Ahhhh....the end of July, that glorious time of year when the kids are constantly bickering and ready to rip each other's hair out and you have finally perfected the summer time skill of blocking out the madness with the beautiful image of that big, yellow school bus driving down your street. It's that point in summer where yes, technically there is still a month of summer left, but, yet, you feel the tide turn. Something definitely changes.

As you sit in the backyard gathered around the fire pit, the kids are no longer bugging for smores, in fact, chances are, they are all inside watching television, the novelty of warm summer nights gathered around the fire has faded with the embers of the June flames. The iridescent glow in the backyard that in early June was filled with fireflies, becomes dimmer and dimmer. The nights, although a subtle change at first, are becoming shorter and cooler and every retail establishment has long since abandoned the racks of shorts, bikinis, and tank tops and replaced them with jeans, sweaters and jackets. 

With all these signals of summer slowly coming to an end, nothing is more telling in our house than an empty swimming pool. For some reason, when the calendar is flipped from July to August, the long, lazy days of lounging by the pool do not flip with it. 

The first summer after the pull went in, I thought for certain Dan was going to buy a time clock and hand each one of us a time card, forcing us to clock in and clock out each and every time we entered through the pool gate. All that money that literally gets dumped in your backyard, better be money well spent, so, by all means, the kids must swim all day, every day. The only allowable exception to swimming that first summer was if a low rumble of thunder could be heard in the distance, and as long as that distance appeared to be ten miles away or less.

One of the main reasons this worrying, whacko mother agreed to have a large body of water placed in the backyard was because Ryan, the most sedentary child on the planet, loved to swim. In fact, I wrote a blog last summer, http://www.awenestyofautism.com/blog/my-fish-out-of-water about my little fish out of water and his love of the quiet peacefulness he discovered in a muted, calming world 8 feet under water. Swimming, was hands down, the best, and quite AWEnestly, the only, form of exercise my boy got, so a big, deep hole was dug in my backyard and filled with money....I mean, water. And for the past three summers, Ryan enjoyed that pool all summer long, until the calendar flipped from July to August of course.

So, you can imagine my surprise and my heartache that on this last day of July, my little fish has not so much as stuck his big toe, or should I say big fin, in that pool. The closest Ryan came to "getting wet" was filling a water gun up to squirt the dog. This boy, who once upon a time would have willingly traded his lungs for gills in order to spend half his summer underwater, has now opted for dry land and as of the writing of this blog, he has no intention of "getting in" anytime soon. I am dumbfounded.

As I have done so many times over the course of Ryan's lifetime, I quickly pointed the finger at autism for this drastic change in my boy's behavior. I first assumed that it was a sensory thing, so, I told Ryan if he didn't want to swim because he hated the feel of the icky, sticky sunscreen, he could swim in the evening when sunscreen wasn't necessary. Ryan assured me that he did not hang up his gills due to sunscreen.

I then wondered if there had been one too many bee sightings, even though we purposely did not plant flowering bushes around the pool. Autism tends to make Ryan's anxieties, bugs being at the top of the list, somewhat consuming, so it stood to reason, autism and "killer bees" were to blame. Yet, Ryan, who once needed me to walk past the azalea bush to cross the porch, no longer needs my hand as he bravely, albeit rarely, enters outside. This threw the bee theory out the window.

It also crossed my mind that perhaps with puberty in full bloom, maybe Ryan felt awkward about his changing body. When I carefully inquired about this new line of thinking I was told, "I'm perfectly fine with my body.". Scratch that theory too.

I told Dan, Kyle and anyone who would listen, "Ryan has something stuck in his head about swimming, some new fear, phobia or idea he is perseverating and obsessing about. Curse that autism." I just felt certain it was autism that was keeping my boy from jumping off the diving board and I was determined to push him back in that pool one way or another.

Ironically, my knee jerk reaction (perseveration) to immediately point the finger at autism regarding Ryan's new found avoidance of the pool, made Ryan move even farther inland. You know the saying, "When you point your finger at someone, there are three fingers pointing back at you"? Yeah, that.

My constant nagging and non-stop barrage of questions in an attempt to decipher why Ryan wouldn't get in the pool, as well as treat bribes, and the occasional threat of diminished screen time, in order to get his butt in the pool, only backfired. My desire to find out "why" only caused Ryan more stress about swimming which has made him dig his heels even deeper into dry land. Pointing the finger at autism, really did point all the other fingers right back at me.

Refusing to look at those other three fingers pointing at me for making a situation much worse, Denial and I told Ryan we were going to take back his new swim trunks, which all still have the tags on them, as a last ditch, "that oughta show him" resort, to which Ryan very calmly responded, "Yeah, go ahead, they were a waste of money." WTH?!!

