First of all, I don't look good in hats. I've never really had that good hat hair or a good hat face, so I guess it's ironic that, like most moms, I wear many, many hats. ​

I am the mother of three incredible kids, Kyle, Ryan and Emma. Every day I wonder what I did to deserve them and I thank God, the Fates and whomever for believing that I did in fact deserve these three fabulous children, despite all of those not so deserving moments during my college years. However, when my middle son Ryan was diagnosed with autism, initially, I also cursed God, the Fates and my sinful college years for taking my son and my family on a journey we never asked to embark upon. 
​
​Autism became part of our vernacular over 12 years ago and since the day we heard the word, "autism", I began trying on and wearing many different hats. Although my mom hat is without a doubt my most well worn and beloved hat, I have my advocate hat, my blogger hat and my trainer hat that over the past few years have seen their fair share of wear and tear.

When you have a child with any kind of different ability, you quickly go shopping for an advocate hat because you know that there is no one advocate hat that is going to fit like it fits on you. You wear that hat while you search the internet for therapists, doctors or dentists who will "get" your kid. You wear it to IEP Meetings, to restaurants, the grocery store and on vacations ready to fight for your kid and educate anyone who will listen. Sometimes you wear your advocate hat right over top of your mom hat which may look ridiculous, but, you know it's necessary.

When advocating in the check out line at the grocery store didn't seem like enough, I decided to start a blog (with Ryan's permission), entitled The AWEnesty of Autism over six years ago. Time for a new hat. I truly thought maybe my mom would read my blog and she does (or at least she says she does), but, I never imagined the number of moms who were looking for a safe corner of the internet to share their hopes, their dreams, their tears, their ugly mom moments and their well worn hats. More importantly, I never dreamed what my readers would give to me. It is indescribable and I am so grateful to each and every one of them and their sons and daughters for their willingness to let me into their hearts while wearing my blogger hat.

Not long after getting used to how I looked in my blogger hat, I found myself trying on a new hat. As a former juvenile probation officer and the mother of a son with autism, I was asked to work with Pennsylvania's ASERT (Autism Services, Education, Resources and Training) Collaborative. In the past four years, as their Justice System Consultant, we have trained over 6,000 police officers, probation officers, judges, attorneys, detention staff and child welfare staff throughout Pennsylvania on how to safely interact with individuals with Autism Spectrum Disorder. The positive response to this training and the universal need from all aspects of the justice system has been incredible and I am so very grateful for the opportunity to educate these audiences who are so willing to listen. After each training, I come home and take off my trainer hat and put on my mom hat and I'm thankful that each one fits me well.

Along with my many hats, I also wear a bracelet regulary with my favorite quote from Mark Twain, "The two most important days in your life are the day you are born and the day you find out why." I've been blessed to have three important days. The day I was born, the day I became a mother and the day we heard the word "autism". That last day took me a while to realize the impact it would have not only for my son, but, for my family, for me and for the people I am fortunate enough to interact with wearing all three of my hats, even if I don't have a good hat face. 

This post was created with the help of my 17 year old son Ryan, who is autistic. Thank you Ryan for offering your insight as you continue to take on a world that you struggle to understand and that struggles to understand you day in and day out with such courage.

As a mother of a teenage son with autism, I often wonder if the reason my son spends so much time alone, is because the world, especially the world of teenagers, doesn't understand him. Sure, my kid struggles to understand some of the social rules of teenagedom, due in part to his autism, but, how can we expect neurotypical teens to interact with our autistic teens if we don't educate them on some of what they may see?

Ryan and I came up with a few examples of what a Neurotypical Teen (NT) might see and what an Autistic Teen (AT) might want them to see:

NT: Oh, that autistic kid is sitting by himself again. Guess he prefers to be alone.
AT: Yeah, sometimes I’m afraid to take a risk socially because I'm worried I will mess up, and sometimes I do need a break from people, but, sometimes being alone is lonely.
 
NT: Check it out, the autistic kid is talking to himself again.
AT: I kind of am talking to myself, (it's called "scripting"), but, that’s because I am remembering a funny movie, meme or YouTube video. If you ask me, I might share it with you and make you laugh too.
 
NT: Uh oh, he’s gonna lose it, check out how fast his arms are flapping.
AT: I bet when you get anxious or excited your legs bounce up and down or you twirl your hair or bite your nails. Same.
 
