything touch his head, using a hair dryer to dry his hair is not his preference. This means, most nights, Ryan goes to bed with a wet head, so you can only imagine what his hair looks like upon wakening. Although I try to "fix it" by wrapping a completely dry, take it right out of the drawer, dish towel around his shoulders, then wetting one of two hairbrushes that are acceptable for his delicate head, and pushing gently (never, ever pulling) down on the numerous horns that have sprouted on his head while he was sleeping, to the reprimands of "you are soaking me" and "stop ripping my hair out of my skull". Regardless of my efforts, most days, Ryan still runs to the bus with unruly, dripping wet hair. I worry about how it looks for a second, but, as he runs across the street in a coat two sizes too small and yells, "I love you so much Mommy", the worry quickly fades away. While I watch the bus pull away, I can still see the horns sticking up on Ryan's head and his wrists sticking out of his coat sleeves, as he happily waves goodbye, and I am reminded of that mother I use to be. The mother who once believed that clothes make the man. I smile gratefully as I wave goodbye to my son. Grateful that it took a sensitive little boy to prove how wrong Mark Twain and I both were. So trust me, when you see a child with a different ability looking a little unkempt, with uncombed hair and clothes that have seen better days, the mother knows and the mother cares. She knows what people are thinking because chances are, she once thought it herself, once when she was a Mark Twain believer. Now, the mother sees past the hair, past the clothes, and past the juice mustache because the mother has seen the progress where once she was told would be none, she has seen the obstacles that were so difficult to overcome, she has seen the achievements that even she once doubted would ever occur. This mother, that holds the hand and the heart of this less than tidy child, and who sees past appearances, knows something Mark Twain did not. Clothes may make the man, but, judging someone by what they wear and how they look, will keep you from discovering the beautiful soul who lies beneath those clothes, regardless if those clothes are clean, dirty, old or new. Now that Ryan is older, he is beginning to care more about his appearance....if his hair is sticking up, if he has a grape juice mustache and if his clothes feel and fit right...just not on Saturdays, or Sundays for that matter. Ryan understands that there are "make the man" school clothes and comfy home clothes. The school clothes are removed as soon as Ryan's backpack hits the foyer floor and he races to his bedroom to put on his too small, comfy clothes and quickly discards his clothes that make the man into his hamper. Ryan has brand new soft Hollister sweatpants that may make the man, but, he still prefers his one size too small, grey fleece pants that make the boy, the boy who cares little about others' judgement and more about the grade and comfort of the cotton in his clothes. Mark Twain may not have approved of Ryan's Target appearance last weekend, but for those who don't know what goes on behind the clothes, for those who don't know who it is that lies behind the clothes, it's easy to judge based on a disheveled appearance alone. Especially if the person passing judgement doesn't know that each and every Saturday is a very deserving, very necessary, and sometimes very stinky, day off.
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We all know that one year equals 365 days. This is because in the system of solar calendars, the length of day is determined by the approximate amount of time it takes Earth to rotate once on its axis (about 24 hours). The length of a year is measured by the time it takes Earth to rotate around the sun (365 days, 5 hours, 48 minutes and 46 seconds). I'm sure you all knew that at some point in time. This information, which, basically, gives you the answer to your exasperated question of why there aren't more hours in the day, can be found somewhere in the deep, dark recesses of your mind where algebraic equations and elements from the Periodic Table still linger. You may not be able to regurgitate this information so fluidly, because AWEnestly, it doesn't really matter why the days aren't long enough, you begrudgingly accept that it is....what it is. Now, Ryan, he has this info at the forefront of his mind. He doesn't have to dig as deep as the rest of us and for a mother who has very few firing brain cells left, I am so grateful for Ryan's AWEsome brain. I bet, just like me, off the top of your head, you didn't know that 365 days in a year equals 8,760 hours in a year which equals 525,600 minutes in a year which equals 31,556,926 seconds in a year. And of those 8,760 hours in a year, approximately 2,920 of those hours we humans spend snoozing away. That leaves about 5,840 hours spent awake. And in the past 5,840 hours, this mom, this blogger, this AWEtism advocate has been working very, very hard to walk the walk, since I spent 525,600 minutes talking the talk (I talk in my sleep, just ask Dan). You know the old saying, "If you're gonna talk the talk, you better walk, the walk", a sort of "practice what you preach" ideology. If you are gonna run your mouth, then you better back up whatever it is you are spouting. I swear, I can actually remember spouting the old "walk the walk" idiom as a senior in high school, to some lowly freshman. This freshman was talking smack about me and some of my friends, so, having to follow high school protocol, I needed to confront this meager freshman about her inability to conform to the well known high school hierarchy. Suffice it to say, this freshman decided to talk the talk and walk the walk and a good old fashion girl fight ensued. Yep, this not afraid of a bunch of senior high school girls freshman, decided to back up her talk with a few punches which resulted in both of us being suspended from school for three days, and a new nickname for little, scrappy, old me..."Rocky" (my friends weren't very creative). However, I don't recall my Rocky namesake having to shamefully hobble down the hallway to retrieve his red ballet flat that went sailing through the air during the scuffle after one of his fights. Yep, if you are going to talk the talk, then you damn well better back that talk up by having your brain, your heart, and your feet, do just what your mouth, or in my case, my typing fingers, said you would do. I have been officially talking the talk, or should I say, blogging the blog, for exactly 365 days today. This is my 68th blog post since I first introduced The AWEnesty of Autism blog, 365 days ago. Wow, that's a lot of talk. With all this talk, I have been given a gift and a challenge. The gift comes in the form of you, my readers. With your AWEsome support and your willingness to learn, understand and accept, "different, not less", you inspire me to keep blogging, keep advocating and keep educating. Your compassion to share The AWEnesty of Autism with others who either "get it" or don't, has lead to greater awareness as well as numerous opportunities to share my belief of "different, not less" in my attempt to raise even more awareness and to share my Ryan...my joy....my heart as he continues to put the AWE in AWEtism. The challenge of all this talk, has been for me to "walk the walk" and not just provide you all with lip service and story telling. I promised to be AWEnest and part of that AWEnesty comes in the form of practicing what I preach. Putting my feelings to words and knowing people are reading those words has made me become a better advocate, teacher, and most importantly, a better mother. I owe that to all of you. When I talk the talk and tell you that this somewhat unstable (oh, the truth in those words) volcano continues to work hard at becoming dormant, I try to walk the walk by not blowing my top over something as little as a forgotten homework assignment. When Ryan says he needs ideas for a writing assignment, and my examples aren't exactly what Ryan is looking for, and, two hours later not a mark is made on his paper, I find myself counting to ten....like I told you I would, instead of going up in flames. Your comments, your support, your Facebook Likes, ring loudly in my almost ready to blow volcanic ears. It's like Big Brother is watching and I don't want to get caught being this phony...this fake blogger who is just blowing smoke (pun intended). I'm trying to walk the walk, for Ryan, for me, and for you. When I talk the talk and tell you I am absolutely, without question, done with Denial and Clueless and then those two persistent wenches come knocking on my door, I try to remember my words, I try to practice what I preach and slam the door in both their faces. Some days, I admit, it's easier said than done...easier to talk the talk than to walk the walk. When Ryan tells me his lack of friends doesn't make him sad, Denial still tries to convince me that a life without friends is no life at all. Valuing friends in my life, as much as I value air in my lungs, makes Denial's words feel like a knife shoved deep in my saddened heart. In those moments, when my friendless son's words break my heart, my own words that I spouted to you ring in my head. The talk I used to convince you that the F Word, the Friend Word, is only a vulgar word when Denial whispers it in my ear. So, I walk the walk, by saying that F word (sadly, not the other one) less frequently as this word friend, that is as important as air to me, feels very different in Ryan's lungs. When I talk the talk about "different, not less", and encourage you to accept this by stepping outside your box and trying to understand and connect with "different", I walk the walk by going out of my way to also see "different" as just different, regardless of the extreme variances of what "different" means. This may come in the form of a sympathetic smile to a harried mother trying to hold it together while her "different" child has a full blown meltdown in the middle of Toys r Us. I have also walked the walk by attempting to connect more frequently with kids who may seem "different" by engaging with them, talking with them, and "seeing" them. I recognize that in my attempt, I may be ignored, rebuffed, or yelled at, but, by trying to connect, in that moment, that kid may no longer feel invisible. When I talk the talk about Ryan's differences, being just that, differences...nothing less....nothing bad, and how these differences may seem odd or weird to most, I try to walk the walk by not cringing when Ryan makes goofy facial grimaces and odd noises the minute he walks through the door after school. After all, how can I expect you not to think, "Whoa, what the heck is that about?!" if I'm thinking the exact same thing? So, I walk the walk by reminding myself that Ryan keeps those noises and faces at bay most of the day while at school, so when he is home, where he is safe, he should have at it. Your support, your acceptance, your cheerleading, has helped me walk the walk by planting a big, wet kiss on