I just didn't understand it. Why would autism take swimming away? Friends, yeah, I get it. Parties, yep, totally understand that too, but swimming? I just couldn't wrap my head around it. Why take something away that Ryan loved so much? Then after asking Ryan for the 150th time, why he didn't want to swim anymore, he finally looked at me and said, "I'm over swimming, it just got boring." I finally put my aging, non-manicured, pointy finger down. If autism could smile, and say, "na nee na nee poo poo", it totally would have. Ryan should have done it for autism instead.

It seems that if I choose to point the finger at someone, if there has to be someone to blame, I needed to stop pointing the finger at autism and start pointing it at Father Time. Was Ryan's lack of swimming as simple as something he outgrew? Sure, many kids still like to swim as teenagers and even adults, but, Ryan has always been his own guy, not worrying what others do, or what others expect. 

When Ryan stopped playing with his Thomas the Tank Engine trains, I didn't point the finger at autism, I just chalked it up to growing up and losing interest. When Ryan gave up Blues Clues for Spongebob, I didn't point the finger at autism, I just accepted that Steve was no longer as funny as Patrick. So, I guess when it comes to swimming, maybe Ryan has decided that there is more exciting things to do on dry land than there is in an 8 feet deep swimming pool. As a mother who "goes under" and actually soaks my hair about four times a pool season, and who prefers to float atop a raft with a well designed cocktail holder, one would think I would get it.

I guess old habits die hard. Denial pops in for a brief summer time visit and I am quick to point the finger at autism for anything about Ryan that seems "different". 

It's time I retire that pointer finger (the middle finger will continue to remain active, since as of yet, I have not found anything else more suitable for the a** who cuts me off on the highway) and take a look at the three fingers pointing back at me. I need to accept that Father Time will transform my boy into a teenager in just a few short weeks and along with that change, more changes will be on the way. Changes that I may see coming and changes that may knock me off my raft and get my hair wet. Changes that have little to do with The A Word.

Rather than pointing the finger at autism, I am learning to be grateful that Ryan has come so far and is able to make choices, decisions and have thoughts that are in no way influenced by autism. Most days, the choices Ryan makes are made just because he is Ryan, not because he has autism. 

So, as the summer days slowly come to an end, I will need to tear up Ryan's time card for the pool time clock because it appears he has hung up his swim trunks this summer. Just in case he has a change of heart, (very doubtful since it will be August tomorrow) I will keep at least one of the three new swim trunks I purchased this summer. 

If the swim trunks still have the tag on them by winter, I will hold on to them, just like I have held on to all the Thomas engines as well as the VHS Tapes of Ryan's beloved Blues Clues. Some things I must let go of and some things I will always hold on to....things that are bittersweet reminders of days gone by, days that are fading as quickly as the summer sunsets, days that have had nothing at all to do with autism, but, days that have been filled with choices, changes and progress. 

The only finger pointing for such change and progress should be at Ryan. He has made the changes and the choices, not autism. The only finger Ryan should see is his own, shimmering in his reflection of the boring, backyard pool that he refuses to swim in anymore, regardless if there is still nine hours left until we flip that calendar from July to August and the "Pool Closed" sign is hung up for the season.

As my husband and I watched Gravity this past weekend, I wondered why I was subjected myself to the terrors of space a second time, since after watching George Clooney, who can even make a space suit look sexy, float off into space nearly killed me the first time I watched it, why in the world was I watching such a horror happen again? I mean, losing George briefly to former pro-wrestler Stacy Keibler was hard enough to take, watching him drift off into space alone...without me....twice, well, that's more than any woman should have to bear.

Besides losing George to the infinite vastness of space, Gravity was tough for me to watch. I have issues with the whole running out of oxygen, freezing to death, and possibly burning up while entering the atmosphere, type conditions. I know there are brave astronauts and scientists who risk the dangers of space due in part for the betterment of mankind, and due in part because it really makes them look good on match.com, and I say, kudos to them. Lord knows we sure are doing a number on this world so someone, yes, even if it means sacrificing George, better find us a new world fast.

Along with these super smart rocket scientists, there are even some dumb, adventure seeking civilians ready to board the Virgin Galactic Space Shuttle for a mere $200,000 in order to experience the rush of leaving the Earth's atmosphere for a round trip ticket to space (and hopefully a better outcome than poor George). AWEnestly, for me, the only thing scarier than blasting off from this world in search of a new world in the oxygen-less, freezing cold, meteor ridden, vastness of space, would be blasting off this world with The Biebs in a drooping butt spacesuit strapped into the seat next to me.

Call me a scaredy cat, a cissy, a wus or boring, but, there is no way I'd want to leave the world that I have become so accustomed to, a world with plenty of oxygen, AC, heat, and Oreos that don't float away when you try to dip them in milk that also floats away, for a world that is confusing, different, scary and hard to navigate. Especially, if I had Bieber leading the way. 