NT: You know, that autistic kid never responds and he hardly says anything.
AT: Sometimes it’s hard to turn my thoughts into words, but, that doesn’t mean I’m not listening or that I don’t have something to say.
 
NT: That dude doesn’t really seem to get me or how I’m feeling.
AT: Sometimes I struggle with reading the emotions of other people unless it’s really obvious like you are laughing or crying. I do have a lot of empathy though, once I know what you are going through. You just might need to share with me how you feel.
 
NT: Sometimes that autistic dude is a little too honest.
AT: You are right, I am honest. It doesn’t occur to me to lie, even if a lie might spare your feelings. I don’t mean to hurt you with my honesty though.
 
NT: That autistic kid's parents must never take him shopping, because he wears that same shirt ALL THE TIME!
AT: You’re right, I do wear this same shirt ALL THE TIME, but, that’s not because my parents won’t buy me new shirts it’s because I feel more comfortable when things remain the same and there is nothing more comforting than a worn in t-shirt.
 
NT: You know, it’s hard to trust someone who doesn’t look you in the eye.
AT: Eye contact is hard for me, it can be very distracting and upsetting to look you directly in the eye. It doesn’t mean that I’m not listening or that I am not trustworthy.
 
NT: Wow, that autistic kid is so weird.
AT: If “weird” means different, you are right, but, how boring the world would be if we were all the same! Take a chance to get to know me, you might find we have more things that are the same than different (“weird”).
 
NT: Wow guy, I was JUST trying to give you a pat on the back to let you know you did a great job, you didn’t need to shove me.
AT: Thanks for feeling proud of me, but, sometimes unexpected touch, like a pat on the back, doesn't feel good to me. Just telling me you think I did a great job will make me feel happy.

NT: I don't know how to talk to that autistic kid, I'm always afraid I will say or do the wrong thing and freak him out.
AT: You might say or do the wrong thing, but, so do I, that's what makes us more alike than different. Even if we both say or do the wrong thing, I promise I will always remember that you tried.

NT: Wow, I just talked to that autistic dude, and he is really pretty cool!
AT: Told you.

NT: (Days later): Hey Ryan!
AT: Hey dude! ("Finally.")

So, last week I slipped a little. Just a small stumble over something I didn’t see coming. I guess it was more like someone I didn't see coming. It was the keynote speaker at an autism conference I attended. Wait, sorry, that sounded like finger pointing. It wasn’t the keynote speaker, who tripped me, I tripped over myself. I got in my own way.  Again.

Sure, what the keynote spoke about, what he said may have been what tripped me up, but, I’ve gotten fairly use to falling, hoping no one sees it, brushing myself off and jumping up again. This time was different. This time, I didn’t have the hands there that always pick me up, so I stayed down a little longer than usual.

The keynote speaker was a very respected autism researcher and he was fabulous and brilliant. When I saw all the science and research info in his bio, being the kind of person who took geology with all the college jocks so I could avoid chemistry, biology and any number of other “real” sciences (just kidding geologists), I expected to be bored and check my Facebook newsfeed. Boy, was I wrong. I was mesmerized and didn’t once check Facebook.

The science of autism and the research that goes into it is fascinating. We are just beginning to understand the incredible facets of the human brain, and therefore, we are also just beginning to understand autism. So, I sat in my chair listening, taking it all in and not really caring where my friends checked in for lunch that day.
 
As I sat taking notes and making a list of questions I planned to ask this incredibly brilliant researcher, he began talking about the causes of autism and that’s when I started to slip. I felt that same ache in my heart that I felt 13 years ago, that same doubt and wonder that slowly crept up my spine, that same guilt of not knowing how or why and what, if anything, I had to do with it. And just like that, I stumbled and was on my ass. Again.
 
I’ve been here before. Lots and lots and lots of time. What did I eat when pregnant? What was I exposed to when pregnant? What did I feed my son? What did I expose him to? Was it my genes or my husband's genes? How did it impact him and not my other kids? What caused my son's autism? It’s been a long time since I stumbled back here and it took me a little longer to get up. Did I mention that I was at a conference? Overnight with no kids? Plenty of time to stay on the ground and not get up, and with the one set of hands who always helps me up playing Fortnite in his bedroom 45 miles away, I allowed myself to stay down for a few hours. I hadn't been down that long for quite some time.
 
So, yeah, I stumbled. I wondered. I questioned. I blamed. I Googled. I fell. Hard. Again.
 