Ryan's cheek in between facial grimaces without so much as the slightest cringe (by me, that is, Ryan quickly cringes and wipes the wet kiss off). When I talk the talk and tell you I will be AWEnest and share my real, raw thoughts and feelings, I have to walk the walk by being AWEnest with myself too. On days where I tell myself that I'm going to be more patient, more understanding, but, Ryan's overloaded sensory system and my overloaded hormones shoot that plan all to he**, I walk the walk by practicing what I preach to all of you and remind myself that all parents, whether or not they are loving a child with an ASD, have days where they need a time out (and a big, big glass of wine). And just like we forgive our children when they make mistakes, and just like I tell you to forgive yourselves when you are less than perfect, I have to walk the walk by forgiving myself too, and eventually letting myself out of time out (and putting down the wine bottle, I mean, wine glass). Your appreciation and encouragement of my AWEnesty, the good, the bad, the ugly, has allowed me to be more AWEnest with myself. I am so grateful for these past 365 days...these past 8,760 hours. The AWEnesty of Autism has gone beyond my wildest dreams and I owe that to all of you, so please accept my sincere gratitude. I have been deeply humbled by your comments, your encouragement and your kind words of support. Whether you are loving a child with AWEtism and feel like I am sharing "our story", or if you have been reading the blog just to try and understand, "different, not less", or if you are a family member or a friend and feel like you have to read each post in case I ask you about it and you struggle with faking it, I thank you. YOU have made a difference. Although I have tried to raise AWEtism Awareness over these past 8,760 hours, (well, technically, it's more like 5,840...I love sleeping) ironically, I have become more aware. More aware of my own faults, more aware of my own actions, more aware of my own "talk", more aware of my own "walk", which has inevitably lead me to become more aware of my own beautiful, AWEsome son. How can we ever thank you enough? Some days, walking the walk is tough, and I stumble and stagger to the point I look like I'm hitting the wine bottle again, but, if I'm going to talk the talk, then I need to walk the walk, regardless of how difficult it may be. So thank you for reading my talk, for encouraging me to keep talking and keep walking. Thank you for your support, your loyalty and your compassion. I hope that these next 365 days lead to more awareness for my readers and for me. I hope we all continue to watch Ryan grow and thrive and celebrate his accomplishments and pick him up and encourage him when he falls. Ryan is just one boy, 1 out of 54 boys and 1 out of 252 girls, whose story is being told. Thank you for taking the time to get to know him and kids like him. One year ago, I asked Ryan's permission to start The AWEnesty of Autism and although, he gave his permission, Ryan was disappointed to know the blog would not make him "rich" or "famous". Even though Ryan may not find his fame and fortune through The AWEnesty of Autism, I hope that Ryan recognizes that although he has been a silent partner and not shared any "talk", the "walk" he is walking is more AWE-inspiring, more AWEnest and more AWEsome than this blogger could ever put into words. When words fail, actions can prevail and according to Ryan's brain (which I never doubt in the areas of math, science and music), I only have 8,760 hours until the Earth makes another full rotation around the sun and we are smack dab in the middle of January 24th, 2015. We still have a long way to go friends, and with your continued support, I will keep walking the walk, so even more folks understand, accept and believe the talk of "different, not less". Have you ever had one of those days where you just wish you were invisible? A day where everyone and everything is coming at you all at once and the idea of "disappearing" so no one can nag, whine and demand your undivided attention is so appealing, that you long for the "unexplained accident" in the lab that occurs in almost every Invisible Man story. It's funny, it's always an Invisible Man. A television network made a pilot for an Invisible Woman show a few years back, but, audiences failed to relate, not because women don't belong in science labs, but, because we all know households would shut down if Mom really became invisible. In almost every Invisible Man story ever told, the Invisible Man is portrayed as a villain who uses his invisibility power for evil. Whether it was H.G. Wells Invisible Man in 1897, or Batman's nemesis in DC Comics in 2006, or even Jerry, the Invisible Man (ok, fine, the Invisible MOUSE) in a 1947 Tom and Jerry episode, the desire to wreak havoc while invisible is a temptation just too hard to resist. I promise that if someone has an Invisibility Serum, I will not turn to a life of crime. I just want to curl up with my iPad and a bag (the big 2lb bag...don't judge) of M&M's to watch a few episode of Downton Abbey or Girls without hearing, "Mom, I need you." for just a couple hours. Assuming of course the iPad and bag of M&M's could disappear too, otherwise, what's the point? The one thing most of the Invisible Man stories have in common is that they are always searching for the antidote in order to be seen again. Maybe being invisible, even though you can finally have the upper hand on that tomcat that has tortured you for years, isn't all it's cracked up to be. Even though most of these men felt "invisible" before they swallowed the invisibility serum, surrounded by those who did not "see" them, maybe being permanently invisible felt too strange. I wonder what made them want to "disappear" permanently in the first place? Was it out of frustration due to the numerous occasions when they were still visible, but nobody could see them? Did having people constantly talking about them or around them, as if they were invisible, lead to such aggravation that they felt the need to seek revenge ? Did this frustration lead the various Invisible Men to want to mix up a few chemicals in the lab so they could disappear for good? Although Ryan would never dream of leading a life of crime nor would he just gulp down some serum made in a science lab (unless of course it tasted like root beer), I often wonder if Ryan feels invisible because sadly, some people don't "see" him. As my little Invisible Man, I worry whether or not he longs for the antidote to be seen, or if he prefers to remain hidden in the shadows. Just last week I witnessed a moment where clearly it appeared my son was invisible. It was at the dentist office. When you have a child with an ASD, who is not a fan of the dentist, I'm sure there is a big red flag in the file with the letters A-S-D written on it, warning any newcomer of said child's unease (all my doctors have red flags in my file with the letters C-R-A-Z-Y written on it). The lovely hygienist, whom I had never seen before, came up to me, with Ryan sitting in the chair only inches away, and whispered, "Ryan's regular dentist is on vacation today, but, Dr. So and So can see him. I understand with Ryan's, umm, uhh, (she couldn't say The A Word) difficulties, he may not want to have his exam today." My Invisible Man, who really isn't invisible....or deaf....or stupid, squirmed in his seat next to me, since he understood precisely what this somewhat clueless hygienist said. Of course, Ryan was not comfortable with Dr. So and So performing his tortuous dental exam, but, I'm sure Ryan was not comfortable being talked about as if he were invisible either. I know this hygienist thought she was doing the right thing, in the right way, which is why I didn't go nutsy on her, I simply said, "Why don't you ask him?" through a very phony, teeth gritted smile. She did, and my Invisible Man said, "Yeah, I guess that's fine as long as this new guy doesn't touch my final remaining baby tooth which is very loose." Ryan was told by his "regular" dentist that said baby tooth needed to be out by July and since the snaggle tooth was still dangling inside his mouth (he hates wiggling and brushing if for that matter....gross, I know) I believe that was why Ryan was so agreeable to see Dr. So and So. I understand that this hygienist did not know my son so she didn't understand the degree of "difficulty" he may have had with a change in his dental appointment routine, but, Ryan is not a toddler, he is a 12 year old boy, and I'd like to think she could have given him the benefit of the doubt by "seeing" Ryan and talking to him. At the very least, the hygienist could have called me to the front desk and had this discussion without behaving like Ryan was invisible. I have seen this happen more times than I care to count. On field trips, at class parties, at friends parties and even at family gatherings. Just because Ryan may remain quiet and doesn't go out of his way to communicate with people he is unfamiliar with, doesn't mean that he is invisible. Ryan is very visible for those who take the time to "see" him. I can recall a time when Ryan's invisibility shocked me. Like most schools, each classroom is assigned a room parent. One year, my girlfriend knew Ryan's room parent and so she asked the room parent about Ryan. This room parent, who went into Ryan's classroom with regularity had no idea who my son was. I AWEnestly, don't know why I was so surprised. I know that Ryan struggles socially, but, I guess I thought at least a parent would try to interact with him, or at least know his name. Ryan seems to just blend into the background, either making himself invisible or camouflaging himself with his surroundings in order to avoid any kind of social mishap. Sometimes by his choice, and sometimes, by other's choice. It's true that in many ways, Ryan may have the antidote to his invisibility in his back pocket, but, maybe he refuses to use it or maybe he doesn't quite understand how to use it. When Tom discovered that Jerry was invisible in The Invisible Mouse episode, Tom got creative and threw some flour on the floor in order to see Jerry's footprints...in order to "see" him. Sometime, you have to be creative, just like Tom, and look outside the box to see Ryan. Believe it or not, "the box" isn't that big. It doesn't take a lot of creativity to find the invisibility antidote. Just as I have witnessed those who can't or won't see my son, I have witnessed those who can and do. The mom who decided to stop at the car where Ryan was playing his DS and asked him to join her at the creek to throw stones, while others passed him by, or the kind soul who ran out of her car and jumped on pedal cars trying to catch Ryan in order to "see" and hear his joy. The math teacher who found the antidote in a math equation or the science teacher who found the antidote in plate tectonics. The music teacher who found the antidote in a musical piece that lead him to be able to both see and hear Ryan. You "see", the antidote for my Invisible Man is simple....try. Try and see him by