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Where's the Emoji?

7/15/2017

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We've all done it, we’ve all experienced it. We've all been on both the sending and the receiving end of a text gone awry.

You grab your phone to text your BFF some inane nonsense, you think you are being incredibly witty so in the excitement of your humor filled moment, you quickly peck at your phone, typing and chuckling at yourself, hit send and smile. Then, because you are so impressed with your wit, you read your humor filled words again and wonder if maybe the words on the screen didn't quite play out like they did in your head, so you mutter to yourself, "Hmmm...I wonder if she will get that...” and wish there was a way to unsend it if she doesn't. Then you sit, worry and wait to see if she responds with a laughing, crying emoji.

You may also have been on the receiving end of a misunderstood, misguided text. Example, you FINALLY have a grown up night out with your husband and damn, if you don't look good. So, you pick up your phone, try and take a picture of yourself in the full length mirror on your armoire, while trying not to cover any part of your fabulousness with your phone in the reflection, snap a pic and send it to your bestie.

You alternate looking at your phone waiting for her response and staring at your gloriousness in the mirror, when in a matter of seconds, you hear that magical ding that a new text has arrived and quickly grab your phone knowing full well she is going to agree with your mirror's reflection. However, once you read it you think, hmmm…wonder what she meant by that? “OMG! Your outfit!" with no emoji. Now, without that two heart shaped eyes emoji you don't know if your bestie approves of your look or if her comment should have had the monkey covering his eyes emoji like “OMG, I can’t believe you still have THAT dress and you plan to wear it. In public.” And you are left wondering if you were right and you do look damn good or if you should be changing your dress immediately. 

How did we ever communicate without emojis?

For many individuals with autism, who struggle with language and understanding emotion, participating in a social conversation is kind of like texting before emojis. Was that “fine” sent from your friend that you have to miss your lunch date, really “fine” since she didn’t have the capability to send the kissy face emoji indicating you are forgiven or was that “fine” dripping with sarcasm as you once again screwed up her day and she didn’t have the middle finger emoji to let you know she is more than a little annoyed with your inability to commit to lunch. So much is left to interpretation.
 
For my son with autism, interpreting other people’s emotions and feelings, especially if they aren’t glaringly obvious (like yelling in shouty capitals), is difficult for him. This often leads him to isolate himself since it is "safer" being alone. Ryan struggles to interpret people's facial expressions and body language so when there is eye rolling or arm crossing, which may help a neurotypical person understand what another person is feeling, it is often lost on him. He is also very literal, so sarcasm, idioms and slang tend to be interpreted very literally. "No the cat does not have my tongue! What would a cat want to do with my tongue?"  Because of these difficulties, in Ryan's mind, alone is better than a social, non-emoji blunder.

Imagine trying to communicate with a friend and not being able to know for sure if your friend is being kind when they say, "nice shorts" when they see you wearing your favorite pair of shorts for the fifth day in a row, or if "nice shorts" was meant to be hurtful and sarcastic. Someone with autism may think, "Well, they were smiling when they said it, so they must have been being kind", not understanding that sarcasm and rudeness can also be done with a smile. It's easy to understand then when you Google the word "Autism" and you see words like "isolated", "socially awkward" and "prefers to be alone" why that may be so. It has to be exhausting trying to figure out the context of each and every word AND how to respond appropriately.

So, the next time you send a text, first, choose your words carefully, and second, imagine the context of your words without that winky face emoji. Would the receiver understand with words alone that you were joking or teasing or could your words be misconstrued and if taken literally, be hurtful?

Keep this in mind if you are talking with someone with autism. If you say something like, "Your new shoes are dope" and the individual with autism looks confused, knowing full well his shoes do not resemble an illegal (in most states) substance, clarify it by saying, "Dude, I really like your shoes. I'm giving you a compliment" that might be all it takes for that autistic individual to go out of there way, take a risk, smile and tell someone they see wearing the latest cool Nike's, "Your shoes are dope" and getting a smile back in return.
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Making sure Ryan knew I was sad he didn't want to join us.
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Stay Gold

10/9/2014

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I have a confession to make. I promised that when I started this blog a year and a half ago, that I would be AWEnest. I promised I would be real and raw and that I wouldn't hide anything from my readers, so here goes....in 1983, I was a member of The Outsiders Fan Club. Wow. There, I said it. That was hard to admit, since when I told Ryan this little piece of mommy trivia, he said, "Wow, I can't believe how ridiculous you were as a child.". After such an embarrassing confession, and such a horrified response, I did not share with Ryan that I may or may not be 1 of 6 Likes on The Outsiders Facebook Page.

To say that I LOVED The Outsiders book and movie would be a gross understatement. I had 106 pictures of Ponyboy Curtis (cut out of my Tiger Beat Outsiders Fan Club Magazines) on my bedroom wall. As enamored as I was with Ponyboy, my two best friends were equally in love with Johnny and Dally. We may or may not have won switchblades at our local carnival (I know it was the 80's, but, who in the he** has switchblades for prizes in ring toss?) and carried them around to prove we were "tuff" like a Greaser. We dreamed of rescuing a bunch of little kids from a burning church and making headlines in our local paper, but, alas, we never got to be Greaser heroes which is probably best because even though the knife I may or may not have carried in my Jordache jeans made me feel tuff, at 13, I don't know that I would have had the courage to run into a burning church, kids or no kids.

PictureThe Outsiders movie, Francis Ford Coppola
Ponyboy, Dally, Johnny, and Sodapop were the Harry, Hermione, Ron, and Draco of my generation. The Outsiders, by S.E. Hinton was published in 1967, but, The Outsiders movie made the book come to life for my equally "ridiculous" friends and me. In many ways, my "gang" resembled the Socs more than the Greasers because we came from good homes, we were part of the "in" crowd, and we could afford switchblades at the local carnie, yet, we were still drawn to the unfairness, the harsh life and the stereotypes of the kids from the wrong side of town...the hoods...the punks...the delinquents...the Greasers. Whether or not I was an "insider", The Outsiders, was the coming of age novel that not only turned me into a reader, but, taught how stereotypes and prejudices can literally mean life or death.

Fast forward many, many, many years, and I am sitting at Ryan's 7th grade back to school night with Denial and Clueless sitting in the desks right next to me. When Ryan's teacher announced they would be reading The Outsiders this year, as quick as a flip of a switchblade knife, I regressed back to my middle school years. As I remembered sitting in my room reading The Outsiders for the first time, I thought, "Ryan is going to love this book. He hates to read, but, this book, these characters, are going to change all of that for him. The Greasers and the Socs are going to quickly replace Mario and Luigi.". Denial and Clueless assured me I was right and of course, those two never lead me astray.