And as I lay there, surrounded in doubt, guilt, wonder and worry, my phone tinged. A text alert. I almost didn't get up. I almost didn't get it. After all, I had fallen and decided maybe a little wallowing alone in a hotel room was just what I needed. But, then I remembered, I'm not on this journey alone. People need me. My son needs me. I picked up the phone and for the first time since I had stumbled, the tears fell.

"Hi”. Two simple letters, one simple word that pushed me back up on my feet and reminded me that "how", "why" or "what" wasn’t nearly as important as "who". And “who” may have not been physically there to pull me to my feet, but, his simple “hi” was enough to get me off my ass and move forward. There is no time to go back and going back does not do him, or me, any good.

"Hi baby. I miss you." No response back. None was needed. He knows. My son knows that even when I stumble, even when I go back, even when I fall really, really hard, I will pick myself up and be there for him. Always. Sure, I may lick my wounds for a few days, but, I get back up and feel stronger from the fall. This wound licking is NOT because I wish my son were someone else, it is not because I think he needs "fixed" or "cured", it's because like any parent, I want the world to see him as I do, brilliant, gifted, funny and determined and unfortunately, that does not always happen.

Yes, I know, the science of autism is incredibly important as it leads us all to understand the what, the why and the how, but, for me, a mother loving a child with autism, the who is what matters most. The who is here, present and indescribably amazing. The who needs supports and resources to help others see how amazing he is and what he can offer this world. The who needs to be understood and accepted just as he is. The who needs me. And the who, my son, keeps me going forward and picks me up when I trip over myself and fall. Hard. Again. Thank God, because I’d never get up without him.

​Good things come to those who wait. We have been waiting for a long time. Some of us, much longer than others. But we waited. We advocated. We raised awareness. We knew what others didn’t. And now our patience has paid off.
 
Julia is here.
 
Julia, a muppet with autism, has found her way to Sesame Street and she is gonna chase the clouds away for many young children with autism. I am so incredibly grateful that Sesame Street has brought Julia to life, but, selfishly, I wish Julia would have come about a decade sooner. Don’t get me wrong, I LOVE that FINALLY autism has become so mainstream that adults, kids and now muppets with autism are showing up on your television screen, on the big screen and on Sesame Street, I just wish for my son and the kids who came before him, Julia would have come sooner.
 
Julia is going to do amazing things for young children with autism. A-mazing things. Kids are going to be more aware, more accepting and hopefully, more kind. The end result will be more, not less. And for many years, autism was perceived as "less" and I think that is why ten years ago, we weren’t ready for more…or for Julia. Ten years ago, differences of any kind, weren’t as accepted as they are today.
 
Sure people with autism and their families have been waiting for Julia and for the world to see what they have always known, that people with autism are more like “us” than they are different. Autistic individuals may process information differently than most of us, they may not communicate in the same way and their behaviors may be different, but, in the end they want to be loved and accepted just like all of “us” and just like every muppet on Sesame Street.
 
Had Julia come when Ryan was younger, he might be more willing to take risks socially now that he is in high school because the children in his preschool and elementary school watching Sesame Street would be aware that different did not mean less. They would understand that when Ryan didn’t respond to his name right away it didn’t mean he wasn’t listening or he didn’t care what they had to say, it just meant he needed more time to respond.
 
Those kids would have grown up understanding the reason Ryan had to be taken out of class before the fire drills was not because he was “weird”, but, because the noise was too much for his body to handle. Julia would have helped Ryan’s classmates understand his sensitivity to noises, his fabulous way of communicating through scripts and his desire to be included and accepted in the classroom, on the playground and in the cafeteria regardless of his limited eye contact when his friends approached him.
 
If Julia would have taught Ryan’s classmates HOW to interact with a classmate with autism, all of the burden of RYAN knowing how to interact with THEM wouldn’t have fallen on his tiny 5 year old shoulders. Ten years of awareness and acceptance would have made a big difference. Ryan’s classmates would have had ten years to understand autism, to understand him and to accept him, just the way he is. Oh Julia, I love that you showed up, I just really wish it would have been sooner.
 
Now that Ryan is in HS he struggles to interact socially and because he is “not much of a risk taker”, he doesn’t make many efforts to try. And because there were no muppets on Sesame Street with autism for the past ten years, his classmates don’t have a clue how to interact with him. This lack of awareness and education leads to isolation, it leads to depression, it leads to accepting that being alone is better than risking a social catastrophe.
 
If Julia would have showed up on Sesame Street ten years ago, Ryan might not feel so ashamed of the word "Autism", because kids would have been taught autism may be different, but it is not less and he would believe that too.
 
