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Tic Tac NO!!!!

9/26/2013

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When I was a kid, sitting in church bored me to tears. Forgive me God for being AWEnest, but back in the "old days", there were no rock bands jamming out at the alter. No drums, electric guitars or guys with long hair wailing out the latest Christian rock songs. There were just old ladies and a handful of old fogies singing decades old hymns. Regardless of how great the pastor was or the message he was delivering, at the age of 10, if the pastor wasn't talking about Shaun Cassidy or Andy Gibb, then I wasn't listening. I realize I'm taking a chance here with my AWEnesty and that my laptop may fry and electrocute me, but as a 10 year old kid, the only thing that kept me from snoozing and falling out of the church pew, were my equally bored BFF neighbors, a pencil, the back of the church bulletin and countless games of Tic Tac Toe.

According to Wikipedia, (What did we ever do without Wikipedia? Oh, that's right, 24 Volumes of Britannica.) Tic Tac Toe has been around since the Ancient Egyptians. I guess King Tut got bored in the temples too. In the 1800's, the English played Tic Tac Toe, but they called it Noughts and Crosses. Crosses? I bet a bored 10 year old English girl created it in church. Evidence that even the proper, stuffy English got a little antsy during the sermon. Little did I know, when I happily drew a line through all three x's (everyone always wants to be x's, o's look to much like zeroes and well, zero equal loser) and happily whispered, "Tic Tac Toe", while the blue haired lady sitting behind me in her Sunday best "shushed" me, that the word "Tic" would become so much more to me than a game to pass the time while I listened (not really) to all the ways I sinned every Sunday morning. Of course, playing Tic Tac Toe in church, instead of listening to the pastor, being at the top of my sinful list.

Wiki (thank you...again) says, "A tic is a sudden, repetitive, nonrhythmic motor movement or vocalization involving discrete muscle groups.[1][2]. Tics are described as semi-voluntary or unvoluntary,[7] because they are not strictly involuntary—they may be experienced as a voluntary response to the unwanted, premonitory urge. A unique aspect of tics, is that they are suppressible yet irresistible;[8] they are experienced as an irresistible urge that must eventually be expressed." Wow! In our house we define it as some weird, quirky, movement or behavior that may get you beat up on the playground. Believe me, we have had our share of tics in this household, and I don't mean the fun, Tic Tac Toe kind. Many kids on the autism spectrum demonstrate self-stimulating behavior or "stims". These behaviors are described as "controlled" and the stimming helps calm a child's overloaded sensory system and eases their anxiety. Some stim just because it feels good. It's been hard to differentiate between a true "tic" and a "stim" with Ryan so over the years, we have just referred to various behaviors as tics. "Tic" is a lot easier to use in a sentence then "self-stimulatory behavior". "Oh, have you seen the latest tic?" or "I wonder how long this tic will last?" or "I guess this tic replaced that last tic." And for the longest time, I would discourage these tics, stims, etc. not with a tac and a toe, but with a big emphatic NO.
 
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Before I knew, before I understood, when Clueless and Denial would tell me, "You need to make him stop THAT!" in regards to the various tics and stims Ryan has had over the years, I did my best to nip those tics in the bud. After all, these tics made him look weird (yes, I said the taboo w word) and certainly other kids would think so too. One of the most worrisome for a neurotic nut like me was the chewing shirt phase. As you can see in this daycare photo, every collar on every shirt would be soaking wet by about 9:30AM. Of course when he would chew on a shirt for 12 hours a day, not only did Ryan ruin the shirt by stretching out and destroying the fibers with teeth meant to chew meat, not cotton, he also ingested laundry detergent chemicals, dryer sheet particles and all the nasty germs, viruses, etc. that landed on his shirt throughout the day. I would freak out and yell, "Stop chewing your shirt, it's going to make you sick!" and my literal boy would assure me that he wasn't swallowing his shirt, so it certainly would not make him sick. With every bite or chew I would yell, "No!". Sigh. We got a chewy tube that was suppose to help Ryan get his sensory needs without destroying his shirt and doing shots of Tide, but apparently Ryan's palate preferred cotton to rubber. The chewy tube sat on the floor and collected dog hair while I continued to buy new, preferably organic, cotton shirts. The shirt chewing, fabric gnawing, phase lasted until the next tic moved in.

