This is a quick shout out to all the strong, loving, AWEsome moms I met yesterday at the 2014 Day of Pampering at the First United Methodist Church of Mechanicsburg. So many women shared their heartache, their struggles, but, mostly, their joy with me. To quote the beloved Dr. Seuss, my "heart grew three sizes that day". I promised these AWE inspiring moms that I would post the video I shared yesterday since there was a bit of a technical glitch with the audio. I also promised that I would invite everyone in attendance to my house for a glitch free showing along with wine, but, due to my public speaking anxiety, I failed to give the audience my address. I swear, it had nothing to do with my fear of the bill for the wine I would have needed to purchase for these amazing ladies.
I was AWEstruck by your compassion, strength and determination to make sure your intricate, one of a kind snowflake remains visible and that their uniqueness is never lost in the blanket of snow. Remember, even on the days when your snowflake seems invisible to everyone, YOU will always make sure he or she can be seen. "Stand up Mother!" because you are not invisible either. Your child sees you and so does every mother loving their unique snowflake with a "different" ability!
Here is the clip from the Emmys when Temple asked her mother, who believed, "different, not less" to "Stand up mother". Makes me cry EVERY SINGLE TIME.
Minecraft. If you haven't heard of it, then you obviously do not have school aged kids, you do not ever enter into retail establishments and you quite obviously have not fallen prey to social media. In other words, you must be living under a virtual pile of Legos. I admit, I'm no Minecraft expert, but, since Minecraft in the ONLY thing that comes out of Emma and Ryan's mouths these days, I have been dragged into the Minecraft world, with no sword or pick axe to gauge my ears out, so I've picked up on the basics.
From what I have been able to grasp, right before my eyes glaze over from the obsessive Minecraft chatter, you are alone in a virtual world that sort of resembles an island. With little to survive than your bare hands and the various minerals and materials you can find in said world to build shelter, tools, and whatever else you need to protect yourself from the things that go bump in the night. Think Tom Hanks in Castaway, sans Wilson, and throw in a zombie or creeper...or two. There is a creative mode with lots of creative building options to enhance your anything goes virtual world and a survival mode where you also get to build, in order to protect yourself from the zombies, creepers and spiders who are just waiting to take you out. Tom Hanks had no idea how good he had it with only madness barking at his makeshift cave door. And unlike Tom Hanks, in your Minecraft virtual world, you can continue to be alone in your deserted island like world, or you can invite friends to join you.
In addition to the Minecraft game itself, there are also YouTube Videos where people narrate and record their actions in their Minecraft virtual world. The most famous of these is Stampylonghead, with over 1.6 million followers and over 818 videos. This dude, with his horribly overexaggerated and highly excitable British accent, has a lot of time on his hands. I swear, I hear Stampylonghead while awake and in my sleep. This is because Ryan can mimick Stampy's voice to a tee and does so most of the day and in his dreams at night. I swear, Ryan's British accent is so good, he could easily land a role on Downton Abbey. I understand why parents like this Minecraft game. There is a lot of creativity, imagination and wholesome, mostly non-violent fun that draws kids in like bees to honey. As cool as the game is though, I'm ready for a bug zapper.
I had been telling Ryan for months that I thought he should try Minecraft since I read that tons of kids, including kids with an ASD, love the game, but Ryan kept saying it was stupid, because Ryan has a teenage brother who told him it was stupid. Needless to say, this teenage brother, who shoots Nazis in Call of Duty and runs from the police in his Lamborghini while playing GTA (Grand Theft Auto for all you newbs) feels that a virtual Lego type world, of old style graphics, is lame and since Ryan has worshipped Kyle from the moment Ryan was born, Ryan believed Minecraft was stupid too. Until Ryan's little sister built her first shelter and killed her first Creeper. Emma didn't reach "worship" status, but, she did impress her brother Ryan, which is more difficult than taking out a zombie with a diamond sword (we sound like a terribly violent family, don't we?).
Ryan's worship like nature of his big brother Kyle is twofold. One, Kyle has an extremely big heart and he "gets" Ryan, and two, quite simply, is birth order. Kyle was here first, so, Ryan doesn't know a life without Kyle, but, you can bet all your Minecraft diamonds that Ryan remembers life before his little sister arrived on the scene. Suffice it to say, Ryan would never string the words "worship" and "Emma" together in the same sentence.
Prior to Emma's arrival, Ryan had Mommy's attention most of the time. After all, Kyle was older and let's be AWEnest, Kyle was easier. Ryan struggled with sensory overload which lead to meltdowns. Ryan had a hard time communicating, which lead to frustration and subsequently, more meltdowns. In those early years, with all those meltdowns (Ryan and mine), we were more like a run for your life Chernobyl Disaster than a happy go lucky family. So, for a kid who craved routine, who survived on same, and who counted on Mommy to get him safely through his day, a new baby was a swell idea! Poor guy. Ryan had no idea what he was in for, and quite frankly, neither did I.
When Ryan came to visit Emma and I in the hospital after Emma was born, he literally threw a stuffed animal on her head and he did not acknowledge her presence. He was more interested in the buttons that raised and lowered the bed, the nurse call button (we almost got thrown out) and the cookie I had on my tray from lunch. This "pretend she doesn't exist" routine lasted a few weeks, until one day Ryan decided enough was enough and he locked his traitorous mother and screaming, smelly baby sister outside twice in one day.
It was a sticky, humid, beautiful summer day. The kind of day you appreciate in mid-August because you know all too soon, the heat and warmth of summer will soon be replaced with the crisp, cool days of fall. As I sat on the porch swing, sniffing my new baby's head, taking in the fading days of summer, I smiled happily thinking all was right with the world. My smile was quickly replaced with a puzzled expression at the slight "click" I heard at the back door. I saw a flash of red run past the window and I knew in an instant, that "click" was not the sound of summer wishing me well and locking me out, it was my darling son locking me and his baby sister out of the house...with not another soul inside the house.