Julia could have really made a difference for Ryan. I hope that for the parents just hearing the words, “Your child has autism” they realize that there is a tiny yellow character with orange hair living on Sesame Street who is going to help them and their child pave the way to awareness and acceptance. She has arrived just in time for your child and his friends.
 
Thank you Sesame Street. I know that maybe the time wasn’t right ten years ago and maybe “we” weren’t ready for a little girl who flapped her hands when she got excited or had meltdowns when a siren went zipping past Sesame Street, but, we are ready now. Thank you for giving her to all of us. We really, really need her.

My yard (and my pool) are filled with leaves, so, I guess that means the falling star I wished (begged) upon, for just one more month of summer, burned out before my wish reached it. Never trust a hot, firey, ball of gas burning in the atmosphere thousands of miles away, to make your dreams come true.

Along with the leaves, the crisp air and everything pumpkin flavored, tis the season for germs too. We've already had one stomach virus, three colds, a sore throat, and a horrific cough that I immediately assumed was the first east coast case of Enterovirus D68 (My parents actually called to see if I was "aware" of this horrifically contagious virus. Silly parents.) that has been plaguing the mid-west. Thanks to all these nasty little germs, when the seasons change, sadly, so do my kisses. That's when my full smack them on the lips kisses quickly morph into, at best, a kiss on the cheek, or during a serious stomach virus outbreak, perhaps a quick peck on top of the head (as long as no vomit hit the top of their head) or a butterfly kiss to a fairly germ free area, like the elbow.

When kids are little, they love smooching you right on the lips, germs be damned. And it's cute and adorable and you enjoy it (germ spreading and all) because you know it wont' last forever. The kisses, the snuggles, the hugs, will change as quickly as the seasons. They may become fewer, less publicly displayed, given only in exchange for a bribe, or disappear all together. The love that was once behind the kisses may feel like it changes too and I guess in a way it does, but, it does not make the love or the kisses any less real.

Kisses come in various forms depending on the kisser, the kissee and whether or not flu shots have been administered yet. There is the peck on the cheek kiss, the smooch on the lips kiss, the butterfly kiss, the Eskimo kiss (which is called a kunik and the nose rubbing thing is not done because Eskimos believe their lips will freeze, it's done because typically noses are the only thing exposed in subzero temperatures), and the French kiss (blush). There are kisses reserved for our children, for our parents, for our grandparents, for our friends, and for our lovers. Believe it or not, there is actually a science for studying kisses, it's called Philematology. Imagine if under your yearbook photo you had "Future Philematologist" as your chosen career path. I bet you wouldn't have had any problem finding a prom date, as long as your date's parents didn't see the yearbook.

I wonder what a philematologist would call a kiss that nearly suffocates you? What kind of hypothesis could a kissing scientist make of a hard to breath because while kissing, the kisser's nose is pushed so hard on the kissee's cheek that air stops circulating to the kisser's lungs, type of kiss? This is not an intentional kiss of death like a mafia mob boss places on his next unsuspecting victim's cheek, signaling an equally unsuspecting "swim in the river", no, this is a kiss to the cheek of a boy who can only tolerate deep pressure smooches to his cheek. Butterfly and Eskimo kisses are not wanted here. I guess that rules out a move to Alaska or Antarctica for Ryan.

I have always been a snuggler. Many days my lips would be chapped form kissing the tops of my babies sweet smelling heads. Each of my kids were smooched and suffocated with my love equally. When Ryan was little, before we heard The A Word, my friend Denial would assure me that my worries of "something being wrong" with Ryan were ridiculous because Ryan loved to be snuggled and smooched. Denial was right, Ryan did love snuggles by someone he trusted, someone he knew, but, it took years for those snuggles to be reciprocated. Years until those sweet chubby arms found my neck, and even longer until those sweet tiny lips found my cheek. I hoped upon hope that one day, my snuggling would be returned, but, while I waited, I kept on kissing, hugging and snuggling. It was so worth the wait.

For a while, Ryan tolerated my kisses, even smiled after he received one. In time though, as Ryan got older, my smooches would often get rubbed off immediately, and vigorously, even if they weren't "wet" and even if I appeared relatively germ free. Ryan's removal of my kisses did not happen because Ryan was a germaphobe like his mother, it was because my light, gentle kiss on the cheek, or the head, was as bothersome to Ryan as the Mafia's Kiss of Death.