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Check out Chewy Tubes at www.funandfunction.com
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Although not as hazardous to his health, Ryan's nose licking tic was certainly more disgusting and much more apt to get him ostracized and picked on by his fellow classmates. We have all seen kids do it. They lick it, pick it, wipe it and yes, they even eat it (insert gag, heaving noise), however, at some point in time, they reach an age where they stop. Maybe it's because they have been called a nose licker or booger picker and that has been enough to make them grab a tissue instead of their tongue or finger. Not my boy. When he was younger, Denial and Clueless would say, "Ewww, that is disgusting, you need to make him stop. You need to threaten to take his video games away from him before he loses all his friends." Yep, there's the problem. I'm sure to an extent Ryan cares about what "friends" think of him, but not the way a neurotypical kid does. When one doesn't really have friends, threatening the loss of such an enigma was pointless. So my shouts of "No!" and threats of, "Kids are going to call you names, think your gross and not want to play with you", fell on deaf ears. These threats still do. As Ryan walked out the door to middle school this morning, he smiled happily with his clown red circle surrounding his entire mouth (that will be there until the first spring thaw), and yelled, "I love you Mom". As he approached the bus steps, I yelled back, "Don't lick your face today!" and immediately saw his tongue swipe across his mouth and nose. Tic Tac NO!!! Such futile efforts. The only thing I can do for this tic is to sneak in at night while he is sleeping and rub Vaseline on his face, since he DESPISES the sticky, gooiness feel of Vaseline, in my attempt to try and stay ahead of his poor, licked, abused face before it starts to bleed.

With the start of a new school year came a new tic and I believe it is a tic in the truest sense of the word....in the Wiki sense of the word. About the second week of school, the entire family was blessed with the first official cold of the season. It wasn't a terrible cold, just an annoying one. I believe the cold planted the seed for Ryan's newest tic. I noticed Ryan squinching up his left nostril and making a very quick sniff...repeatedly. I mean like it was rhythmic, like breathing. At first I thought it was the cold, but it was so odd that is was just the left nostril. Finally, I asked if his nose was itchy, runny, tickly, etc..."No" in a stop nagging me voice. So I decided to pay attention. We were in the car and he was non-stop sniffing. Ryan only stopped when he needed to yell at Emma for being so "freaking annoying"....sniff, sniff, sniff. So, like any good mother, I decided to time and count the sniffs. In a 60 second countdown, he sniffed the left and only the left nostril 25 times. A bite of fries, two sniffs, a drink of milkshake, three sniffs, a shout at Emma, four sniffs. I don't even think he was aware of it, so how do you make Ryan stop doing something he doesn't even know he is doing? The answer, according to other people living with autism, you don't.

We all have stims, tic and annoying habits. Some of us are hair twirlers, leg bouncers or knuckle crackers. The difference between a neurotypical person's stims or tics versus someone living with autism is the type of stimming repetition and the intensity of the repetition. I remember watching the Temple Grandin Movie on HBO for the first time, sharing my popcorn with Clueless and Denial. A parent asked Temple how to make her child stop spinning and stimming and Temple very adamantly said, "You don't." Adults and children living with autism need to stim and tic as much as they need to breath. When the world gets too big, too loud and too bright, these quirky behaviors are what gives them peace and makes them able to get through whatever emotion is or situation is bothering them. I felt so guilty that for years, I tried to make Ryan stop and in all AWEnesty, he couldn't. I dumped my popcorn on Clueless and Denial's heads and kicked them out of my house and went and snuggled my sniffing, licking, finger flicking boy.

In the book, The Reason I Jump, the author, Naoki Higashida (who wrote the book at age 13 when he was non-verbal) explains that stimms and tics are not a result of a problem at a nerve level, but at an emotional level. Naoki explains that because people living with autism are often unable to express what they are feeling, he says, "the despair we're feeling has nowhere to go and fills up our entire bodies, making our senses more and more confused....and sometimes, all my body's energy is concentrated in one area ." So for this week, or this month, or this year, Ryan's emotions and senses are all piling up in his left nostril, and regardless of how annoying 25 sniffs in 60 seconds can be, that's the only exit for my boy's new middle school stress so, I must either try to ignore the sniffs or get ear plugs. I wonder if I should get the entire 6th grade ear plugs too?
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Over the years, it's been difficult to ignore the tics and the stims, not so much because it bothers me, but I worry that it bothers others. I know that I shouldn't care what others think, but like any mom, I want my son to be accepted by his peers, not teased and bullied because his face looks like he is wearing clown makeup from September to March, or that his left nostril sniffs approximately 3,600 times an hour. I try to have the, "let's only do it at home where it's safe" talks, but guess what, most of Ryan's stress comes from the outside world when his routine is disrupted, the world is unpredictable and Mama Bear isn't by his side to protect him. I just hope when I send Ryan out there, most people see past the tic, to the beautiful, anxious boy lying behind the red, chapped face. 