I slowly got off the porch, trying not to jostle my sleeping princess and went and knocked on the door. "Hey baby, will you unlock the door and let sissy and I back in?", I said sweetly while peering through the window. There Ryan sat on the couch blatantly ignoring me while he happily played on his Leapster. "Ryan let Mommy in", a little more sternly. Ryan got off the couch and I immediately felt relief since I assumed he was coming to open the door. Nope. Ryan climbed on the back of the love seat, looked me in the eye (no trouble making eye contact in this situation) and shook his head no. Well, suffice it to say, that the postpartum hormones kicked in at that point, "Open the #*%$*%# door right #*%$%# now", as veins bulged out of my neck. Still, Ryan sat on the couch, shaking his head back and forth. No way, was his evil mother, who ruined his world, and that no good, smelly, loud, baby getting back in the house. Not until I called Dan, who had to come and let us in, not once, but twice (hormones, remember?). Yeah, it's pretty safe to say that Ryan did not "worship" his sister Emma the way he did big brother Kyle. She was a disruption...a change...a deal breaker.
Over the years, Emma has felt this preferential treatment for Kyle over her when it comes to Ryan's love and affection. Most days she accepts it, and other days, it breaks her sweet, sensitive heart. I once found a birthday card Emma had made for Ryan crumpled up and stuffed under her bed. Drawn on computer paper and carefully folded in half, was a 4 year old's exact replica of our backyard with a stick figure of a Emma and Ryan happily swinging together, which at the time, rarely ever happened. The crayon strokes spoke volumes of this little sister's true desire, to have her brother interact with her, to have her brother play with her, to have her brother look at her, the way he looked at Kyle. When I asked Emma why she didn't give it to Ryan, her dejected little shoulders shrugged and she said, "Because he will think it's stupid.". I told Emma to give it to Ryan anyway. Ryan looked at the card, tossed it on his dresser and said, "It's not my birthday anymore" and went back to his game. As much as I wanted to smack Ryan on the head with the card, I tried to explain how much love and time Emma had put into making his card and that his actions hurt Emma's feelings. This past Valentine's Day when Emma made a card for everyone in our family, except Ryan, I didn't need to ask why and I didn't insist on her running up to her room and making him one. Ryan would have thought the card was stupid (again), unless of course Emma had taped candy to the card. Ryan loves his sister, he just doesn't communicate that love in a way that Emma understands...yet.
Although I have explained autism to Emma and I have read books about autism specifically written for siblings of an autistic child, it's hard for a 7 year old's head and heart to grasp. AWEnestly, some days it's hard for a 44 year old mother to grasp. It's difficult for Emma to understand why Ryan doesn't hug and kiss her like Kyle does. It's hard to understand why cards and pictures made with love are rejected or ignored by him. It's hard to understand why she can connect with with every person she meets, but, not the one person she really wants to...her brother. Then along comes a guy named Steve with his blocks made of cobblestone, dirt, and clay as well as a pick axe and sword to keep the creepers and zombies out of their carefully constructed, mutually adored, virtual world and block by block, a connection has been made.
Who knew the phenomenon called Minecraft could not only build homes in virtual lands, but, Minecraft has helped build a relationship between a brother and sister that once seemed as unlikely as a creeper and zombie sitting down for afternoon tea. A bridge has been built that not only connects their virtual worlds, but, has also connected their hearts. Emma had to go to a deserted world and dig deep to find the proper materials to build a pick axe that was strong enough, and unique enough, to finally break through the wall of autism and find her brother. And Ryan, who for so many years, kept building his house with thicker, stronger bricks, finally let his little sister in and has promised her that he will continue to do so, as long as she doesn't chose a user name that is "stupid and ridiculous".
Now I'm the creeper standing outside their real world, outside Ryan's bedroom door where they play Minecraft for hours, hoping that neither one of them senses me and comes at me with their diamond sword. As I slowly crack the door while creeping, I see Emma on the top bunk, the glow of the iPad illuminating her smiling, happy face. On the bottom bunk is Ryan, wrapped from head to toe in his Angry Birds blanket, the only sign that someone is under the blanket is the perfect British accent coming from Ryan's mimicking lips. As an unwanted, spawned creeper, I quietly and stealthily push the bedroom door open wider, risking my safety by breaking the darkness with the hallway light in my attempt to get even closer to this somewhat magical moment. As I hold my breath, trying to stay hidden, I finally hear, with no trace of Stampylonghead's British accent, Ryan yell, "Hey Emma, can you come into my world?". As I stifle my tears at the deeper meaning to those long awaited words, I swear Emma feels the dual meaning too. I can almost feel the joy emanating from Emma's heart as she happily yells back, while tap, tap, tapping her iPad, "I'm coming Ryan! I finally found you in your world!".
I recognize that when the Minecraft obsession ends, so may the intensity of the connection, but, for now, Ryan is not locking his little sister out on the back porch...he has finally...finally, let her in. I hope that whatever zombies and creepers lie ahead in the real world, Ryan will tackle them with a diamond sword in one hand, while holding onto his little sister with the other, because alone he can build a shelter, but, together they can build a fortress. A fortress that hopefully, will keep out their mean, old, creeper mother who makes them occasionally leave their virtual world for the real one.
They say that French is the "language of love", due in part to the stereotype of the French as hopeless romantics and in part because people speaking French just sound sexy. If the French are such masters of love, then don't you think it's ironic that it was the French who came up with a game of love that determines if the object of your affection returns your affection based on flower petals and chance? Come on French people, don't you have something a little more romantic or statistically sound than petal plucking? I remember regularly raiding my poor Grandmother's flower beds for daisies as I plucked petal by petal, mumbling "he loves me, he loves me not" while picturing myself as "Jill" and having Shaun Cassidy "walk me home" while singing Da Doo Ron Ron to me. If only love was as easy as plucking daisy petals.