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I swear it felt like the cold metal of a switchblade knife was shoved deep into my heart when the oh so sacred book, The Outsiders, was thrown at my head weeks later with the exasperated cry of, "This book is so complicated! I don't understand it at all!". It was like blasphemy to my ears. What? How could it be complicated? After all it's about friendship, loyalty, social norms, stereotypes, societal expectations, fitting in, not fitting in....ohhhh...wait a minute. For a child with an ASD, all those themes in one book would make their head hurt. Which is precisely why Ryan said, "I think the stress in my brain is going to make my head explode.". So, like any good mom, I went on Amazon and ordered the movie (I swear it was to help Ryan, it wasn't for me to relive my Greaser wannabe youth).

When I asked Ryan what he thought the overall theme of the book was about he said, "a warfare between the Greasers and the Socs". Ryan understood there was a fight. He understood (spoiler alert) that someone died. He understood there was a winner and a loser, but, what Ryan did not understand was the deeper meaning of the book. He did not recognize the stereotypes placed upon each group. He did not fully comprehend the "outsiders" versus the "insiders". Ryan did not see the subtle themes woven throughout the authors words trying to convince the reader that in many ways the Socs and the Greasers were very much alike, but, it was the stereotypes placed upon the two groups that lead them to believe that they were different. The fact that both the Socs and the Greasers, felt pressure from their "gangs", felt a loyalty to their friends, and that no matter what part of town they came from, they all watched the same sunset regardless of their differences, was lost on Ryan, because in his mind, this book was about a rumble and winners and losers. The end. Move on to a less complicated book please, preferably non-fiction.

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As I tried to explain about stereotypes and how they impact people's perceptions about others and sometimes even themselves, I no longer felt like Cherry Valance, caught up in the trials and tribulations of Socs and Greasers, I felt like a mom who tries so hard to make people see past the autism "Rainman" stereotypes and see the beautiful boy who lies behind the soft cotton Hollister tshirt (Ryan would never wear madras or a jean jacket regardless of what side of the rumble he was on). I want people to look beyond the autism stereotypes to a beautiful boy that is more like you than different. I want people to understand that if you would take the time to get to know Ryan, many of your stereotypes would expire as quickly as my Outsiders Fan Club Membership.

I'm not sure how much my explanation of stereotypes sunk in, since Ryan failed his Chapter 3 and Chapter 4 combined quiz. Ryan may not get the deeper meaning of The Outsiders other than "warfare", he may not understand that seeing past the stereotypes allows you to see the person, not the label, but, I do, so I will continue to be a member of Ryan's gang and lead him safely into any rumble that lies ahead.

Even though Ryan may not fully understand the stereotypes of autism, he is aware of how it feels to be an outsider. Ryan knows he is "different" and I believe there are times that Ryan wishes he was more Soc than Greaser. I hope that with the love and encouragement Ryan is surrounded by, he understand that the stereotypes of someone living with autism, can be torn apart as quickly as a Socs' Mustang by a gang of Greasers and that all of us, regardless of labels, watch the very same sunset.

As a silly 13 year old girl, in love with Ponyboy Curtis, my favorite part of The Outsiders movie was when Ponyboy recites a poem from Robert Frost called, "Nothing Gold Can Stay":

Nature's first green is gold,
Her hardest hue to hold.
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.
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As a teenage girl, I didn't even care what that poem meant, I just stared dreamily at my 106 pictures of Ponyboy on my bedroom wall dreaming that he was reading the words to me. As a mom, I now know that the gold in the poem signifies the innocence of the young, before the outside elements tarnish the shine and luster of such a precious element. As we get older and are influenced more by what others think or believe, it gets harder and harder for people to hold onto that golden hue thanks to stereotypes and discriminations that surround us.

Although it breaks my heart that Ryan "hates this stupid book", I hope that the reason Ryan finds The Outsiders book so difficult to understand is because Ryan is still "gold" and that his luster and shine never dulls due to the stereotypes and ignorance of others. The deficits autism brings to Ryan's understanding of the world, in some ways makes it difficult for him to "read between the lines", but, the blessing of such deficits also keeps Ryan free of stereotyping, it keeps him innocent and most importantly, it keeps Ryan gold...the "hardest hue to hold". We should all be so fortunate.

Autism makes understanding stereotypes, social caste systems, racism, and being an insider or an outsider difficult to comprehend. Don't get me wrong, Ryan and people living with an ASD know when they are shunned, when they are treated unfairly, and when stereotypes surround them, but, what they don't understand is why. 

Ryan can be rude, curmudgeonly, and a little mean if you get in his way, change the rules, change the routine, act too silly, or talk too fast, but, Ryan would never be mean to someone because of the clothes they wear, the car they drive, the neighborhood they live in, the color of their skin, the religion they practice, who they love, or a label attached to their name. Ryan will not discriminate against anyone who eats the last donut, because it doesn't matter if you are a Soc or a Greaser, there is going to be a rumble, and if that donut happenes to be a white iced with seasonal colored icing on top, I'd put my money on gold every time.

Whether you were a member of The Outsiders Fan Club or not, whether you ever read The Outsiders book or watched The Outsiders movie, what S.E. Hinton wanted us all to know was that "even though we must sometimes except what is happening now...in the present...there is always the potential to change what it could one day be". So rub off that tarnish, remove all that build up, and do your best to shine and stay gold. If not for yourself, if not for Ryan and kids like him, well, then, "let's do if for Johnny".

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When Kyle's class read The Outsiders they got to dress up as their favorite Soc or Greaser and Kyle chose Sodapop. I'd bet all my weight in gold that Ryan will be the only Greaser in a Hollister shirt.
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"Mommy, Kiss It and Make It Better"

9/12/2014

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As a mother, after your baby is born and you get over the whole, "OMG I am responsible for taking care of this squirming, squishy, helpless creature", whose only form of communicating his or her needs and wants is via a banshee type cry, it doesn't take long for your maternal instincts to kick in and you quickly learn how to decipher one banshee wail from the next. It's funny how the cries of a child vary from situation to situation and how quickly we moms figure out which cry you need to run to with a bucket, a band aid, or a kiss.

There is the "Feed me now I don't care if it's 3AM cry". The "How many more episodes of Friends are you going to watch before you change my big, puffy, soggy diaper?" cry. The "I'm never going to nap, no matter how long you hold out so just get in here and pick me up because you know you are going to pick me up anyway" cry. And of course, a personal favorite of mine, the "Oops Mommy forgot the baby's head sticks out farther than Mommy's elbow and when Mommy walks through the door she whacks baby's head on the door frame." cry. Even as our babies get bigger and are able to communicate with more than a cry, a wail or a scream, the cry is still what gets our attention. The cry calls moms to action. And as crying experts, regardless of the age of our child, we moms are still able to differentiate the cry of fear, hurt, heartache, stress, and anger.