One time, Ryan's Occupational Therapist, Miss M noticed my little smooch to Ryan's cheek that he immediately tried to rub off with the palm of his hand. I hadn't noticed Miss M observing us because by then, I had grown use to this behavior and tried not to take it personally (uh-huh, right). So, I was surprised when Miss M explained that it was the light touch of my kiss that caused Ryan discomfort, so in order to remove the "feeling" of my soft, tickly, feeling kiss, Ryan would apply deep pressure to his cheek to sort of counteract the light touch of my kiss.

That was when I learned about the positive and calming effects of deep pressure for kids with an ASD. A light touch, like a kiss, for someone with a heightened sensory system, tends to alert the nervous system, putting the fight or flight mode into high gear, but, deep pressure, like a big squeezie tight hug, a squeeze to the arm or shoulder, can have a more calming effect.

There are weighted vests, weighted blankets, weighted shirts for kids and adults with an ASD that offers them the deep pressure their sensory system so desperately craves. Many experts believe that the reason many kids and adults with an ASD love water is because water provides that feeling of deep pressure, the sensory input their nervous system needs to help calm them down or just to make them feel better.

It is this same deep pressure need for Ryan that has caused our kisses to change as quickly as the seasons. The easy, gentle kisses of childhood have been carried away with the summer sun. They have been replaced with kisses that border on a take your breath away, knock you over, strip all the final leaves off the trees, winter time nor'easter. When I go to kiss that teenage cheek, in order to get that deep pressure feeling Ryan's sensory system craves, Ryan pulls the back of my head and firmly pushes my kiss so tightly against his cheek, I am almost knocked over. I laugh and tell Ryan he is going to suffocate me or break my nose, and he eases his grip and starts giggling. Ryan understands that my kisses reaffirm my love for him. Ryan may not need or want that kiss, but, he knows it's something Mommy loves to do. So, although a kiss to the cheek may not be what Ryan needs to understand my love, I am fortunate because Ryan has found a way to tolerate my kisses. I just need to take a deep breath, get my balance, and have an Ear Nose and Throat doctor on standby, before going in for a goodnight kiss.   

I have always been grateful that for the most part, Ryan has tolerated my snuggles, my hugs, my kisses. For many parents loving a child with an ASD, those light touches are too much for their sensory sensitive child to handle, so many kids pull away from a loving touch quickly, or don't allow it at all. These parents have had to find a different way to show their love and the lack of kisses and hugs don't make a parent's love any less, in fact, I believe it makes their love that much deeper. These moms and dads have put away their wants, their needs for hugs, snuggles and kisses, to give their child what they need, and after all, isn't that what unconditional love is ultimately about? Putting someone else's needs before your own....no matter how much it hurts.

This is why, even though Ryan no longer kisses my cheek ("Your skin tastes gross", and yes, I have tried numerous lotions and they all make my skin "taste gross"), I am grateful for any stolen kiss I can give to him, even if those kisses almost break my nose and lead to a slight loss of oxygen. So, regardless of the change of season, and what germs may be silently lurking in my house, I will happily risk a 48 hour bug for a 10 second deep pressure, possible cervical vertebrae misalignment kiss, to give Ryan and me what we both need to feel happy, calm and loved. 

If the Philematologist I contacted earlier is reading this post, please disregard my call. Like so many things on this autism journey, Ryan and I figured this out on our own.

When I awoke Tuesday morning to what I believe is the real official, there is no denying summer is over, and the kids are officially back to school week, through my bleary eyed, I wish I liked coffee morning haze, I saw a scuttlebutt on the news about some private nude celebrities' photos being leaked over the internet. Of course, like any good 45 year old mother who has three kids to get ready for school, I tossed aside the waffles and quickly turned to social media to see what all the hulabaloo was about. And sure enough, Facebook and Twitter were trending the news that photos of Jennifer Lawrence, Kate Upton and numerous other celebrities in various stages of undress, were downloaded from private phones for the entire world to see.

Ironically, I just watched Kate Upton in the movie, The Other Woman this weekend, and the bikini she was wearing in the film certainly qualified as a "various stage of undress" and although I get and respect the whole invasion of privacy stuff, I failed to see what all the excitement was about.