Even if I didn't burn up, freeze to death or run out of air, but, landed safely in a new world, what if upon my arrival, no one understood me? What if no one tried to understand the world I came from in order to make me feel safe, happy and at home? What if no one cared enough to learn about my world and all they wanted was for me to assimilate to their world, so I wouldn't look or act so different from the local natives? Sometimes, it just feels safer and easier to stay in my own world, and I would bet a $200,000 First Class ticket to space, that Ryan feels exactly the same way.

I have to be AWEnest folks, there are days, ok, fine, weeks, where I feel like it's safer, easier and better to stay in my world, so I constantly suit Ryan up and do my best to shuttle him into my world, while often forgetting to put on my spacesuit and enter his. Ryan often fights this ride, because to him, his world is far superior and much easier to navigate than mine.

This summer, more so than any other time, it has felt like Ryan and I have been living in two different worlds. So, in order to close the space between our two worlds, I have been busting my butt to strap Ryan into a space shuttle and rocket him into my world, with very little regard to what he is leaving behind in his world.

I rationalize these space shuttling decisions by reminding myself that my neurotypical world is where most people live and where most people are comfortable. After all, isn't my world the acceptable ideal? A world where people socialize, communicate and interact with one another to make a happier, productive world. Not a solitary world, where video games, television shows, silence and the oh, so great Steve from Minecraft, is preferred over all other lifeforms?

I have spent so much time and energy telling Ryan to "check back in", "turn off the game", "go outside and play", "come to the store with me", and yes, even, "Earth to Ryan", yet, I have spent very little time or energy visiting his world and finding out what is so life sustaining for him there. After nearly burning Ryan up, time and time again, while trying to pull him into my orbit, I decided it was time for this scaredy cat girl to break out of the comforts of my world and join Ryan in his. Turns out, Ryan's world wasn't so different from mine, and the bonus was, I didn't even need a spacesuit.

Ryan was in his world, in his bedroom to be more specific, playing Minecraft on the laptop with his iPod Touch right next to it playing some type of music. And for a change, I did not try and force Ryan into leaving his world and coming to visit me in mine, instead, I sat down next to him and asked Ryan what made his world so special. This opened a portal into his world he very rarely shares with me, or with anyone, because most people, including his guilt ridden mother, are too busy trying to close that portal in order for him to join a world where it is often cold and the air feels so thin that it makes it hard for my beautiful boy to breath.

After propping Ryan's portal open, and spending time in his world, it turns out, that Ryan's world is not so different from mine. He was listening to Minecraft parody songs on his Ipod Touch while snuffing out creepers on Minecraft. Not so different than me listening to my latest playlist while snuffing out dust bunnies with the vacuum cleaner. These songs he was listening to, which are so unfamiliar in my world, are all parodies of chart topping songs that are very familiar in my world thanks to Pandora, Sirius, and iTunes Radio. I suggested that we play Ryan's music on the bluetooth speaker in my room so we could really jam to it. Ryan beamed at the idea.

As the first chords of Moves Like Creeper (sorry Maroon 5 it may top Moves Like Jagger) blared out of the speaker, I swear, the sun illuminated my boy and his world in a way I had not witnessed all summer long. Ryan's smile, his joy was palpable as I finally landed on his soil. 

Ryan sang the lyrics to Moves Like Creeper  while I belted out, "I got the mooo-oooo-oooo-oooo-ooo-oves like Jagger". Ryan was so happy while we both sang and danced on my bed that he didn't even criticize my "terrible voice" until at least 15 minutes into our sing off/dance off had begun. As we were singing, dancing, laughing and living together in that moment, I realized that finally both of our worlds had collided, and it was not a cataclysmic event, in fact, it was perfectly AWEsome. This collision has hands down, been the best night of my summer and I am so glad that I finally took the time to see the stars that make his world so bright.

As often as the gravitational pull of my world tries to suck Ryan in, I recognize that I need to occasionally shut down my gravitational field and shoot on over and join Ryan in his world. While there, I must look for ways that both of our worlds can collide with minimal damage to the lifeforms that inhabit our unique, but, strikingly similar worlds. I so frequently ask Ryan to risk his air supply to come to my world, yet, I get so caught up in breathing my own air, sometimes I forget to breath his.

I understand that the world of autism in many ways is very different than the neurotypical world many of us live on. I also understand that it is important for Ryan to assimilate to my world since that is the standard most inhabitants of this world expect, but, I think it is equally important that those of us who are aliens to the autism world, are respectful and kind, and that we do our best to understand what is so important in a world that differs from our own. We must respect those differences and allows those differences to remain when those living with autism visit our neurotypical world.

If the price of space travel is greatly reduced over the next few decades and I get a little braver, perhaps I will venture out into "the great unknown". If I do, I promise I will not sit next to Bieber, no matter how many trips he has taken before me or if he finally decides to pulls his pants up. 

