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.
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.
New Year's Resolutions...pfffttt. Every year I come up with at least one or two. Any more than that would destroy my self-esteem because every year I end up blowing the one or two I come up with by mid-January. If I resolved to change anything more, well, that would just make my already hideous Seasonal Affective Disorder a whole lot worse. Every year, without fail, I resolve to eat healthier and freak out less. Eating healthier should be a no brainer, cut out the Oreos and replace them with the occasional apple or carrot. Freak out less, and by this I mean, trying not to over-react, lose my cool, turn into scary mommy, or blow my top. Cutting out Oreos is much, much easier than controlling my freak out...just ask my kids.
Sadly, between the stress of trying to manage three kids' schedules, trying to be the perfect June Cleaver mom (not even close...don't even own an apron and rarely do I have lipstick on when Ward, I mean Dan, comes home from a long day at the office) and the tiniest hint (in the form of horrific mood swings) that my ovaries are starting to slow down, I tend to be more like an unpredictable, active volcano with each passing year. Sometimes, I'm more of a Mt. St. Helens volcano, giving off subtle clues that I could blow and blow big, but, most days, I'm more like Kilauea, always bubbling just below the surface. More often than not, there is a calm, peaceful look about me, but, underneath that façade, I'm a hot, boiling mess way deep down inside.
Like a volcano, the eruption comes fast and furious, with little concern of the damage the eruption may wreak on those surrounding me. I wonder, if a volcano had feelings, would it feel as badly as I do, when the hot magma mess can no longer stay contained and the damage report comes in following the eruption? Poor Ryan has become a bit of a volcanologist (yes, that really is a word), studying the volcano, watching for signs of an impending eruption, that coincidentally, often results right around homework time. Instead of ash raining down over the ruins, it's usually tears, both Ryan's and mine. And, instead of stripped down, burned up trees left in the wake of the volcano's path, it's usually Ryan's confidence and my heartbroken soul that goes up in flames.
It was a group project in Reading that caused the last eruption. A literacy packet where most of the work was suppose to be completed in class within Ryan's small group. Like a good Volcanologist, Ryan slowly came down the steps feeling for trembles in the floorboards with a look of trepidation on his face as he approached the volatile volcano. His eyes darting back and forth for signs of instability. Ok, brief intermission here before I go on. I want you to know that one of the things Ryan takes the most pride in, is his school work and his intelligence. So, before you start planning to level this volcano or have someone you don't like very well jump in the volcano to please The Volcano Gods to prevent more damage, understand that I don't insist on straight A's or Honor Roll status, Ryan puts that on himself. So, now that I have tried to make an excuse for my poor behavior, let's continue. Once Ryan came close enough to the unstable volcano, the tears began to flow as he handed me a near empty literacy packet that was due the following day. I would love to tell you that I kissed him and told him it would all be ok, which eventually, I did, but, not before I went all Mt. St. Helen's on his butt.
"What do you mean you have had this packet for a week and it's empty?"...."Why didn't you complete it in class like you were suppose to?"...."You told me to stop nagging you about homework because it was your responsibility!"....and finally, "Why in heaven's name did you sit in class for a week doing nothing and not tell the teacher you didn't understand?". As Ryan's eyes welled up, he no longer looked like a volcanologist, he looked like an overwhelmed little boy wanting to run from the lava. And as the smoke got in Ryan's eyes causing the tears to spill over and his head sunk lower trying to avoid the volcanic ash fall out, my heart was already sorry for the molten lava that spewed from my overreacting, hot, stupid mouth. The lava and the ash stopped just as quickly as it had begun.
I consoled, I apologized (repeatedly), and I cried along with him. I explained to Ryan that my frustration was not because he didn't understand the assignment, but because he failed to tell his teacher or me that he was confused and he lost an entire week of classwork. When Ryan's sobs finally stopped, and he wiped the ash away from his eyes, through hiccupped tears he said, "It's all my fault, but, sometimes, no matter how hard I try, I just can't find my words." Then he added, "Sometimes people's words just sound like gibberish to me." If a volcano could erupt inward destroying only the lava producer itself, I would have gone up in a heap of flames. My poor boy, who struggles with the need to be right, the need to be perfect, had a hard time admitting he didn't understand and with a social language deficit, he couldn't find the words to say so without fear of recrimination or fear of being scorched by lava.
If only a volcano could count to ten. If only a volcano had a conscience where somewhere deep inside it's crater a New Year's Eve Resolution knocked on it's brain. If only a volcano could shut down as quickly as a mother's guilt ridden heart and lava spewing mouth. If only I could blame the damage I sometimes do on a build up of uncontrollable, gas infused, magma. You see, I did count to ten, I did remind myself about my New Years Freaking Out Resolution, I did remind myself that freaking out gets us nowhere, but even so, I still erupted and I could see that even when the lava had cooled and the ash had settled, plenty of damage had been done. It was time for this unstable volcano to begin to triage.
Although, my hot mouth and boiling hormones are similar to a volcano, unlike a volcano, a short fused mother can summon the same strength to rectify and clean up the damage. I emailed Ryan's teacher who apologized and accepted blame for not checking in with Ryan and went on to explain that he is blending in so well with the other students that sometimes it's easy to forget he may need a little extra support (a blessing and a curse). The next day, Ryan went in to meet with the teacher, on his own, and the assignment was explained with less "gibberish" and extended time was given to complete the assignment. All of that could have happened without volcanic ash fallout. Sigh.
Even though I know some things are harder for Ryan, I still tend to blow my top. As I said before, it's not because I expect perfection, it's not even necessarily because he expects perfection, it's more a result of utter frustration in the moment, when as his mother, I can't reach him...can't help him....can't understand him....can't kiss it and make it better. As Ryan's mom, that is my job, that it what I was born to be....a mother....his mother. So, when Ryan is unable to communicate his needs, his wants, his frustrations because of the hold autism has on his brain, anger and helplessness bubble up inside of me like hot, molten lava until there is nowhere for it to go, but spewing out my stupid mouth. The damage it does, to both Ryan and me, is heartbreaking, but just like the after effects of a volcanic eruption, when everything cools down, and the lava breaks down providing valuable nutrients for the soil, something new begins to emerge and Ryan and I always learn more in the wake of the devastation.
Following this eruption, Ryan learned a new way to communicate with his teacher when he is stuck (a Post It note placed on her desk which is easier than finding his words). Ryan also learned the importance of telling someone when he is confused and how much better it would have been to complete his assignment in class with his group members had he asked for help earlier. As for this unstable volcano, I have always known communicating was difficult for Ryan, but, AWEnestly, when he was able to finally find his words to describe how difficult communicating is for him, well, suffice it to say, I recognized an opportunity to become less Mt. St. Helens and more Mauna Kea (a volcano that has been dormant since 2460 BC).
Regardless of my New Year's Resolutions and my aging perimenopausal ovaries, I will still grab an Oreo over a carrot (like, who wouldn't?) and chances are that when one of the kids leaves an ice filled glass sitting on the table adding yet, one more water ring, I will still freak out, but, hopefully, this volcano will keep in mind the damage that lava and ash can leave in it's wake. So, for the year 2014, I have added one more New Year's resolution. Like Mauna Kea, I resolve to push all my hot magma and lava deep down inside and try and remain dormant as long as possible, at least until my ovaries stop working altogether, then it will be every man for himself.
Keeping it real, raw, and AWEnest while laughing, loving and living in our world
touched by Autism.
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