finding his joy, try and see him by taking time to know him, try and see him by stopping and not walking past him, try and see him by viewing the world through his lenses, try and see him by just recognizing that he is THERE. I promise that all it takes to keep Ryan, and kids like him from disappearing is for people to just try and see them. I watched a video once http://youtu.be/xMBzJleeOno of a severely autistic girl who had never spoken before, who had given very little indication that she could comprehend what people were saying until one day, she begin "speaking" through her words typed on a computer. During the video, the father admitted to being amazed at such a discovery, but, also horrified for all the things he and others said in front of his daughter who appeared invisible and who, in so many ways, didn't seem to be "there". This girl would explain that her body felt trapped by autism. She could see, hear and understand most of what went on around her and it took a computer as her antidote to finally make her visible. These kids are all "there", they are not invisible and treating them as if they are, well, that just makes us the villains. The villains who are withholding the antidote. Ryan has told his speech teacher, Mrs. P, who by the way always "sees" him, that he is uncomfortable being too "visible", but, with the right support and encouragement from those around him, maybe one day he will take a swig from the invisibility antidote. Maybe once Ryan "sees" that others can and do see him, he will step out of the shadows. Chances are Ryan won't be so visible that he gets kicked out of a college bar for dancing on top of the bar (I've heard that sometimes happens to people), but maybe in time, Ryan will find his own antidote, his own way of stepping out of the shadows so more people can see him. In the meantime, I may need to start carrying flour in my purse so folks unaware, misinformed and stuck in their own box, can see my son through his footprints, through his beautiful eyes, through his unending smile and through his pure heart. Throw down a little flour folks, you never know what or who may be visible, right before your eyes. As I rubbed the sleep from my eyes and slowly stumbled down the stairs to get everyone ready for their first full week back to school following the long holiday break, I switched on The Today Show. There sat Natalie Morales with her perfect hair, perfect makeup and perfect haute couture telling viewers how this is reportedly the most depressing day of the year. I didn't need pretty, perky Natalie to tell me that, I was very aware. The holidays, which I love, had been packed up and stashed away in the basement the night before, the kids were heading back to school, Dan was returning to the office after a week at home, and the dreaded three long, ugly months of winter are now upon us. Blah. There are some shameless people who love the cold, the snow, and the dark days of winter. I am not one of them. In fact, as a tried and true sufferer of Seasonal Affective Disorder (SAD is the acronym...how poetic), I can totally relate to bears and their need to fatten up in the summer when the sun is bright, picnics are in full swing, and coolers are iced up with everyone's favorite summer time beverages. Then, when it gets cold, dark and depressing, bears go and sleep off that summetime buzz and extra weight all winter long and awake to the beauty of spring time. Clearly, I should have been a bear. Regardless of my winter blues, and moody moments, I think my children and husband would still miss me if I just quietly slipped away and slept for three months, so I have tried to find other ways to cope. One winter, after crying my winter blues to my doctor, he decided to put me on a low dose antidepressant to help me cope with all things winter. Well, that lasted about three weeks because the nausea side effects made me go from blue to green. Uh, no thank you. Sorry kids, sad, grumpy mommy, beats nauseous, pukey mommy. So, back to the SAD coping drawing board. The next effort was more effective and has continued for several winters without making me want to puke. I have discovered that losing myself in a world of fiction, fantasy and make believe keeps my winter blues a little less navy blue and a little more aqua blue. An occasional break from reality is healthy, right? Last winter, I found myself talking with a British accent when I served my children breakfast, and frequently referred to Emma as "my lady" while I lost myself in all three seasons of Downton Abbey (clearly I would have been living downstairs with the help where it appeared to be much more fun) during the month of January. With the long months of February and March still ahead of me, I found myself checking out our back window for the White Walkers to come busting out of the woods as I quickly turned from 1920's England to the Medieval era of Games of Thrones. The glow of my iPad could be seen from the street as I lay in bed watching episode after episode until 2 AM. The year before that it was the Fifty Shades of Grey books....Dan didn't mind that distracting coping mechanism. This year, it has been Orange is the New Black (which has convinced me more than ever to stay on the right side of the law) and Breaking Bad (which has convinced me to wear a gas mask every time I set foot in an unidentified RV). And just when I think I'm coping well for this first week of January, on this most depressing day of the year, I look on the kitchen table and smiling up at me is that happy, freaking mouse trying to convince me that the best way to beat the winter blues is to visit him. Suddenly, Walter White and Crazy Eyes no longer seemed so therapeutic. I longed for that happy mouse and that silly dog (He is a dog, right? If he isn't a dog, then what is he?) named Goofy to beat the winter blues. Our family has done the Disney thing twice...in 2008 and 2010 and I loved every single second of it (at least this is how I choose to remember it). On that first trip, two members of the family had to be dragged to Disney World kicking and screaming. You guessed it, Ryan ("I've never been there before.") and Dan ("Every ounce of my being doesn't want to go there."), but, they both not only survived Disney twice, they loved it...in their own way (at least this is how I choose to remember it). Ryan feared "new", Dan feared crowds and $6.00 sodas, and well, I feared how we would get there (planes are much too dangerous). We...ok, I, chose the Amtrak Auto Train, which AWEnestly, may have been Ryan's favorite part of our Disney vacation. I'm so glad that my ridiculous fear of dying in a fiery plane crash could provide Ryan with a memorable train ride. There are numerous websites and books on how to survive a Disney World Vacation and there are entire chapters devoted to helping a child with an Autism Spectrum Disorder make the most out of this survival. After all, Disney World is the pinnacle of over-stimulating good times. Everything is "magical" and nothing is "typical". A recipe for disaster for a child with an ASD. We received our fair share of doomsday warnings. Our pediatrician kind of chuckled, in a slightly evil way, as he suggested he write a note with Ryan's diagnosis in order to avoid waiting in the overcrowded, loud, long queue area with all the masses. A therapist warned us that our first trip would basically result in sensory meltdowns, over-stimulated tantrums and a great deal of autismy behavior. We were even told by one specialist to think of our first trip to Disney World "as a planning trip for the next time we go back." Seriously? Thousands of dollars spent on an experimental Disney trip? I started to feel more like Dan and Ryan, but, we packed our bags and off we went....with a cloud of doom over our heads. With such a doomsday prophecy, I did everything I could to prepare Ryan. We watched videos on Disney World, we checked out all the rides and activities repeatedly on the Disney website and I made a detailed schedule for each and every day which gave him some sense of control. In each and every park, I tried to convince Ryan which rides he would enjoy. Most of the time, Ryan trusted me and with a little trepidation, he would board the ride with the rest of us. You could see the anxiousness coupled with excitement in his face, and at the end of the ride, he would announce whether or not that ride deserved a second go around. I knew that Splash Mountain, The Tower of Terror and Expedition Everest were out of the question, but, I did convince him to try It's a Bugs Life (we lasted 3 minutes on the first trip and sat through the entire thing on our second trip) and although he enjoyed seeing the animals on the Klimanjaro Safari, he got a little freaked out by the gunshots of the imaginary poachers. Without a doubt, the wave pool at Typhoon Lagoon, with it's deep pressure waves and calming waters, made both trips to Disney World memorable for Ryan. With Ryan's horrific fear of Santa, I figured the characters at Disney World would scare him too. As seen here, I was proven wrong. Ryan gave hugs, high fives, posed for pictures and even got autographs (until he decided autographs were stupid). My anxious little boy, who hid in the bathroom every 4th of July, even survived, and I'm going to go out on a limb here and say, even enjoyed, his first ever fireworks show. Ryan's ears were covered, he was obviously a bit anxious, but, he watched every single explosion light up the night sky....with a smile on his face. Disney really is a magical place. Ryan found various ways to cope in Disney World. Lots of ice cream, popsicles and stops at Goofy Candy Shops helped, as did having his iPod Touch charged and at the ready for times when waiting tended to diminish the magic. Checking out Mom's hard core daily schedule also gave him a little peace of mind knowing what was coming next, but without a doubt, the funniest coping mechanism Ryan discovered was Disney's Public Restrooms. I'm not exaggerating when I tell you if that boy saw a restroom sign, magically, he had "to go". With thousands of people entering Disney Parks on any given day, there are a lot of restrooms and lots of very obvious signs pointing out exactly where to find said restrooms. Of course, this stopping "to go" became a bit frustrating as potty breaks every ten minutes were not built into my itinerary, but, potty breaks sure beat meltdowns. By the end of the week, being the fabulous parents that we are, Dan and I considered capturing a photo of Ryan heading toward potty stop #275, since next to the wave pool at Typhoon Lagoon, Disney's Restrooms appeared to be the highlight of Ryan's trip, but we acted like grown ups and resisted the temptation (shocking, I know). It wasn't until long after we were home that I finally got it. The constant potty breaks were not a result of too many juice bags or a bladder infection, the bathrooms were probably the one place where there was not constant stimulation. Yeah, the automatic flushing toilets were loud, but, Ryan was familiar with that sound....he expected that sound. Public restrooms were the