There is no doubt that it is Ryan I will want beside me since he has become so successful at living in and navigating an unfamiliar world. Ryan has proven that no matter how difficult the terrain may be, how unforgiving the natives are, or how unfamiliar a new world may be, Ryan can adapt, and in the process, he has shown how important it is for others to adapt too. And if there is room on our shuttle, I will save a seat for Tom Hanks, since he survived a deserted island with only a ball named Wilson, and he landed Apollo 13 safely in the South Pacific. Sorry George, you will need to take another shuttle, I just can't trust you to commit. 

As I watched the announcements for the 2014 Emmy Award Nominations, I jumped off the couch like Tom Cruise and gave a "woohoo" when I heard Uzo Aduba's name (which I have no idea how to pronounce) as a nominee in the category for Outstanding Guest Actress in a comedy. Uzo Aduba plays Suzanne "Crazy Eyes" Warren in Netflix's Orange is the New Black series and she is crazy....and AWEsome!  

After I calmed down and realized how pathetic I was, I couldn't help, but, daydream just a little....ok, fine, a lot...about perhaps one day, when I'm old and gray...ok, fine, older and grayer...sitting on my couch and woohoo'ing after hearing Ryan's name announced as a potential Emmy Winner. Chances are it would not be in the comedy category, since, although Ryan is freaking hysterical, he rarely tries to be or rarely gets his own humor. Now that I think about it, that might actually make him funnier and more believable, thus more Emmy worthy.

It's not like I think an Emmy is eminent for Ryan because he has extensive acting experience (His only theatrical production was the role of Hippo in a second grade play...he was an outstanding Hippo) or because he has expressed interest in the theater (besides sitting in a movie theater seat watching the latest kid friendly movie with a bucket of popcorn), but, for a boy who can memorize just about anything, who can imitate any sound he hears and who can sing his heart out, a future actor seems like a good fit. Which most assuredly will lead to an Emmy nod.

Like any good actor or actress, Ryan can memorize lines. In fact, he has spent his entire life doing just that...using lines he hears elsewhere to communicate. Very rarely does Ryan use his own words, his own script, or his own lines when communicating. There is very little ad libbing and improvisation going on with this future Emmy Nominee. If it's not in the script, it's not in the show.

Most of Ryan's language is comprised of lines from television shows, movies, video games, or from the lips of yours truly. Even when my boy plays with the dog, it is my lines, my silly voice, my puppy love songs, my facial expressions, and my body language. However, since Ryan is so AWEsome, and because a 45 (what?) year old woman singing to a 90 pound lab looks a little like Crazy Eyes, it sounds and looks so much better when Ryan does it. Even though it may be unintentional, my boy totally upstages me and I am left back stage, alone, during the curtain call.

One of the telltale signs of autism is deficits in verbal and nonverbal communication, so it seems illogical that I would think Ryan has a future on the stage where language, verbal and nonverbal communication are essential. The thing is, an actor or actress is playing a role. They are not chitchatting with friends, trying to understand the social nuances of peers, or figuring out the appropriate response to a vague, hard to understand question, unless of course the role calls for that, and if the role did call for such situations, there would be a script telling the actor what to say and how to say it. Ryan would nail it.

During Ryan's first ever evaluation, I remember telling the folks from Early Intervention that Ryan rarely used his own language, almost everything he said was language he had heard elsewhere. This was the first time I heard the word "scripting". Ryan "scripts" lines, he has heard elsewhere, but, ironically is able to use them in just the right manner in a conversation. 

Whether it's Jim Carrey as The Grinch or Mike Myers as Fat Bastard (Ryan calls him "Fat B" because he isn't allowed to swear until he is 16...I swear I have no idea where that rule came from), Ryan has comedic impersonations down to a science, yet, over the years as Denial and Clueless sat next to me in the "audience" listening to Ryan's scripting, I was not laughing, applauding or enjoying the show, instead, I was wringing my hands and worrying. 

I would say things like, "Fat B" is freaking hysterical, but, I think Ryan is even funnier. Can I hear Ryan talk now?". To which "Fat B" would respond, in a near perfect impersonation, "Maybe. It did sound a little wet there at the end." Did I mention Fat B loves potty talk? Too bad Ryan is not a Ryan Gosling fan, he'd have all the girls at school swooning. 

At Ryan's most recent evaluation, his "scripting" and language deficits were at the top of my concerns and it turns out, I was right (sometimes I hate being right...not very often, but, sometimes). Ryan greeted the doctor and her staff in the most amazing British accent which had them all smiling, After the evaluation, the lovely doctor, in a very nice, professional manner basically told me that with as many kids as she sees, Ryan's language is poorer than most kids who walk through her door. Ryan's scripting, his verbal and non-verbal communication might just have peaked at the age of 12 and chances are, it's a good as it's gonna get. I felt like I was going to throw up. 