Whether you are an x or an o, we all have our tics. So, the next time you see a child or an adult, spinning, flapping, licking or sniffing, try and remember the last time the world felt loud, bright and disorganized and what you did to make yourself feel better. Maybe you called a friend, opened a bottle of wine or twirled the he** out of your hair. Chances are, whatever coping mechanism you used, your body relaxed and you felt better. Chances are even better that nobody stopped you or judged you for your particular coping "tic". Maybe its a game of Tic Tac Toe to shut out a pastor's sermon on the Bible's predictions of "End Times" (after a Saturday night of sinning) or maybe it's 25 sniffs a minute to write a poem about metaphors (Ryan chose "writing is like a disaster area", which I though was brilliant), but whatever it takes to cope, whatever it takes to calm down, whatever it takes to make the world less big, is what we all need to do to be triumphant in this world. Discovering what tic works for you is like discovering you have two places to put your x, on that Tic Tac Toe board. It makes you want to keep playing, keep trying and keep leaving all the zeros, I mean o's in the dust.
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This was Easter time. The red, chapped face heals just in time for the egg hunt.
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"Mom, Who's Your Favorite?"

9/19/2013

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Unless you were an only child, or extremely confident in your childhood fabulousness, chances are at some point in time you asked your mother or father THE question. THE, "Who is your favorite?" question. That overwhelming desire to hear the words, "Of course YOU are my favorite." has lead multiple generations over countless decades to ask THAT taboo question. Taboo because a parent is not suppose to have a favorite, right?  Being the fifth of five girls, I always wanted to know who was the "chosen one". After all, there was no prodigal son to stand out in the crowd and carry on the family name (although clearly with my haircut in this picture they sure wish I had been), no twins or triplets, no child with some extreme gift (sorry sisters), just five adorable (hey, it was the 70's) daughters. Since I was the baby, with an age gap spanning 10-16 years, clearly I felt I had the edge or at the very least, my mother had been beaten down enough to just answer the question I longed to hear so I would shut up. Of course, it never crossed my egocentric child mind that my mother would name one of my other sisters as "the favorite", which is clearly what I deserved to hear for even asking my poor mother to rank her love. No, I always waited for my mother's finger to point right to me or to have her bend over and secretly whisper in my ear, "You are my favorite, but don't tell your sisters". Nope, didn't happen. My mom always played it safe and gave the Switzerland answer, "I love you all the same." Foiled again. Clearly, my mother had not been beaten down enough, but I would be willing to bet she had her fingers crossed.

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I remember watching a documentary on The Titanic, where they described that parents aboard the unsinkable ship may have had to choose which child should go in the lifeboat and which child should remain on the doomed ship. Back in those days, it may not have been the favorite child chosen to survive, but the child that could provide for the family, take care of the farm, etc. In other words...the boy. Can you even imagine being faced with such a choice? Of course we all say, "I could never choose. We would all go down together." because that's what you are suppose to say. That's the "right" thing to say. Well, since I'm rarely "right" and I never do what I'm supposed to, I'm just going to be AWEnest. My biggest concern, had I been on that ill fated ship, would have been that with my paralyzing fear of sharks and freezing cold water, that I would have pushed all three kids aside and jumped into that lifeboat myself.  I'd like to think I'm a better mother than that, but since history has a way of repeating itself and I once went screaming for my life after seeing a snake on the playground and left my poor 18 month old daughter on said playground in the direct path of the terrifyingly, vicious garter snake , I think you should heed a sound piece of advice. If you and your children ever go on a cruise ship with me and my family, and an iceberg strikes, pick a lifeboat on the other side of the ship.

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Of course it wasn't until I became a mother that I began to understand my mother's disappointing, albeit, safe answer of, "I love you all the same". It's true, I have the same amount of love for all my children, as in, I don't love one child more or less than the next, but l love them all differently because each one of my kids is so very different. When I was a child, asking my mom THE taboo question, I should have reworded the question to something like, "Which one of us girls do you like the best?" or "Who is your favorite kid....today?". Because that my friend is an entirely different ball game.