one thing in Disney World that Ryan knew would function the same way every single time which brought him comfort (regardless of the smell, the germs, and the loud flushing toilets). In the safety of his bedroom, weeks after we returned home, Ryan told me that he liked how "smooth" the walls felt in the bathroom stalls. Smooth and soothing, not bright, rough, bumpy and loud. He never ceases to amaze me. So, yes, our family survived Disney World...twice. And I guess in some ways the first time did prepare Ryan for our next trip, since there were fewer restroom stops. Ryan enjoyed himself ("except for walking around in all those freaking parks") and often begs to go back. We were warned of how difficult a trip to Disney can be for a child with an ASD and we tried to prepare Ryan before we went and heeded the advice from the websites, the books and the specialists, but, not one of them suggested hanging out in the public restrooms with smooth feeling walls when the days got too long and the magic of Disney started to wane. Just like I decided to forego the nausea inducing meds to survive my Seasonal Affective Disorder, and have found my own way of surviving the long, cold, ugly winters, Ryan found his own way to survive all the magic of Disney World. Whether it was a swim in the wave pool at Typhoon Lagoon, an $8 popsicle (which gave his father heart palpitations....perhaps a letter from Dan's doctor should be in order for our next trip), a sugary treat from the Goofy Candy Store or a routine pit stop at every visible restroom with it's smooth walls and predictable experience, Disney was still magical, still fun, and still worth the trip. Ryan will always have naysayers, those who predict the doom and gloom of an autism diagnosis, but, just like Ryan experienced Disney World in his own way, so too, will he experience life in his own way. And although Ryan may not always be able to seek comfort and refuge in a "smooth" walled restroom, I have no doubt, that just like Goofy, regardless of what people think Ryan is or what he is suppose to be, Ryan will continue to discover ways to cope in order to find the magic. You see, Ryan knows just who he is and worries little about who and what others expect him to be....not even Walt Disney can top that kind of magic. 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. 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. 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. 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. 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. 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. 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. 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. 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? 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? 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. 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. 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. 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! I would love to tell you that like my son Ryan, I am a non-conformist, a marches to the beat of my own drum kind of individual, but, alas, I am not. I am more of the follow the crowd, jump on the bandwagon, wear the latest trends (then years later, laugh and hide all photos out of shame and horror, or better yet, embarrass my teenage son with my trendy fashion choices) kind of girl. I'm not proud that I regularly wore an all black "cat suit" unitard with cut off Levi jeans while proudly flouncing my latest spiral perm curls. No, I'm not proud, but I am AWEnest....AWEnest and somewhat ashamed of my "follow the crowd" persona. Although, I can happily report that my black cat suit unitard is retired (unless, of course you count Spanx), I'm still a jump on the bandwagon kind of girl. As an autism mommy blogger, today I sit blogging in my skinny jeans tucked inside my ski boot looking Uggs (both of which I swore I would never wear) and I feel compelled to jump on yet another bandwagon. A bandwagon worth blogging about. If I let this wagon pass, without adding my two cents (really, my two cents are probably only worth about a half pence, which by the way, England stopped making in 1984 because what the heck can half a penny buy anyway....certainly not an all black unitard or a spiral perm) I would become an outcast among all other autism bloggers. Then I would be all alone in my skinny jeans and Ugg boots waiting for the UPS man, or as I like to call him, My BFF, to deliver my new high heeled sneakers from Zappos (I swear, I will never...I hope). The latest band wagon among the autism community has been to gang up and beat the hell out of the beloved puzzle piece that is Autism Speaks. Wow! The puzzle piece was smashed, stomped, tweeted, blogged and flogged last week. Every blogger, advocate, parent or adult living with autism had something to say...and most of it wasn't pretty. The controversy started after Autism Speaks co-founder Suzanne Wright wrote an editorial on the eve of the first ever "Autism Speaks to Washington" Policy and Action Summit in Washington, DC. Silly, rich, Suzanne used words like "monumental health crisis", "national emergency", "despair", and "not living". Wow Suzanne! I had no idea! As I watched Ryan board the school bus this morning smiling from ear to ear with who knows what going through his head, he did not look like he was in "despair". As I joyfully Christmas shopped for Ryan later that afternoon, I sure felt like I was "living" and not just "existing". Had I only read Suzanne's piece earlier, I may have recognized that my life, and my son's life was verging on a "national emergency". I am fully aware that autism, or ASD, is a "spectrum disorder", I wonder though if Suzanne and the folks at Autism Speaks know this? They certainly must since they chose the puzzle piece symbol to reflect the mystery and complexity of autism as well as to represent the diversity of each individual affected with an ASD. Autism Speaks is the most recognized autism organization, or charity if you will, with lots of money, lots of celebrities, lots of researchers and lots of media in their corner, so how could they not know that people living with an Autism Spectrum Disorder are as unique as every puzzle piece? And that in order to "solve the puzzle", each piece must be regarded equally. With all the information and all the money that is Autism Speaks, I would think that Autism Speaks must be aware that not all children and adults living with autism feel like a "national emergency", that perhaps maybe folks living with autism think Suzanne and her cronies at Autism Speaks are the cause of the "monumental health crisis". As a mother of a child with an ASD, I am grateful every day that although autism is a piece of Ryan, there are many more pieces to my AWEsome son, and some days, autism is not the mysterious, doesn't fit puzzle piece, it's just an average corner that completes the entire puzzle. I understand this is not the case for all children and their families, for some, autism is the key piece, however, as an organization designed to advocate and help kids who fall on both ends of the autism spectrum and everywhere in between, words need to be chosen wisely Suzanne. Words need to represent all the people, adults and children, that Autism Speaks claim to support, especially when Autism Speaks professes to be "speaking" for those who can't. This "speaking" must feel like a foreign language to Suzanne and her staff since none of the people Autism "Speaks" for can be found on any of the the Autism Speaks Boards or within it's leadership. Perhaps the real missing puzzle piece, is the non-existent voice of those with an ASD in the Autism Speaks organization. One of the key puzzle pieces to the Autism Speaks organization was lost last week as a result of Suzanne Wrights' poorly chosen words as well as a history of Autism Speaks blunders. John Elder Robison, Best Selling Author, Autism Consultant and Educator, and adult living with autism, resigned from the Autism Speaks Science and Treatment Boards last week due to the varying differences between his views of what it is like living with an ASD and the beliefs, ideologies and overall mindset of the folks at Autism Speaks http://jerobison.blogspot.com/ . Mr. Robison had hoped to change the views at Autism Speaks by using his own life experiences, his "gifts" as well as his "disabilities" to change the tone of a very controversial organization. It would appear his words fell on deaf ears. Ironic that Autism Speaks is supposedly "speaking" for those with no voice, yet time and time again, they have proven that with all their speaking, they do very little listening. Mr. Robison concluded that Autism Speaks, although in a position to advocate and speak for children and adults living with autism, clearly is not listening, so he bowed out. What a shame. Maybe Suzanne Wright needs more people living with an ASD on her organization chart. Maybe instead of screwing things up with her horribly misguided words in a march on Washington, Suzanne Wright should have had someone living with an ASD use their own words, their own voice. Perhaps people living with autism can "speak" and regardless of your position on the "Org Chart" Suzanne, maybe you need to listen. Although there are many children and adults living with autism that struggle day in and day out, and this struggle takes a toll on their families, there are just as many people living with autism who don't think they have an "autism situation" or a "problem". People who view their autism as a piece of their big picture, not the mysterious, doesn't quite fit, puzzle piece. I don't know of any other organization that is designed to advocate for a group of people that's misconception of those people is so off-putting that the very people they purport to serve, holds them with such disdain that they create their own group. An Anti-Autism Speaks group, was created by folks living with an ASD so that the true voices of autism can be heard http://autisticadvocacy.org/ Many higher functioning adults living with an ASD, feel that Autism Speaks spends too much of their millions of dollars (reportedly 44%) on research, and much of these research dollars are not spent on ways to improve the lifestyles of people living with an ASD, but to prevent people with an ASD from existing in the first place. For example, prenatal testing that may reduce a couples chances of having a child with an ASD. This compares to the reportedly 4% of Autism Speaks budget that goes to Family Services to help children, and adults with an ASD that are already here. Some argue that Autism Speaks' goal of "eliminating" autism prays upon parents' fears and stereotypes and that their fundraising tactics enhance these fears with families and the general public. Words like "burden", "despair", "disease" or "defective" do NOT pertain to my son, yet Autism Speaks is "speaking" for him, "speaking" for my family and that is the misconception the public "hears". I do not have an ASD. I do not know what it is like to have a "neurological difference" that varies from the majority of folks in the world, so I cannot SPEAK to what living with an ASD is like. As a mother of a son with an ASD, I do HEAR and I do LISTEN...to my son's words...to his feelings....to his heartache....to his joy. While listening, I have never heard Ryan complain that he felt he was just "existing", nor have I heard him utter words like "despair" or wonder if he was part of a "monumental health crisis". Ryan feels like Ryan. A boy who loves video games, music, math, and despises art with every fiber of his being. A boy who loves his mother to the sun and back and is fiercely protective of his little sister. A boy who cries at the thought of his brother, his best friend, leaving for college in a mere two years. A boy who has two parents that love him and believe in him and fight for him. A boy who does not feel like there is a piece to his puzzle that is a mystery. A boy who believes all his pieces complete the picture of who he is, and not one piece has any more importance than the next. A boy who believes that autism is part of his "genes", and that these "genes" make some parts of his life a little tougher, but these autism "genes" have also given him gifts. Gifts that those of us without the mysterious puzzle piece gene, can not begin to fathom. So yes, even though today, I jumped on the "Wow, Suzanne Wright of Autism Speaks, I can't freaking believe you said that stuff out loud", I am not denouncing Autism Speaks (like they would really care about my half pence anyway) because I think they have done a lot of good in many areas. Autism Speaks has helped enact legislation that forces insurance companies to pay for autism services that were once out of pocket expenses (still have a looooooong way to go on this one, but is has started). Autism Speaks has raised awareness of autism and although some of their tactics have basically sucked, it still has people talking, and talking often leads to understanding and to change. A monumental change that must be forthcoming is that if Autism Speaks continues to "speak" for all individuals living with an ASD, than I hope it shuts up long enough to start listening. Listening to those who are living with an ASD and putting their voices on Autism Speaks' boards and in their leadership. Listening for ways to help gain acceptance and not always touting the awareness of differences for people living with an ASD. Listening to the joys and the successes and not always focusing on the hard ships and the heartaches may be the key to a truce between the autism community and Autism Speaks.
I have one child with an ASD, so I can only speak to my family's experiences. I am in no way diminishing the struggles that many families experience day in and day out with an autistic child, but as an organization designed to support all people living with an ASD, Autism Speaks need to stop speaking and listen. Please, just stop speaking and listen. Just like any child, my son has had his share of heartaches and successes. Although I may not know the inner workings of Ryan's brain, I think I know his heart better than anyone. Most days Ryan is proud and confident of who he is...the entire picture....not the pieces. Knowing his heart so well, I can assure you that at the age of 12, Ryan couldn't give a da** what Suzanne Wright or anyone else at Autism Speaks thinks about him, writes about him or campaigns about him. However, one day, as a successful, contributing member of society, he will. And I can say with utmost certainty that to read Suzanne Wright's words, to think people believe a part of his puzzle is broken, defective or part of a "monumental health crisis" would hurt and sadden him. This was one bandwagon I was proud to jump on...for my son. After all the years we have spent telling Ryan that we all have differences and that these differences are what make the world such a unique and great place, to read that the co-founder of an organization created to help Ryan and others living with an ASD, considers people like Ryan a "national emergency" is wrong on so many levels. I never want my son to be ashamed of being exactly who he is...all the pieces of him that make him perfect...that make him, him. So, I hope the folks at Autism Speaks recognize that the real puzzle, the real mystery is why they continue to Speak for people living with an ASD, but rarely take the time to listen to them. Now, that I have jumped off my bandwagon, I must go. I'm pretty sure my UPS BFF just dropped off my new high heeled sneakers from Zappos. Don't worry, if they look as ridiculous as they sound, Ryan will give me his AWEnest opinion and chances are they will be returned on the next UPS truck that cruises through the neighborhood. The cold sweats. You know, the sweaty, clammy, chilled feeling you get when you are about ready to "toss your cookies", give a speech in front of your classmates or colleagues on a topic you really know nothing about, hear the door slam on Disney's Mission Space ride and wonder why, when you suffer from claustrophobia, you Fast Passed in the first place, or send your son off to middle school with a project he completed that you feel certain will irrevocably impact the rest of his middle school career. Yeah, that kind of sweat. I didn't have the stomach bug, I wasn't giving a speech and I wasn't standing in a hideous line at Disney World, so that leaves one cold sweat producing option. I broke out in a full fledged, panicky, clammy, cold sweat as I waited in car line at middle school a few weeks ago. As my heart raced, and a bead of sweat began forming on my brow, I sat behind the wheel of my mini van wishing I was on Mission Space and all I needed to do was frantically scream that I wanted out and some nice Floridian teeny bopper would roll her eyes at my pathetic self and open the door to end my torture. Ryan was unaware of my near hysterical state as he sat next to me happily humming the theme song to Total Drama Revenge of the Island. In Ryan's hand, THE Project, an acrostic poem he had created on poster board, quite proudly, on his own. For those of you who had to Google "acrostic poem", like I did when Ryan received the assignment, an "acrostic" is a poem or other form of writing in which the first letter in the text spells out a word or phrase. In this assignment, Ryan had to use the title of a book he read, and each letter in the title had to relate to something that happened in the story. Easy breezy, right? Well, sort of, if you don't have a whacko for a mother. The book for the project was titled, "Anything, but Typical", by Nora Raleigh Baskin. I picked this book up at an autism conference. I believed Ryan would enjoy it. I told Ryan he should read it for his book report. I felt certain in doing all of the above, that I just sent my son to the gallows. "Anything, but Typical" is a fictional story about a boy with an ASD. When I turned to the first page and read the main character's abhorrent description of art class, I thought, "Well, that sounds like someone else I know.", so I was hopeful Ryan would see past the words, past the laborious task of (shudder) reading, and see a little bit of himself. Ryan HATES reading, especially fiction because in Ryan's mind, fiction is a waste of time and "utterly ridiculous". If it's not true, or real, why bother? What good could come from such a big waste of time? So, needless to say, when my boy read the book and said he "loved" it, I gave myself a huge pat on the back! I asked Ryan, "Did you like the book because you saw a little of yourself in the main character?". Clearly, I forgot who I was speaking to, "No, I'm not like that boy at all because my name is Ryan, his name is Jason. I live in Pennsylvania and he lives in another state. I hate writing, and he loves writing." Ok, ok, so for a minute, I thought maybe Ryan could see past the black and white print and "read between the lines" to find the gray. It wasn't until Ryan finished his acrostic poem that I realized that even though Ryan may not "see" the similarities in himself and Jason, he clearly felt them. Once I read Ryan's words, I no longer was patting myself on the back, I was kicking myself in the a**, terrified that my book choice for Ryan and this project, would not only have a deep and lasting impact on his middle school years, but, this poster, this "acrostic poem", may possibly have negative consequences that could potentially reverberate throughout the halls of high school too. For those of you over 40 and who need to hold anything you read at arms length because you refuse to buy reading glasses at CVS, I will write out Ryan's acrostic poem in case the words aren't legible in the photo above. Autistic Neurotypical Yearn to feel normal Therapist help Hawthorne is Jason's art teacher Insecure Nervous about new experiences Gifted with the English language Bennu is a dwarf in Jason's story Unusual behavior/habits QUIRKY Trouble always searches for Jason Talking was difficult Yelling is what people did to Jason when he had no response Phys Ed is what he hated the most Isolated Clay caused Jason to flip and turned him into a laughing stock Art is one subject Jason really hates Loves to write As I read Ryan's words, I felt an all out war begin in my brain. I can't even begin to describe the pride I felt in the work that Ryan had done, the words that he often is unable to say, but was clearly able to write down. However, if I'm being AWEnest, I also felt a panic rising in my chest. What if Ryan's classmates made the connection between Ryan's acrostic poem and Ryan? What if words like "autisitic", "unusual behaviors", "quirky", "isolated", "laughing stock" and "insecure" all pertained to Ryan and not Jason, the main character in the book? What if after years of believing Ryan was "odd", "weird", or "nerdy", Ryan's classmates recognize that Ryan's differences go much deeper than that, deep enough to make his differences worthy of the label "autistic"? What if after all my soap box preaching, all my "look beyond the label" regurgitation, I actually do prefer "quirky" or "weird" over that heartbreaking A Word. What if I'm a fake, a phony, a horrible mother? What, if, what if, what if?!! The panic was close to overflowing, so close that I almost screamed for Ryan and dragged him and his poster back in the car. I considered bribing Ryan with a donut and taking him back home and putting him in the bubble I often longed for, where I knew Ryan would be safe from prejudice, ignorance, bullies and a certifiably crazy mother. My hands were gripping the steering wheel so hard, my knuckles were white and I no longer could think straight. The other parents in car line, whose kids walked care free into school with no acrostic poem that linked a label to their kid, were angrily beeping their horns at me. The death grip I had on the steering wheel loosened enough that one particular finger was almost ready to shoot up in the air as I slowly pulled away. What could I do now? Ryan was walking happily through those middle school doors with none of the fear or the backlash that had me close to