Yes, my 16 year old son would have loved a quick peak at Kate's nude selfie (which makes me throw up a little bit), but, I failed to see the media fervor over such an event. I mean, a new sighting of Nessie, the Loch Ness Monster (clothed or unclothed) wouldn't have created such a social media storm. Is that because even though there have been over 3,000 sightings of the mythical creature, some folks still have a hard time believing Nessie is real since they haven't seen her with their own eyes? Or is it because a topless Kate Upton selfie is living proof to doubters that "they" are real, which is even harder to believe than a giant, 1,000 year old sea creature? Whatever you believe, this week was living proof that naked celebrity selfies beat out the Loch Ness Monster any day.

Just like poor, can't go viral no matter what she does, Nessie, and Kate Upton's hard to believe "they" are real "lung protectors" (my lungs are so doomed), myths, legends, lore and fallacies abound throughout our society. Whether it's believing in Big Foot or little green man, or believing that Kim Kardashian and Kanye West will grow old together, some myths are based solely on what others have heard, seen, or believe and for many folks, that's all the proof they need.

The mystery of autism and how this complex disorder impacts each and every person living with autism so differently, has lead to many beliefs and fallacies that result from "believing what you hear". Myths about autism are almost as far fetched as the belief of a 1,000 year old sea creature living in a big lake in Scotland and the belief that beautiful celebrities never take nude selfies.

I have to admit, back in my Loch Ness Monster tracking days, when my BFF's Denial and Clueless would bundle up for a cruise around Loch Ness in hopes of seeing a mythical creature we had heard so much about, I too fell for some of those autism myths. Myths like, "people with autism don't understand or feel love" (nearly killed me), "people with autism don't need friends" (another tough pill to swallow), "autism is caused by poor parenting" (ouch), and my favorite, "people with autism all have savant like skills" ("Oh, just like Rain Man"). It was hard reading, seeing, hearing, and yes, sometimes believing such things about my son, but, just like Nessie and her fan club, sometimes you can't believe sight unseen, sometimes, you truly do have to see for yourself. 

Of all the autism myths, one that is particularly frustrating for parents is the belief that all people living with autism have some savant type ability, like Dustin Hoffman portrayed as Ray in the movie, Rain Man. The truth is, approximately 1 in 10 people with autism have savant skills, skills that are considered profound and are outside the realm of what is considered "normal". These savant abilities are typically found in math, music, memory, or art. With only 1 out of 10 "Rain Man" type abilities found in the autism population, that means 9 of those people living with autism do not have some prodigious ability. 

It is true that many people living with autism have splinter skills, a certain skill or skills that is well above their overall functioning in other areas, but, that does not make them a savant. That does not make them bound for Las Vegas to count cards. 

For example, Ryan's memory, and nonverbal skills exceed his verbal language and executive functioning. This makes Ryan typical in the atypical world of autism. Ryan also has an intuitive gift of music, his ability to hear a note, immediately name the note and replicate the note, falls in line with someone who has perfect pitch. Does having perfect pitch make Ryan a savant? I use to hope so. I use to pray so. If I'm AWEnest, I use to pray, "If Ryan has autism, then please let him have some supernatural, crazy skill. Let him be the next Bill Gates, Mozart, or Einstein. Amen.". 

As I became more comfortable and accepting of The A Word, I eventually stopped looking for Nessie in every large body of water I entered and I also began believing that Ryan's memory and his musical ability did not make Ryan a savant. These unique and special abilities just made Ryan, Ryan. 

A dear friend of mine has a son with an ASD. Just like every neurotypical child is different than the next child, kids with ASD are equally as different too. My girlfriend's son is much more social than Ryan, but, he has a harder time with school work. Our two boys' strengths and weaknesses vary as much as their interests and their hair color. 

One time, like all mothers, my friend and I were comparing notes on our two boys. A mother loving a child with an ASD finds the most comfort in discussing her child with another mother who "gets it". When we were talking about our AWEsome boys, I remember my girlfriend telling me how so few people actually do "get it" and how little "real" information folks have about autism. It seems, when it comes to autism, that more people believe in the myths, believe in what they hear, not what they actually see, when it comes to The A Word.

When my girlfriend would talk about her son, she would often be asked that mythical autism question, "Oh, what is he good at?". It may be rephrased in various ways, like, "What is his gift?"or "What is his special skill?". The words may be different, but, the belief, the myth, is still the same. If your child has autism then he or must have some savant type skill. And my girlfriend, who worried that her son was given this autism label, yet, didn't have some Rain Man like quality, would respond, "He's just Grant.".

"Just Grant", those two words, two words put together as a result of myth believers when one word should be enough, "Grant". The word Grant or Ryan or Hannah or Caden should never have to be uttered with the word "just" in front of such a beautiful name. "Just Grant" are two words that are filled with such meaning that, it's a wonder the words make it from my friend's heart to her lips. 

"Grant" should be enough, for these Loch Ness Monster, Big Foot myth believers. In fact, "Grant" should be everything, and to my girlfriend, "Grant" is not only enough, "Grant" is all she needs. However, for those who believe the myths, believe what they hear and not what they see, Grant, who falls in the 9 out of 10 kids with autism that do not have savant like skills, for some people, it may seem like something is missing. These are the same people who spend countless hours searching for mythical creatures like Nessie, Big Foot and E.T., looking for something they heard about and desperately want to believe exists, instead of seeing what really exists right in front of them.

Grant, is not "just Grant". Grant is a beautiful little boy who loves all things mechanical. Whether it's a $1.00 mechanical pencil, or a priceless heirloom, Grant loves to take things apart and create something new, using his imagination (which then dispels the "people with autism lack imagination" myth). Grant may not win his parents millions of dollars by counting cards in Vegas, but, that's okay, because Grant's parents already feel like they have struck it rich.

As a parent, it is hard to hear the words, "your child has autism". You spend days, weeks, months, and years convincing yourself that regardless of that label, your child will be okay, even though the myths of autism shroud a blanket of doubt around your heart as thick as fog over the Loch Ness Lake.

Whether it's a giant sea creature, an alien from outer space or a Kate Upton naked selfie, sometimes, seeing is believing. There are still many things we don't know about autism, many aspects about this complex neurological disorder remain as dark and mysterious as the alleged cave where Nessie lives on the bottom of Loch Ness Lake. However, there is one thing we do know, people living with autism want you to accept them, believe in them and SEE them with an open mind free of myths, legends and fallacies. 

Maybe if you do that, you will actually see for yourself and start believing in what is actually real, and not succumb to the belief of a tall tale that was told around a campfire, in a movie script or in a Google search in order to strike fear and ignorance in the hearts of the storyteller's listeners. You will see with your own two eyes, what his mother has known all along, he is not "just" Grant, he is Grant, and then you too will finally believe.

We just returned from four days at the beach. The beach....it's great to say the word "beach", type the word "beach" and think of the word "beach" and smile a real, genuine, feel it in your heart, smile. The word "beach" always makes me smile, however, for a few years, my smile went on a brief vacation to Siberia whenever The B Word was mentioned.

My smile didn't head north because I don't love the beach, oh no, I am, and always have been, a beach girl at heart...as long as it's not raining and the water is above 76 degrees and shark free. I have always loved the sand, the sun, and the waves, and believe me, I've got the wrinkles and sun damage from my carefree, SPF free days to prove it. However, once you have kids, days at the beach change. Carting kids and kids' beach essentials make the carefree beach days, not quite so carefree anymore. 

As young, carefree 20 something, I use to laugh at all the crap parents toted to the beach when I happily stepped onto the sand with a chair and a towel. Then I became one of them, sort of, in a way...not really. When you add a dab of autism to the sunscreen, swim diapers, shovels, pails, boogie boards, beach chairs and endless please keep them from whining, bribe them with anything regardless of the sugar content snacks, the once cool ocean breezes can feel as fiery as the gates of Hell.

When Ryan was little, The B Word, was almost as bad as The F Word. The sun, the sand, the wind, the sticky sunscreen and the shrill, ear piercing sound of the lifeguard's whistle was more than my sensory overloaded boy could take. You would think as a mother I would feel so badly watching my son meltdown as quickly as his overpriced Ice Cream Man popsicle, that I would have scooped him up and taken him back to the safety of his temperature regulated, sand free, ocean breeze free beach house, but, I didn't. Remember how I said I LOVED the beach? Well, come the fiery gates of hell or storm surge high water, this beach girl was determined to make my son love the beach too.

Year after year, as we endured tears and whining, bribes and threats, and after exhausting each and every possible distraction that would not make the sand feel so sandy, the sun feel so sunny, and the wind feel so windy, I would think, "Next year, he will learn to love the beach. Next year". 

Yes, each and every year, as the car was packed up and the beach gear was dragged up from the bowels of the basement, with the remnants of sand and dried tears (both Ryan's and mine) covering the shovels, the pails and the boogie boards, I would silently pray, "Let this year be the year my little man finally gets what all this "down the shore" fuss is about. Amen.".

For many years, my prayers went unanswered as I sat on my beach chair holding my sand covered boy in my lap as he burrowed his head into my chest and grinded sand into my second and third layer of skin in his attempt to protect himself from all things beachy. 

As I futilely attempted to remove each and every grain of sand from Ryan's stressed out body, I would see those "other mothers" and I can AWEnestly say, I kind of, sort of, really hated them. Those "other mothers" who sat in their beach chairs happily watching their children frolic in the surf and bury their siblings neck deep in the sand. 

Those "other mothers", whom I believed took for granted the perfect beach day. The mothers who stood along the shore, camcorder in hand proudly capturing such beautiful moments so that in their golden years they could reminisce these perfect child rearing memories in the years to come. As I stood by, tears streaking my sand covered face, silently and selfishly hoping a giant sand sinkhole would swallow those "other mothers" and their perfectly recorded memories up. Yep, I hated them.

Ryan oblivious to my tears, because he was literally blinded by his own sunscreen infused tears, would rub his eyes, which of course only made his wails of "burn, burn, burn" grow louder, didn't even know anyone else existed on the beach, let alone his feeling sorry for herself, trying to suck it up, mother. Ryan was too busy trying desperately to survive the onslaught of sensory stimuli, while I shot daggers at mothers I didn't even know and Ryan's big brother Kyle jumped in the waves....alone, hoping one day his little brother would join him. 

Little did I know, that my time, as a mom happily enjoying the beach with all her children, and Kyle's time (having a brother body surf the waves) was coming, we just had to be patient and wait. I hate waiting.

Being the beach lover that I am, as much as I wanted Ryan to frolic in the ocean like a dolphin and scurry across the sand like a crab, in terms of sea life, my son was more like an oyster than a dolphin or crab. 

Like an oyster, Ryan had a hard to penetrate shell that he used to protect himself from things unfamiliar trying to enter his safe, closed off haven. Over the years, Ryan has slowly allowed unfamiliar and foreign stimuli that are horribly irritating to him, inside his protective shell. And just like an oyster's natural reaction to a foreign substance entering it's shell, is to cover up the irritant to protect itself, Ryan too tried to protect himself by closing up to all things beachy. 

However, just like a pearl takes years and years to develop inside the shell of an oyster, over time, that once irritant that broke through Ryan's shell, has no longer become something to fear, but, something to behold. In an attempt to protect himself from outside stimuli, Ryan was creating something beautiful within the walls of his shell, something that I couldn't see from the outside. The beauty that lied within the shell needed time to grow and develop so that it could turn into something so exquisite and so rare, that was absolutely worth the wait. 

Finally this year, my oyster revealed the beautiful pearl that had been forming within. Yes, he whined about how long we were on the beach, and yes, the water wasn't his desired temperature, and yes there were too many "annoying people" around, but, this year, I sat on my beach chair like all the "other mothers" and smiled as I watched all my kids enjoying the beach. Unlike those "other mothers" though, I recognized the rareness of the moment and although we captured it with digital media, those moments are forever ingrained in my heart. Moments that were definitely worth the wait. 

Turns out, I wasn't the only mom harvesting oysters on this particular beach trip. Right down the beach was a group of mothers, who, chances are, at one time or another, hated all those happy smiling "other mothers" with their beach loving neurotypical kids like I did.  It just so happened that the same week we were at the beach, so was Surfers Healing http://www.surfershealing.org/, an organization that provides surfing opportunities for kids and adults living with autism. 

I watched as these kids who fight so hard to keep anything from seeping in between the cracks of their shell, open up just enough to experience something AWEsome. Many kids went into the waves closed up tightly and protecting themselves because they were afraid and unsure, but, they all came out shining beautifully to the applause and cheers of an entire beach. Yes, that day, I watched the shoreline shimmer with beautiful pearls who found pride and joy in the ocean waves while standing up on a surf board. While their parents looked on at the precious and rare gem that outshone any other.

Ryan may never love the beach like his mother, which will probably decrease the signs of aging and his risk for skin cancer, but, for this beach girl, there was just something different about this beach trip. There was a peacefulness about what is and not so much concern for what could be. Maybe when I finally stopped worrying so much about my little boy's protective shell, I could finally see the pearl that had been forming and growing inside all those years. I just had to sit back and wait. 

And just like a string of cultured pearls that takes a single grain of sand an entire decade to form, only time enables the exquisiteness of such beauty to shine forth and be appreciated in the precise color, shape and size it was destined to be.

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 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.