I believe this wonderful psychologist was typecast perfectly for her role. To deliver such powerful lines, in a very kind and compassionate way to this worried freaked out mom, could have easily won her an Emmy. This kind doc was doing her job and she had memorized her lines and played her role beautifully, but, Denial and I still wanted to exit stage right and silently hope the curtain fell on her head.

The doc had her lines down, but, sadly, I did not. There was no script for this worried mom. Being told that my beautiful leading man will always struggle with communication, as his critically acclaimed (let me have my moment please) supporting actress, I didn't know what to say or how to act. In that moment, all of the lines I had memorized over the years vanished, and I sat in that office with a serious case of stage fright.  

Even though I have spent hours trying to understand autism, and even though, I have always been told that autism is a "life long disability", with Denial wiping my tears and repairing my makeup, I recognized that this supporting actress, this director, this stage mom had always hoped that the antagonist, Autism would exit stage left and never, ever be cast in a performance of Ryan's again. 

I smiled through my tears and thanked the lovely doctor. I knew this kind psychologist was not the antagonist in this scene, nope, that role belonged to autism, and it always had. Talk about being typecast. And even though I felt like I had read and heard this script before, with a different cast, in a different scene, it still felt raw, new, and horribly painful.

I came home and cried and sulked just like poor Susan Lucci, who needed 19 Emmy nominations before finally winning the coveted award. In my heart, I believed that Ryan could still make progress, that he could find different scripts, different directors, different supporting cast and different settings that will enable him to do a lot more ad libbing and improvising. Just like directors have the ability to bring out performances in their actors and actresses that lead to Emmy Awards, with proper direction, Ryan may outperform any actor who has stood on the stage before him. 

Ryan is the protagonist of his production, as well as the executive producer and although he may steal lines from other cast mates, as well as upstage them with his charming AWEsomeness, I believe Ryan will never let the antagonist, Autism, steal the show. Ryan will continue to act out his scenes, and I will do my best to direct him to a happy ending. There will be production problems, creative differences, long intermissions and quite possibly the occasional strike, but, no one, not even Autism, can predict Ryan's upcoming scenes. No one can say how Ryan's story will unfold or how it will end, but, between the two of us, we can make a beautiful production that we will continue to share with others so they can see, that the protagonist can overcome whatever obstacles the antagonist puts in their way and that good guys do not always finish last.

This is not a dress rehearsal, this is the real, sold out show. I refuse to let anyone predict the script...not doctors, not therapists, not experts, not even Autism. Whether Ryan's performance is held before a live audience or in the comfort of friends and family, I promise you, that during the last scene, when the final lines of the script are spoken, and the audience demands a curtain call, I will quietly exit stage right, and watch my star receive his much deserved standing ovation. And quite possibly that Emmy.

I will be the first to admit that I love a good party. I love the friends, the food, the music, the atmosphere and yes, the cocktails. And as far as I'm concerned, there is no reason too far fetched to celebrate and have a party. In fact, it seems the older we get, the more random reasons we find to throw a party. Your uncle twice removed by marriage whom you have only met once and lives in Antarctica just got engaged? Woohoo, let's party! Your hair stylist, who you have wanted to cheat on for years, but, didn't have the cojones to ever do it, just announced she is leaving for the Merchant Marines? Let's party! The final season of True Blood is upon us and the vampire craze has been replaced by the Zombie Apocalypse? Let's cry our eyes out, and then party!

I think as grown ups, our party reasons have become more and more random as we age because when we were young, we didn't need an excuse to party, being young was reason enough. I can AWEnestly say, that with all my excuses, reasons, and justifications to party over the years, the folks in Pamplona Spain, regardless of their age, got me beat. It has never (not even when my Antarctica living uncle twice removed by marriage got engaged), ever crossed my mind to say, "Hey guys, let's have a nine day party, race through the streets with six angry, freaked out bulls chasing us, then kill the bulls and throw them on the grill. Oh, and I will bring the potato salad!". Nope the Spaniards party much harder than me since this is exactly (ok, maybe not exactly) what happened on Monday.

On July 7th, the annual Running of The Bulls took place in Pamplona, Spain. This suicidal tradition of blocking off the streets for a group of nutsies to try and outrun a bunch of bulls, without being gored or trampled to death, has been going on since the 14th Century, proving that stupidity clearly outlives both humans and bulls. In the event on Monday, one man was gored through the thigh, and several others were injured after being trampled by both bulls and other equally witless humans. This celebration sure makes our 4th of July party with sparklers and pork tacos (we did not kill the pig in a makeshift arena in my backyard, I bought it vacuum sealed at Wegmans) seem incredibly safe, and horribly dull. I do believe I singed a hair while lighting one of the sparklers. 