puking. I drove home with panic in my heart, regret in my mind, and Denial chatting annoyingly next to me. I frantically raced into the house to share my breakdown with Dan (poor Dan, he has had to talk me off my cliff so many times I stopped counting...he probably hasn't). As I rambled through my lists of fears, some completely irrational ("What if they call him Rainman?", like these kids watch anything other than YouTube and Vine videos) and some more rational ("What if the other kids do read between the lines and this discovery "Isolates" Ryan further, making him Yearn even more to "feel normal"?), Dan stood calmly and listened. When I finally exhausted my neurotic list of whys....Why did I buy him that book?....Why did I let him expose his vulnerabilities?....Why didn't I homeschool him?....Why wasn't Dan trembling in a cold sweat and racing to the school to rescue Ryan from the injustices and bullies of middle school?....my emotionally spent, and highly adrenaline filled brain collapsed in a heap on the couch. Dan looked at me, calmly and without so much as a bead of sweat or a tiny tremble and said, "I think it was brave." My gosh how I wanted to kick him. If my body hadn't been transformed into a wet noodle, I surely would have given him just one quick shot to the knees. This glass half full, annoying husband of mine, whom without I would have long since been institutionalized, was so right, so spot on, and I kind of despised him for it. Just because Dan has never committed me against my will (aka, a "302") for a much needed "rest", doesn't mean I have to love when he is right. Obviously, it kills me when Dan is right, especially when he is so calm about it. But what grinds that knife just a little bit deeper, is when I have been so very, very wrong. As much as Denial tried to help me wrestle Ryan and his poem back in the car that morning, I knew that Dan was right (dammit). Ryan was brave. Ryan is brave. Even though Ryan and the main character, Jason, had some differences in Ryan's black and white brain, Ryan wrote down words that he understood, that he related to, that he himself has felt. Words like "isolated", "unusual behaviors", "prefers to be alone", and yes, even The A Word, "autism". Whether or not Ryan gave a moment's thought to his fellow classmates recognizing those same traits in him, I AWEnestly can't say. Maybe Ryan thought about it and didn't care, or maybe it never even crossed his mind. We neurotypicals get so caught up in worrying about what others think, say, or do, that we lose a little bit of who we really are. Other people's perceptions have so much weight in our lives, that sometimes we lose sight in who we really want to be....who we are really meant to be. Ryan spends very little time concerning himself about other people's perceptions which gives him the freedom and the bravery to just be. Exposing your differences is brave. Not hiding who you are is brave. Being unashamed of who that is, is brave. Keeping Denial on speed dial and calling her every time life gets scary, is not. The definition of brave is "to face or endure with courage". When we think of bravery, we envision fireman running into a burning building while others run out. We picture police officers in a firefight, bravely protecting their community. We see soldiers putting themselves in harms way, to protect innocent civilians and to protect our freedom. All perfect scenarios of bravery, and of course, such bravery should be exemplified and celebrated, however, bravery has many faces. There are other brave heroes who "face or endure with courage" very different battles. The bravery of a child who sits for a haircut when each snip of the scissors feels like a thousand needles in his head. A child who wears scratchy, hard jeans when every fiber in his being is screaming for those pants to come off. A child who spends his time at recess alone, preferring the solitude to a social mishap on a playground filled with social cues he can't begin to understand. The teenager who bravely walks into a crowded, noisy lunchroom where the noise, the smells and the chaos are like walking onto a battlefield, but in this battle, he is alone, with no flak jacket, no protective gear, and no back up. Bravery takes various forms. In order to be brave, one doesn't have to put out a blazing fire, learn how to fire a semi-automatic handgun or drive a humvee. Sometimes, being brave means finding the right words in an acrostic poem and proudly sharing those words, with little to no fear, and the only back up being a hot mess of a mother curled up in the fetal position a mile down the road. Even though it kills me to say it again, Dan was right (ugh). All my worrying, sweating, and panicking was for nothing. Ryan's teacher said, Ryan "rocked" his presentation! Ryan said what he wanted to say, got all the words out, and not a "Rainman" was mumbled in the class. For a boy who often says so little, who often struggles to find his words, when Ryan does say something, it certainly is worth listening to. Maybe that day Ryan taught his classmates what it is to be brave. Maybe, brave has a new face. Or maybe, middle school kids are just too young to "see it", so consumed with fitting in and being just like everyone else, brave doesn't matter. One thing is for certain, my brave boy and kids like him, are proving to anyone who is fortunate enough to read between the lines, that there is so much more to these kids than words in a psych report, words in an IEP, words in a book, or words in an acrostic poem. The day Ryan shared his words, he was, indeed, brave. Every day Ryan walks out the door into a confusing world that doesn't understand him, and rarely tries to, he is brave. Every sensory sensation that Ryan tolerates and doesn't run from, he is brave. Every social blunder Ryan survives and social cue he misses, yet keeps on going, he is brave. Accepting his differences and being just who he is meant to be, may not make the nightly news, but Ryan's bravery, his courage in the face of adversity, makes him an ally worth having on any battlefield. Dr. Robert Anthony, author and self-help guru said, "The opposite of bravery is not cowardice, but conformity." My courageous, handsome, little non-conformist, might just be the bravest kid I know. Well, it's officially Halloween and I'm sad to report that the only horror movie I watched this Halloween season was the Rob Zombie remake of Halloween. I love to freak myself out during the creepiest month of the year. Comcast has every horror film of the past 40 years currently On Demand, but of course they aren't found in the "Free Movies" category. I mean, why would Comcast just put a bunch of classic horror films On Demand during the ghost and goblin time of year and let their, already sucked dry by outrageous monthly fees customers, watch these highly acclaimed, slasher films for free? That would be too logical, too kind and too cheap. Now, if perhaps you stumble across Halloween in say, oh, July for instance, it won't cost you a cent, but come October when you really want to watch a good old fashion "let's leave the lights on tonight" movie, about All Hallows Eve and scare yourself silly, plan to shell out some cash. Comcast's greed is almost as horrific as the horrendous choices young, wannabe stars make in horror films (AWEnestly, who goes to an abandoned house where people were murdered to make out on Halloween night?). If I knew how to resurrect Michael Myers, I'd tell him Jamie Lee Curtis works at the Comcast office and I'd punch the address into Google Maps for him. Since I haven't performed any séances of late, instead of sicking Michael Myers on Comcast every Halloween, striking fear in their greedy hearts, I should send Ryan into the Comcast office demanding candy and free Halloween movies, wearing a scratchy, hard, uncomfortable, not made of Hollister cotton, costume. Ryan would never harm a flea because first of all, a flea is a bug and he won't go near a bug even to destroy it, but, mostly because Ryan has a beautiful heart and a logical brain. Raising a knife is against the law, but raising one hell of a fit when attempting to put on a costume, well there in no law against such behavior in the crimes code. Chances are, after listening to the whining, screaming and complaining spewing out of Ryan's mouth, the Comcast staff would take their chances with Michael Myers....in the office alone....with the phone lines cut....on Halloween....with a full moon.....and neighbors in surrounding offices, who conveniently, never hear anyone scream. I can almost picture the free Halloween movie line up on my TV now. Lot's of kids get freaked out over Halloween and AWEnestly, who can blame them? Ghosts, vampires, devils, monsters, zombies and Miley Cyrus (shudder) costumes are everywhere. That is down right scary stuff. It's enough to make the bravest kids shake in their fake, made of fabric, with elastic straps that break after trick or treating at two houses, costume shoes. Add some creepy spiders, weird, scary noises, bright flashing strobe lights, squealing motion sensing decorations, varying routines and a touch of autism, and my friends, you have your very own house of horrors. Halloween tends to be very difficult for many kids with an ASD. There is a ton of sensory overload and lots of changes in routine. Even the slightest change in routine can be upsetting, from decorations in the house, to family members dressing up and looking "different". Loads of sugary snacks and horribly uncomfortable costumes that we stuff their highly sensitive bodies into, can lead to a toxic, Halloween horror meltdown. At our house, costumes have always been the biggest Halloween horror. There are the horrible, surely may suffocate you plastic type costume, or the must be made of porcupine quills fabric type costume. For a kid with an ASD, choosing between sticky, hard plastic or jaggy, scratchy fabric is like asking a vampire to choose between garlic or sunlight as his preferred method of torture. Yes, costumes are surely the garlic for an ASD child on trick or treat. Ryan's first trick or treat outing occurred when he was just 14 months old. The sweet large headed fella had just learned to walk so what a perfect time to drag him around the neighborhood in a costume. A week before trick or treat, Denial and Clueless went costume shopping with me. Since Ryan loved to have me sing Winnie the Pooh to him at least 10 times a night, the exact same way, holding him in the exact same position, and never interrupting the song since I would then have to start at the beginning again (clearly, I was as naïve and stupid as the starlets in horror movies), it seemed only logical that a Winnie the Pooh character costume was in order. So, off we went to the Disney Store for the sweetest, furriest, tickliest, scratchiest Eeyore costume we could find. Hooray! "Won't he look adorable!", squealed Clueless, as she held up the Eeyore costume. "But, Ryan doesn't like hats, or anything on his head, maybe the hood will bother him?", I worried. "Don't be ridiculous!", Denial chimed in, "It's not a hat or a hood, it's