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If you are AWEnest with yourself, then you know that there most certainly are times that you LIKE one child better than the other, and your kid who is having an off day, better do himself a favor and stay on dry land. Some kids are happier, some kids are pleasers, some kids just go with the flow. Other kids are high strung, other kids are whiney, other kids have no off switch. Doesn't mean you love one more than the next, just means different kid equals different needs. And some days, depending on your own needs as a parent, well, some kids are just sunk.

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Although I do not have a "favorite", there are some days, some moments, that I AWEnestly like one kid best. For example, Kyle is my favorite in the summer because he unloads groceries and puts the shopping cart back regardless of how far away the cart storage thingie is from our car, or regardless if it's pouring down rain. In the meantime, the other two slackers clamor over the seats trying to find the coveted treat just purchased melting in a shopping bag. Kyle also is a smart a**,  just like his mother which sometimes puts him at the top of the list and sometimes puts him at the bottom, depending on mom's mood for the day. Ryan is my favorite when I've spent a long day surrounded by people and I just want to enjoy the quiet in the car and not feel like I have to make conversation. That boy does not believe there is a place for idle chit chat in this world and sometimes Ryan's silence is heavenly. Emma is my favorite when I am sick....always checking on me, always loving and soothing me with her, "poor Mommy" and never worrying about "catching it". Emma is my born nurturer. I will most assuredly choose Emma's hometown when deciding on my nursing home. Different days, different reasons, but I love them "all the same". Well....all the same "amount".

I'm betting as one of my three kids, it doesn't always feel that way though. As I spend hours focused on Ryan and his homework yet I barely acknowledge Emma's perfect math test with a distracted, "That's great honey....Ryan please, please pay attention.". Second grade math is not pre-algebra, but it certainly deserves just as much recognition because when it has a smiley face scratch and sniff sticker on it, to Emma, it's calculus. Then there are the days when Kyle reminds me at least a dozen times that he has friends coming over to work on a group assignment and when the doorbell rings I'm freaking out that they are coming over now and my house looks like it got struck by an iceberg? "Why didn't you tell me?" I ask, and Kyle responds with daggers from his eyes, "I told you last night when you were helping Ryan with his homework." Oh, that must have been when I was on the floor praying to the homework gods for June to arrive quickly and didn't hear Kyle remind me....again.

When you have a child with an ASD or any other kind of "different ability", sometimes they tend to get more attention because their needs, in some aspects, are very different from their brothers and sisters. I don't think it's fair to say that Ryan and kids like him need the attention more than their neurotypical siblings because acknowledging Emma's math test and hearing Kyle when he tells me something is equally as important as Ryan's need for a new binder immediately because his broke and if it's not replaced his teachers may turn him to stone. The irony of all the time I spend with Ryan is that he would prefer nothing more than for me to stop nagging, I mean, helping him, and I bet this time together is not what Ryan sees as evidence of favoritism, but as a necessary evil. And sometimes I wonder if Kyle and Emma think Ryan is the favorite based on the amount of time I help Ryan with homework or the numerous times I cut him some slack because the battle fatigue just isn't worth the victory.

Then there are other moments when I wonder, if Ryan feels like Kyle and Emma are my favorites because sometimes it's just easier with them.  Kyle and Emma don't have such stringent demands for certain foods, certain routines, and certain toe nail clippers. Kyle and Emma want to sit and chat about their day with me or just hang out in the same room that I am taking up space in. They tell me about their friends, what happened at lunch or on the bus on the way home. Besides what is written in Ryan's agenda or what is on his teachers' websites, I have no idea what is going on in Ryan's life and AWEnestly, that makes the quantity of time spent doing homework with him somewhat enjoyable. I may be a necessary evil for Ryan because in his words, he "sucks at English", and he needs good old mom's help, but I hope he understands that dumb mom enjoys the moments when I get a small glimpse inside his day even if that day is a battle over what purpose a metaphor has in our day to day living. I just hope that while I'm helping Ryan with homework, that Kyle and Emma aren't online looking up inappropriate web sites, dabbling in illegal substances or sneaking out the back door to vandalize the neighborhood after feeling neglected and assuming that they are wearing the "least favorite" kid title.Favoritism....we try not to have it, try not to show it, and try not to believe it exists even for a second, but sometimes as a kid, you feel your rank regardless of the "amount" of love you get.

Yep, Guilt keeps showing up again....and again....and again. It's a shame Guilt wasn't on The Titanic. Parenting is hard. Getting it right most of the time is even harder. Doing it without Guilt holding your hand and taking your spot on the life boat, is next to impossible. As a child, it was all about the numbers. Who is your number one favorite kid? Who is second? Who is last? Now, as a parent, I finally understand my mother's Switzerland answer of "I love you all the same". Love can't be measured. There is no scale, no measuring device, no yardstick....love is immeasurable regardless if you have one child or ten so you can't rank it or rate it. Whether it's a child with a different ability or not, the love a parent has for their child is as unique as the child itself and no "rank" is necessary.

The Titanic was suppose to be unsinkable...this claim was measured by the amount of planning, complexity, "high tech" features and the 70,000 tons of steel used to build it. I would imagine there were plenty of numbers and equations involved in making such an infinite claim, yet, it took one lurking iceberg not seen by the lookout, that had been left out of the equation, to sink the unsinkable. I had no lookout warning me of Autism. I didn't plan for it, I didn't ask for it, and I didn't have a lifeboat to escape to in case autism showed up, but none the less, autism has become a part of our family. Whether you are the child living with autism, the sibling, or the parent, an autism diagnosis effects us all in various ways, however, unlike the Titanic's iceberg, autism has not defined our fate. Some days, autism feels like a giant iceberg ready to pull us under, but most days, it is just a blip on the radar...nothing that makes our ship any different than the next one. And even on the choppiest days, when the waves rock our ship more so than others, I never worry about which kid is the favorite and who I should save first, because the answer is easy....who ever took out the trash the night before, gets the first life vest.
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Surely, I would save them first regardless of snakes or sharks, right?
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Phony Mommy Moments

9/12/2013

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So I had a moment. This past Monday, September 9, 2013 I was invited to introduce The AWEnesty of Autism to the Central PA area via a new television show called, Good Day PA! on abc27 news. Ironically, it was also Jenny McCarthy's first day on The View. Two moms loving a child with autism (oh, wait, I'm sorry, her son has "recovered" from autism) making their big debut. While sitting in The Green Room waiting for Good Day PA! to begin, I got to watch balloons rain down on Jenny McCarthy and watch Jenny and Sherri Shepherd show Barbara Walters how to "twerk". Sadly, I did not have the opportunity to twerk on Good Day PA! and chances are I would have fallen down while twerking since getting the microphone up the back of my dress was difficult enough. Even though there was not a sea of balloons and Michael Buble was not on set to sing to me, the people at abc27 news were amazing. They helped me relax, they made me feel comfortable and Amy Kehm made me feel like The AWEnesty of Autism Blog was as worthy of air time as any former Playboy Playmate showing Baba Wawa how to twerk.

So, I had my five...well actually, about three, minutes of fame and I rode it. I did not wind up looking like Cindy Brady.....
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The Brady Bunch. Paramount Television
....but, I doubt I will be asked to replace Whoopi when she retires from The View or Jenny McCarthy if she is fired for "twerking" during daytime television. Still, it was a fun morning and I was riding that celebrity feeling until it all went down hill...fast. Off came my less than three minutes of fame hat and on went my taxi driver hat, homework helper hat and dinner fetcher hat. Apparently, a small town starlet burns out quickly, and unfortunately, with the final lingering embers of said starlet, the entire house went up in smoke with her.

The official time was 7:17 PM, on September 9th when my red carpet high was extinguished. It occurred at the exact same time that Ryan's official middle school "honeymoon period" was snuffed out too. It wasn't a coincidence. Apparently, middle school honeymoon periods have about the same life expectancy as a local wannabe celebrity. Yes, the changes, the demands and the novelty of middle school had vanished for Ryan, taking my red carpet dreams with it. Boy, sometimes reality sucks...unless of course you are filming a reality television show. Unfortunately, we are not.