Although I may have never partied at the annual San Fermin Festival for the Running of The Bulls, and unless Hell does indeed freeze over chances are I never will, I have witnessed my share of near misses, almost injurious, get out of the way incidents with my own beautiful little bull.

Ever since Ryan was little, Dan and I would chuckle at how Ryan ran. Bent over, head first, and charging anything or anyone who got in his way, and you didn't need to be a matador waving a red cape or an imbecile running through the streets wearing a red scarf to get bulled over by him. Friends and neighbors who would see Ryan running down the street or in the backyard would comment about his future football career and Dan and I would dream of our NFL MVP Winner buying us a nice ocean front condo one day. 

Little did we know, that our charging bull's head first form was not his intentional preparation for taking out a matador or an all star quarterback. Much of Ryan's bull like form was a result of low muscle tone, or hypotonia, and his stomping, trampling, clumsiness was due to poor, or impaired, proprioception. Yeah, in other words, there were legitimate reasons that more often than not, my boy was like a bull in a China shop, or a bull in a street in Pamplano, Spain.

Low muscle tone is a fairly common characteristic in kids with an Autism Spectrum Disorder, particularly for kids like my Ryan who prefer more sedentary activities such as video games and computers to soccer and baseball. Low muscle tone makes Ryan's gait look sort of floppy and loosey goosey because his muscles, especially his core muscles, are not tight. 

I remember when Ryan was around four or five years old, I asked his occupational therapist why the skin on Ryan's belly closely resembled the not so tight skin on my belly. I knew my no longer 18 year old abs were a result of carrying three large headed children in my womb (as well as eating large bags of Oreos during each pregnancy), but, I didn't understand why Ryan's super soft, stretch free belly looked like it did. The therapist's reply was the first time I heard the word hypotonia. 

This low muscle tone has effected Ryan in numerous ways. Low muscle tone impacted Ryan's small muscles which made things like cutting with scissors and tying his shoes very difficult for him. Low muscle tone also impacts Ryan's large muscles which makes running upright and learning to ride a bike so difficult for Ryan, that most of the time he still runs like a bull and to this day he could care less about ever learning to ride a bike.

Now, along with low muscle tone, if you add a little difficulty with proprioception, which is basically the internal sense that lets you know where your body parts are without having to look at them, then you have yourself a little bull in a China Shop. 


Most of us know where our body parts are without having to think about them. As you read this blog post, you are not consciously thinking of your legs curled up underneath you or your hands holding onto your iPad, they are just doing it. Yet, without thinking about it, you are not falling off your chair or banging yourself in the face with your iPad (unless of course I am boring you to sleep) because sensory receptors in your body are telling your brain what to do so you don't have to think about it.

For Ryan, he seems like a bull in a China Shop because sometimes he struggles with knowing where his body parts are without looking at them. This is why he frequently steps on my toes, whacks me in the head, knocks things over, and stomps and crashes down our steps. And just like the bulls in the streets of Pamplano, if you don't get out of the way, you may get trampled. Often these near misses result in a minor flailing arm whack to the head, or a 92 pound, size 10 foot toe crush, and chances are, the exasperated victim will instinctively shout, "Ouch!" or "Watch it!" or "Be careful!" to which Ryan will exasperatedly reply, "Sorry, that was an accident.". And I promise you, it was. Much like the bulls in Pamplano, I assure you, Ryan just wants the noise of the party to subside and for everyone to get the he** out of his way. 

Those poor bulls running through the streets of Pamplano have crossed my mind on more than once occasion as I have watched my little bull run down the street to the bus, bent over with his backpack pushing his center of gravity even lower, his gym bag flailing in his arms having a near miss with the strings of the gym bag and the bus safety arm. After charging down the street and rounding the front of the bus, Ryan boards the bus with no significant injuries to himself or others. As Ryan stomps up the bus steps and finds his seat, I imagine there is the occasional head whack to a still sleeping, unassuming bus rider as Ryan's backpack or gym bag grazes their freshly coiffed hair, while Ryan happily takes his seat, completely unaware of how many toes he may have stepped on or heads he might have whacked reaching his destination. 

Unlike the bulls, running through the streets of Pamplano, my beautiful little bull is not aggressive and would never intentionally hurt anyone. Yes, changing his routine or accidentally picking up Sugar Free Jello Vanilla Pudding instead of the high octane sugar filled pudding may make Ryan see red, Ryan would still never charge at anyone (unless of course you took his Xbox controller and ran down the street). As his mother, whom he knows gives him unconditional love, I will occasionally get the intentional, ever so slight nudge to let me know he is angry with me, but, my boy would never gore or trample anyone, not even his dumb old mom who caused the Jello Pudding mishap.