I remember back in my early Google obsessing days, when I would enter "signs of autism" in the search bar ten times a day, I would typically stumble upon phrases such as "fails to show emotion", "does not reciprocate emotion", "egocentrism", and "fails to show empathy". The name autism itself comes from the Greek word "autos" which means self, which just increased my Googling anxiety. My brain would start on it's obsessive train of thought and it was like a full steam ahead locomotive. Is Ryan only aware of himself? Is Ryan unaware of my love for him? Can't Ryan feel how much I love him? Is Ryan unable to feel happy, or sad, or scared? Does this autism thing mean Ryan doesn't, or can't love me? Why I would go back to this agonizing searching ten times a day is beyond me. I guess I hoped to eventually find a website that negated all this "lack of feeling" fear I had. So, I just kept Google searching, looking for the words, "He loves me". Little did I know, the proof of Ryan's love was in the hand that I held, the brief kisses that I got and the snuggles that he allowed me to give him. My "proof" was standing right in front of me.
One of the biggest misconceptions about people living with autism is that they don't feel or express emotions...an almost robotic type personality. People with ASD feel the same emotions you and I do, they just may express or communicate those emotions differently. That difference doesn't mean people with an ASD feel any less heartache, joy, disappointment and love than any neurotypical person. In fact, I believe Ryan feels more than the average person because he is so extremely sensitive, but, how those feelings, those emotions are expressed may look much different than what someone without an ASD has come to expect.
Many people with an ASD are also able to understand the emotions of others if those emotions are exhibited in a direct way such as laughter, crying, or yelling. Ryan has a hard time with more subtle emotions that are evidenced through body posture, tone of voice, and facial expressions. Ryan can easily recognize my angry "freaking out" emotion, by my shouty voice, the steam rolling out of my ears, and the spittle flying from my mouth. Ryan also understands that my tears equal sadness which, depending on what my tears are for, may cause him to feel sad too. And sometimes, when I am laughing, Ryan laughs too, then wonders why he is "fake laughing when it feels uncomfortable". Although identifying such extreme emotions comes easily for Ryan, he may not be able to recognize the sarcasm dripping from my voice when he asks for his fourth Oreo and as I once again relent to his poor eating habits respond with, "Why not?". Ryan happily grabs the Oreo and loves me for what he perceives is my lack of concern in him eating yet more trans fat. Ryan also may not recognize if my shoulders slump when I'm feeling dejected by Shaun Cassidy after my petal plucking assured me that Shaun Cassidy, "loves me not". Ryan's struggle with recognizing these emotions is more about a lack of ability than a lack of feeling.
Ryan's responses to other people's emotions almost has a direct correlation to how connected he is with a person. Ryan certainly understands sadness when he hears a story that is sad, but, if that story doesn't directly effect him, he may not respond in what most of us would believe an "appropriate" way. Perfect example. Last week there was a story that went viral on social media about a father who found out he had terminal cancer. Once this father received his grim diagnosis, he decided to write 856 notes to leave in his young daughter's lunchbox, so she would have a note from him every day until she graduated from high school. As I read the story, I began to cry and was so overcome that I left out a little sob. Ryan immediately came to me, got all up in my face (literally our noses were almost touching) and said, "What's going on here?" obviously concerned that I was upset. I shared the story with Ryan and instead of saying, "Wow, that is sad!" or perhaps getting a little choked up himself, he immediately said, "touching moment, touching moment" in his very best Goldmember voice from Austin Powers. Needless to say my tears were quickly replaced with hysterical laughter. Ryan knew the story was indeed a "touching moment, touching moment", and I'm sure in his mind he thought how sad it would be if his father was sick and dying, but, the story wasn't about Ryan or his dad or anyone that Ryan personally knew, so the story had very little emotional impact on him.
In the book, "Look Me in the Eye" by John Elder Robison, there is a section in the book when Mr. Robison discusses the perceived lack of empathy and emotions of people with an ASD. He tells of a time when he overheard his mother and her friend discussing a child who had recently been struck and killed by a train. Mr. Robison explained that upon hearing this news, he felt relieved that it wasn't him or his brother who had been killed by the train, so, he smiled. Since Mr. Robison was unable to communicate his thoughts and feelings, his mother and her friend just saw him smile and thought he was a psychopath for grinning about a child's accidental death. In his mind, Mr. Robison didn't know this child, so he did not feel terribly sad. Mr. Robison explained that when he was younger, he often felt people who cried about stories that involved strangers, were being fake, because why would you cry about someone you don't know? Just like Ryan's "touching moment", Ryan didn't know this dying man who was writing notes to his little girl, so although Ryan "got it", although Ryan "felt it", how he communicated it was not what most would expect as a typical or "appropriate" response. For Ryan, and many kids like him, it's all about the connection. When we lost a beautiful dear friend of ours, at the incomprehensible, inexplicable age of 8, through his hiccuppy sobs Ryan said, "But, she barely lived". Four powerful words that my boy communicated, that my boy understood, that my boy felt to the deepest part of his soul for people he knew, for people he loved, for people with whom he had a connection.
Yes, Ryan "feels". He feels anger, sadness, betrayal, disappointment, anxiousness, joy, love, and jealousy. Ryan also recognizes these emotions and he cares about those feelings in the people he loves, the people he trusts, and the people who love him. Ryan's feelings are not impaired, diluted, or inappropriate, but, sometimes, how Ryan communicates his feelings do not fit into what most of society believes is "acceptable" or "appropriate". I wonder who ever made up the rules of just how a person is suppose to communicate their feelings...not your feelings, not your grandma's feelings, their own individual, unique feelings.
It was once suggested to me that perhaps Ryan would do better communicating his feelings to a therapist who specializes in working with kids with an ASD. I'm not saying that it isn't a good idea, for sometime down the road, but, for right now, here is EXACTLY how I'd imagine Ryan doing in a stereotypical therapist setting:
Therapist: "So Ryan, would you like to lay down on the couch and relax while we talk?"