The end of the middle school honeymoon period was signaled by several emails from Ryan's teachers just hours after my live debut. "Ryan is not completing his work"...."Ryan seems to be spacing out"...."Ryan is the last student to get started"....and, "This is an accelerated class, and Ryan needs a good bit of direction and re-focusing". Crap. Ryan had been working hard on his own and I kept asking if he needed help and he proudly yelled, "not at all, I'm just fine". So, I thought with his new found independence Ryan was indeed doing "just fine". I tried to loosen that cord a bit, which as a mom, I have a hard time doing, but it seemed I left the cord too loose and my guy was close to hanging himself with it. By the end of the night, I was ready to hang myself too.
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I asked Ryan why he wasn't finishing his work and he told me, "I don't understand and it makes my brain hurt". I asked Ryan why he wasn't paying attention and he said, "It's hard to listen for so long". I asked Ryan if the accelerated math was too hard and he said, through tears, "No, I just don't like to show my work because the answers are all in my head." And with that statement, the tears began as Ryan begged me not to put him in "easy math" because math is where he is confident, math is where he excels, math is what makes him feel smart. Writing and reading comprehension are difficult for Ryan and always have been, but what Ryan failed to see, was that the good old elementary school days of just using the "I didn't understand it" excuse were long gone and that now, in middle school, unfinished work is just that, unfinished work. Unfinished work equals a less than stellar grade, so we set out to get his homework completed....together. And that's where it got UGLY.

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It was a simple science poster. Write down a science vocabulary word (that was in his book directly in front of him), write down the meaning (also, right in front of his face) then draw a picture of the word (ok, drawing he hates). The word was observer. I told him to write down the word and the definition (did I mention it was all right in front of him?). Then we looked up Jane Goodall on the web as an example of an observer. I explained that Jane Goodall was a scientist that OBSERVED and studied gorillas then I drew this fabulous piece of art work (yes, an adult drew this picture). Feeling quite pleased with myself, giving Ryan all the visual cues he needed I let him at it. Fifteen minutes later, the poster was as blank as the expression on his face. We went through it all again....and again....and again. Still nothing. I could feel it coming, that moment when my sweet, perky Cindy Brady celebrity persona was about to be replaced with Linda Blair from The Exorcist. 

In an attempt not to freak out, through gritted teeth I asked, "Why haven't you written anything down?" to which Ryan responded, "I dunno." "What do you mean you don't know? I have given you everything you need and you still have 6 other words and pictures to finish and it's 9:00!", in my almost Linda Blair voice. "I don't get it.", he responded dejectedly. AWEnestly, what is not to get? I found a great example, I gave him visual cues and I gave him time to process the information. In fact, I  practically did everything for him....and there in lies the problem. In Ryan's black and white mind, me helping "too much" is cheating, me not helping enough is leaving him out to dry and since Ryan does not see anything between black and white, sometimes when it comes to homework, we are as doomed as Linda Blair's priest.

I'm pretty sure Ryan sees it coming...this transformation from good mommy to bad mommy. He probably notices the steam coming from my nostrils and with his innately sensitive sensory system he probably feels me trembling from across the room. I try to count to ten, but I barely make it to three before I shout, "I give up! You are on your own!" and stomp out of his bedroom in tears while Ryan sits at his desk drying his own. I hate these moments. My frustration comes out from my inability to reach him, my inability to help him. Sometimes, autism has a hold on Ryan's brain that is so strong, no matter how much love, patience (some days more patience than others), and effort I put forth, I cannot release autism's stubborn grip.

You know those moments when as a mom you watch your child escape a near disastrous injury or accident? A near miss of fingers in the car door, a close call from a car while chasing a stray ball out on the street, or an almost skull fracture along the side of the pool when they slip while running even after you have told them a hundred times not to run by the pool. Many times our first instinct is to scold and yell...."I told you not to run in the street!"...."I told you to walk along the side of the pool!"...."I told you to BE CAREFUL!" even though the fear coursing through our veins is quickly replaced with gratitude that our child is safe. That instinct to yell is out of frustration, out of fear, out of our lack of control. We quickly snatch our perfectly safe kids in our hands and say, "I'm sorry Mommy yelled, I was just so worried about you." And that's it in a nutshell. I am so worried, especially in those moments when I can't "reach" Ryan. I know he is frustrated, I know he is confused, I know he is hurting and I know I feel completely helpless. As a result, sadly, sometimes I yell first, cry second, and apologize third. It's a frustratingly heartbreaking pattern.