As I read the headlines about the big party in Spain as well as the injuries, I couldn't help but feel sorry for the bulls. These bulls are placed in closed quarters with thousands of people screaming, prodding them, and intentionally wearing a color that pi**es them off while they innocently try to survive by getting from one end of the street to the other with a bunch of idiots running in front of them trying to get away. Making the bulls seem like the bad guys who in the end, get what they had coming to them. And it has been going on for centuries. It's a wonder we humans have not become extinct. We really are kind of simple.

This mom may be simple, not simple enough to crash a party and run with large horned bovine, but, simple enough to buy Sugar Free Jello Pudding instead of "Original" Jello Pudding (I really, really wish they would change their packaging) and simple enough to occasionally make poor decisions. However, regardless of my poor decisions, I know that no matter how many times I get the subtle shove for once again screwing up the Jello Pudding, or how many times I take an accidental backpack to the head, I will never run away from my little bull. I will always run along side of him, protecting him from people who misunderstand him, poke at him, prod him, and run away from him out of fear and ignorance. I know that as he gets bigger, his unintentional toe stomping will hurt more, but, I will try and smile as I say, "I'm fine." then go wipe my tears and nurse my throbbing toe out of sight.

I now know, that Ryan's chance of running down linebackers in the NFL are slim, but, I have seen him run past, trample over and take out numerous obstacles much bigger than a 300 pound linebacker that have gotten in his way. I believe that just like the bulls in Spain, once Ryan makes up his mind where and how far he wants to go, he won't let anything or anyone stand in his way. My boy, will one day turn the tables and take the bull by the horns. He will be victorious over the simple minds that once feared him, misunderstood him or ran from him. That my friends, is a party I would never dream of missing and I promise, you will all be invited.

A recent trip back to my childhood hometown for a baseball tournament, unearthed a slew of memories that I had not recalled in quite some time. Isn't it funny how a certain place, a certain smell, or a certain sound can transport you back in time? Perhaps some of those memories are best repressed in the deep recesses of your mind, while others, make you smile and long for days gone by. As I willingly shared many childhood moments during my drive down Memory Lane with my three kids, I found out my kids wished that most of my childhood memories remained buried along with how to multiply and divide fractions, in a place forever lost, never to be exhumed again. 

As the kids and I drove past one memory triggering landmark to the next, I would giddily shout out, "Look kids, that's where Mommy and her friends would sneak out of the pool at night and get into trouble!". Then as I swerved slightly off the road in a childhood flashback, "Oh, and that road right there is where we would go to kiss boys.". As I almost missed a stop sign, "Hey kids, put down your iPads, iPhones and iPods and look just past those trees is where we would go to rumble with other girls." (Kyle almost vomited that I said "rumble".). As we quickly approached out destination, "Check out that building right there, that's where Mommy and her friends use to go and listen to bands and go dancing.". My kids were not impressed, in fact they were mortified. 

Kyle tweeted, "Driving through my mom's town where she grew up and she showed us where she made out with boys." Ryan, while covering his ears, shouted, "Please stop talking, you are burning my ears with your inappropriate childhood!". Emma, who was the only one not embarrassed by my lack of filter sharing, was most intrigued by where I went to dance and the fact that I did dance. Poor innocent thing, was picturing her young, wrinkle free mommy wearing a tutu and a leotard while dancing across a stage like a sugar plumb fairy in The Nutcracker, not like a head banging groupie with big 80's hair wearing a black unitard and cut off Levi's. She did get the stage thing right, however, in her vision, I'm sure she didn't see the bouncers tossing me off the stage as I tried to grab the microphone.

I have always loved a good song to dance to...back when I was young and even today. Just a couple of weeks ago, a good ole' 80's Aerosmith tune came on Pandora and without missing a beat, I got my groove on in the kitchen horrifying Kyle, once again (the joy I feel embarrassing my teenage son is indescribable), and pinching a nerve in my no longer 21 year old neck. All those years of head banging has done quite a number on my cervical spine, so I grabbed the Aleve and kept on dancing. Regardless of age and the amount of damage to my C2 vertebrae, I still love to dance, but, like any good 80's/90's headbanging dancer, you want to mix up the music, hear a different song. Some songs, however, people like to play over and over again, no matter how many times you have tried to get them to change the music, feel a different beat, it always ends up being the same old song and dance.

Last weekend, as I danced down Memory Lane, Ryan wanted to turn the van around, due in part to my "inappropriate childhood", but, also because once the road trip is over, Ryan is ready to head back home. Ryan loves traveling to see family and friends, but, upon arrival he struggles outside his comfort zone. Kyle's first baseball game was at the park where I swam at the public pool during my middle school and high school years. As I sat back quietly looking around and regressing, Ryan sat next to me quietly (at first) and struggling.