Ryan: (in a disparaging, how could you be so stupid and still be a doctor voice) "Why
would I do that? It's 4:00 in the afternoon and I don't lay down until 10:00
at night in my bed, at my house, with my Angry Birds blanket and my pillow!"
Therapist: "Ok, fine, then why don't you tell me how you feel Ryan?"
Ryan: "Well I feel scratchy from these jeans my mom made me wear today and I feel
blind from the sun coming in your window and I feel dry from the heat in this
Therapist: "Well, how do you feel on the inside Ryan?"
Ryan: "Well, right now I have a cold so I feel kind of juicy (yes, this is a word for
snotty) and my guts feel kind of gassy."
This conversation would be followed by the sound of my money flying out the therapists window.
Ryan has feelings and he understands feelings, he just sometimes struggles with the language of feelings. I have always been so blessed because Ryan is very affectionate with me...he hugs, he kisses and yes, he tells me "I love you so much Mommy". Some kids with an ASD have a much harder time expressing their feelings and allowing hugs, kisses and cuddles. This does not mean they don't feel love and they don't know love....they just struggle communicating that love in a way a neurotypical person, would prefer, but, for a child with an ASD, the way they love, the way they express emotion, feels perfectly "normal" to them. There are occasions where I am almost knocked to the ground with one of Ryan's hugs and there are times when my arms are quickly brushed away, perhaps at a time when his overloaded system is feeling too juicy, too scratchy or too gassy. For Ryan, some days, "He loves me", some days, "He loves me not" (yesterday when I forgot him at school, it was clearly a "not" day which is another blog post entirely).
Please don't ever think that people with an ASD don't feel like you do, because they do. They may not say it, they may not show it, but they FEEL it, so don't ever, ever sell them short. John Elder Robison said, "Autism is a COMMUNICATION disorder, not a "lack of feeling" disorder". Ryan's language of love may vary from mine and yours and chances are, he will not be the next French Casanova, but, I promise you, that even Ryan could have told the French that petal plucking is an "utterly ridiculous" way to determine if someone loves you. Although, Ryan could look at a flower and in an instant determine the number of petals and whether I should start with "He loves me" or "He loves me not" to get my desired answer about his love for me, Ryan would probably skip all that nonsense and in his best Austin Powers voice tell me, "Yeah baby". Yep, he loves me.
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.
Santaphobia, an overwhelmingly, terrifying fear of Santa Claus may not be found in the DSM-V as a true phobia diagnosis, but, oh it is real. Just check out Ryan hiding behind the fake presents at Santa's faux workshop at the mall. We do not have one photo of this child sitting on Santa's lap. Not even one of those crying, screaming, reaching for Mommy photos that are so funny to look at when the kids are obnoxious, not afraid of anything, teenagers. Nope, Ryan wouldn't go anywhere near that jolly old elf. Ryan didn't care about Santa's twinkling eyes, his merry dimples or his beard as white as snow. It also didn't matter if Santa had a sack full of toys or a handful of candy canes, my boy wanted nothing to do with him....then this year at the age of 12 (yes at 12 Ryan still believes in Santa...don't judge) a small break through occurred on a cold winter's night.
We have a very cool local fire company that cruises through our township with Santa on the front of the firetruck stopping for kids to tell Santa their Christmas wishes and handing out candy canes. For the longest time, the firetrucks came right past our house which was so AWEsome! We would forego our coats and hats and run outside, camera in hands to capture the moment. While the rest of the family was running to Santa, Ryan was running from Santa....fast....upstairs...to the bathroom....where he immediately locked the door. At first, with Ryan's sensory sensitivities, I thought his terror stemmed from the occasional wail of the siren from the firetruck that let kids know Santa was on his way. After Santa was safely down the street and out of sight, I would unlock the bathroom door and find Ryan cowering on the floor hands over his ears, so it seemed like the siren fear was a plausible theory. However, the siren theory didn't explain Ryan's fear of Santa at the mall, Santa on the street corners, or Santa who visited the holiday parties at Ryan's school (which by the way, he hated....because of Santaphobia). Ryan's fear of Santa was extreme and puzzling....until he finally found the words to tell me.
Many kids, especially toddlers have a fear of Santa Claus or people in costumes, it's a pretty common fear, but I always thought it was funny that Ryan had no fear of the characters at Disney World, Chuckie Cheese or those creepy fake characters hitting you up for cash on the streets of New York City for a photo op. Ryan's fear was strictly Santa Claus. Perhaps his phobia was not Santaphobia, but, actually Pogonophobia which is a fear of beards. Mickey and Donald don't have beards, Chuckie Cheese appears to shave daily, but, Ryan has known other people that have beards and these folks' beards did not cause Ryan to run away and hide in the back of the car. The other possibility may be Hagiophobia which is the fear of saints. After all, Santa Claus is Saint Nicholas, but, since we know so few saints, it's hard to test that theory. Then I started to wonder, if maybe, Ryan hid under the Christmas tree one cold, winter's night as Dan and I watched one of our favorite adult holiday movies of the season, Bad Santa. Billy Bob Thornton as Santa Claus would strike fear in the bravest of children.