As I slammed my bedroom door shut and crawled onto my bed, through my devil possessed, heartbroken soul I wondered, where did that perky, excited mom who looked like she had been hanging out with "Molly" (FYI, "Molly", is the latest ecstasy drug so if your kids tell you about their new friend "Molly" ask to meet her and see her birth certificate) ten minutes before show time go? You know the one who is always filled with excited energy and uses humor to share her son's autism journey so as not to be the Debbie Downer at every neighborhood block party? Well, I will tell you that some days, Linda Blair's head spinning beats the crap out of Cindy Brady's perkiness. I'd like to say it's the work of the devil, but sadly, it's just some days, even the most AWEnest, careful moms, slip off the side of the pool and hit their head while running. 
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After I exorcised my devil, I apologized to Ryan and as I dried both of our tears I explained to him that Mommy gets "mad" because my brain can't figure out how to help his brain because his brain is so much smarter than mine. Ryan loves this, by the way. I tell Ryan, I am never angry with him, just with myself and that it's Mommy's job to help him and it makes me sad when I can't find a way to do that. So we finished the poster at 10:37PM and I tucked him into bed. I proceeded to text Dan and let him know that the woman he watched on TV today was as phony as all the other three minute of fame celebrities and that I had burnt out as quickly as Cindy Brady and MC Hammer. Dan said, that woman wasn't phony, "she was AWEnest". Some days, being AWEnest can be exhausting.

"Different, not less" I believe with all my heart, but "different not less" does not mean, "different" is easy. In fact, some days, "different" is really, really tough. And even on the tough days, when I have my phony mommy moments, when I go from Cindy Brady to Linda Blair before a live audience or in the sanctity of our crazy home, I still prefer my mom hat over my three minutes of fame celebrity hat. Unlike Jenny McCarthy, my big television debut will quickly be forgotten...."Kate who?". I will not be discussed in autism forums, I will not be tweeted, I will not be twerking and I will not be trending. As my "celebrity" moment fades away into the abyss of time (like as soon as I walked off the set) I hope bigger, better moments lie ahead for me as "Mom". And although there will certainly be some damage that I do along the way, hopefully, my kids have fabulous careers which will afford them a great therapist as well as a great plastic surgeon for good OLD Mom, just in case Jenny's twerking doesn't quite make the grade and The View does in fact come calling.
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The "moments" that mean the most are typically the least celebrated.
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Moccasins or Wedges, Just Don't Go It Alone

9/6/2013

7 Comments

 
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"Don't judge any man until you have walked two moons in his moccasins" is an old Native American Proverb. Maybe you have heard the White Man's revised version of "Never judge a man until you have walked a mile in his shoes." Not only did the White Man change the Native American wording, we changed time to distance (along with taking all the Native Americans' land, forcing them onto reservations and killing off their beloved buffalo...White Man kind of sucks). Two moons equals approximately two months where as a mile equals 1,760 yards (totally had to look that up, sorry to disappoint you). Regardless if it's time or distance, the proverb basically means until you have spent enough time or traveled far enough with a person, you can't fully understand their "shoes", so don't judge them. Although I agree with this wholeheartedly, I wonder what gives anyone the right to judge anyone else, regardless of the kind of shoes they are wearing?

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I am not a moccasin kind of girl, I feel like they are basically slippers that you can wear outside, to the grocery store, or heaven forbid, to the mall with your teenager....without makeup....and singing....out loud. No, I may have never walked a mile or two moons in your moccasins, because AWEnestly, I'm really not a fan of outdoor slipper wear (even though I'm sure my feet would appreciate moccasins over heels or wedges any day). Regardless of the style of shoes we wear, if you have a child with an Autism Spectrum Disorder, chances are good we have worn our own separate shoes in our own unique size, but, I'm betting we have the same amount  of blisters from traveling a similar path.

Regardless of what kind of shoes you prefer, after you hear the words, "Your child has autism", deciding where to turn next, how many miles you must travel or how many moons it takes you to get "there", wherever the he** "there" is, can be an incredibly lonely, mind numbing feeling. Once the numbness fades and the pain sets in, you just hope that there has been someone who has walked this journey before and you pray they will walk it with you, regardless if they are wearing moccasins, wedges or flip flops.
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The day we heard, "Ryan has an Autism Spectrum Disorder....Pervasive Developmental Disorder Not Otherwised Specified (PDD-NOS)" or in other words, High Functioning Autism, I know I did not hear a SINGLE word that kind hearted psychologist said to me after those 12 words settled in my ears and in my heart. I didn't hear all the good things she said about Ryan. I didn't hear that he was sweet and kind, that he was incredibly smart and that he showed compassion and empathy, nope I had stopped listening. I realized in that moment, that all I had feared for Ryan, had come true. And even though Dan was right there beside me, holding my hand and eventually holding me up as I crumbled outside in the parking lot, I had never felt so alone. None of my friends' children had autism. No one in my family had autism. None of the other kids in kindergarten had autism (that I knew of....trust me, you'd be surprised). My other son didn't have autism. Besides Rainman, I didn't know anyone with autism. Where was I going to turn? Who was going to help me, help my son?