It was hot and sunny and the only place that offered shade was underneath a pavilion where all the fans from both teams were sitting, yelling, cheering, and clapping for their team. In other words, poor Ryan thought while Mom was so busy driving down Memory Lane, she must have missed a turn and drove him right to Hell. 

Too much heat, too much sun, too much noise, too many people and two wasp sightings were already taxing my boy, then an accidental Powerade spill all over his shirt and shorts, just about threw him over the edge. Ryan wanted his exact same shorts and shirt dried immediately, he wanted the game to end, and he wanted his extended family, who came to watch the game and who love him to pieces, to stop trying to make small talk. He became angry, cantankerous, and withdrawn. My trip down Memory Lane came to a screeching halt as I quickly made a U-turn onto Present Street.

With all four of Ryan's 80 year old grandparents at the game, Ryan refused to give up his chair to one of them. He ignored the questions, suggestions, and hopefully, the stares, judgement, and remarks as he moaned and whined for most of the 7 innings. For friends and family who don't see Ryan often and who don't "get him" or get Autism, some believe that Ryan has "gotten worse". Those same people believe Ryan's behavior is a direct result of not enough discipline and "spoiling him", in other words, poor parenting. As his parents, if we just "grabbed him by the shirt collar and made him move out of that chair", Ryan's autism, his sensory overload, his stubborn behavior, and his struggle with communication would disappear as quickly as my headbanging dancing days. 

For friends, family and baseball fans who don't "see" Ryan and who don't know him well, they don't see that the comfort of the chair he always sits in, regardless if his 83 year old grandfather does not have a chair, is the one familiar thing that feels like home to him in a strange place filled with sun, heat, wasps, shouty baseball fans, and wet, sticky Powerade. This chair is the one thing Ryan can count on not to disrupt his routine and make an already taxed out, overloaded sensory system, even worse. People who don't see Ryan believe he should not be catered to with special chairs, special routines, special food requests, special brands and special excuses because they believe Ryan will "get over it", "outgrow it" and "eat when he is hungry". 

No matter how hard Dan and I try to educate, advocate, and explain how important it is for people who don't see Ryan to change their way of thinking, to see the world through his eyes instead of their own, to finally change the music, it's the same old song and dance. And even after all these years of dancing, my feet still get sore, my heart still gets heavy and my soul still gets weary as I desperately long for people to play a new song.

I have heard from many other parents loving a child with an ASD over the years that they too get tired of the same old song dance. They get so frustrated with family members and friends who just don't get it. People who judge instead of understand. People who criticize instead of support. People who blame instead of accept. These are the same folks who blame sensory overloaded outbursts on lack of discipline. The ones who blame picky eaters on parents who spoil them. The ones who think Ryan's struggle to communicate is an act of defiance. The ones who compare a child with an ASD to a neurotypical child and who don't understand why your child is so stubborn, argumentative, bad, (insert any negative word here), and why Little Johnny is so good. The ones who are so quick to judge, so quick to disregard and so quick to blame. The ones who are the first to say, "It must be the parents fault.".

I try to understand, particularly for the older generation, that autism didn't always exist, but, neither did rock and roll, headbanging, hip thrusting and Elvis, yet over time these strange new ways, although still misunderstood by some, have been accepted by many. I wonder if Elvis' mom felt the judgmental stares of a generation boring through her as kids across the world started pelvic thrusting on the dance floor. Like any mom, I bet Mrs. Presley's shoulders were big enough to bear it. Regardless of the size of our shoulders, the weight of judgement and misunderstanding is still incredibly heavy.

In order to alleviate some of this misunderstanding, there are many websites where parents can get business cards made that say "My Child has Autism" so if their child is struggling they can hand these cards out to the judging eyes of others. I understand why parents feel they need such a card, but, it makes me sad that such a card is necessary. When a two year old is having a meltdown at the check out line in Target because she can't have the toy that is purposely placed directly at child eye level so you will buy said toy to avoid said meltdown (retailers are such schemers), the mother doesn't need a card which says, "My Child has the Terrible Twos" that she feels compelled to hand to the shopper behind her rolling her eyes at such a "spoiled" child.

My days of dancing on the stage (and subsequently being tossed off by the bouncers) may have come to an end due to my unitard and Levi's no longer fitting me and the arthritis forming in my old headbanger neck, but, my days of educating, advocating, and supporting my son and kids like him have only just begun. I will continue to dance in my kitchen where I can quickly find the Aleve and I will continue to advocate for children and families living with Autism in the hope that one day, a My Child has Autism card won't be necessary. 

I hope that in time, for those folks who insist on continually dancing to the same old song, over and over again, that they will at the very least, one day change their tune and that the judgments, the stares, and the misunderstandings will disappear as quickly as my 1990's big hair, headbanging, dancing days. The song they hear, is truly making them miss out on the beauty of the dance.