Bad Santa, is without a doubt, the most inappropriate, raunchiest, wrongest (horrible grammar, but trust me, "wrongest" is fitting) Christmas movie out there, and yes, I have to admit Dan and I watch it. Ok, fine, we own it. Ok, fine, whatever, we own Badder Santa which is even raunchier and while I'm sitting in the confessional booth, I may as well admit to rewinding some of the wrongest scenes and laughing until I cry. I know it's inappropriate, I know it's un-Christmasy, and I know there is not a Badder Santa around than Billy Bob Thornton, but, my gosh it is pee your pants funny. I promise that every time we have watched it, Dan and I made sure that the kids were busily occupied or sleeping. Which is kind of hard to believe since by the age of five, our kids could quote all of the curse words Clark Griswold rants at the end of Christmas Vacation when he receives his Jelly of the Month Club subscription. I guess a frustrated father during the holidays is acceptable in our home, but, fortunately we draw the line at drunken, cussing, fornicating Santa Claus. Maybe one night, Ryan snuck under the Christmas tree as Dan and I watched Bad Santa and heard Billy Bob Thornton dressed as Santa drop the F bomb as some innocent child sat upon his knee or maybe Ryan caught a glimpse of drunken Santa beating the stuffing out of the fake reindeer after crawling off the escalator in a drunken stupor. Or maybe, it's not Billy Bob Thornton's Santa that Ryan worries about, it's the Santa who actually puts the presents under his own tree that freaks Ryan out a bit.
As any parent knows, the holiday season can be a time of stress and madness. All the expectations that the likes of Martha Stewart, Nate Berkus and those horribly perfect, crafty moms who pin away on Pinterest, put upon us mothers are ridiculous. Trying to make the most wonderful season for children even more wonderful by baking the right cookies, making gingerbread houses that Hansel and Gretel would be jealous of, decorating the house with enough lights to make your neighbors wear sunglasses at night, and trying to deliver on the, all so important, Christmas Gift List. Christmas is after all, the most wonderful time of the year, which begs the question, why do we try and kill ourselves to make it more wonderful? I would love to blame it on Facebook and Pinterest, but sadly, I have been trying to make Christmas perfect long before social media pressed upon me the importance of such a task.
With all the holiday stress, all the holiday perfection, the one guest who never fails to show up over the Christmas holiday, completely uninvited is good old Denial. Yep, Denial constantly reminds me that Christmas time is a magical time for children and that all children feel the same way about Christmas....complete and utter JOY! With Feliz Navidad pumping out of the stereo, as I baked yet another batch of Christmas cookies that will be found in the freezer in April and tossed in the trash, Denial would yell, "Yes, sure, the lights, the decorations, the changes in routine may be difficult for a kid on the spectrum, but Christmas ONLY comes once a year, so you have to make the most of it!". It doesn't matter that even with Denial putting such notions in my head, in my heart I often wondered if all the holiday madness was too much for a boy who hates change, who has a photographic memory and remembers exactly what you did last year, so, heaven forbid if you don't remember the precise glass he drank his special Holiday Punch out of, and who loves his family, but in small doses, not everyone all at once.
Yes, Denial was there forcing mittens and a hat on a three year old boy as I pinned him down amongst the Douglas Fir at our annual "Find the Perfect Tree" outing at our local Christmas tree farm. Denial also helped me stuff my boys' flailing arms into sweaters and stiff shirts for our annual Christmas card photo begging Ryan in my best Grinch like voice (with swear words to match Billy Bob Thornton) to "just sit still for five minutes" while he yanked, tugged and wailed at his scratchy, yucky clothes for the perfect family photo (if you happen to get one of our cards, know that the picture on the card is a fallacy). Denial has sat shotgun next to me as I have dressed the kids and taken them to sit on Santa's lap at the mall, assuring Ryan that Santa is not scary and begging him to sit on his lap, just one time in order to capture another phony photo. And Denial is also there every year, including this one, when I beg Ryan for his Santa list and race around trying to fill his near empty list with things I hope he likes.
Ryan never really played with toys, not in the way a neurotypical kid does, so Christmas shopping has never been easy. Santa would end up "making" toys, and wrapping them up, just so Ryan had something to open. Most of the toys would be tossed aside once the one and only coveted electronic device or video game was opened. Even when Ryan was little, if the toy didn't beep, light up or provide him with sensory stimulation, he wasn't interested. The one exception was wooden blocks, which Ryan would scatter on the floor then roll his body all over them for sensory feedback his body was craving after tolerating another Christmas Season with Bad Santa. Of course, I did have my Good Santa moments and I tried to be a fair and equitable Santa. Santa didn't feel it was "fair" if Ryan's siblings had more gifts, more presents or more money spent on their gifts, even though the gift receiver could have cared less. Even this year, Ryan has three video games on his list and that's it. Poor Dan stood in line on Thanksgiving night (yes, the horror....we broke the "No Shopping on Thanksgiving Rule" and as evidenced by the wait time at the check out, clearly hundreds of others did too) to score Ryan an iPad Mini. A $300 item that wasn't even on Ryan's list, but Santa thought he would like one. The Mini was returned the next week when Ryan assured me he did NOT want an iPad Mini and if he got one he was selling it. Even Bad Santa knows that's a bad idea.
Perhaps Ryan's Santaphobia didn't stem from an accidental viewing of Billy Bob Thornton as Bad Santa, maybe the Santa Ryan fears is the one who tries so hard to make Christmas perfect for him and his siblings that she winds up behaving like a demonic elf. Ryan loves Christmas. He loves all the treats, the traditions, the Christmas shows (especially The Grinch, ironic isn't it?) the presents and the music. What Ryan's mother needs to tell Denial is that Ryan is happy celebrating Christmas without a list of exactly 10 gifts (no more no less), a perfect Christmas tree, a perfectly candied gingerbread house, Martha would be jealous perfect cookies and a perfectly posed family on a phony Christmas card. Maybe if Mom's Atelophobia (the fear of imperfection) would subside, so would Ryan's Santaphobia.
As for this holiday season, Ryan still suffers from Santaphobia, but, he had a bit of a breakthrough this year. Although Ryan started the evening off hiding in the car while we all went and greeted Santa on the next street over (with all the housing development, Santa can no longer hit every house, you have to meet him on the corner), some progress was made. When I told, the very young, very hip, very cool Santa about Ryan's phobia, he jumped down from his perch on the fire truck, gently walked to the car and wished Ryan a Merry Christmas with an outstretched white gloved hand holding a candy cane as a peace offering. When Santa asked Ryan if he's been good, Ryan got out of his hiding spot, made his huge, trying not to smile face, and with little to no tremble in his voice, Ryan said, "Pretty good". With that, young, cool Santa high-fived my boy and walked back to his handful of tiny, waiting fans. As Santa walked away, Ryan was grinning from ear to ear, no longer trying to hide his Christmas joy. Ryan immediately scripted in his best Agnes voice from Despicable Me, "He's nice, but scary, like Santa."