a donkey head and Ryan will love it!". So consumed with the cuteness of the costume and the thought of "every child trick or treats", I plunked down my $36 and began counting down the days until trick or treat. When trick or treat finally arrived, Ryan let me put the costume on, but he immediately began tugging, pulling, digging and "no, no, no'ing" while tearing off the hood, I mean head. With every pull down of that head, I pulled it right back up. Without the head, Ryan looked like a headless Eeyore and that was not cute and cuddly, that was just down right frightening. Not to mention, I paid $36 for this adorable costume and come hell or high water, Ryan was going to wear it. As Denial and Clueless accompanied my family out the door to begin our night of gleeful fun, I assured Ryan that the hood, I mean head, would keep him warm on such a cool night. Well, by the fourth house, regardless of the temperature outside, Ryan and I were both sweating. Between having to carry Ryan because he detested that stupid costume, and me chasing him down the street to pull that freaking head back up, the night was a disaster. At that point, Michael Myers, Jason or Freddy Krueger could have snuck up behind me and I would have grabbed their hand and begged them to take me to dinner. After the Eeyore costume was sent out to pasture, I didn't even bother to try costumes for a couple years. It made me sad, it made me angry, it made me resentful, but I knew the battle just wasn't worth it. After Eeyore, the next "costume" Ryan wore, consisted of a cotton skeleton tshirt and cargo pants. It did the trick, but I still wasn't satisfied because technically, it wasn't a "costume". Year, after year, Halloween after Halloween, it was the same old story. Ryan wanted to trick or treat because his brother did, because the neighbors did, because the kids at school did, and because there was an obscene amount of candy just on the other side of that costume. Denial kept telling me that I needed to push Ryan because trick or treating was like a kid rite of passage. "EVERY kid does it.", Denial sneered. So I pushed, I pleaded, I begged and I bribed all with less than fun results. Over time, Ryan finally relented and accepted costumes, and most of the costumes he would somewhat "willingly" put on, represented "real" people. Costumes that Ryan knew weren't imaginary or pretend. For example, Ryan wasn't going to be a dinosaur because he was well aware of the fact that dinosaurs have been extinct for millions of years. Ryan certainly was not going to be a zombie because zombies don't exist (for all you Zombie Apocalypse believers out there, please don't share your beliefs with Ryan, or me for that matter). For three years in a row, Ryan was a doctor. A doctor is someone he is familiar with, someone "real". One year, Ryan wore the top and the bottom scrubs, one year just the top, and one year just the bottoms. Although Ryan's incomplete costume stressed his OCD mother out, it didn't matter to him at all, he still got candy. Another year, Ryan was a police officer, because I let him carry a toy gun (judge away, he put the freaking costume on) and the following year, he wore a costume that sort of resembled Keanu Reeves in The Matrix. Ryan never saw The Matrix movie and Keanu Reeves was as foreign to him as John Wayne, but, I think I told Ryan it was just a different kind of police officer costume and I let him carry an even bigger gun (Wow! How do I sleep at night?). Even though Ryan willingly put these costumes on, it still wasn't easy. There were still endless complaints of things being too itchy, too big, too little, too chokey, too smothering, and on and on and on. I started to dread Halloween. Then just three years ago, the unthinkable happened. Ryan found THE costume, the costume that transformed him from whiney, grumpy, horror film nightmare, into a trick or treater extradordinaire! The costume that not only Ryan embraced, but the costume that allowed me to take a black eyeliner and draw a fake mustache on his face! The costume that literally came alive with facial expressions, sound effects and mannerisms. The costume, that in my mind, performed miracles! Luigi Saves Halloween!! Hallelujah! Yes, folks, that Halloween it was Michael Myers vs. Luigi and hands down, a video game controller beats out a big, shiny, butcher knife, every single time! Who knew?! My grumpy, irritable, sensory overloaded, terrorizing boy became Luigi in every sense of the word and it was hands down the best trick or treat night ever. For Ryan, Luigi made sense. Luigi felt familiar. Luigi made trick or treat what it was suppose to be....FUN! After I decided to leave Denial in a dark alley with Michael Myers, I took off my own mask and was finally able to see that Ryan did not care as much about trick or treating as his possessed, scary, crazy mother did. I wanted Ryan to be like all the other kids...to wear a costume and just pretend for a couple of hours. Pretend to be a ghost, a fireman, a dinosaur....a neurotypical kid. Autism makes pretending difficult, black and white thinking makes imagining in color next to impossible. Ryan's black and white world and his horror of costumes, made Halloween and my denial of autism, paralyzing. Begging and pleading with Ryan to behave in a certain way and to pretend to be someone he is not. Asking Ryan to be a doctor when clearly he is a Luigi. Yes, for years, I was as scared as Jamie Lee Curtis in Halloween....always screaming, running in circles, and trying to stay alive without sinking into madness as I tried so desperately to make Ryan wear a costume that regardless of the size, he would never, ever, fit into. It didn't matter how hard I tried to stuff him in the costume, or how many adjustments I made, tugging it this way and that way, or how many layers of comfortable clothes I put underneath the costume, there was no hiding who Ryan was and how he struggled behind the costume. A costume I had created for fear the real Ryan would be rejected. Whether it was trick or treat, soccer, or baseball, for years, I tried to pretend and hide who Ryan really was behind various "costumes" in an effort to make him "look" like everyone else. Regardless of how scratchy the costume is Ryan wears this year (9 hours until trick or treat and it has yet to be determined), it will never be as uncomfortable as the one his mother wore for years. The costume I wore to hide my fear, my anger, my guilt and my naivete. So consumed with my own costume, that sometimes I lost track of the little boy who hid behind his own. A costume Ryan had to create in a world where only once a year, we celebrate looking different. It took years of patience, understanding, and acceptance for me to embrace the differences in my boy rather than hide from them. Sometimes those differences are hard for me to understand, but they are no longer hard for me to accept. And if I'm being AWEnest, I still have moments when my costume calls to me from the back of my closet, where it is hidden in shame, and although I may take the costume off the hanger occasionally, I do my best to never, ever put it back on. Trick or Treat is the one day of the year, that kids hope they don't look like anyone else. Children search for the perfect costume, working so hard to look different than who they really are, day in and day out. With only a few hours until go time, Ryan is still struggling with "who to be". Ryan has asked repeatedly, why he has to wear a "stupid costume" just to get some candy, and every year I say, "That's the tradition of trick or treat". Maybe this year, we will break away from tradition. Maybe this year, Ryan will do the exact opposite of everyone else. He will not pretend to be someone he isn't. Ryan can wear his silk shorts that are too short, but comfortable, a Hollister tshirt, and he can script the latest Total Drama Revenge of the Island episode that is routinely running in his head while licking his lips and face until they are fire engine red. What a welcome relief that would be for Ryan, since the other 364 days of the year, he tries so hard to be someone he isn't, by trying to "look" like everyone else. Maybe this trick or treat, for a mere two hours, Ryan will celebrate his differences instead of hiding them under a costume.
Tonight, on Halloween, Ryan just might trick or treat as Ryan. A boy who is growing comfortable in his own skin and who is learning to be proud of who he is, regardless of what costume others think he should wear. With such a comfortable "costume" I realize there is no point sending Ryan to the Comcast Office trick or treating, since they will find nothing scary about a boy in silk shorts that are two sizes too small and a Hollister tshirt. On the other hand, if the folks at Comcast don't have just the right type of candy, perhaps, a little of the former, scary, terrorizing Ryan will come out and maybe, just maybe, I will get some free horror movies after all....in November....right when all the free, year round Christmas movies cost $4. The beginning of August may mean school is just around the corner for some while others are still waiting for the last summer trip to the beach to bask in the sun, relax with friends and family and jump the ocean waves. And now, thanks to 26 seasons of Shark Week on the Discovery Channel, we know precisely what is lurking under those waves. Which leads me to wonder why, oh why, does the Discovery Channel air Shark Week in early August at the height of beach season for so many folks? Why not in December when many of us are bundled up in coats and scarves sipping hot cocoa and dreaming of a white Christmas? Nope, those programming guys air hours of shark attacks, sea lion lunches and miles of surf and sand scaring viewers with what might lie right beneath your boogie board during the still hot summer weeks of summer. Of course the bigger question is why do I, a certifiable nut bag who is constantly borrowing the lifeguard's binoculars to determine if that dorsal fin belongs to a big, scary shark, or a kind, happy dolphin while my kids splash in the surf, sit up until 2 AM watching such a terrifying week of blood and horror at the height of summer? Well, it's simple...we aren't going to the beach this summer. With no beach trip I can safely sit on my couch watching Shark Week knowing full well, that even though we have a salt water pool, sharks can't get in there. Can they? No beach trip this summer has certainly alleviated my shark attack fear (oh, and my riptide fear as well), but the downside has been the constant complaining from my children of "everyone else went to the beach this summer". Between our fellow beach vacationers having alternative plans this summer and the addition of a new puppy (who, by the way, has teeth almost as sharp as a Great White), no sandy beaches or ocean breezes for us this year. Yes, it's disappointing, yes it sucks when friends post their happy families having the time of their life at the beach on FB, Instagram and Twitter and yes, no beach sunsets and shark patrol binoculars has left a gaping hole in our hearts, but we will survive. The irony is, the one person who has grumbled the loudest is the one who hates the scratchy sand, the bright sun, the annoying wind and the sticky sunscreen that goes along with every beach vacation. Complaints, moans and groans from the kid who lasts about 20 minutes before he starts begging to go back to the beach house where he can sit inside the air conditioned bedroom and play video games. Regardless of the sensory overload the beach inflicts on Ryan's overly sensitive system, beach vacations have become part of our family's summer time routine, even though for years I was advised to try a trip to the mountains instead. It didn't take long to discover that the beach may not have been the best vacation venue for Ryan. On his first trip to the beach, when he was about two, we were THAT family. The family that inevitably parks their numerous umbrellas, inflatable kiddie pool, cooler, enough toys to entertain the entire beach, and over-sized beach towels covered with sand routinely shaken in your direction, right next to YOU. The obnoxious family that has a crying, whiny child that the stupid, selfish parents refuse to take back to the beach house regardless of the impact it is having on your day. And to add insult to injury, throw in a CD player that played Thomas the Tank Engine (loudly) over and over and over again. Yep, we are, okay, we were, THAT family for many years. It's a miracle that the other beach goers didn't throw Dan and I into the ocean with a bucket of chum attached to our beach chairs. Ryan hated the sun, but he also hated the feel of sun hats and sunglasses which would have alleviated some of the torture. Ryan hated the sand, but failed to recognize that rolling off the towel and into the sand would bring more sand and more wailing. Ryan hated sunscreen, but was too young to understand that crying and rubbing his eyes would only cause the sunscreen to burn his corneas which inevitably lead to more tears, more shrieks, more sand stuck to his face and more beach goers searching for chum. The only thing that soothed Ryan (to the detriment of anyone who had ears) was the Thomas the Tank Engine songs. I promise you, between Ryan screaming, my shouting and the Thomas music, it was the safest, shark free summer in OBX history. Even the sharks didn't want any part of this beach action. As I sat in the sand with Ryan's giant head digging into my chest trying to block out everything beach, Denial sat there soaking up the sun, singing along with Ryan and assuring me that all kids act like this at the beach and I had nothing to worry about. As the sand slowly worked it's way into my "boom box", suffocating the cheery British chaps singing about happy Thomas trains, doubt was slowly working it's way into my heart. I knew this kind of protesting about what most kids love, had to be extreme and not "normal", but I took Denial's advice and hit repeat (again and again) on the slowly dying boom box while everyone else around us moved farther and farther away. Although the sun, the sand, and the sunscreen were not Ryan's friends, the ocean....oh, the ocean....most certainly was. The pull and hug of the ocean tides was the relief my poor, over-stressed boy needed to regulate his taxed out sensory system. As much as Ryan loved the feel of the ocean on his legs, his belly, his chest, there was a down side to that deep pressure, salt water hug. The inevitable rash that comes from the sand, the saltwater and long, loose fitting swim trunks. This burning, itchy rash would typically start on day two of vacation (yep, that's still five more days to go) and of course it took one gentle, salt filled wave to lap up against Ryan's irritated skin for the howling to begin. No matter how soothing the tides may have felt to my sweet fella, it was just not worth the fire burning on the back of his legs. Goodbye ocean....see you next year. Every year, while planning for our annual pilgrimage to the seaside, I would ask Ryan's pediatrician what I could do to prevent the rash from appearing in the first place. He would suggest antihistamines, various creams and lotions and inevitably a different vacation venue like the mountains, the city or perhaps a day trip to the zoo. That's when Denial would stick her fingers in my ears and I would walk out of the pediatrician's office mentally making my list of beach trip items, including the latest lotion that would inevitably prove futile. Yes, I ignored the doctor, yes I ignored my conscience and yes, I pretended each year wasn't as bad as I thought and we would pack up our umbrellas, our cooler, our beach towels, our sand toys and our Velveeta Shells and Cheese and head back to the beach year after year. On one particular beautiful sunny beach day when Ryan was about 8 years old, it took him all of thirty minutes to announce, "I'm done. Let's go back to the beach house." Are you freaking kidding me? It took twice the amount of time to apply sunscreen on moving targets, pack lunches, fill the cooler and drag the beach chairs, towels, boogie boards and sand toys to the desired, coveted perfect beach spot. So when Ryan announced he'd had enough after I finally plopped my exhausted butt in my beach chair I said, "tough luck kid" and ignored his complaints. Needless to say, I couldn't ignore Ryan for long once I sensed the other beach goers hatred filled, chum searching gaze. I tried distracting Ryan with sand toys, snacks, beverages and paddle ball. My tactics worked for about fifteen minutes. The whining persisted, the complaining got louder and my nerves got more and more frazzled. So once Ryan hit melt-down mode, out of complete and utter frustration, he kicked sand at me. Big. Giant. Mistake. Just like a Great White Shark, I saw red and went into a frenzy. I snatched Ryan up, plopped him on his beach chair and screamed, "You just bought yourself an extra hour!". Yep, I decided to punish my child for kicking sand in my face by making him stay at the beach longer...the horror! Most kids would have laughed at such a "punishment", being forced to play in the surf, build sand castles and eat junky snacks as a form of punishment, but Ryan wasn't most kids. To Ryan, that extra hour was punishment as it was for all our friends who were with us. It took years of patience, years of tears and years of me ignoring the pediatrician's advice for a change of venue, but last year between Ryan growing up and accepting that his horribly selfish parents were going on a freaking, happy, smiling beach vacation come hell or high water, last year it all worked out because good old mom finally found the secret to beach peace. Swim jammers. I'm sorry if you were expecting some light shining down from Heaven kind of moment where I buried Denial in the sand and took a leisurely sand free vacation to the mountains. I'm way too selfish for that moment. Nope, the secret to Ryan's beach happiness (and for all who vacation with him) came in the form of swim trunks that fit like skin and don't rub, chafe or cause swimmer's rash. My boy could enjoy the squeezy tight hug of the ocean which made the sun, the sand, the sunscreen and his mother yelling, "Please don't go out so far!", while holding the lifeguard's shark binoculars, much easier to bear. In fact, he really, really loved it. Ahhhhh...finally. Our family, with the exception of one, loves the beach, so no, we have yet to change our vacation venue and the mountains still await us (of course there are snakes in the mountains which one other family member, who happens to be the one in charge of planning vacations) hates. This family wanted to be like all the other fish, heading in the same direction as the rest of the fish in their school. We didn't want to be like the Great White Shark traveling alone being forced to vacation in sensory safe locations. Selfish? Yes. AWEnest? Most certainly. But, until you have lived with the isolated feeling of being that big fish swimming alone while all the other fish swim together putting on their sunscreen without screams of torture, taking the perfect, no family member is scowling because of the wind and sand, beach photo in white shirts and blue jeans (that is so predictable, please, please wear something different) and going about their vacation with the other fish in school not concerning themselves with the fish whose family's needs are so different from theirs, then you can't and you must not judge. It took time, but Ryan has truly learned to love the beach. He wears sunglasses, sunscreen and form fitting swim jammers. And although he may still be the first one ready to head back to the beach house, he lasts much longer than thirty minutes these days. We may have tortured Ryan over the years by subjecting him to environments less than pleasing and this most certainly was in part because we wanted to swim in the same school of fish with all our friends, swimming in a group and heading to the same vacation spot. However, Ryan's torture from sand, sun and saltwater also occurred because the world will always be sticky, scratchy and bright, and trying to adapt to that world while mom is on shark and snack patrol and dad is on riptide watch, is the safest place for my beautiful son to adapt. Being thrown to the sharks alone with only a bucket of chum to cling to and my boy would never survive. Unlike his family, Ryan may never want to be part of a school and he may always prefer to be traveling the waters alone, but my son will never, ever be completely alone....we will always be swimming a few feet behind him. Yes, Shark Week scares the crap out of me which of course is part of the lure. However, I also think the Discovery Channel programmers, marine biologists, and all those who love and fight for the understanding and survival of sharks, want those of us who are uneducated and whose only conception of sharks was created by Steven Spielberg and a mechanical shark in 1975 to realize, that even though sharks may not prefer to go along with all the rest of the fish, sharks have their place in the ocean. Without sharks, the ocean would be filled with fish who all want to be the same, going in the same direction and who fear swimming outside the group. If we can put our prejudices and our misunderstandings aside, we may understand what amazing, strong and beautiful creatures they are regardless if they forego the traditional school of fish and prefer to swim alone.
Coming from a fish who has always preferred to swim in a school surrounded by others pushing me and guiding me to go the same way as them, I am at times saddened, yet inspired by my big fish who cares little of what direction others are heading. He has his own path in mind. Ryan may be traveling in waters often designed for those swimming in a school, which at times makes survival difficult, but he and kids like him have proven to us group folks that being alone very rarely means being lonely and that being who you are, regardless of your differences, takes more courage, more strength, and more survival skills than all the Great Whites freaking us out on Shark Week. |
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