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A "big brother who just ran over little sister's favorite, can't live without it, Cinderella doll with his Tonka truck" cry, is very discernible from "brother just pinched little sister because he likes to watch her get what she has coming to her" cry. A "someone finished the Pringles and left the empty container in the pantry" cry is much different than an "I got tearless, burnless shampoo (doesn't exist) in my eye" cry. 

Yes, we moms know the wail of a skinned knee, the crocodile tears of a broken heart, the stifled, hiding the face in a couch pillow sob of a Disney movie death (AWEnestly, someone always dies and 9 chances out of 10, it's the mother), and the terrified scream of a nightmare. We know when mommy's kiss will make it all better or when more extreme measures are necessary. Maybe it comes with years of training our ear to hear a cry that signals a real emergency so we don't have to pause the DVR during the season finale of Downton Abbey, or maybe it's just that moms have a direct line from our child's heart to our own. We feel their needs, so we know when and how to respond. Whatever the reason, a child's cry is mom's signal that help is wanted or needed, and so, we act. 

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But what if there are no cries, no wails, no screams, or no tears? What if a child suffers quietly, alone and in silence? How then does a mother discern the kind of pain, the degree of pain and the right treatment of the pain if she is completely unaware the pain even exists? How do you kiss it and make it better when "it" is completely unknown?

When Ryan was little, I use to worry that he had some freakishly high threshold of pain. I'd put him in the tubby in what felt like "just right" tubby water only to discover he was firetruck red from the waist down with not so much as a peep out of him. Then as Ryan got older, I believed his threshold for pain was so low that I wondered if he had some type of neurological problem. A tiny little bump to his finger or toe would elicit blood curdling screams of what he believed was certain impending amputation. Then once I knew, once we heard The A Word, than I realized that Ryan's pain level may vary somewhat due to his overtaxed sensory system, but, for the most part, Ryan's level of pain isn't much different than yours or mine, but, how Ryan expresses his pain, or doesn't express his pain, is what varies from you or me.

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Just this week I found out that for Ryan, some boo boos are too ouchy to cry about.  Some pain is too difficult to share, so the hurt is hidden, buried away, and the pain does not illicit a cry, a scream or a tear. Some hurts remain hidden behind a veil of silence until one day, a simple English assignment pulls the veil away.

Ryan had to do a writing assignment about himself. Some of his major accomplishments, things he enjoys, as well as writing about "some of the worst things that have happened to you". It was in this category where Ryan's cry was finally heard. He wrote, "4th grade" then "massive humiliations that I don't want to mention here". What? Fourth grade? There were no cries of help, no screams of injustices, no tears of pain. How did I, his mother, his protector, his translator of cries, not know Ryan had suffered "massive humiliations"?

After a bit of prompting, Ryan admitted that a boy in his grade had been bullying him for years. I felt like someone kicked me in the stomach. I truly thought I might throw up directly on his writing assignment, which would have lead to one more example for my poor boy to put in the category, "some of the worst things that have ever happened to you". I had my suspicions about this boy, in my gut I knew something was going on, but, Ryan did not cry, he did not scream, he did not wail so how could I interpret silence? I was terrified, that somehow, when Ryan needed me most, our connection, the line from his heart to mine, had been disrupted.

As I tried to go back and recall signs of what I had been missing, I wondered, was it my good old bullying friend Denial whispering in my ear, "He's fine, there would be signs if he was being bullied." the reason that I didn't hear Ryan's cries? What parent wants to believe their child is being harassed, taunted and made to feel badly about himself? Even with Denial's influence, I followed my gut and I still warned Ryan's teachers, his principal and his guidance counselor to be on alert for this bully. They watched out for problems, they listened for cries, they looked for tears, yet they were as blinded by bullying as I was. Ryan saw it, he heard it and what's worse, he felt it, yet, Ryan never cried. He never told Mommy to kiss it and make it better. So I didn't.

When I asked Ryan why he didn't tell me, or tell one of his teachers, he said, "I couldn't find my words". Along with my dinner contents, the blood from my heart spilled over onto Ryan's writing assignment. Ryan's words, along with his pain, were buried deep inside his AWEsome brain and he wasn't sure how to get the words out. Along with processing his pain differently, autism causes Ryan to process his feelings and his language differently. It's hard for him to put words to feelings, so instead of trying, instead of crying, he suffered in silence. A silence that even Mommy's kiss couldn't break through.

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I have cried more tears than I can count this week and have gone through a range of emotions...heartache, anger, guilt, shame....feelings that all stem back to, Mommy failed to protect him and could not kiss it and make it better. As easy as it would be to blame myself, blame the school, and even blame Ryan for not telling, I blame no one other than the bully, with a little bit of blame directed toward the bully's parents.

Bullies are sneaky. Bullies are manipulative. Bullies prey on those they perceive as weak. Bullies are nice to their victims in front of school personnel, in front of students who will "tell" and even in front of the victim"s mother. The bully hides in the shadows where no one is looking, where no one can hear the cries of his victims.

The irony for you bully, is that my son is not weak. Despite your name calling, your teasing, your harassment, my son has thrived. My son has reached goals you could only ever dream of reaching. My son has more accomplishments under his belt than mean names that you shamelessly carry under yours. You did not win bully. You will never win.

In the middle of my angst this week, one of my BFF's said, "One day (insert bully's name here) will be washing Ryan's Mercedes". In that moment, it felt good to picture this bully washing the rims of Ryan's shiny new Benz, while Ryan sat inside looking down at the boy who no longer posed any kind of threat, feeling like justice had finally been served. The moment of gleeful retribution quickly passed though because Ryan does not have a Mercedes today. 

Today, Ryan is not worrying about who will wash his imaginary car or what he will be when he grows up or what prison the bully may wind up in, Ryan just wants to go to school, to learn about the metric system and algebraic equations, and to continue singing his heart out in a safe place free of bullies. In a place where Ryan feels valued, a place where Ryan feels pride, a place where Ryan feels special, a place where Ryan feels protected.

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With the range of emotions that hit you as a mother when they place that squishy, funny looking creature on your chest seconds after they enter the world, the strongest of these emotions is the instinct to protect. Regardless of how smooshy and wrinkly that new baby looks, and how very briefly you have known him, you know that you would do anything to protect him, but, sometimes we can't always be there to kiss it and make it better. Sometimes we can't be there to kiss the scraped knee at recess, to hug a broken heart sitting alone in a college dorm room, or to call out the bully in the classroom, and to a mother, this inability to protect is anguishing. The pain of your silently suffering child makes the pain of childbirth feel as mild as a scraped knee. It is when we can't kiss it and make it better that we mother's need an epidural to ease our pain.