Ryan then assured his worried, guilt ridden mother, I mean Santa, that his Santaphobia didn't stem from his Atelophobic mother, or his concern if he'd been naughty or nice, and he didn't see Santa as the pre-curser of Mommy losing her holiday mind. It wasn't the fear of the beard or the fear of saints. Ryan's fear came from the fact that "Santa is a stranger who creeps down your chimney, comes into your house when you are sleeping and that's just creepy." For someone like Ryan, who thinks so logically, a man dressed as a giant elf, regardless of his degree of jollyness, who breaks into your house when you are sleeping, should not be someone whose lap you sit upon, but someone you should run and hide from. So, although Denial and I may have contributed to Ryan's Dentrophobia (the fear of Christmas trees) after torturing him year after year seeking the perfect Christmas tree and I may have ruined his chances of being a model due to Fotografizophobia (the fear of having your photo taken) from all those holiday card photo shoots that went up in flames, I had ABSOLUTELY NOTHING to do with Santaphobia. Whoosh. Even though, I have provided Ryan with years of therapy material, I think I have also helped him develop phenomenal coping skills. That most certainly make me Good Santa, don't you think?
So, if five years ago, someone would have asked me if I'd be interested in blogging, I would have responded with a, "No thank you, I don't think I'm the kind of girl you'd want holding a chain saw, plus, I've never really liked the flannel Lumber Jack (or Jill) look.". After I received a, "What the heck is she talking about look?" by this hypothetical person, and said person then clarified that the word was "blogging", not logging, I probably still would have had a blank, clueless look in my eyes because five years ago, the words "blog", "blogging" and "blogger" never entered my simple mind. Once my simple mind grasped the meaning of blogging, I probably would have still declined the opportunity to blog because after all, what could I possibly have to write about, I mean blog about?
Then into my life, without an invitation walked, The A Word with Denial on one side and Clueless on the other. I had to spend a little time with Acceptance after those three arrived on the scene, but over time, a fire began burning inside of me that no stack of burning logs could ever match (no pun intended). Those three uninvited guests that came and swooped into my life, helped me find my purpose, my passion, my voice and, eventually, my blog. Although, Autism, Denial and Clueless helped me find the words, my inspiration came from a beautiful, anxious, misunderstood boy that was, and is my heart. My passion, my fire, was ignited by Ryan.
Bloggers tend to blog about something they feel passionate blogging about (Wow! That sentence will not win me a Pulitzer.). Educating others about ASD has become my passion and blogging has given me the platform to share it. I am grateful for every word, typo, grammatical error and self-deprecating comment I have blogged, because it has turned my passion into my purpose. This blogging, (not logging...although log rolling might be kind of fun to try...as long as I don't have to wear flannel) has become more than I ever imagined.
Occasionally, we bloggers (funny, how five years ago I thought a blogger was a logger and now I define myself as one...a blogger that is, not a logger. No flannel for me.) invite a guest blogger to post on our site. Someone whose words evoke a similar passion to the blog owner. Someone whose words may very well make the blog owner's words look as mundane as a Britannica Encyclopedia. Someone who most certainly is going to steal the blog owner's spotlight. Why in the world would I ask a guest blogger to share HIS words on MY blog that will make my voice sound like Charlie Brown's teacher, "wah, waah, wah, wah"? The reason is simple, no matter how much I read about autism, how much I try and educate myself and others about autism, I will never comprehend what it is like to live with autism, but, my guest, Scott can.
Meet Scott Lentine. Scott is a 26 year old young man with high-functioning autism (PDD-NOS/Asperger's Syndrome) from Billerica, MA, just outside of Boston. Scott graduated from Merrimack College magna cum laude with a Bachelor's Degree in Religious Studies and a minor in Biology. Scott is currently an office intern at the Arc of Massachusetts in Waltham, where he strives to persuade lawmakers to pass key disability resource legislation to improve the lives of people with developmental disabilities. Scott loves dogs, traveling, the beach, meeting new people and going to the movies. When Scott isn't traveling or haggling with lawmakers, he is writing....poems and songs. Scott has found a beautiful way to put his experiences, his voice, his words into songs and poems and today, with Scott's permission, I will share Scott's words with you.
Just a Normal Day
Never knowing what to say
Never knowing what to do
Always looking for clues
Just a normal day
Totally perplexed with everyday life
Always on edge never certain
I wish I could lift this curtain
Needing to constantly satisfy my
need for information
Always online searching for new revelations
Going from site to site
Obtaining new insights every night
Trying to connect with people my
Attempting to reveal my unique
But ending up alone and
Feeling like my needs a total
Just a normal day
Can't You See
Can't you see
I just want to have a friend
Can't you see
I need the same connections in
Can't you see
I want a good job
Can't you see
I need to have stability and
independence and be part of the general mob
Can't you see
I want to be independent on my
Can't you see
I want to be able to have my own
Can't you see
I want the same things as
Can't you see
I want t be appreciated for myself
The Ode to the Autistic Man
Try to understand the challenges
that I face
I would like to be accepted as a
human in all places
Where I will end up in life I don't
But I hope to be successful
wherever I go
I would like to expand my social
skills in life
Making new friends would be very
Stand proud for the autistic man
For he will find a new fan
I hope to overcome the odds I
Increased acceptance will lead
me to a brighter day
By the age of 20, I will have made
I know in the future, life will
continue to be an interesting ride
I have made new friends by the
I will be given tremendous respect
by my family and peers
I hope to get noted for bringing the
issue of autism to the common
So that autistic people can be
accepted in this great land
Stand proud for the autistic man
For he will find a new fan
I hope to overcome the odds I
Increased acceptance will lead
me to a brighter day
AWEnestly, I could have never put those words together so beautifully. Thank you Scott, and I assure you, with these words, you most certainly have found a "new fan". Please add me to your list of fans along with the likes of John Elder Robison, Melissa Manchester, Tom Rush, Jonathan Katz and John Sebastian. If you would like to follow Scott's blog and read more of his heartfelt words, check out his blog at http://scottlentine.wordpress.com/
I have to say, I'm really glad I chose blogging over logging, flannel shirts aside. Thanks to this blogosphere I have entered, I have met truly wonderful people like Scott who share my passion. T.D. Jakes said, "If you can't figure out your purpose, figure out your passion. For your passion will lead you right into your purpose." Scott and I have very different voices, very different perspectives, but in this blogosphere and beyond, our passion and our purpose have collided which is an incredibly cool thing. Even cooler than log rolling and climbing big trees with spiky shoes. Thanks again Scott...keep writing, keep educating, keep advocating, but most importantly, keep being you!
