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.
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.
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.
Yearn to feel normal
Hawthorne is Jason's art teacher
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
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.
Keeping it real, raw, and AWEnest while laughing, loving and living in our world
touched by Autism.
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Definition of Awe: