Tick tock, tick tock....there are only a mere 24 hours until the school year ends, 24 hours until this mom can breath a sigh of relief that Ryan not only survived his first year of middle school, but, that he kicked butt and took names. Actually, he really didn't "take names" because names are not his strong suit, and where in the world would he "take" a name anyway? And even though I think Ryan "kicked butt" he would tell you he most certainly did not kick butt because that would be rude, violent, against the rules and a lie. So, I guess I will just say that with only hours left of 6th grade, Ryan's school year was AWEsome! Hooray!

There will be plenty of "I told you so's", from the likes of my husband, Ryan's therapists, my friends, his brother, and his former teachers. People ready to gloat that all my fingernail chewing, all my sleepless nights, all my How to Survive Middle School with an ASD Survival Guides that I created, were all for not. Gloat away folks, because no one could be happier about being wrong than me. I just wish all these gloaters would share their crystal balls with me and spare me all the anxiety that will surely roll around in August once again. 

When Ryan reluctantly walked out the doors of elementary school last year at this time, anxious for what was yet to come and heartbroken for what was left behind, my biggest worry wasn't school yard bullies, getting him up at 6:15AM or the shape of the school pizza (although those were all very genuine and legit concerns), what kept me up at night on the "what if" roller coaster that is my brain, was the concern of what if Ryan, my one man, man, can't survive being placed on a middle school team. I don't meant the basketball team, the volleyball team or the debate team, I mean an academic team that consisted of five teachers for core subjects and ten other teachers for various specials. Ryan was use to one or two teachers that he had to get to know and who had to get to know him. I was AWEnestly convinced that rather than be placed on the 6R Academic Team, Ryan would have chosen to take his chances of a spike to the face on the middle school volleyball team. The pain of a volleyball spike would diminish much quicker than enduring a different teacher for nine periods each day. 

I know it's probably been a while since you have done middle school math (unless of course you have a middle schooler and unlike me, you can actually help your kids with math past the second grade), so I am going toss out two equations for you. Here goes:

9 class periods+9 teachers+9 varying teaching styles+9 sets of rules=1 anxious boy

1 anxious boy=1 worried, fretting, nutsy mom

I always hated math.

Ryan isn't much of a "team" kind of guy. Being part of a team, means getting to know your teammates, understanding everyone's role on the team, and being able to interpret facial expressions, body language, and social cues that often go hand in hand with being part of a team. Autism makes all those things hard for Ryan, not impossible, but, difficult enough that he would rather stick with his one man show. Ryan is a solo sport kind of guy, he prefers having to only look out for himself and being responsible for "I" not "we". The saying goes, "There is no i in team", but, Ryan most assuredly would beg to differ (actually he probably wouldn't since there literally is no letter "i" in the word team, but, work with me here folks, it's been a long school year).

Throughout the school year, I never once heard Ryan say "we" or "team", but, he frequently and proudly used the word "I". "I made the honor roll!"...."I got a 100% on my test!"...."I handled it on my own."...."I passed."...."I understand the material perfectly". "I, I, I", not "we, we, we" and Ryan's right, he did do all those things, but, just like a pitcher may run off the mound screaming, "I threw a no hitter!", without his team's flawless defense, without his team's support, a no hitter would have been impossible. A quarterback who is patting himself on the back for having such a successful season may say, "I hold the NFL record for most completed passes." which may be true, however, without his defensive line protecting him and he receivers catching the ball, that quarterback would not have thrown a single completion.  

For Ryan, whose fight or flight is so heightened, taking care of "I" makes recognizing the importance of "we" challenging. Autism makes the notion of even an academic team, seem full of unforeseen, unexpected, danger and peril. An academic team, may seem almost as dangerous as a rope team climbing Mt. Everest. The English teacher may use a stopper knot to keep her team together and safe, while the Science teacher may prefer to use prusiks on the rope, a completely different way of reaching their goal safely. These different strategies all work, but, for a child who prefers "same" getting to know all those differences and understanding them, is like free climbing Mt. Everest without a Sherpa.

A mountain climber who screams from the top of the Earth, "I climbed Mt. Everest", would have never made it to the summit without being tethered to a team, a team whose soul job is to keep each member safe, while they reach the summit. Being part of a climbing team, the team members understand the whole "you go, I go" motto, even though none of them want "to go". They understand that being tied to that team helps each climber, regardless of the differences in ability and stamina, reach their goal. Often the distance of the rope is shortened for the climber who occasionally stumbles and struggles to ascend, the climber who may struggle to see the crevasse buried beneath the snow. The members of a good rope team, know when and how to make the adjustments and keep a struggling climber close, ready to self-arrest and do whatever it takes to make each member of the team reach the summit safely...even the climber who struggles. No mountain climber can ever say "I" without the "we" of his rope team that guided him through hazardous and unpredictable terrain. 

The academic team that Ryan was fortunate enough to tether himself to for his first year of middle school, kept him close and kept him safe as he found his way over the hills and peaks of the strange terrain of metaphors and figurative language, as he eased himself over algebraic methods, and happily explored the elements of the Earth's crust, all while making new discoveries on the people, climate, and culture of French Guiana. This amazing team, knew when Ryan felt safe enough, when he became more confident in his abilities and they extended the distance between themselves and him on the rope. A distance great enough to make him forget the "we" in team and happily declare, "'I' made it to the top!".

With only hours left until 6th grade comes to an end, I promise you Ryan will descend the bus steps on that last day, with tears in his eyes since ending something familiar and beginning something new is both difficult and heartbreaking for my sensitive son. With all his successes, all his accomplishments, Ryan could scream from the rooftops,"I did it, I made the Honor Roll all four marking periods and I am a seventh grader!", but, he won't because bragging isn't his thing and because climbing on the roof, untethered is as dangerous as free climbing Mt. Everest. This declaration may not be shouted from the rooftops, and chances are high that he won't even utter a single word about it, but, as his forever grateful, lifetime Sherpa, no one knows Ryan better than me, and I promise you 6R Team, he feels it, he knows it, and he believes it, all because he was tied tightly to an amazing team. 

Thank you 6R Team, for pulling my son, for pushing him, for securing him, for reaching him, for teaching him, and for believing, "different, not less".  Mostly, this worried, tired, about to open a bottle of wine mom, thanks this team of AWEsome teachers for not allowing my son to fall through a crack or a crevasse by providing him with just the right amount of rope that gave him the strength and the confidence, to reach the top and to proudly find the "i" in team.

I try to be a "cool" mom, you know, a loving mom who does just the right amount of nagging that makes you a responsible parent, but, not over the top nagging that makes your kids think you are lame. I try to be the kind of mom that makes our house the hang out for all my kids' friends because, "Kyle's mom is so chill" (and because I have a sweet tooth like a child and my pantry is living proof of this fact). The kind of mom that my mom was when I was growing up (and of course still is today), with the added bonus of trying to be cool on social media. I am told by my teenage son that in the world of social media where I have mistakenly and humiliatingly crossed into his web universe, that I fail miserably in the Cool Mom Department. And if there is anyone who is going to tweet that you are without a doubt the most embarrassing mother in the world of social media, it's going to be your 16 year old, know it all, teenage son. #epicfail

I have been told, by my horribly embarrassed teenage son, that we "old heads" have ruined Facebook for the youngins (no one who is anyone over the age of 14 has an "active" Facebook account) and now, even worse, we over the hill, inept, social media blunderers are hashtagging on Facebook. #OMG 

For those who may be even lamer than me, a hashtag (#) originally began on Twitter then went to Instagram and it is a way to sort or categorize your tweets and pics so that other people who search under that hashtag can find similar tweets, pics and comments. For example, #embarassingmoms could be a hashtag on my son's Twitter account that would follow a comment something like this, "Mom's #'ing on FB again WTH?" and then his followers may share a similar horrific mother story with the same #embarassingmoms. 

Until recently, us old heads using a hashtag on Facebook was just for fun (or embarrassment) because there was no direct link from one hashtag to the next. Facebook changed that, but, according to teenagers, it's still not an acceptable hashtag outlet. In fact, when you put "hashtagging on Facebook" in your search engine, the second search title that comes up is "hashtagging on Facebook is stupid", which I'm sure was written by a horribly mortified teenager. #ohwell

According to my social media extraordinaire son, one of the biggest hashtag Facebook blunders, is #TBT. For you lame-o's, #TBT stands for Throwback Thursday, a day when people post pics of days gone by on Instagram not on Facebook, yet, every Thursday morning, I wake up to my Friends on Facebook sporting big puffy sleeves and even bigger puffier hair. Most of these photos are pictures with large groups of friends from the high school or college era. I AWEnestly love seeing these photos because they do indeed throw me back to a different time, a time when I was young, carefree, responsibility free and worry free (with the exception of my obsessive fretting over Aqua Net Super Strong Hold Hair Spray's ability to keep my hair puffy until 2AM). Ahhh....yes, the good old days. There are, however, some friends and some times, you don't want to throw back to, no matter how good the photo may look and how many Likes, Comments or Retweets you get.

Ironically, it was last Thursday, that I had a #TBT moment, and it wasn't pretty. I agreed to help out with Ryan's end of the year Honors Party in Middle School. Yeah, I know, the fact that my son made the honor roll for the first three marking periods and was not only invited to attend, but, WANTED to attend, should have made it a phenomenal Thursday, throwback or not, but, old #TBT habits die hard. If someone would have snapped a photo of me last Thursday, waiting for the kids to be dismissed to the party, they would have seen the same woman (albeit a bit older) as the woman in this photo, smiling, happy, on the outside, but, a worried, hot mess on the inside. Yes, last Thursday, as I waited to collect the Honors Party Invitations for the invited attendees, I was thrown back with my old friends Denial and Clueless flanked on either side of me, but, my newer, much more fun to be around friend, Hope, was giving them both a nonchalant elbow shot as I waited and watched for Ryan to appear.

My throwback was more of a scary, "must have done some brain damage from spraying all the Aqua Net, oh please don't make me relive it again", flashback. As I waited for my 95 pound, almost teenage son to appear, in my throwback mind, I kept seeing an angry, scared, overwhelmed, lost 4 year old boy camouflaged among the wood chips, playing alone under the sliding board at daycare. My palms became sweaty, I felt my heart rate pulsating to the sound of Pharrell Williams annoying Happy song being played by the DJ and all I could think was, if Pharell Williams entered this room right now, I would stuff an Honors Invitation in his big hat then shove it down his Happy throat. I was anything, but, Happy, I was more like Neurotically Nauseous (maybe I should write a song). I quickly forgot about my new friend Hope and was immediately back in my old inner circle with Denial and Clueless, praying, bartering, and willing my son, not to walk into that commons area alone. All the years I spent accepting that Ryan is happy being just who he is, disappeared as quickly as a trending hashtag. #oldnews

As I continued to watch and wait, unaware of the fact that I was literally holding my breath, I found myself whispering to Hope, "Maybe Ryan will round the corner and come through the doors with a friend", while acknowledging to both Denial and Clueless, "Ryan will not only probably be alone, he will probably be the last one to show up". As I stood there transfixed between the present and #TBT, I watched the non-stop streams of kids flowing through the hallways like salmon fighting to get upstream, literally pushing and plowing their way through the masses. I watched as the cool kids in their high black socks and trendy clothes moved together in packs like a group of hungry wolves, just waiting to take a bite out of the vulnerable kids who walked alone wearing high white socks and the same five shirts all school year long. I watched, I trembled, and I waited. "He will be last and he will be alone and that's ok" was ongoing, repetitive, mumbling mantra.

Then just when my new friend Hope was ready to go hang out with some of the more optimistic, cool moms, my boy rounded the corner, in the middle of the pack, with no bite marks, wearing his high white socks, smiling, laughing and walking with, dare I say it....a friend. Ryan and his friend approached me with their Honors Party Invitation, and I got that very happy, yet trying not to smile grin from my boy and a nice, "Hello Ryan's mom!" from Ryan's friend. Ryan wasn't 4 years old anymore. He wasn't angry, he wasn't scared, he wasn't overwhelmed, he wasn't lost, and just like that annoyingly joyful Pharrell Williams predicted, Ryan was Happy and therefore, so was I. Would I have been less happy if Ryan rounded that corner alone, but, still smiling and happy while Hope quickly left my side for some other cooler mom, AWEnestly, yes, I would have, because no matter how hard I try not to project my version of happy onto Ryan, sometimes, I still do. #pharrellandme

Any of my #TBT photos that I would post onto Facebook, horrifying my social media savvy son, would show me surrounded by a group of friends, no matter how far back I would throw the photo. I always found myself in a group, mostly because I loved hanging out with my friends, but, also because being part of a group was how I identified myself. I was a salmon. Being in the middle of gang of friends for me, was, and sometimes still is, easier than being alone. Ryan is quietly confident in who he is and yes, autism makes having friends difficult, so sometimes being alone is preferred, because for Ryan, being alone beats swimming up stream with a bunch of pushy, obnoxious, teenage salmon. For Ryan, traveling his journey in a pack of wolves or a school of fish is not his thing, for Ryan, sometimes, having just one friend to happily script away with, is all he needs. #1isallyouneed

As hard as I try to be a "cool mom", I'm pretty sure Ryan's poor friend probably did not think there was anything cool about me as I followed them around smiling like some weirdo, taking photos, but, not posting them (well, not all of them) on Instagram with a cool hashtag like #bitemeautism or #dumpeddenial or #justbeyou. As I stalked, I mean, watched, Ryan and his friend walk around, scripting the latest Gumball episode together, I stood alone with no friends....not Hope...not Denial....and not Clueless, yet, I did not, for one second, feel the least bit lonely. Students, teachers and parents milled around me, but, I didn't try to hide my falling tears. I embraced my joy as my heart filled with pride while I watched in AWE the #TBT moment transport Ryan and me to the present. 

Some days I'm cool, some days, I'm not, but, one thing we lame "old heads" have over these youngins is the wisdom that comes with age. We recognize that there are moments that don't need a #, a tweet, a post, or a comment.  Such wisdom may not make us cool, hip, trendy or keep us from humiliating our children, but, our old head knowledge enables us to see that there are some moments that really are better experienced alone, because no one who "follows" you, "friends" you, or "tweets" you, can fully comprehend the significance of a moment, of that moment, except, YOU. #mymoment

In less than a week, I will be...brace yourselves....45. Yeah, I know how can that even be possible? I swear I look into my mirror, which must obviously be some type of trick mirror since I seem to look so much better in that mirror than I do in any photos (unless the photo is a distant shot, the lighting is poor and airbrushing was used) and I wonder, who is that tired looking stranger in my bathroom? Before I dial 911 to report an intruder wearing a robe exactly like mine, I rub my almost 45 year old eyes and think, "Sh*t. That's me." Some days, I think I would prefer a weird stranger in my bathroom than the depressing, realization that the old, tired reflection in the mirror is the same girl you see on this 1970's metal "swingset". It seems like just yesterday, I was 10, playing outside with friends, getting the star boy kickball player "out" by miraculously catching the ball that knocked me on my ass and watching non-stop episodes of my favorite television show, The Brady Bunch.

My gosh I loved that Brady family. I mean who didn't want that AWEsome 1970's house with Alice the housekeeper, six kids to play with, a dog named Tiger, and parents who were so dumb they wouldn't let their kids play ball in the house, but, allowed the same kids to naively wear a native taboo Hawiian idol around their neck which almost lead to a deadly tarantula bite. Last week, as I sat anxiously waiting for Ryan's chorus concert, it wasn't "Marcia, Marcia, Marcia" or annoying, put upon middle sister Jan I was thinking about, no, it was the one Brady who rarely stole the show, who sort of blended in to the background, it was Peter and his voice changing hormonal self.

Remember the episode when the Brady kids got an opportunity to sing on live television (of course they did) in hopes of becoming the next Jackson 5, I mean 6 ? All the Brady kids sang like beautiful song birds (each one secretly hoping they would be like Michael and leave the rest of the siblings in the dust), except Poor Peter. No way Peter was going to be the next Michael Jackson, because in that moment when it was Peter's time to shine, his pubescent voice picked that moment as a "Time to Change". Here is a little reminder. I'm sorry (not really).

Now that Ryan has reached the Peter Brady age, I will occasionally hear a Peter Brady "sha na na na na", come out of his beautiful, soulful voice and I wonder how this voice changing thing will effect Ryan's singing. As with all things Ryan, I then begin to worry. What if he can no longer sing? What if he no longer has perfect pitch? What if this God given talent was only doled out temporarily for childhood and with the onset of puberty, this gift will be snatched away as quickly as Cindy Brady's Kitty Carryall Doll? OMG, what if Ryan started sounding like, or even worse yet, started dressing like (gulp) Peter Brady?

When I asked Ryan about his voice changing he assured me that he can hear the difference in his voice, so he "adjusts it". I don't even know what that means, but, Ryan sounded quite confident and as he took the stage, and the first notes poured out of that beautiful face, I didn't need to understand it, because I could see it and I could hear it. If Peter Brady was on that stage, there were enough other kids on stage with him to drown him out, so that not a single voice cracking "sha na na na na" could be heard. Ryan sang his beautifully, gifted heart out. There were a number of songs Ryan sang that night, but, it was evident that one song in particular he loved best. The one that Ryan felt so deeply, sang so beautifully was the one song that reduced this worrying Carol Brady into a big, heaping puddle of tears.

Ryan's select chorus group sang Bridge Over Troubled Water and yes Ryan sang it, but mostly Ryan felt it. His facial expression, his confidence, his heart, his soul were all on full display, there was no awkward autismy smile trying to hide his feelings, he was fully exposed and he was beautiful. As I sat with tears streaming down my face I couldn't help but picture the depths of troubled water we have crossed together. The worry, the fear, the anxiety we both have had about how to cross that water without falling in and being swept away. I wondered to myself, did Ryan love this song for it's musical score, the notes, the melody, or the lyrics? I don't know why this song stirred Ryan, but, as I felt the melody wrap around me and draw me in, I wondered if Ryan knew, if he had always known, that "I would lay me down" to get him wherever he needed to go, regardless of the water's depth, turbulence and undertow.

I have been the bridge for my boy. Some days I have been like the Chesapeake Bay Bridge, strong and sturdy, towering high above the water, with not so much as a drop of water splashing my son, and some days I have been a slippery log that has conveniently fallen in just the right place, barely able to hold Ryan up as he slips and slides, to his destination, finally making it across the water to dry land. Although, I may not have always been the sturdiest bridge, in fact more times than not, my bridge should have been closed due to "instability", rated as "structurally deficient" and at high risk of "failure", but, somehow, regardless of the degree of deterioration, I managed to get Ryan across the troubled water. Regardless of how many storms this old rickety bridge has weathered or how many times this shaky bridge was stepped on, trod across, or flooded, I never once let my boy plunge head first into the water. Sure, like most of us, he has gotten wet from time to time, but, I have always been there to get him safely to the other side where he could dry off, change course, if necessary, and move on.

Like most of my fellow mama bridges, there were many days when the structural integrity of my bridge was compromised due to wear and tear, cracks in my towers, and years of being barraged by turbulent waters, and AWEnestly, my boy got wet. Unlike most bridges, we mama bridges do not have a built in accelerometer to alert us to deficiencies and deterioration. There was no way to determine if too much stress and fatigue was being placed on the bridge, increasing the chance that my occupant might fall into the cold, unforgiving water. However, as I watched my son sing, as I watched him achieve, as I watched the confidence soar from his heart as easily as the notes flew from his soul, I recognized that some of the falling, some of the getting wet, and yes, even some of this bridge's "structural deficiency" enabled Ryan to appreciate this moment. All the bridges Ryan had to navigate to cross that troubled water lead him to this moment, where he is today and without having to occasionally struggle to get across that water, he would not fully recognize the beauty of what it is to make it to the other side.

On the days when the water looked calm and serene to me, without warning, Ryan would see a tsunami coming. Regardless if I saw the wave coming or not, this bridge had to be open, this bridge had to be structurally sound ready to bear the weight in order to get Ryan safely across the water. Other days, when to me the water seemed choppy, and everywhere I turned there were whitecaps stirring in the water, I would do a quick safety check, ensuring that my towers were sturdy and my cables were strong because come hell or high water, I had to get my boy across that water, and just like that, Ryan would calmly walk across the bridge without even a backward glance at what I perceived as troubled water.

To all my fellow bridges out there, who safely get their child from point A to point B across that real or perceived troubled water, no matter how deficient and deteriorated you may feel, you always have to be structurally sound, because for a child with an ASD, even the calmest water can look like a deadly whirlpool. There is no time to determine if you are "structurally deficient" or "functionally obsolete", your passenger is counting on this bridge and whether or not your passenger decides he needs to cross this bridge today to get him across that water, or if he decides to take another route altogether, what matters most is that your amazingly AWEsome passenger knows, that for him, you will always "lay me down".

On the days where you feel like a fallen over, moss covered log that got lucky and just happened to land across the water, and on the days where you are as structurally sound, and as meticulously constructed as the Golden Gate Bridge, you still get your passenger across that water. We bridges, no matter our rating, get our passengers where they need to be, and we will always get them where they need to go. So, here's to you all my bridges.

As the last notes of Bridge Over Troubled Water echoed off the school auditorium walls and off my ready to burst with pride heart, I was in AWE of my AWEsome boy. In that moment, I felt certain that Carol Brady and her perfectly coiffed hair, never felt the pride I felt for my Peter Brady (as an aside, unlike Carol Brady, I would never allow Ryan to wear a taboo Hawaiian idol on his neck or that hideous shirt as seen on Peter in the above video). A "Time to Change" may be on the horizon, but, this bridge, regardless of my instability, my deterioration, and my current safety rating, will be there to hold my boy up as he crosses whatever troubled water lies ahead. 

Ironically, in 2013 the average age of bridges in the US was 42 years of age and the bridge safety rating was a C+. On some days, when I am "structurally sound, but functionally obsolete", that age and rating sounds and feels about right, for this tired, old, weary bridge. However, on most days when this bridge feels new, sturdy, and strong, I guarantee, that regardless of my age, regardless of what I see in that damn, lying, bathroom mirror, and regardless of what grade the Federal Highway Administration feels I deserve, I know one passenger who on most days, would give me an A+...ok, fine, maybe just an A...as long as I get him over the water and he doesn't get too wet.

When I was a kid, I used to occasionally put aside the Lucky Charms and opt for a bowl of Wheaties because just like I believed Lucky Charms were "magically delicious", I also believed that Wheaties was "The Breakfast of Champions". Who doesn't want to trade in some marshmallows and a leprechaun in order to be a champion? Back in my younger days, Misty May-Treanor was not on the front of the Wheaties Box because quite frankly, Misty wasn't even born yet (ouch). No, back in the old days, Bruce Jenner held the coveted Wheaties Box Champion Title.  Oh Bruce, Bruce, Bruce, times they have a-changed. The 1976 decathlon Gold Medalist Bruce Jenner, was most certainly a champion and worthy of a Wheaties box cover, but, the Bruce Jenner of today, well, suffice it to say, Wheaties may want their box back. Poor Bruce, he got so caught up with those Kardashians and all that plastic surgery....bad plastic surgery, that I wonder if General Mills has bought all the Bruce Jenner Wheaties off of eBay to cover their champion idolizing tracks.

For some reason, when I hear the word "champion", I almost automatically think champion (noun), and picture an athlete (not Bruce Jenner...sorry Bruce) on a podium being given a trophy or medal. According to Webster, the definition of THAT champion is "someone or something that has won a contest or competition especially in sports." Obviously, in 1976, Bruce deserved to be on The Breakfast of Champions box, after all, he was an Olympic Gold Medalist. The definition of the verb champion, is never on the front of the box, heck this type of champion isn't even on the side or the back of the box, which incidentally is where champion's photos were placed prior to 1958 (A little Wheaties trivia that could one day make you a champion (noun) on Jeopardy. You're welcome). Champion (verb)  is "a person who fights or argues for a cause on behalf of someone else". This type of champion (verb) may be outspoken, may fight, argue and advocate for someone they believe in, but, these champions never make it on the front of the Wheaties box, preferring to allow the champion (noun) they are championing, to remain front and center.

In honor of Autism Awareness Month, today's blog is for all the champions who don't make it to the front of the Wheaties box, but, who are no less a champion than an Olympic Gold Medalist. These champions of children and adults living with an Autism Spectrum Disorder, are mothers, fathers, brothers, sisters, grandparents, teachers, and therapists. They educate, advocate, and support the belief of "different, not less". Because of their love, because of their commitment, because of their desire to see their child, sibling, grandchild, or student "win", these champions (verb)  have helped create champions (noun). Just like an Olympic Gold Medalist, these champions work tirelessly in order to make sure their son or daughter stands on that podium. They "fight or argue on behalf" of their champion who may one day be on the front of the Wheaties box. They are the champion (verb)...the fighter...the coach...and the voice...that helps create a champion (noun).

It would be delightful if someday Wheaties would have an autism champion (verb) on the front of their box, but, chances are, that won't happen. So, in order to make up for General Mills' lapse in judgement, I want to make sure the champions championing autism awareness are visible today. These fighters, these tigers, are not roaring because they want to be difficult, these champions (verb) are roaring because they need to be heard since they are "fighting on behalf of someone else"...their child. If they don't roar, then who will? 

Until I began championing my champion, I was scared, beaten down by The A Word and my cohorts, Denial and Clueless, and I had no idea what I was doing. I worried more about other people's impressions than what was right for my son. Now I will fight, champion, advocate and roar when I need to, because in order for my son to become a champion (noun), he needs a champion (verb). Most days I don't have to tie on my boxing gloves. Most days people are aware that what every person, with or without an ASD, wants is ACCEPTANCE. The month of April is about Autism Awareness and Autism Acceptance. So, today I am championing for all the champions (verb) loving a child with an ASD. Here are a few examples of moments that are front of the Wheaties box worthy:

For those folks in the mall who may be out looking for spring sandals for your child, we want you to know that the meltdown in the shoe store is not meant to disrupt your shopping experience or make you feel uncomfortable, but, the lights, the noise and the smell of the shoe store for our child is too much. Our kids also wear shoes and we champions have to shop for shoes and put them on our kids feet.

For the school administrators who are tired of words like FAPE (Free Appropriate Public Education), IDEA (Individuals with Disabilities Education Act), and IEP (Individualized Education Plan),  and who often believe that autism is "the flavor of the month", we are not trying to make your job harder. Our kids need an education. We champions make sure they get it.

To the insurance companies (whom AWEnestly, I have NO sympathy for), who don't understand that a trip to the dentist is like a trip to Hades for our kids, we are not trying to harass you with our repeated phone calls or get your fired when we ask to speak to your supervisor. We need the right code for the right surgical center so our child can get a cavity filled without fire and brimstone raining down on them in the dental chair. Our kids need good dental hygiene, and we champions will walk through fire to ensure you pay for some of it (then curse all insurance companies to Hades when you fail to pay a cent).

We are the voice, the fighter, the educator, and the tiger. We champion for our kids whose communication struggles makes it easier for them to remain silent. We champion for our kids who hate the feel of leather boxing gloves. We champion for our kids who cringe at the sound of a deafening roar. We will continue to argue, to fight, to walk through fire in order to champion our champions, and even though you may never see our face on the front of the Wheaties box, I promise you will always hear us ROAR.

For those of you who know me personally, you know I have been blessed (or cursed, depends on how long you have to sit next to me) with the "gift of gab". It's very rare, that my mouth isn't open and moving. Even as I sleep, my mouth hangs wide open, as I mumble and chat with the folks who are brave enough to enter my dreams. This gift of gab is not new, I'm pretty sure I came out of the womb talking. Teachers in elementary school gave me the nickname, "Chatty Kathy" (I'm a K, not a C), just like the very scary, Chucky's twin sister, 1960's Chatty Cathy doll that could "chat" (and possibly kill you in your sleep) when you pulled a string on her back. 

AWEnestly, look at that doll...is she pointing at me in a "I'm coming for you next?" kind of way (shudder)? That doll is so freaky and as a fourth grader had I known how offensive the nickname "Chatty Kathy" was, I would have put one of those creepy, possessed looking dolls under my teacher's bed with a toy knife in it's hand. Who needs a tack on teacher's chair, when a Chatty Cathy doll lies await under teacher's bed? Dan, who is not a small talker and who amazingly has not put a Chatty Cathy doll under our bed to scare me into silence, once told me that I could befriend and small talk with a fence post. As long as the fence post occasionally creaked to show some type of interest in what I was chatting about, I probably could befriend and chat with a fence post. A fence post isn't nearly as scary as Chatty Cathy.

Ok, fine, my dirty little secret it out. I'm terrified of creepy looking dolls, and I'm a chatter box blessed with the gift of gab who can engage in small talk all day long with my blah, blah, blah, Chatty Cathy mouth... often at tongue straining speed. If any kind of alcohol or medication is added to my gift of gab, it's highly recommended that anyone within 50 yards of me, grab some ear plugs and an interpreter in order to protect your hearing and decipher what the he** I am saying. Even during my college days, I never "experimented" with stimulants because I felt certain that between my already hyper, overstimulated personality and my gift of gab, someone would have surely tossed me over a balcony. I promise you, had I been given an opportunity to score some of Walter White's highly addictive blue meth from the series Breaking Bad, regardless of it's 99% purity, I still would have never become a meth head junkie. Walter would have shot or poisoned me within three minutes of my first meth buzz. I would have never stood a chance of becoming addicted. 

Good thing we have no balconies at our home and it's probably in my best interest to never have my science loving, money loving Ryan ever meet up with Walter White because Ryan does not believe my gift of gab is a gift at all. In fact, to Ryan, most of the time I am just noise...noise that makes his "brain hurt". Ryan loves me to the sun and back, but, as far as my small talk gift of gab, well, quite frankly, Ryan would happily have me re-gift my gab and Dan would probably help Ryan wrap it. Re-gifting my gab is a much better scenario than having those two inquire with Walt how big of a barrel they need for me.

Ryan loves small talk about as much as Walter White loves the DEA. Autism, or Autism Spectrum Disorder (ASD) is a social communication disorder. Many people with an ASD, have difficulties with socialization and communication and Ryan is no exception. Small talk involves both communication skills and social skills and Ryan struggles with both. Ryan is also a perfectionist. If Ryan can't get something right, or if Ryan thinks he won't get something right, Ryan is not going to risk being wrong. So, whatever this "something" is, just ain't gonna happen. This is why, more often than not, Ryan remains silent in social settings. 

Small talk is a way of social bonding, a way of trying to fit in or be accepted. Ryan spends very little time concerning himself with fitting in. That's not to say that Ryan does not care about fitting in, but, socializing, bonding, and fitting in exhaust Ryan. Socializing for Ryan means too many social cues that he misses, too many words with double meanings, too many facial expressions that are hard to read and too much body language that is hard to interpret. More times than not, Ryan decides that small talk and "fitting in" is all just way too hard and not worth the risk, so he frequently chooses to be alone. Small talk is also used as a way to start or end a conversation or to fill in that awkward silence in a conversation many of us find uncomfortable. Since conversing is difficult for Ryan, and since silence to him is not awkward, but, a welcome relief, it makes perfect sense that for Ryan, small talk is BIG.

Back when Denial and I were often engaging in small talk, Denial would tell me that if I just kept talking at, I mean to, Ryan, he would eventually respond. So, every day on our way home from daycare, I would barrage Ryan with questions about his day. Just trying to prompt him to say something. "What did you have for snack?"..."Did you take a nap?"..."Did you make any crafts?"...and my favorite, most terrifying question that always came last, "Who did you play with on the playground today?". All my questions would go unanswered as Ryan stared out the car window, wishing there was a balcony to toss me and Denial over. I kept thinking, every single day, if Ryan would just answer one question, if he would just connect with me on one thing, I would be so much happier. Just like my friend, Fence Post, I felt certain that all my chatter, all my small talk would eventually make Ryan creak. Funny, how in those moments when I was so worried and so scared and wondered, "Why doesn't he respond to me?", Ryan's happiness didn't come into my mind. Getting Ryan to small talk was for me, not him. All Ryan wanted after a long day of daycare, school, and expectations, was to finally be in a place where he was safe, loved, and free of the stress of what he was expected to say next.

When Ryan continually failed to engage in my small talk chatter, or in small talk with friends, Denial assured me that Ryan just didn't care about friends, so small talk wasn't even necessary. This "didn't care" conclusion that Denial enabled me to draw, lead to many quiet car rides home with only Spongebob playing in the DVD as company. For Denial to have me believe, or anyone believe, that Ryan doesn't care about the social bonding of small talk or making friends is unfair. Certainly, small talk may not be as desirable for Ryan as it is for his mother, Chatty Kathy, but, just because Ryan's small talk is minimal, doesn't mean he cares little about acceptance, it just means that for Ryan, it is easier, and safer, to stay silent. After all, with silence, there is no chance of social mishaps, there is no chance of misinterpreting what someone means, there is no chance of saying the wrong thing at the wrong time, so, there is no chance of getting hurt. Whether he likes it or not, Ryan needs to learn what to say, and how to effectively communicate to survive in a world full of Chatty Kathy's. Coming from the heart of a Chatty Kathy mom, I hope that one day Ryan will not only know how to small talk, I hope that maybe one day he will actually want to chat with me.

Ryan has worked with Mrs. P, an amazing speech and language therapist, for five years, not because Ryan is non-verbal, not because he has poor articulation, but, mostly to help Ryan with his social speech, to help him engage in small talk. We all know that regardless of a designer Autism label, small talk is big when it comes to relationships with peers, teachers and colleagues. Ryan can do it, he can be taught to small talk, but, chances are, small talk for Ryan will always be BIG. Mrs. P has given Ryan the foundation he needs to small talk with his family, his friends, and his teachers, but, Mrs. P, no matter how wonderful she is, can't make Ryan want to do it. Autism may always have a hand ready to cover Ryan's mouth and keep him silent, but, maybe one day, Ryan will willingly and confidently push that hand aside. I have seen it happen...on rare occasions.

Needless to say, for a Chatty Kathy, someone who rambles on and on and on and on and on, having my son not engage in small talk with me, regardless of the reason, is still difficult. The AWEsome thing about my attempts at small talk with Ryan now is that Ryan has the communication skills to tell me, I'm "setting his brain on fire", or that I'm "speaking gibberish" or that he has "no possible idea" what the heck I am saying. Even Chatty Kathy knows when someone is nicely telling her to shut the he** up. I recognize that when Ryan gives me an inch, just a tiny hint of his willingness to engage in some small talk, I go for the mile, speaking gibberish at a high rate of speed that gets muddled up somewhere between Ryan's ears and his brain. In my hyper-crazed excitement to find Ryan, I wind up losing him again. Someone needs to tie a knot in this Chatty Kathy's pull string.

You can only imagine that on the rare occasions that autism releases it's hand from my boy's mouth, and he does decide to strike up some small talk with me, I feel like I am getting a glimpse inside his soul. I never, ever take these moments for granted and I try so hard to tape Chatty Kathy's mouth shut. A few weeks ago, while driving to pick Kyle up at baseball, Ryan said, "Are you aware that the mineral fluorite has the ability to glow in the dark?". I almost hit a pedestrian. First of all, Ryan STARTED the conversation, second of all, he asked it in the form of a question (never happens unless it's "Where's my lunch?") and finally, I had no idea what he said because for once his words sounded like "gibberish" to me. Fluorite? What in the name of Sam Hill was fluorite? I tried to wrack my brain with a smart mineralogist type of response. Turns out, my, dumb mother response of, "I had no idea!! What else can you tell me about fluorite." was all I needed for my brilliant son to chat for a good five minutes about minerals. 

Thank God for minerals, rocks and an AWEsome science teacher. Those five minutes were a gift so beautiful and so amazing that my gift of gab only interrupted twice...and he called me on it both times by saying, "I wasn't finished yet.", and that's when I almost struck a light pole (Clearly Ryan's moments of small talk should not happen while I'm driving.). "I wasn't finished yet.", meant Ryan didn't give up, he didn't shut down because mom couldn't shut up, small talk got hard, but, Ryan stuck it out. Autism raised it's hand to cover Ryan's mouth and he crushed that hand with a big chunk of pyrite (aka Fool's Gold...I knew that one). Wow! It was without a doubt, the most amazing small talk, I have ever engaged in...and I'm still gushing over it.

As the van slowly pulled up to the curb at the high school, the magical moment ended, but, my heart continued to soar. Ryan crawled into the back seat, making room for Kyle, and turned on Spongebob. Our small talk had ended, but, it gave me a glimpse into my son's future. I pictured him surrounded with other sciencey like, smarty pants mineralogists in white lab coats discussing minerals (I realize mineralogists may wear polo shirts instead of lab coats, but, please let me have my moment) and Ryan not only engaging in the small talk, but, enjoying it. Surrounding himself with like minded people discussing something he is interested in, may be all Ryan needs to have small talk not be so BIG. I just hope that this group of white lab coat wearing mineralogists need a dumb, old Chatty Kathy to work in the lab cleaning up mineral dust and answering the phones, so I can continue to witness my AWEsome boy, finally being so comfortable with who he is, that small talk comes as easy as pulling a string.

I looooove Saturday mornings...sleeping in, no early morning kid activities, and long leisurely breakfasts in my jammies with my hot off the presses, just delivered on Friday, People Magazine. My little piece of heaven. So, when I have to get up early on a Saturday, I am not only tired from celebrating the arrival of the weekend by watching three back to back episodes of Breaking Bad until the wee hours of the morning, I'm grumpy too. "The early bird gets the worm", so goes the old proverb, but, this past Saturday, Ryan and I weren't going for worms (I could just hear his annoyance at such a stupid saying), we were embarking on a 45 minute road trip with a quick stop at Dunkin Donuts. Here's the thing, Dunkin Donuts makes donuts ALL DAY LONG. Oh sure, they want you to believe that their donut baker lumbers out of bed with the early bird while moaning, "Time to make the donuts" so you feel rushed to be the FIRST ones in line for the freshest, choice donut, but, it's all a scam. You can be the late bird and still score a tasty, trans fat and cream filled donut. 

Ryan was about as thrilled as I was with the early morning Saturday change in routine, so instead of telling him the "early bird gets the worm" (eyes roll), I told Ryan the early bird gets the choice donut. Yeah, I'm as big of a phony as the "time to make the donuts" guy. Ryan whined, complained and stumbled out of bed and refused to brush his teeth because it would "ruin" the taste of the coveted donuts (he popped in a piece of gum after the donuts which I know a dentist would not approve of as a toothbrush substitute). Before we headed out the door, I was ordered to fill Ryan's Thermos with Welch's Grape Juice because my boy's elephant memory, recalled that Dunkin Donuts does not have Welch's Grape Juice and that their orange juice has pulp in it (the horror). We early birds, were so early, Ryan and I even had time to go inside Dunkin Donuts and peruse the plethora of choices rather than risk a donut catastrophe at the drive thru. Once we recovered from the near meltdown that took place when my early bird spied the strawberry iced donuts being placed on the shelf after our order was placed, bagged and paid for (clearly when it was "time to make the donuts" the strawberry iced ones weren't at the top of the old, tired baker's list), we were on our way, to our real destination.

Ryan loves a road trip, and I love having him in the passenger seat next to me (even though I stress a little because I know he is safer in the back, but, now that he is 12 and the law says he can ride up front, there is no going back...figuratively and literally). Quality time, just the two of us, enhanced with a little donut sugar high. I tried for a while to chit chat, but, after being grunted at numerous times, I gave up and was equally happy listening to my boy singing, scripting and laughing at whatever show he was watching inside his head. In that moment, I sort of related to that early bird and his successful worm hunt, although I was tired and longed for my leisurely breakfast while happily admiring Matthew McConaughey in a black tuxedo (sorry Matthew, the white was a little too Saturday Night Fever for me) in People, maybe getting up early, really did enable me to score the coveted worm.

Although I was enjoying the morning, I didn't get out of bed early and leave the Oscar predictions in my latest People Magazine sitting on the kitchen table for Dunkin Donuts. Nope, our destination was a Music Festival at a local college for piano students. This was Ryan's first time attending so I had no idea what to expect and for a boy who likes a plan and struggles with "new", he didn't know what to expect either. Ryan's fabulous piano teacher had written out a schedule for him instructing him when to be where. First up on the list, was a workshop on the Progression of Left Hand Accompaniment Patterns. What? I made Ryan LOL, even though he shushed me with embarrassment, when I did my best Charlie Brown's teacher impersonation. I am completely illiterate when it comes to anything music, so this professor's "wah, wah, wah, wah, wah", was like a foreign language to me. I tried to pay attention, but, after Ryan moved two rows in front of me, not because I was such an embarrassment to him, but, because the professor told him to (although, I'm sure he was relieved to put some distance between himself and his musically inept mother), I found my mind start to wander. 

As I sat waiting for the workshop to end, I began to worry about Ryan's "adjudication" on his piano skills which would be next. Ryan would be judged on various piano playing skills while in a room...alone...without me. As my anxiety began to escalate, awaiting this so called, "adjudication", I couldn't help but recall a different type of adjudication that I regularly attended as a juvenile probation officer. Waiting for a judge to make a different kind of adjudication for a different kind of kid. As a juvenile probation officer, it was my job to provide testimony to the court about the juvenile who stood next to me. I couldn't help but compare my role as a mother whose job it was to protect, advocate and fight for my child being that much different, yet, I struggled with whether or not Ryan would object to my testimony or if the judge would find my testimony relevant. 

I wondered, if at this adjudication for my child, do I present the facts...all the facts, or do I let Ryan take the stand on his own without my testimony? Will Ryan incriminate himself when he doesn't make eye contact with the judge? Will the judge think Ryan is rude if he forgets to say, "thank you" or ignores a question the judge asks that has nothing to do with the piano? What if Ryan drops his paper and refuses to pick it up because he hates the feel of paper? Will the judge think Ryan is not taking his adjudication seriously? Will Ryan's flat out refusal to put on a name tag because stickers have caused him anxiety since he was two, make him appear defiant? If Ryan refuses to take his coat off because the hot air blowing from the vents makes his skin feel dry and scratchy, will the judge think Ryan has no respect for the Music Festival, the adjudication and the piano itself? There was a whole lot going on in my scary head for a 45 minute piano workshop. 

This battle going in my psyche came to a standstill when I watched Ryan practice in a sound room minutes before his adjudication. It was then that I decided not to hang my kid out to dry (he would have assured me he was not wet). I decided that if I don't want a label to define Ryan, even when his quirks and social struggles make him stand out, then I can't define him with that label at every turn either. There are times when The A Word, has to be mentioned...at a 504 Plan Meeting with school officials, at the dentist office when they realize total sedation will be necessary to fill a cavity (or three), at the pediatrician's office when a strep test is necessary, or at the hair salon when it's a new stylist, but, not at a piano adjudication. This was not because I didn't want Ryan to do well. It was not because my lack of interest in music minimized the importance of music to my son. The reason I let Ryan take the stand on his own was because unlike those courtroom adjudications when my words were needed to describe the juvenile standing before me, my words were not needed before a judge in a sound room. Sharing words....sharing The A Word, was unnecessary because this was music and music is one place where Ryan's quirks and differences disappear into the ivory of the keys.

I wished Ryan luck, although I knew it was not necessary, and Ryan walked past me, piano books in hand, a smile on his face and no name tag whatsoever. As I heard the judge greet Ryan, Ryan mumbled a monotonic, "hello", then he quietly closed the door and left me to wait on the other side. This was new for me, being on the other side of the door, not being Ryan's voice. Although I trembled with nervous energy, I had never been more proud of my son. As I listened through the door, frustrated that I didn't bring a cup to hold against the door to enhance the sound (AWEnestly people, I can't cut the cord completely), I did not hear Ryan speak in his British accent scripting Stampylonghead in a diatribe about Minecraft, I did not hear Ryan stumble over his words with his sometimes "cluttered" speech and I did not hear Ryan complain about the heat blowing out of the vents. All this spying, worried mom heard, was the beautiful sound of Ryan's fingers finding the right chords, timing his intervals and "expanding the use of the keyboard" as Ryan's label, his quirks, his differences, dissipated with each beautifully played note.

I all but fell into the room once Ryan finished and opened the door, and I quickly and discreetly wiped away my tears so Ryan wouldn't reprimand me for being "too proud". Ryan bounced out of the room and said, "That judge guy was AWEsome and he said I did great!". In fact, "that judge guy" gave Ryan the highest marks, "superior", in every category with the exception of one "excellent". Clearly, Ryan did not need my testimony, the facts of who he is and what he is capable of, were evident without any input from me. I did not need to share The A Word with the judge who adjudicated my son because he did not need words or a label to see Ryan's ability. There will always be times when Ryan's quirks will make me want to quickly defend him by throwing that A Word under the bus, but, more and more, Ryan doesn't need excuses, labels, or me defining him. Ryan is finding his own place in the world, and as he has told me time and time again, "I don't feel different, I just feel like me."

This is one early bird, who is so glad that my love of sleep, a late breakfast and a date with People Magazine did not cause me to miss the worm. Not because I wanted the fattest worm or the choice donut, but, because I got to spend a day with someone who constantly puts the AWE in AWEsome. Someone who will never let a label, a judge or even his mother, define him. Some days it takes me longer to wake up than others. This past Saturday, even with my donut sugar high, it took me all day to wake up, but, when I finally did, I realized that even a full page spread of Matthew McConaughey playing strategically placed bongos in People Magazine, takes a back seat to the wonderfully gifted piano player sitting in the front seat next to me. 

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.

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 
          office.
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.