Yes, I will probably always suffer from the guilt of not hearing my son's silent cries, for not listening more with my heart than with me ears. I will wonder if autism stood in Ryan's way, if autism made it hard for Ryan to "find his words" and to find his cry. As Ryan continues to grow and mature, I may not always be able to kiss it and make it better, that is the sad reality for all parents. However, just like a newborn baby knows that even if you don't hear their cries at first, eventually you will be there to pick them up, to soothe them, to hold them, and to kiss it and make it better. 

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I take comfort in knowing that no matter what was happening in the classroom, on the playground and in the hallways, Ryan knew that when he got home, when he made it safely to my arms, then, at that time, he felt safe, he felt happy, he felt loved. Ryan knew that even if I wasn't "there", eventually, I would be, and Mommy would kiss it and make it better, without him ever needing to utter a word. 

Autism may sometimes disrupt the line of communication between Ryan and me, making it harder for me to hear him, but, that disruption doesn't make our line, our connection, or the message Ryan is conveying any weaker. Ryan's difficulty with expressing himself just makes me appreciate the words, the cries and even the banshee wails all the more because I know how hard he worked to"find his words" which makes the line from my heart to his, even stronger.

In this instance, although my heart may ache and lead me to believe that my connection with Ryan was weak, and that I failed him, my brain knows our connection was strong and even though I didn't "hear" him, the love, support, and encouragement Ryan felt at home, helped him prevail. The only thing weak here, is the bully and his meager, failed attempt to keep my son from succeeding. 

Ryan is not weak, Ryan is strong. Strong enough to know that even though this bully's teasing and words may have caused Ryan "massive humiliations", when he was in 4th grade, and even though the bully still makes Ryan feel "uncomfortable" today, Ryan now believes in himself, not in the empty words of a bully. I believe going forward, it will be Ryan who will find his words and it will be the bully that will be at a loss for words, for names, for taunts and the bully will find himself cast out of the shadows. And we all know, that without the shadows, the bully's words, his actions, and sometimes even the bully himself, amount to nothing.

As for my friend's glimpse into Ryan's Mercedes driving future, and the bully's soap and bucket car washing future, well, all I can say is, I hope Ryan picks a white or a black Mercedes because those two colors are very, very, difficult to clean and Ryan is incredibly meticulous.  

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Protecting him from bees, bugs and bullies, but, mostly giving him the confidence to protect himself.
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Just Grant

9/4/2014

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PictureKate Upton, "The Other Woman"
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.

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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. 

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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. 

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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.

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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.

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This is one selfie, that if leaked over the internet would disprove the myth that people with autism don't know love. Of course it wouldn't get nearly as many hits as a topless Kate Upton.
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Pointing the Finger at Autism

7/31/2014

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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. 

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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.

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    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.

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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.

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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.

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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.

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This is as close as Ryan came to getting wet this summer...showers aside.
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I Wish I Were.....Big.

4/9/2014

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Milestone birthdays. Some we can't wait for, counting down the days on a calendar until the big day finally arrives, and some we hide from, lie about, and completely ignore. Remember in college, hating all your friends who had fall birthdays and went right from their Poly Sci class to happy hour while you went back to your apartment and watched Seinfeld instead? Wondering why your parents clearly preferred "alone time" in August than in January. And to add just a little salt from your under age drinking tequila shot to your, "I wish I would have born in October" wound, turning 21 in May, a week after summer breaks starts, is one of the greatest injustices of the college world. I specifically remember the May that I turned 21. After I gave my parents a stern lecture on giving birth to, not one, but, three girls in the month of May and how their insensitivity gravely impacted their daughters' 21st birthday celebrations, I recall wondering, what was left? I mean, isn't 21 the pinnacle of milestone birthdays?

Those happily celebrated milestone birthdays belong to someone else now, since I have decided not to have any more birthdays (I will still accept a cake or Zappos gift card on May 19th, but, just because you love me, nothing else). A very, very, very long time ago, I couldn't wait to turn 13 and officially become a teenager. Then at 16 I could finally drive a car, no more mom taxi needed. At, 18, "woohoo I'm finally an adult" and I can vote (AWEnestly, voting wasn't nearly as exciting as getting into R rated movies). Then the pinnacle of all milestone birthdays...21, I'm officially legal. Not that I would have ever dreamed of driving a car, sneaking into an R rated movie, or drinking a beer before those milestone birthdays allowed me to do so....ohhhh noooo, not me. All those milestones, all those celebrations, all those moments to look forward to, then 21 hit, and I went, "ok, now what?".

Whether it was 13, 16, 18, or 21, once you got "bigger" you realized in many ways, being "little" wasn't so bad after all. Getting bigger means being more responsible and hearing your parents nag you about, "Well, now that you are bigger, we expect you to act your age, be responsible, hold yourself accountable, blah, blah, blah." Ultimately, the bigger your get, the more that is expected from you. What a drag. If you only knew how good you had it when your were little. 
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For example, turning 16, and being able to drive gives a teenager a sense of freedom they never had before, but, the downside to that freedom comes the lectures and the nagging from good ole' mom and dad. Seat belt safety, drinking and driving (even though of course at 16 they would never touch a drop of alcohol), texting while driving (not a problem in my day) lectures occur daily and each lecture is followed with the grave warning that failing to heed any of these naggings could catastrophically end your life or someone else's life. Jeez, 15 sure was a lot less lecturery (new word for teenagers only) and a lot less "I could die at any moment behind the wheel" scary. Then there is the magical milestone of turning 18 which makes you "bigger", and an official adult, but, with adulthood comes the realization that one major screw up means goodbye "juvy", hello Big House. And although turning 21 brings a whole new meaning to the word bigger...bigger parties, bigger clubs, bigger dating pool, 21 also means that the fun and partying college days are quickly coming to a close and the "real world" is slowly looming over the horizon. Mom and dad might still lecture and nag, but, now you own the laundry, the bills and the cooking. Big ain't all it's cracked up to be.

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I don't know when the change comes, when we realize life was easier when we weren't so big. Was it after our first hideous hangover from one too many tequila shots? Was it our first real job when it finally dawned on us that there were no more summer's "off"? Was it after life's first big disappointment...a job that didn't happen....a relationship that didn't happen....a dream that didn't happen? Regardless of when or why, at some point in time, we have all thought, "Wow, if I could just go back in time so I could slap my younger self, and realize how good I had it...before I got big." Although I wouldn't want to go back permanently, (especially not to middle school), I would love a quick trip every now and then, to be able to fully appreciate the comfort, the security and the ease of being little. I mean, if Tom Hanks got to do it, why shouldn't I? 

PictureDavid Moscow in Big, 20th Century Fox
The movie that turned Tom Hanks into an official movie star, also turned him from a child to a man in the movie Big. Just like the real world (dripping sarcasm), when being big got too hard, conveniently, Hanks, got to be little again. In the movie Big, Hanks played Josh Baskin, a boy who becomes fed up with the injustices of childhood and longs to become big. Josh finds a magic Zoltar fortune telling machine and with the pull of a lever, wishes to be big, and overnight, Zoltar grants Josh his wish. The next morning, Josh was big...on the outside. He was over 6 feet tall, he had facial hair, and his voice was deeper, but, on the inside, Josh was still 13 trying to navigate a very grown up world, a world he didn't understand. Josh couldn't tell his parents what happened, so, he was on his own in the big world, just like he wanted...or so he thought. It didn't take Josh long to realize that being big, isn't all it's cracked up to be, so he desperately tries to find the magic Zoltar machine in order to become little again. Oh, if it were that easy Zoltar. 

Here is a scene from the movie Big, where it is very apparent, that Josh is not so big on the inside...

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I swear, some days I think Ryan must have pulled the lever on the Zoltar machine, because in the blink of an eye, he too has become big. As I listen to Ryan, scripting in his bedroom with his best British accent, his voice deepening each and every day, I sometimes freak out, ready to dial 911 and report that some British man has broken into my house and is playing Minecraft in my son's bedroom. As I approach Ryan's bedroom, baseball bat in hand ready to take on this would be British intruder, I don't find a stranger, I only find my little boy who has gotten big with just a pull of the Zoltar lever. How did he grow up so fast? Where did my little boy go? What will his future hold?

Being big, certainly has it's advantages. The horrors of potty training are long behind us (thank you God), as are the battles over haircuts and sandals, but, new struggles, new quirks, have taken their place. Some are bigger, some are not, but, just because Ryan is bigger, and in many ways "better" does not mean that autism was left behind in the toddler years. As we are still navigating the waters of adolescents and quickly approaching the waves of teens, I worry about the tsunami of adulthood. Getting big is hard. Getting big on the outside, yet staying little, naive, and confused on the inside, is even harder. Just ask Josh Baskin. In Big he recognized that his wish to be big, was nothing but, a big mistake. Still a child inside, Josh didn't understand this new world filled with grown ups and grown up problems. Although the troubles that plagued Josh when he was little went away, Josh discovered that being big, had troubles of it's own.

Similarly, a child with an ASD may have different struggles when they become an adult, but, getting bigger doesn't mean autism magically disappears. Some difficulties get littler, some difficulties get bigger, and some remain the same. With new expectations, new adult rules, and new adult consequences, it's easy to see why some of these adults would like to go back to being little. Unlike the movies though, children living with an ASD are not able to search out a Zoltar machine, pull a lever and wish to be little again. Once big, always big, yet, we hear so little about what happens when children with an ASD become big. 

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The faces of Autism Awareness belong to those who are little. During the month of April, when Autism Awareness is celebrated, most of the faces you will see belong to young children and the occasional teenagers. Rarely, will you see a photo of a grown man or woman living with autism. A picture of a grown man is not as appealing to the hearts of strangers as a photo of little boy with big blue eyes. When you see the little boy and his beautiful, innocent blue eyes, you want to "help" him, you want to "save" him, you want to "accept' him, you want people to be "aware" of him, but, the grown man, you quickly "disregard" him, even though he once was the boy with the big, blue eyes.  After all, this adult, is big, he is a grown up. He should be able to have a handle on his autism by now with all the years of therapy and support he had as a child, right? Wrong. Autism does not magically go away at the age of 18 or 21. The problems, the struggles may become different, but, for some, getting big is the most difficult challenge of all. 

The most recent study conducted by the Centers for Disease Control, lists that 1 in 68 children or 1 in 42 boys and 1 in 189 girls now have an Autism Spectrum Disorder. These children, these boys, these girls, will get big and when they do, there is very little support for them. According to a study completed by the Pennsylvania Autism Services Bureau, "If your child is 3 now, we estimate that there will be 54,486 adults with autism in PA by the time he is 21" and "As the person gets older, the availability of services decreases". There are so few services available for adults with an ASD. The waiting lists for adult services may run hundreds of people deep and many years of waiting. Once that magical milestone age of 21 hits, the only support many of these "children" have, are from their parents and when these parents are helping their big kid make it in the big world, many spend a great deal of time worrying about what will happen to their big kid once they are gone. There is no magic Zoltar machine to change these adults from big to little, when supports may not have been in abundance, but, at least support in the educational system was available. 

PictureTom Hanks, in Big.
Our state and federal government has to be the Zoltar for these kids who are now big. Pulling a lever and making a wish isn't going to cut it. Programs, services and funding needs to begin now. If waiting lists for adult services are in the hundreds when the rates of an ASD diagnosis for these adults was 1 in 330, then how long will the wait be in twenty years? If getting services for adults living with an ASD were as easy as pulling a lever on a Zoltar machine on a Jersey shore boardwalk, there would be a line across the entire state of New Jersey waiting to pull that lever. It's not that easy folks. 

For most of us, when we turned 21, our biggest concern was which bar had the cheapest pitchers of beer and no cover charge. Sure, maybe at 21, we had no idea what we wanted to be when we grew up, but, regardless of our path, we knew, that like it or not, one day we would be out on our own. Some of us, to the dismay of our parents (love you Mom and Dad) took a little longer than others. For parents loving a grown child with an ASD, it's not always that simple. Some big kids with an ASD are able to go to college, find a job and live on their own with little support, but, many, are not and that is why it is so important to change our perspective, change our view, and change what and who we see, when we hear the word autism.

Just keep in mind every gorgeous little boy you see promoting autism awareness this month will one day have facial hair, a deep voice, and possibly tower over you. Do your part in raising autism awareness this month and every month, by remembering that when you see a face like this...
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....that one day that face will look more like this....
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These faces, big or little, need your awareness, your advocacy, your understanding, but, mostly your acceptance. We have come a long way in advocating for children with an ASD, but, we must not forget the faces that we don't see. For every parent loving a child, big or little, with an ASD, our hope is that one day there will not be a need for a magic Zoltar machine to grant wishes, because with the right support, the right services, these little kids, who will one day become big, will be able to make their own wishes come true. 

These big kids with an ASD may not worry about which bar to hit at exactly 12:00AM on their 21st birthday the way you did, but, it is still a day that each child and their family should be able to celebrate and not worry, "Now what?". Chances are, the day after their 21st birthday, these big kids...these adults living with an ASD...who are smarter than most of us neurotypicals, won't wake up wondering what crawled in their mouth and died, who the he** put a vice on their head while they were sleeping and where they can find the closest Zoltar machine to make them 6 years old again. For most of us, bigger doesn't mean smarter.
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Champions (noun) and Their Champions (verb)

4/2/2014

1 Comment

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

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

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

PictureI'm no Misty May-Treanor, but, I got Bruce beat.
It would be delightful if someday Wheaties would have an autism champion (verb) on the front of their box, but, chances are, that won't happen. So, in order to make up for General Mills' lapse in judgement, I want to make sure the champions championing autism awareness are visible today. These fighters, these tigers, are not roaring because they want to be difficult, these champions (verb) are roaring because they need to be heard since they are "fighting on behalf of someone else"...their child. If they don't roar, then who will? 

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

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

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

To the insurance companies (whom AWEnestly, I have NO sympathy for), who don't understand that a trip to the dentist is like a trip to Hades for our kids, we are not trying to harass you with our repeated phone calls or get your fired when we ask to speak to your supervisor. We need the right code for the right surgical center so our child can get a cavity filled without fire and brimstone raining down on them in the dental chair. Our kids need good dental hygiene, and we champions will walk through fire to ensure you pay for some of it (then curse all insurance companies to Hades when you fail to pay a cent).
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We are the voice, the fighter, the educator, and the tiger. We champion for our kids whose communication struggles makes it easier for them to remain silent. We champion for our kids who hate the feel of leather boxing gloves. We champion for our kids who cringe at the sound of a deafening roar. We will continue to argue, to fight, to walk through fire in order to champion our champions, and even though you may never see our face on the front of the Wheaties box, I promise you will always hear us ROAR.

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I Have Spawned Into a Minecraft Creeper

2/20/2014

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Minecraft. If you haven't heard of it, then you obviously do not have school aged kids, you do not ever enter into retail establishments and you quite obviously have not fallen prey to social media. In other words, you must be living under a virtual pile of Legos. I admit, I'm no Minecraft expert, but, since Minecraft in the ONLY thing that comes out of Emma and Ryan's mouths these days, I have been dragged into the Minecraft world, with no sword or pick axe to gauge my ears out, so I've picked up on the basics.

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From what I have been able to grasp, right before my eyes glaze over from the obsessive Minecraft chatter, you are alone in a virtual world that sort of resembles an island. With little to survive than your bare hands and the various minerals and materials you can find in said world to build shelter, tools, and whatever else you need to protect yourself from the things that go bump in the night. Think Tom Hanks in Castaway, sans Wilson, and throw in a zombie or creeper...or two. There is a creative mode with lots of creative building options to enhance your anything goes virtual world and a survival mode where you also get to build, in order to protect yourself from the zombies, creepers and spiders who are just waiting to take you out. Tom Hanks had no idea how good he had it with only madness barking at his makeshift cave door. And unlike Tom Hanks, in your Minecraft virtual world, you can continue to be alone in your deserted island like world, or you can invite friends to join you.

In addition to the Minecraft game itself, there are also YouTube Videos where people narrate and record their actions in their Minecraft virtual world. The most famous of these is Stampylonghead, with over 1.6 million followers and over 818 videos. This dude, with his horribly overexaggerated and highly excitable British accent, has a lot of time on his hands. I swear, I hear Stampylonghead while awake and in my sleep. This is because Ryan can mimick Stampy's voice to a tee and does so most of the day and in his dreams at night. I swear, Ryan's British accent is so good, he could easily land a role on Downton Abbey. I understand why parents like this Minecraft game. There is a lot of creativity, imagination and wholesome, mostly non-violent fun that draws kids in like bees to honey. As cool as the game is though, I'm ready for a bug zapper.
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I had been telling Ryan for months that I thought he should try Minecraft since I read that tons of kids, including kids with an ASD, love the game, but Ryan kept saying it was stupid, because Ryan has a teenage brother who told him it was stupid. Needless to say, this teenage brother, who shoots Nazis in Call of Duty and runs from the police in his Lamborghini while playing GTA (Grand Theft Auto for all you newbs) feels that a virtual Lego type world, of old style graphics, is lame and since Ryan has worshipped Kyle from the moment Ryan was born, Ryan believed Minecraft was stupid too. Until Ryan's little sister built her first shelter and killed her first Creeper. Emma didn't reach "worship" status, but, she did impress her brother Ryan, which is more difficult than taking out a zombie with a diamond sword (we sound like a terribly violent family, don't we?).

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Ryan's worship like nature of his big brother Kyle is twofold. One, Kyle has an extremely big heart and he "gets" Ryan, and two, quite simply, is birth order. Kyle was here first, so, Ryan doesn't know a life without Kyle, but, you can bet all your Minecraft diamonds that Ryan remembers life before his little sister arrived on the scene. Suffice it to say, Ryan would never string the words "worship" and "Emma" together in the same sentence.

Prior to Emma's arrival, Ryan had Mommy's attention most of the time. After all, Kyle was older and let's be AWEnest, Kyle was easier. Ryan struggled with sensory overload which lead to meltdowns. Ryan had a hard time communicating, which lead to frustration and subsequently, more meltdowns. In those early years, with all those meltdowns (Ryan and mine), we were more like a run for your life Chernobyl Disaster than a happy go lucky family. So, for a kid who craved routine, who survived on same, and who counted on Mommy to get him safely through his day, a new baby was a swell idea! Poor guy. Ryan had no idea what he was in for, and quite frankly, neither did I.
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When Ryan came to visit Emma and I in the hospital after Emma was born, he literally threw a stuffed animal on her head and he did not acknowledge her presence. He was more interested in the buttons that raised and lowered the bed, the nurse call button (we almost got thrown out) and the cookie I had on my tray from lunch. This "pretend she doesn't exist" routine lasted a few weeks, until one day Ryan decided enough was enough and he locked his traitorous mother and screaming, smelly baby sister outside twice in one day.
 
It was a sticky, humid, beautiful summer day. The kind of day you appreciate in mid-August because you know all too soon, the heat and warmth of summer will soon be replaced with the crisp, cool days of fall. As I sat on the porch swing, sniffing my new baby's head, taking in the fading days of summer, I smiled happily thinking all was right with the world. My smile was quickly replaced with a puzzled expression at the slight "click" I heard at the back door. I saw a flash of red run past the window and I knew in an instant, that "click" was not the sound of summer wishing me well and locking me out, it was my darling son locking me and his baby sister out of the house...with not another soul inside the house.

I slowly got off the porch, trying not to jostle my sleeping princess and went and knocked on the door. "Hey baby, will you unlock the door and let sissy and I back in?", I said sweetly while peering through the window. There Ryan sat on the couch blatantly ignoring me while he happily played on his Leapster. "Ryan let Mommy in", a little more sternly. Ryan got off the couch and I immediately felt relief since I assumed he was coming to open the door. Nope. Ryan climbed on the back of the love seat, looked me in the eye (no trouble making eye contact in this situation) and shook his head no. Well, suffice it to say, that the postpartum hormones kicked in at that point, "Open the #*%$*%# door right #*%$%# now", as veins bulged out of my neck. Still, Ryan sat on the couch, shaking his head back and forth. No way, was his evil mother, who ruined his world, and that no good, smelly, loud, baby getting back in the house. Not until I called Dan, who had to come and let us in, not once, but twice (hormones, remember?). Yeah, it's pretty safe to say that Ryan did not "worship" his sister Emma the way he did big brother Kyle. She was a disruption...a change...a deal breaker. 

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Over the years, Emma has felt this preferential treatment for Kyle over her when it comes to Ryan's love and affection. Most days she accepts it, and other days, it breaks her sweet, sensitive heart. I once found a birthday card Emma had made for Ryan crumpled up and stuffed under her bed. Drawn on computer paper and carefully folded in half, was a 4 year old's exact replica of our backyard with a stick figure of a Emma and Ryan happily swinging together, which at the time, rarely ever happened. The crayon strokes spoke volumes of this little sister's true desire, to have her brother interact with her, to have her brother play with her, to have her brother look at her, the way he looked at Kyle.  When I asked Emma why she didn't give it to Ryan, her dejected little shoulders shrugged and she said, "Because he will think it's stupid.". I told Emma to give it to Ryan anyway. Ryan looked at the card, tossed it on his dresser and said, "It's not my birthday anymore" and went back to his game. As much as I wanted to smack Ryan on the head with the card, I tried to explain how much love and time Emma had put into making his card and that his actions hurt Emma's feelings. This past Valentine's Day when Emma made a card for everyone in our family, except Ryan, I didn't need to ask why and I didn't insist on her running up to her room and making him one. Ryan would have thought the card was stupid (again), unless of course Emma had taped candy to the card. Ryan loves his sister, he just doesn't communicate that love in a way that Emma understands...yet.

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Although I have explained autism to Emma and I have read books about autism specifically written for siblings of an autistic child, it's hard for a 7 year old's head and heart to grasp. AWEnestly, some days it's hard for a 44 year old mother to grasp. It's difficult for Emma to understand why Ryan doesn't hug and kiss her like Kyle does. It's hard to understand why cards and pictures made with love are rejected or ignored by him. It's hard to understand why she can connect with with every person she meets, but, not the one person she really wants to...her brother. Then along comes a guy named Steve with his blocks made of cobblestone, dirt, and clay as well as a pick axe and sword to keep the creepers and zombies out of their carefully constructed, mutually adored, virtual world and block by block, a connection has been made. 

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Who knew the phenomenon called Minecraft could not only build homes in virtual lands, but, Minecraft has helped build a relationship between a brother and sister that once seemed as unlikely as a creeper and zombie sitting down for afternoon tea. A bridge has been built that not only connects their virtual worlds, but, has also connected their hearts. Emma had to go to a deserted world and dig deep to find the proper materials to build a pick axe that was strong enough, and unique enough, to finally break through the wall of autism and find her brother. And Ryan, who for so many years, kept building his house with thicker, stronger bricks, finally let his little sister in and has promised her that he will continue to do so, as long as she doesn't chose a user name that is "stupid and ridiculous". 

Now I'm the creeper standing outside their real world, outside Ryan's bedroom door where they play Minecraft for hours, hoping that neither one of them senses me and comes at me with their diamond sword. As I slowly crack the door while creeping, I see Emma on the top bunk, the glow of the iPad illuminating her smiling, happy face. On the bottom bunk is Ryan, wrapped from head to toe in his Angry Birds blanket, the only sign that someone is under the blanket is the perfect British accent coming from Ryan's mimicking lips. As an unwanted, spawned creeper, I quietly and stealthily push the bedroom door open wider, risking my safety by breaking the darkness with the hallway light in my attempt to get even closer to this somewhat magical moment. As I hold my breath, trying to stay hidden, I finally hear, with no trace of Stampylonghead's British accent, Ryan yell, "Hey Emma, can you come into my world?". As I stifle my tears at the deeper meaning to those long awaited words, I swear Emma feels the dual meaning too. I can almost feel the joy emanating from Emma's heart as she happily yells back, while tap, tap, tapping her iPad, "I'm coming Ryan! I finally found you in your world!".

I recognize that when the Minecraft obsession ends, so may the intensity of the connection, but, for now, Ryan is not locking his little sister out on the back porch...he has finally...finally, let her in. I hope that whatever zombies and creepers lie ahead in the real world, Ryan will tackle them with a diamond sword in one hand, while holding onto his little sister with the other, because alone he can build a shelter, but, together they can build a fortress. A fortress that hopefully, will keep out their mean, old, creeper mother who makes them occasionally leave their virtual world for the real one.
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Building together to keep out creepers like their mother.
1 Comment

He Loves Me, He Loves Me Not, He LOVES Me!

2/13/2014

5 Comments

 
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They say that French is the "language of love", due in part to the stereotype of the French as hopeless romantics and in part because people speaking French just sound sexy. If the French are such masters of love, then don't you think it's ironic that it was the French who came up with a game of love that determines if the object of your affection returns your affection based on flower petals and chance? Come on French people, don't you have something a little more romantic or statistically sound than petal plucking? I remember regularly raiding my poor Grandmother's flower beds for daisies as I plucked petal by petal, mumbling "he loves me, he loves me not" while picturing myself as "Jill" and having Shaun Cassidy "walk me home" while singing Da Doo Ron Ron to me. If only love was as easy as plucking daisy petals.

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I remember back in my early Google obsessing days, when I would enter "signs of autism" in the search bar ten times a day, I would typically stumble upon phrases such as "fails to show emotion", "does not reciprocate emotion", "egocentrism", and "fails to show empathy". The name autism itself comes from the Greek word "autos" which means self, which just increased my Googling anxiety. My brain would start on it's obsessive train of thought and it was like a full steam ahead locomotive. Is Ryan only aware of himself? Is Ryan unaware of my love for him? Can't Ryan feel how much I love him? Is Ryan unable to feel happy, or sad, or scared? Does this autism thing mean Ryan doesn't, or can't love me? Why I would go back to this agonizing searching ten times a day is beyond me. I guess I hoped to eventually find a website that negated all this "lack of feeling" fear I had. So, I just kept Google searching, looking for the words, "He loves me".  Little did I know, the proof of Ryan's love was in the hand that I held, the brief kisses that I got and the snuggles that he allowed me to give him. My "proof" was standing right in front of me.

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One of the biggest misconceptions about people living with autism is that they don't feel or express emotions...an almost robotic type personality. People with ASD feel the same emotions you and I do, they just may express or communicate those emotions differently. That difference doesn't mean people with an ASD feel any less heartache, joy, disappointment and love than any neurotypical person. In fact, I believe Ryan feels more than the average person because he is so extremely sensitive, but, how those feelings, those emotions are expressed may look much different than what someone without an ASD has come to expect. 

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Many people with an ASD are also able to understand the emotions of others if those emotions are exhibited in a direct way such as laughter, crying, or yelling. Ryan has a hard time with more subtle emotions that are evidenced through body posture, tone of voice, and facial expressions. Ryan can easily recognize my angry "freaking out" emotion, by my shouty voice, the steam rolling out of my ears, and the spittle flying from my mouth. Ryan also understands that my tears equal sadness which, depending on what my tears are for, may cause him to feel sad too. And sometimes, when I am laughing, Ryan laughs too, then wonders why he is "fake laughing when it feels uncomfortable". Although identifying such extreme emotions comes easily for Ryan, he may not be able to recognize the sarcasm dripping from my voice when he asks for his fourth Oreo and as I once again relent to his poor eating habits respond with, "Why not?". Ryan happily grabs the Oreo and loves me for what he perceives is my lack of concern in him eating yet more trans fat. Ryan also may not recognize if my shoulders slump when I'm feeling dejected by Shaun Cassidy after my petal plucking assured me that Shaun Cassidy, "loves me not". Ryan's struggle with recognizing these emotions is more about a lack of ability than a lack of feeling. 

Ryan's responses to other people's emotions almost has a direct correlation to how connected he is with a person. Ryan certainly understands sadness when he hears a story that is sad, but, if that story doesn't directly effect him, he may not respond in what most of us would believe an "appropriate" way. Perfect example. Last week there was a story that went viral on social media about a father who found out he had terminal cancer. Once this father received his grim diagnosis, he decided to write 856 notes to leave in his young daughter's lunchbox, so she would have a note from him every day until she graduated from high school. As I read the story, I began to cry and was so overcome that I left out a little sob. Ryan immediately came to me, got all up in my face (literally our noses were almost touching) and said, "What's going on here?" obviously concerned that I was upset. I shared the story with Ryan and instead of saying, "Wow, that is sad!" or perhaps getting a little choked up himself, he immediately said, "touching moment, touching moment" in his very best Goldmember voice from Austin Powers. Needless to say my tears were quickly replaced with hysterical laughter. Ryan knew the story was indeed a "touching moment, touching moment", and I'm sure in his mind he thought how sad it would be if his father was sick and dying, but, the story wasn't about Ryan or his dad or anyone that Ryan personally knew, so the story had very little emotional impact on him.

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In the book, "Look Me in the Eye" by John Elder Robison, there is a section in the book when Mr. Robison discusses the perceived lack of empathy and emotions of people with an ASD. He tells of a time when he overheard his mother and her friend discussing a child who had recently been struck and killed by a train. Mr. Robison explained that upon hearing this news, he felt relieved that it wasn't him or his brother who had been killed by the train, so, he smiled. Since Mr. Robison was unable to communicate his thoughts and feelings, his mother and her friend just saw him smile and thought he was a psychopath for grinning about a child's accidental death. In his mind, Mr. Robison didn't know this child, so he did not feel terribly sad. Mr. Robison explained that when he was younger, he often felt people who cried about stories that involved strangers, were being fake, because why would you cry about someone you don't know? Just like Ryan's "touching moment", Ryan didn't know this dying man who was writing notes to his little girl, so although Ryan "got it", although Ryan "felt it", how he communicated it was not what most would expect as a typical or "appropriate" response. For Ryan, and many kids like him, it's all about the connection. When we lost a beautiful dear friend of ours, at the incomprehensible, inexplicable age of 8, through his hiccuppy sobs Ryan said, "But, she barely lived". Four powerful words that my boy communicated, that my boy understood, that my boy felt to the deepest part of his soul for people he knew, for people he loved, for people with whom he had a connection.

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Yes, Ryan "feels". He feels anger, sadness, betrayal, disappointment, anxiousness, joy, love, and jealousy. Ryan also recognizes these emotions and he cares about those feelings in the people he loves, the people he trusts, and the people who love him. Ryan's feelings are not impaired, diluted, or inappropriate, but, sometimes, how Ryan communicates his feelings do not fit into what most of society believes is "acceptable" or "appropriate". I wonder who ever made up the rules of just how a person is suppose to communicate their feelings...not your feelings, not your grandma's feelings, their own individual, unique feelings. 

It was once suggested to me that perhaps Ryan would do better communicating his feelings to a therapist who specializes in working with kids with an ASD. I'm not saying that it isn't a good idea, for sometime down the road, but, for right now, here is EXACTLY how I'd imagine Ryan doing in a stereotypical therapist setting:

Therapist: "So Ryan, would you like to lay down on the couch and relax while we talk?"
Ryan: (in a disparaging, how could you be so stupid and still be a doctor voice) "Why 
          would I do that? It's 4:00 in the afternoon and I don't lay down until 10:00
          at night in my bed, at my house, with my Angry Birds blanket and my pillow!"
Therapist: "Ok, fine, then why don't you tell me how you feel Ryan?"
Ryan: "Well I feel scratchy from these jeans my mom made me wear today and I feel 
          blind from the sun coming in your window and I feel dry from the heat in this 
          office.
Therapist: "Well, how do you feel on the inside Ryan?"
Ryan: "Well, right now I have a cold so I feel kind of juicy (yes, this is a word for 
           snotty) and my guts feel kind of gassy."

This conversation would be followed by the sound of my money flying out the therapists window. 

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Ryan has feelings and he understands feelings, he just sometimes struggles with the language of feelings. I have always been so blessed because Ryan is very affectionate with me...he hugs, he kisses and yes, he tells me "I love you so much Mommy". Some kids with an ASD have a much harder time expressing their feelings and allowing hugs, kisses and cuddles. This does not mean they don't feel love and they don't know love....they just struggle communicating that love in a way a neurotypical person, would prefer, but, for a child with an ASD, the way they love, the way they express emotion, feels perfectly "normal" to them. There are occasions where I am almost knocked to the ground with one of Ryan's hugs and there are times when my arms are quickly brushed away, perhaps at a time when his overloaded system is feeling too juicy, too scratchy or too gassy. For Ryan, some days, "He loves me", some days, "He loves me not" (yesterday when I forgot him at school, it was clearly a "not" day which is another blog post entirely). 

Please don't ever think that people with an ASD don't feel like you do, because they do. They may not say it, they may not show it, but they FEEL it, so don't ever, ever sell them short. John Elder Robison said, "Autism is a COMMUNICATION disorder, not a "lack of feeling" disorder". Ryan's language of love may vary from mine and yours and chances are, he will not be the next French Casanova, but, I promise you, that even Ryan could have told the French that petal plucking is an "utterly ridiculous" way to determine if someone loves you. Although, Ryan could look at a flower and in an instant determine the number of petals and whether I should start with "He loves me" or "He loves me not" to get my desired answer about his love for me, Ryan would probably skip all that nonsense and in his best Austin Powers voice tell me, "Yeah baby". Yep, he loves me.

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How could anyone doubt the love in that smile?
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