I would love to tell you that like my son Ryan, I am a non-conformist, a marches to the beat of my own drum kind of individual, but, alas, I am not. I am more of the follow the crowd, jump on the bandwagon, wear the latest trends (then years later, laugh and hide all photos out of shame and horror, or better yet, embarrass my teenage son with my
trendy fashion choices) kind of girl. I'm not proud that I regularly wore an all black "cat suit" unitard with cut off Levi jeans while proudly flouncing my latest spiral perm curls. No, I'm not proud, but I am AWEnest....AWEnest and somewhat ashamed of my "follow the crowd" persona. Although, I can happily report that my black cat suit unitard is retired (unless, of course you count Spanx), I'm still a jump on the bandwagon kind of girl. As an autism mommy blogger, today I sit blogging in my skinny jeans tucked inside my ski boot looking Uggs (both of which I swore I would never wear) and I feel compelled to jump on yet another bandwagon. A bandwagon worth blogging about. If I let this wagon pass, without adding my two cents (really, my two cents are probably only worth about a half pence, which by the way, England stopped making in 1984 because what the heck can half a penny buy anyway....certainly not an all black unitard or a spiral perm) I would become an outcast among all other autism bloggers. Then I would be all alone in my skinny jeans and Ugg boots waiting for the UPS man, or as I like to call him, My BFF, to deliver my new high heeled sneakers from Zappos (I swear, I will never...I hope).
The latest band wagon among the autism community has been to gang up and beat the hell out of the beloved puzzle piece that is Autism Speaks. Wow! The puzzle piece was smashed, stomped, tweeted, blogged and flogged last week. Every blogger, advocate, parent or adult living with autism had something to say...and most of it wasn't pretty. The controversy started after Autism Speaks co-founder Suzanne Wright wrote an editorial on the eve of the first ever "Autism Speaks to Washington" Policy and Action Summit in Washington, DC. Silly, rich, Suzanne used words like "monumental health crisis", "national emergency", "despair", and "not living". Wow Suzanne! I had no idea! As I watched Ryan board the school bus this morning smiling from ear to ear with who knows what going through his head, he did not look like he was in "despair". As I joyfully Christmas shopped for Ryan later that afternoon, I sure felt like I was "living" and not just "existing". Had I only read Suzanne's piece earlier, I may have recognized that my life, and my son's life was verging on a "national emergency".
I am fully aware that autism, or ASD, is a "spectrum disorder", I wonder though if Suzanne and the folks at Autism Speaks know this? They certainly must since they chose the puzzle piece symbol to reflect the mystery and complexity of autism as well as to represent the diversity of each individual affected with an ASD. Autism Speaks is the most recognized autism organization, or charity if you will, with lots of money, lots of celebrities, lots of researchers and lots of media in their corner, so how could they not know that people living with an Autism Spectrum Disorder are as unique as every puzzle piece? And that in order to "solve the puzzle", each piece must be regarded equally. With all the information and all the money that is Autism Speaks, I would think that Autism Speaks must be aware that not all children and adults living with autism feel like a "national emergency", that perhaps maybe folks living with autism think Suzanne and her cronies at Autism Speaks are the cause of the "monumental health crisis".
As a mother of a child with an ASD, I am grateful every day that although autism is a piece of Ryan, there are many more pieces to my AWEsome son, and some days, autism is not the mysterious, doesn't fit puzzle piece, it's just an average corner that completes the entire puzzle. I understand this is not the case for all children and their families, for some, autism is the key piece, however, as an organization designed to advocate and help kids who fall on both ends of the autism spectrum and everywhere in between, words need to be chosen wisely Suzanne. Words need to represent all the people, adults and children, that Autism Speaks claim to support, especially when Autism Speaks professes to be "speaking" for those who can't. This "speaking" must feel like a foreign language to Suzanne and her staff since none of the people Autism "Speaks" for can be found on any of the the Autism Speaks Boards or within it's leadership. Perhaps the real missing puzzle piece, is the non-existent voice of those with an ASD in the Autism Speaks organization.
One of the key puzzle pieces to the Autism Speaks organization was lost last week as a result of Suzanne Wrights' poorly chosen words as well as a history of Autism Speaks blunders. John Elder Robison, Best Selling Author, Autism Consultant and Educator, and adult living with autism, resigned from the Autism Speaks Science and Treatment Boards last week due to the varying differences between his views of what it is like living with an ASD and the beliefs, ideologies and overall mindset of the folks at Autism Speaks http://jerobison.blogspot.com/ . Mr. Robison had hoped to change the views at Autism Speaks by using his own life experiences, his "gifts" as well as his "disabilities" to change the tone of a very controversial organization. It would appear his words fell on deaf ears. Ironic that Autism Speaks is supposedly "speaking" for those with no voice, yet time and time again, they have proven that with all their speaking, they do very little listening.