After the sobbing stopped and I tried to believe Dan's constant reminder that Ryan was the same little boy he was before we walked through that psychologist's door, I had to figure out, "Now What?" and I'm here to tell you, the "Now What" can be exhausting. The list of Now What's on a psych evaluation can be terribly overwhelming. Find an occupational therapist, get your son a great speech therapist, an experienced  Therapeutic Staff Support worker would really help, and on, and on, and on. Don't get me wrong, many psychologists (like Ryan's) give you referrals and recommendations, they don't just shake your hand, take your money and send you on your way, but, according to other parents, some certainly do. I don't believe this is meant to be uncaring, it's just with ASD diagnoses occurring in 1 in 88 kids, not all of these docs have time to hold a mother's trembling hand. What we mother's need, is another mother, wearing moccasins or wedges to guide us on the path that they have already traveled.
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I started this blog to tell a story...our story about the way autism has impacted our family....the good, the bad, the funny. The bad usually stems from my lack of understanding and my poor choice in friends, Denial and Clueless which I share with my readers, risking that you may in fact judge me and my wedges. The good comes when I stop listening to those loser "friends" and start listening to my son. This "listening" often does not come from what Ryan says, but in his actions, his struggles, and his joy. Over the years, I have AWEnestly had to become a bit of a detective, trying to decipher clues Ryan gives me without using words. I have enjoyed sharing my detective work with all of you as I have equally enjoyed you sharing your unique CSI skills with me. In a little over 7 months, the blog has gone beyond what I ever imagined, thanks to all of you. Some days telling our story is cathartic, other days it's a 2 glass of wine day to recover from my PTSD due to reliving some of the uglier moments, but I am enjoying every single second of it, so thank you.

In addition to my own therapeutic purging in this blog, I have also created a beautiful love story written for my son that he may one day enjoy when I'm gone (of course, with my neuroses, I think that will be any day now). Although my blog my have opened many readers eyes and hearts to understanding life with autism, through readers' emails, comments and FB posts, my eyes have been opened and what they have seen breaks my heart. Unfortunately, there are still a lot of parents and grandparents traveling alone on this journey over several moons and countless miles and many of them feel lost and alone. I'm hoping with my next turn on my journey (wearing cute shoes), I can guide these families with compassion, experience and knowledge so their journey feels less lonely and they end up with fewer blisters regardless of their choice of footwear.
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My most recent path on this autism journey has lead me to start my own advocacy business, entitled AWEnest Advocacy (www.awenestadvocacy.com) in an attempt to reach more families loving a child with autism, but this time through action, not just words. I will wear moccasins, wedges, stillettos and even Crocs...ok, AWEnestly, I won't wear Crocs because, well, they may just be the ugliest shoes ever made regardless of how many cute jibbitz you stick in those ugly holes, because I believe I can advocate for any child with my mind and my heart not my feet. My hope is to help other parents or family members who either are too overwhelmed or too busy taking care of their AWEsome child and his or her day to day needs to find the best resources to enable their child's success. As I have traveled this journey, even in the times I have felt most alone, I was always fortunate enough to have wonderful people who are as passionate about helping these AWEsome kids as I am. I remember a time that I felt so alone and had no idea which way to turn and would have given anything to have someone who has walked in my wedges for two moons or one mile to guide me.

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I promise that my blog will remain the same...this will be my one and only shameless plug for my new venture. The blog has rewarded me in ways I had never dreamed of, and that path will not change. I just hope this new path is as equally rewarding. So, as you slip into your moccasins, your wedges or your Crocs (please, please don't) and venture out into another day, remember if the moon is waning or the pedometer is beeping and both you and your moccasins are worn out from traveling so many miles alone, there is always someone out there to grab your hand and guide you. Someone who has traveled this path before. This hand that guides you will not judge your footwear or the turns you have made on your journey, and although the hand that reaches out may not have any fancy letters to support their navigational skills such as PhD, MSW, MD, or PsyD, sometimes the only letters of that outreached hand needed are MOM.

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    The Mighty Contributor

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    Definition of Awe:
    "a mixed emotion of
    reverence, respect, dread and wonder inspired by authority, genius, great
    beauty, sublimity or might." Yep, someone should have consulted a mom 
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    spelling AWEtism.

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