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Exit Stage Right

7/17/2014

4 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Won't he look so much better than Susan Lucci when he gets his Emmy?
4 Comments

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.

1 Comment

Small Talk is BIG

3/27/2014

0 Comments

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

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

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

Good thing we have no balconies at our home and it's probably in my best interest to never have my science loving, money loving Ryan ever meet up with Walter White because Ryan does not believe my gift of gab is a gift at all. In fact, to Ryan, most of the time I am just noise...noise that makes his "brain hurt". Ryan loves me to the sun and back, but, as far as my small talk gift of gab, well, quite frankly, Ryan would happily have me re-gift my gab and Dan would probably help Ryan wrap it. Re-gifting my gab is a much better scenario than having those two inquire with Walt how big of a barrel they need for me.
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Ryan loves small talk about as much as Walter White loves the DEA. Autism, or Autism Spectrum Disorder (ASD) is a social communication disorder. Many people with an ASD, have difficulties with socialization and communication and Ryan is no exception. Small talk involves both communication skills and social skills and Ryan struggles with both. Ryan is also a perfectionist. If Ryan can't get something right, or if Ryan thinks he won't get something right, Ryan is not going to risk being wrong. So, whatever this "something" is, just ain't gonna happen. This is why, more often than not, Ryan remains silent in social settings. 

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

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

When Ryan continually failed to engage in my small talk chatter, or in small talk with friends, Denial assured me that Ryan just didn't care about friends, so small talk wasn't even necessary. This "didn't care" conclusion that Denial enabled me to draw, lead to many quiet car rides home with only Spongebob playing in the DVD as company. For Denial to have me believe, or anyone believe, that Ryan doesn't care about the social bonding of small talk or making friends is unfair. Certainly, small talk may not be as desirable for Ryan as it is for his mother, Chatty Kathy, but, just because Ryan's small talk is minimal, doesn't mean he cares little about acceptance, it just means that for Ryan, it is easier, and safer, to stay silent. After all, with silence, there is no chance of social mishaps, there is no chance of misinterpreting what someone means, there is no chance of saying the wrong thing at the wrong time, so, there is no chance of getting hurt. Whether he likes it or not, Ryan needs to learn what to say, and how to effectively communicate to survive in a world full of Chatty Kathy's. Coming from the heart of a Chatty Kathy mom, I hope that one day Ryan will not only know how to small talk, I hope that maybe one day he will actually want to chat with me.
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Ryan has worked with Mrs. P, an amazing speech and language therapist, for five years, not because Ryan is non-verbal, not because he has poor articulation, but, mostly to help Ryan with his social speech, to help him engage in small talk. We all know that regardless of a designer Autism label, small talk is big when it comes to relationships with peers, teachers and colleagues. Ryan can do it, he can be taught to small talk, but, chances are, small talk for Ryan will always be BIG. Mrs. P has given Ryan the foundation he needs to small talk with his family, his friends, and his teachers, but, Mrs. P, no matter how wonderful she is, can't make Ryan want to do it. Autism may always have a hand ready to cover Ryan's mouth and keep him silent, but, maybe one day, Ryan will willingly and confidently push that hand aside. I have seen it happen...on rare occasions.

Needless to say, for a Chatty Kathy, someone who rambles on and on and on and on and on, having my son not engage in small talk with me, regardless of the reason, is still difficult. The AWEsome thing about my attempts at small talk with Ryan now is that Ryan has the communication skills to tell me, I'm "setting his brain on fire", or that I'm "speaking gibberish" or that he has "no possible idea" what the heck I am saying. Even Chatty Kathy knows when someone is nicely telling her to shut the he** up. I recognize that when Ryan gives me an inch, just a tiny hint of his willingness to engage in some small talk, I go for the mile, speaking gibberish at a high rate of speed that gets muddled up somewhere between Ryan's ears and his brain. In my hyper-crazed excitement to find Ryan, I wind up losing him again. Someone needs to tie a knot in this Chatty Kathy's pull string.
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You can only imagine that on the rare occasions that autism releases it's hand from my boy's mouth, and he does decide to strike up some small talk with me, I feel like I am getting a glimpse inside his soul. I never, ever take these moments for granted and I try so hard to tape Chatty Kathy's mouth shut. A few weeks ago, while driving to pick Kyle up at baseball, Ryan said, "Are you aware that the mineral fluorite has the ability to glow in the dark?". I almost hit a pedestrian. First of all, Ryan STARTED the conversation, second of all, he asked it in the form of a question (never happens unless it's "Where's my lunch?") and finally, I had no idea what he said because for once his words sounded like "gibberish" to me. Fluorite? What in the name of Sam Hill was fluorite? I tried to wrack my brain with a smart mineralogist type of response. Turns out, my, dumb mother response of, "I had no idea!! What else can you tell me about fluorite." was all I needed for my brilliant son to chat for a good five minutes about minerals. 

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

As the van slowly pulled up to the curb at the high school, the magical moment ended, but, my heart continued to soar. Ryan crawled into the back seat, making room for Kyle, and turned on Spongebob. Our small talk had ended, but, it gave me a glimpse into my son's future. I pictured him surrounded with other sciencey like, smarty pants mineralogists in white lab coats discussing minerals (I realize mineralogists may wear polo shirts instead of lab coats, but, please let me have my moment) and Ryan not only engaging in the small talk, but, enjoying it. Surrounding himself with like minded people discussing something he is interested in, may be all Ryan needs to have small talk not be so BIG. I just hope that this group of white lab coat wearing mineralogists need a dumb, old Chatty Kathy to work in the lab cleaning up mineral dust and answering the phones, so I can continue to witness my AWEsome boy, finally being so comfortable with who he is, that small talk comes as easy as pulling a string.
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Said Ryan never...yet.
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    Definition of Awe:
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    reverence, respect, dread and wonder inspired by authority, genius, great
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    spelling AWEtism.

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