Mr. Robison concluded that Autism Speaks, although in a position to advocate and speak for children and adults living with autism, clearly is not listening, so he bowed out. What a shame. Maybe Suzanne Wright needs more people living with an ASD on her organization chart. Maybe instead of screwing things up with her horribly misguided words in a march on Washington, Suzanne Wright should have had someone living with an ASD use their own words, their own voice. Perhaps people living with autism can "speak" and regardless of your position on the "Org Chart" Suzanne, maybe you need to listen. Although there are many children and adults living with autism that struggle day in and day out, and this struggle takes a toll on their families, there are just as many people living with autism who don't think they have an "autism situation" or a "problem". People who view their autism as a piece of their big picture, not the mysterious, doesn't quite fit, puzzle piece. I don't know of any other organization that is designed to advocate for a group of people that's misconception of those people is so off-putting that the very people they purport to serve, holds them with such disdain that they create their own group. An Anti-Autism Speaks group, was created by folks living with an ASD so that the true voices of autism can be heard http://autisticadvocacy.org/
Many higher functioning adults living with an ASD, feel that Autism Speaks spends too much of their millions of dollars (reportedly 44%) on research, and much of these research dollars are not spent on ways to improve the lifestyles of people living with an ASD, but to prevent people with an ASD from existing in the first place. For example, prenatal testing that may reduce a couples chances of having a child with an ASD. This compares to the reportedly 4% of Autism Speaks budget that goes to Family Services to help children, and adults with an ASD that are already here. Some argue that Autism Speaks' goal of "eliminating" autism prays upon parents' fears and stereotypes and that their fundraising tactics enhance these fears with families and the general public. Words like "burden", "despair", "disease" or "defective" do NOT pertain to my son, yet Autism Speaks is "speaking" for him, "speaking" for my family and that is the misconception the public "hears".
I do not have an ASD. I do not know what it is like to have a "neurological difference" that varies from the majority of folks in the world, so I cannot SPEAK to what living with an ASD is like. As a mother of a son with an ASD, I do HEAR and I do LISTEN...to my son's words...to his feelings....to his heartache....to his joy. While listening, I have never heard Ryan complain that he felt he was just "existing", nor have I heard him utter words like "despair" or wonder if he was part of a "monumental health crisis". Ryan feels like Ryan. A boy who loves video games, music, math, and despises art with every fiber of his being. A boy who loves his mother to the sun and back and is fiercely protective of his little sister. A boy who cries at the thought of his brother, his best friend, leaving for college in a mere two years. A boy who has two parents that love him and believe in him and fight for him. A boy who does not feel like there is a piece to his puzzle that is a mystery. A boy who believes all his pieces complete the picture of who he is, and not one piece has any more importance than the next. A boy who believes that autism is part of his "genes", and that these "genes" make some parts of his life a little tougher, but these autism "genes" have also given him gifts. Gifts that those of us without the mysterious puzzle piece gene, can not begin to fathom.
So yes, even though today, I jumped on the "Wow, Suzanne Wright of Autism Speaks, I can't freaking believe you said that stuff out loud", I am not denouncing Autism Speaks (like they would really care about my half pence anyway) because I think they have done a lot of good in many areas. Autism Speaks has helped enact legislation that forces insurance companies to pay for autism services that were once out of pocket expenses (still have a looooooong way to go on this one, but is has started). Autism Speaks has raised awareness of autism and although some of their tactics have basically sucked, it still has people talking, and talking often leads to understanding and to change. A monumental change that must be forthcoming is that if Autism Speaks continues to "speak" for all individuals living with an ASD, than I hope it shuts up long enough to start listening. Listening to those who are living with an ASD and putting their voices on Autism Speaks' boards and in their leadership. Listening for ways to help gain acceptance and not always touting the awareness of differences for people living with an ASD. Listening to the joys and the successes and not always focusing on the hard ships and the heartaches may be the key to a truce between the autism community and Autism Speaks.
I have one child with an ASD, so I can only speak to my family's experiences. I am in no way diminishing the struggles that many families experience day in and day out with an autistic child, but as an organization designed to support all people living with an ASD, Autism Speaks need to stop speaking and listen. Please, just stop speaking and listen.
Just like any child, my son has had his share of heartaches and successes. Although I may not know the inner workings of Ryan's brain, I think I know his heart better than anyone. Most days Ryan is proud and confident of who he is...the entire picture....not the pieces. Knowing his heart so well, I can assure you that at the age of 12, Ryan couldn't give a da** what Suzanne Wright or anyone else at Autism Speaks thinks about him, writes about him or campaigns about him. However, one day, as a successful, contributing member of society, he will. And I can say with utmost certainty that to read Suzanne Wright's words, to think people believe a part of his puzzle is broken, defective or part of a "monumental health crisis" would hurt and sadden him.
This was one bandwagon I was proud to jump on...for my son. After all the years we have spent telling Ryan that we all have differences and that these differences are what make the world such a unique and great place, to read that the co-founder of an organization created to help Ryan and others living with an ASD, considers people like Ryan a "national emergency" is wrong on so many levels. I never want my son to be ashamed of being exactly who he is...all the pieces of him that make him perfect...that make him, him. So, I hope the folks at Autism Speaks recognize that the real puzzle, the real mystery is why they continue to Speak for people living with an ASD, but rarely take the time to listen to them. Now, that I have jumped off my bandwagon, I must go. I'm pretty sure my UPS BFF just dropped off my new high heeled sneakers from Zappos. Don't worry, if they look as ridiculous as they sound, Ryan will give me his AWEnest opinion and chances are they will be returned on the next UPS truck that cruises through the neighborhood.
Keeping it real, raw, and AWEnest while laughing, loving and living in our world
touched by Autism.
If you would like to subscribe to this blog ...
Definition of Awe: