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Turkey Remorse

11/25/2014

1 Comment

 
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Thanksgiving is hours away which means turkeys everywhere are running and hiding hoping that they have survived one more year not resting alongside your sweet potatoes. Some turkeys may seek shelter with deer, unaware that the poor deer's time, come Monday, may also be limited. If these turkeys had any sense at all, they would run or fly (how well do turkeys really fly?) and take up residence on the White House Lawn, hoping that they too will receive a Presidential Turkey Pardon.

Each and every Thanksgiving, the White House turkey is pardoned and rather than lopping off it's head, the President opts to use his free Giant Turkey coupon after scoring so many Giant Bonus Points and allows this turkey designee to spend it's Golden Years roaming the turkey pen at Mt. Vernon.

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There is some debate over who the first President was to pardon our Thanksgiving Day main dish. Some say Lincoln unofficially pardoned the bird when his son Tad had become so attached to the family turkey that he couldn't bear to eat him. Still others believe President Kennedy was the first to pardon a turkey when he returned the White House turkey after he said, "We'll let this one grow" and sent the grateful turkey back. Rumor has it, that it was George H. W. Bush who actually used the term "pardon" when he excused the White House turkey from the Holiday "festivities". A pardon, really George? So, I guess I am to assume that if President Bush pardoned this turkey, the turkey must surely have gobbled, "I'm sorry" right before he said, "yeee-haw"!

A pardon is forgiving someone for an "error" or "offense". And don't you think that most people before pardoning someone, wait to hear the words, "I'm sorry" or "forgive me" or at the very least, "wow, what I did sucked" from the wrongdoer? Does the White House turkey show remorse or apologize for being who he is? He can't help it he was born a turkey. He shouldn't have to apologize for tasting so good next to your stuffing and mashed potatoes, but, if this turkey is being pardoned then surely he must have done something wrong, right? 

I can't help but wonder if this lucky bird has to apologize in order to, literally, save his head or is it just assumed he is seeking forgiveness since, after all, he lives in Washington and so many folks living there feel remorseful for their wrongdoings without every uttering an, "I'm sorry" (Bill Clinton aside)? What about all the other turkeys? The turkeys in Idaho and Maine? The middle class turkeys who are equally as guilty of being exactly who they are meant to be, who can't utter an "I'm sorry" and whose address alone will not get them a pardon?

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One of the many things I am thankful for this Thanksgiving Eve is that Ryan is NOT a turkey. First, we don't live on Pennsylvania Avenue and second, Ryan has almost as much trouble uttering the words, "I'm sorry" in order to seek a pardon, as your average middle class turkey. Relax autism advocates, I am not comparing my beautiful son to a turkey, well, in a way I am, but, please wait for my point before taking to the internet and flogging me.

My point is, when Ryan commits an "offense", an "error" or some type of "wrongdoing", getting him to apologize in order to receive a pardon is like getting a turkey to talk. There is some part of autism that grabs hold of Ryan's mouth and clamps it closed and will NOT allow the words, "I'm sorry" to come out. I wholeheartedly believe Ryan feels remorse when he hurts someone....sometimes, but, saying he's sorry is extremely difficult. I don't know if admitting wrongdoing is hard because understanding the social implications of his offense or error is difficult to grasp and he believes what he did was "right", or if somehow in Ryan's mind, uttering the words, "I'm sorry", is relinquishing one of the few forms of control he has in an otherwise chaotic world. The control of being "right".

It could be something as minor as ramming my heels with the grocery cart. After I stop cursing, Ryan may mumble, "You were in the way." or "I didn't do that on purpose.", but, he will not say, "I'm sorry.". Is that enough remorse for a pardon? Then there are bigger errors, like when Ryan slapped his sister's four leaf clover right out of her hand when she was just happily and proudly sharing her good fortune with him because he doesn't "believe in clover bringing good luck". When such an offense caused his sister's heart to fill with sadness and her eyes to fill with tears and he refused to apologize regardless of our "intervention", ok, fine our threats of removing all electronic devices, yet, still no apology, should Ryan be pardoned?

For Ryan, "I'm sorry" is like talking turkey, if he doesn't believe he has committed an offense why should he say something he doesn't mean? We have all been there, the one to "give in", the one to "say it first", but, even if it's like swallowing a turkey bone, we can say the words, "I'm sorry" when we believe it and even when we don't because we know it is either the right thing to do, or the thing that brings peace back into the house.

I believe that 90% of the time Ryan does understand his offense and I believe he is "sorry", but, just like so many other emotions when it comes to autism, how Ryan shows this remorse, looks "different, not less". As Ryan gets older, he is getting wiser. He understands that sometime he has to do and say things that may not feel comfortable for him, but, in order to move on, he may need to feel a little uncomfortable. 

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Just because Ryan struggles to utter the words, "I'm sorry" doesn't mean he should be pardoned for his errors or offenses without first trying to understand the implications of his offense. Yes, autism may make understanding how Ryan's actions impact others more difficult, but, autism is not a free pass to a free pardon. Ryan's lack of belief in a lucky four leaf clover, did not excuse the heartache he caused his sister. It took days to get Ryan to understand how he hurt his sister, and I do believe he "got it", but she never heard the words, "I'm sorry". What she did hear, was his voice being a little kinder than usual the next day.

Just like the turkey can't help who he is and where his place is in the world, or on your dinner table, people with autism can no more help who they are either. Not showing remorse does not mean they don't feel it. The words "I'm sorry" may not come out of their mouth, but, the White House turkey doesn't say them either and they still get a break. Just like the Presidents of the past and the Presidents for years to come will continue to show compassion to a turkey and pardon said turkey for being who they are, we too must show compassion for people living with autism. We must try to understand and pardon them when they may not be able to find the words I'm sorry when they ram us with a shopping cart, but, can find the exact words to let us know how hideous we look with our latest hair style.

Unlike the Thanksgiving Day turkey, Ryan is remorseful when he has done something wrong and he can sometimes quietly, in a barely audible voice, and typically in a scripted language, say the words, "I'm sorry" even if it feels like someone is pulling his wing off. 

So, on this Thanksgiving Day, I'm not trying to make you feel guilty when you eat your unpardoned turkey, but, I'm asking you to take just a moment to remember that the turkey can't help who he is and he may not have been able to apologize in order to get his pardon, but, that doesn't mean the turkey isn't sorry that today, of all days, he couldn't find the words, "I'm sorry". If I have instilled a little turkey guilt, you might just want to stick with the sweet potatoes, I hear they show no remorse....ever.

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Happy Thanksgiving!!
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Movin' On Up

8/21/2014

2 Comments

 
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Next Monday school begins and no one is more excited about that upcoming date than Ryan. He longs for the feel of a freshly sharpened wooden pencil (#2 Ticonderoga only please) held securely in his hand, as well as the soothing, steady hum of the fluorescent lights (please Mr. and Mrs. Custodian replace any blinking, flashing bulbs as well as any super loud buzzing bulbs) and the smell of the freshly waxed classroom floors drifting through the hallways that within hours, will be replaced with the stench of hundreds of teenagers wearing fall back to school clothes on an 80 degree summer day. The routine of routine is just around the corner for my soon to be seventh grader and he will breath a big, sigh of relief having survived another "boring" summer.

Yes, as my beautiful boy happily enters the hallowed middle school doorway, movin' on up as a seventh grader, Ryan will not look back to sixth grade days gone by.....ever. I want to apologize in advance to all his former sixth grade teachers, the 6R Team, but, just like George and Louise (aka, Weezy) moved to that "deeeeluxe apartment in the skyy-hii-hiii" after they finally "got a piece of the pie", their old neighbors in Queens, Archie and Edith Bunker, became a distant memory. Ryan will remember you all fondly, but, now that he has moved on up to the East Side, chances are he won't ever look back down. Yes, in this scenario you are The Bunkers and sorry, but, chances are also good that you won't make a guest appearance in a later episode.

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Try not to take it personally, you wonderful teachers who so willingly and eagerly helped my boy feel at home each and every day, this sort of love 'em and leave 'em pattern has been going on for quite some time. 

Sometimes I think this behavior is a result of autism's hold on Ryan's brain and he sees little benefit in a long term relationship with someone who has fulfilled their purpose. He needed you last year, you did your job so well last year, that he no longer needs you this year, so, sayonara, end of story. 

However, sometimes I think this love 'em and leave 'em attitude has nothing to do with autism and Ryan's brain, but, more to do with his heart. As I have watched my boy love and leave so many, I believe this attitude has more to do with protecting his sensitive, beautiful heart, than his atypical social and communication skills. Good byes are hard, pretending he never knew you is easier.

Ryan cries at the end of every school year, rejoicing in his success at getting closer and closer to finding his piece of the pie, but, sad that it is once again, time to move on up. Ryan truly loves the folks who helped serve him his piece of the pie, but, it's easier to just toss his pie plate aside waiting for the next bigger piece of pie than it is to get caught up in remembering all the ingredients it took to make that pie. It's not that Ryan doesn't realize the sugar, the butter, and the milk is what made his pie so sweet, it's just that eating the pie and tossing the plate aside is a lot less stressful on his overtaxed brain and a lot less painful on his ultra sensitive heart.

It has happened year after year, Ryan will pass his former teachers in the hallway and they may occasionally get a grunt or a halfhearted trying not to smile smile, but, chances are much higher that Ryan may completely ignore them. Some of Ryan's most beloved teachers have come to me at the beginning of the next school year, gripping their heart with a look of confused bewilderment in their eyes, and before the first syllable starts to from on their trembling lips, before the next beat of their abandoned heart, I know exactly what they are going to say, "Ryan just ignored me....again."  

As for you sooooooooo....last year teachers, still hanging out in the 6th grade hallway of Queens, sorry, but, you are no longer needed and you have quickly been replaced since my boy has moved on up. Ryan may occasionally allow his doorman to let you visit, but, chances are you won't get a key to his new place. 

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I know it's hard not to take his love 'em and leave 'em attitude personally, especially for a student who has so few friends, who often stands alone in the hallway or on the playground, who for 180 days trusted you, relied on you, needed you, above anyone else, to allow you to fade away as quickly as summer break, is difficult to understand, but, inevitably, it still happens. Ryan doesn't really mean to leave you behind in Queens, it's just that Ryan struggles to find a place for the past, while he puts all his effort into movin' on up, because for kids like Ryan, it takes "a whole lot of tryin' just to get up that hill".

Trust me, this summer more than ever, I have felt the love'em and leave 'em attitude as my almost teenage son has decided he no longer needs me to tuck him in at night, snuggle him or kiss him when "WE ARE IN PUBLIC". Just last year, before he moved on up, as a 6th grader in the Queens Borough hallway, I bragged about Ryan walking hand in hand into school with me, giving me a big "I love you" hug at the bus stop and not giving a hoot about what his fellow neighbors in Queens thought about his public displays of affection with dear old mom.

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This summer, I have felt more like The Bunkers, staying behind watching my boy movin' on up. Standing in the shadow of Ryan's new high rise on the East Side, as he moves on up without me...just as he should...just as I want him to....just as I feared he never would. And yet, as much as I hoped this day would come, I can't help, but, feel a little like Archie Bunker, pretending I don't care even though watching Ryan movin' on up as he repeatedly pulls away from my snuggles and kisses, feels like getting hit by the 7 train traveling from Queens to Manhattan.

I know that part of growing up means moving up...without me...yet I know that I will always be a part of Ryan's life. And on the days where I feel more like Florence the housekeeper than good old mom, I will keep in my heart the days gone by when a little hand warmed mine as we walked down the street ("IN PUBLIC"), I will touch my cheek right where his sweet little lips use to hurriedly brush across as he ran to the bus ("IN PUBLIC") and I will remember the AWE in his voice as we watched popsicle sunsets on our front porch back in the good old days in Queens, before Ryan moved on up. 

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So, come Monday morning, I will happily watch Ryan run, bent over, wearing new, uncomfortable not yet broken in clothes, charging at the bus like a bull, holding my cold cheek where his kisses once left my cheek warm and smelling of toothpaste. No doubt, I will shed a tear...or two. Not for my own selfish needs of hugs and kisses, but, for this AWEsome boy who is becoming more and more independent....just as he should be....just as I want him to....just as I feared he never would. 

As for you glorious 6R teachers, still hanging out in the Queens Borough Hallway, remember that alone, you may have been the 2 tbs of butter, the cup of sugar, or the 1/2 cup of milk, but, combined together, you, along with every other teacher Ryan has been blessed to have, all helped my son get that elusive piece of the pie. 

So, if you catch a glimpse of my boy movin' on up, through the seventh grade hallways on the East Side, keep saying hello, keep trying to reach him because I promise you, you have made an everlasting mark, even if you are ignored, you have not been forgotten. And if you keep trying, I promise, one day, you may be given just a tiny little crumb of that pie you helped bake, in the form of a smile or a quick hello, which may not be as filling as it once was, but, I hope it will still be equally satisfying.

As for me, well, just like Archie Bunker watched his former neighbor George Jefferson move on up without him, I will grumble and complain about being left behind, but, inside I will be beaming with pride hoping that one day, my boy remembers who was always by his side helping put all the necessary ingredients together before he finally got a piece of the pie. And selfishly, like any mom who loves her son and never, ever wants him to move on up without her, I will constantly remind Ryan that "as long as we live, it's you and me baby, there ain't nothing wrong with that".

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Click on the audio below and you will be Movin' On Up too. Bet the song is stuck in your head for the next 24 hours. You're welcome.
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The Placebo Effect

4/24/2014

1 Comment

 
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I am a self-admitted, self-diagnosed, hypochondriac. In fact, if there were a club for hypochondriacs, I feel certain I would be unanimously voted president, as long as I wasn't out sick or at a doctor's appointment the day of the nominations. If it's a scab on my arm that's been there for three days, it's most certainly skin cancer. A week filled with achy joints is not my "Welcome to the Mid-40's Party", chances are good, I have Lyme Disease. A tight feeling in my chest is not a result from skipping the gym for three weeks then hitting the weights as if I hadn't missed a day. Oh nooo, that tight feeling most assuredly is not muscle strain, it must be angina, therefore, a stress test is right around the corner. A cold and cough that sticks around as long as the pollen sticks to my porch furniture, is not something as simple as seasonal allergies, but, chances are very high that I have contracted a rare form of Avian Influenza, aka, Bird Flu. Yes, if I have read about it, chances are, I have it, or I will get it...soon. A doctor once told me that I "look for the unicorn instead of the horse" which is a much nicer way of saying, "Lady, you are bat sh** crazy".

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I would love to tell you that my hypochondria is limited to just my own perceived illnesses, but, that wouldn't be AWEnest of me. Every one of my doctors, and sadly, my children's doctors, have a photo of me lassoing a unicorn in their files. I never leave the doctors disappointed as I constantly walk right past the horse, completely ignoring him, so worried about finding that stupid, elusive unicorn. In fact, I think I leave many of the doctors shaking their head in bewilderment and looking forward to their lunch break when they can share my latest disease fearing, unicorn searching frenzy with the other doctors in the lunchroom. Yes, I'm a frantic worrier about my children's health, more so than my own (my primary care physician, my gynecologist, my breast care doctor and even my dentist would all find that VERY hard to believe). So, when Ryan was sick for a week with a fever, cold, and horrific cough (Bird Flu, Swine Flu, West Nile Virus...have the mosquitoes even been born yet?), WebMD was constantly pulled up on my phone and Ryan and I made a trip to the pediatrician's office....twice.

I was convinced Ryan had pneumonia, RSV, strep throat or something that would require some type of medication and a quick fix, but, alas, it was not bacteria born, it was the dreaded V Word...virus, which meant no antibiotic, no quick fix, just plenty of fluids with the oh so wise words, "just let the virus run it's course". Are you sure there isn't a pill, an ointment, an elixir, something to speed up and ease up this so called course? I mean, Ryan had already missed a week of school which meant he was way off schedule and that translates to lots of make up work that will come home upon his return to school, which increases the likelihood of meltdowns, which greatly increases the probability that I may feign a case of Ebola Virus so the CDC can quarantine me until all the make up work is completed. Are you absolutely, positively sure there isn't a pill for this?
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Whatever this VIRUS was (I no longer say "bug", read my blog post, Literally Speaking in March, 2013 to understand why), it made the dreaded, media hyped, Swine Flu seem like a walk in the park. Most days, Ryan's fever was in the 103-104 range, you know the kind of fever where they feel so miserable and just want cuddled and you have to put on a spacesuit to protect your skin from the heat. Fortunately, the fever is now gone, but, the cough, which at night echoes off the walls sounding remarkably like we are living in a wing in an old tuberculosis hospital, still lingers on...and on....and on. Poor fella, he's not a fan of being sick, and like any mom, I hate to see my kids sick too, until one day, several years ago, my old friend Denial plopped down on the couch next to me and my fever ridden boy and showed me a research article she had just discovered on Google (of course). 

This was back in the day when my old friend Denial and I were thick as thieves. Denial told me that some parents believed their child's autism symptoms abated when their child was sick with a fever. What? Yep, many parents noticed a reduction in stimming, an increase in language and an overall reduction of autism symptoms when their kids ran a fever. Once the fever went away, the autism symptoms returned. In fact, this was reported by so many parents enough times that a paper published in the journal Pediatrics in 2007 by Drs Dominick Purpura and Mark Mehler of the Albert Einstein College of Medicine, addressed this phenomenon. These two doctors discovered that the correlation between a fever and reduction of autism symptoms had to do with a part of the brain called the locus coeruleus. Yeah, I don't know how to pronounce it and I certainly had no idea that was part of my brain either. AWEnestly, I didn't care about all the scientific stuff that I couldn't even begin to say or understand, I was just astounded that a fever might allow me a chance to connect with my son! Well alrighty then, I decided to sit back and wait for the next virus to hit.
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Don't worry, no need to call child services, I didn't go all Munchausen Syndrome by Proxy on Ryan. I didn't intentionally get my kid sick by sneezing on him, running him into the neighbors house where strep throat was running rampant, or hide his Flintstones Vitamins from him, but, I have to be AWEnest, this complete and total hypochondriac was almost as excited for the next cold and flu season to hit as I was when I discovered WebMD. I couldn't help but wonder, if my guy got sick, would I starve his cold and feed his fever, to see if maybe, just maybe those parents were right? For a kid who constantly chews on his fingers, it didn't take long for Ryan to pick up a virus and for this mom to sit back and see if a fever, would in fact, crack his beautiful, impenetrable shell. 

I remember that virus like it was yesterday. I recall checking Ryan's temperature religiously, which of course he hated, but, I kept telling myself, that if these parents were right and his autism symptoms abated with the fever, then eventually when the fever rose, he wouldn't mind me sticking a thermometer in his ear every five minutes. Sure enough, in a matter of hours, Ryan's fever crept up and once it hit 101, I gave him some Motrin (I'm not that twisted that I'd make him suffer), but, I did sit next to him on the couch observing my sweet boy before the Motrin kicked in, waiting to see if his language improved, his connection got stronger, or if his Thomas the Tank Engine scripting subsided. In my heart of hearts, I did believe that Ryan seemed more "checked in". He answered my questions more readily, he responded more appropriately, and he let me snuggle him for hours. Was this a result of the fever taking hold of Ryan's locus coeruleus or was this just a little guy who felt so miserable he answered my questions so I'd leave him the hell alone and he could get back to watching Thomas?
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Denial assured me that Ryan's fever made him "better" which of course was an oxymoron for a kid whose eyes were glazed over with fever and who had snot dripping off his chin. Were Ryan's autism symptoms really reduced or was Denial fooling me again? Was my fear of The A Word so visceral that this research study became my placebo? My quick fix, my belief that something "wrong" got "better" with something as simple as a fever, or was it "all in my head"? As a mother who was so frightened by autism due to my lack of understanding, I think I would have believed anything might make Ryan "better". The placebo effect, a belief that some type of treatment will change a particular condition is so strong, that there is a perceived actual improvement in the condition, when in fact, there is none. For a long time, Denial and the placebo effect were hands down, part of my journey into autism acceptance. I kept looking for the "quick fix" whether it was real or all "in my head". I needed something to hold onto, something to give me hope, something to believe in, something that would one day make my son "better". More importantly, I needed something to wean me off of this powerful addiction I had with Denial. Or at the very least, a pill that made me think I had.

Don't we all want a quick fix or a pill to "make it better"? A pill that will heal a broken heart. An amnesiac syrup that will cause us to forget painful mistakes. An ointment that can rub away and clear up hurtful misunderstandings. A shot that may sting for a second, but, can protect us from hurt in the future. A fever that effects the locus coeruleus and makes autism fade away. Just like so many things in life, there are no "quick fixes" to make it all better, nor are there placebos to make you think things are better (unless of course you count wine). A broken heart needs time to heal. Mistakes may be hard to admit, but, sometimes, it's the only way to learn a valuable lesson. Misunderstandings take patience and forgiveness. Suffering through dark, hurtful times, makes us appreciate the light that much more. 
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So, whether or not a fever helped Ryan "check in" all those years ago by reducing some of the hold autism had on his locus coeruleus, or whether the study I had read about became a sort of placebo, I will never know. What I do know, is back when Denial was my friend, I was terrified, I felt terribly lost and alone and the quick fix I was looking for wasn't to make Ryan "better" because he was not, and is not, sick, broken or diseased, the quick fix was for me. I was the one with the damage, the boo boo, the hurt. A hypochondriac mother who was so worried about finding that stupid unicorn, that I almost missed the beautiful, magnificent, colt galloping right in front of me. 

As Ryan and I sat in the pediatrician's office (twice) last week, and my boy's temperature registered 103.7, he was the same Ryan he was before the fever. Ryan was brilliant as he assured the doctor that a strep test would not be needed since he felt fairly confident his "lungs had pneumonia" so the stethoscope was the only form of torture necessary. Ryan was anxious as he insisted (in a bossy, not terribly nice voice) on doing the flu swab in his nostril himself for fear the doctor would "poke" his brain then held the "contaminated" swab over his head refusing to give it to the doctor for fear she would "poke" him anyway. Ryan was proud that he survived the doctor's appointment with only a hint of tears and no shot or strep test. And Ryan was clever as he told me his blood sugar was dropping and convinced me that the only way to elevate it was via a Sheetz slushie.  
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With or without a fever, Ryan is AWEsome and just like a virus that has to "run it's course", autism will continue to run it's course throughout Ryan's lifetime. Some days, some situations, some moments, autism will be a bigger "symptom" than others. Some of the symptoms may disappear and be replaced with new symptoms, symptoms that may not show up on WebMD, leaving me completely at a loss. As I continue to watch Ryan grow, achieve and succeed, I am amazed at the fear that once held such a life altering grip on me. My fear, my unicorn searching, was all part of my journey that had to "run it's course" because without my mistakes, my worries, my obsessive Google searching, I would not be where I am today, therefore Ryan may not be where he is today either. 

You see, as Ryan's mother, I am his placebo. I cannot make autism go away with a pill, a shot or an untreated fever (I swear I always give him Motrin), but, I can be the voice when Ryan can't find his words, I can be the advocate when Ryan is too scared or too confused to fight, I can find the support he needs to be successful and I can be the arms that squeeze him to let him know he is loved. I will always be Ryan's placebo, because on the days when life is hard, the days when his differences stand out, the days when his "symptoms" are more severe, as Ryan's mother, I will always be what makes him "feel better" and no, "feeling better" is not "all in his head", that my friends, is "all in his heart".

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Chuckie Disease, I mean, Chuckie Cheese. A hypochondriac's worst nightmare.
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The Early Bird Gets the Choice Donut

3/6/2014

0 Comments

 
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I looooove Saturday mornings...sleeping in, no early morning kid activities, and long leisurely breakfasts in my jammies with my hot off the presses, just delivered on Friday, People Magazine. My little piece of heaven. So, when I have to get up early on a Saturday, I am not only tired from celebrating the arrival of the weekend by watching three back to back episodes of Breaking Bad until the wee hours of the morning, I'm grumpy too. "The early bird gets the worm", so goes the old proverb, but, this past Saturday, Ryan and I weren't going for worms (I could just hear his annoyance at such a stupid saying), we were embarking on a 45 minute road trip with a quick stop at Dunkin Donuts. Here's the thing, Dunkin Donuts makes donuts ALL DAY LONG. Oh sure, they want you to believe that their donut baker lumbers out of bed with the early bird while moaning, "Time to make the donuts" so you feel rushed to be the FIRST ones in line for the freshest, choice donut, but, it's all a scam. You can be the late bird and still score a tasty, trans fat and cream filled donut. 

Ryan was about as thrilled as I was with the early morning Saturday change in routine, so instead of telling him the "early bird gets the worm" (eyes roll), I told Ryan the early bird gets the choice donut. Yeah, I'm as big of a phony as the "time to make the donuts" guy. Ryan whined, complained and stumbled out of bed and refused to brush his teeth because it would "ruin" the taste of the coveted donuts (he popped in a piece of gum after the donuts which I know a dentist would not approve of as a toothbrush substitute). Before we headed out the door, I was ordered to fill Ryan's Thermos with Welch's Grape Juice because my boy's elephant memory, recalled that Dunkin Donuts does not have Welch's Grape Juice and that their orange juice has pulp in it (the horror). We early birds, were so early, Ryan and I even had time to go inside Dunkin Donuts and peruse the plethora of choices rather than risk a donut catastrophe at the drive thru. Once we recovered from the near meltdown that took place when my early bird spied the strawberry iced donuts being placed on the shelf after our order was placed, bagged and paid for (clearly when it was "time to make the donuts" the strawberry iced ones weren't at the top of the old, tired baker's list), we were on our way, to our real destination.
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Ryan loves a road trip, and I love having him in the passenger seat next to me (even though I stress a little because I know he is safer in the back, but, now that he is 12 and the law says he can ride up front, there is no going back...figuratively and literally). Quality time, just the two of us, enhanced with a little donut sugar high. I tried for a while to chit chat, but, after being grunted at numerous times, I gave up and was equally happy listening to my boy singing, scripting and laughing at whatever show he was watching inside his head. In that moment, I sort of related to that early bird and his successful worm hunt, although I was tired and longed for my leisurely breakfast while happily admiring Matthew McConaughey in a black tuxedo (sorry Matthew, the white was a little too Saturday Night Fever for me) in People, maybe getting up early, really did enable me to score the coveted worm.

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Although I was enjoying the morning, I didn't get out of bed early and leave the Oscar predictions in my latest People Magazine sitting on the kitchen table for Dunkin Donuts. Nope, our destination was a Music Festival at a local college for piano students. This was Ryan's first time attending so I had no idea what to expect and for a boy who likes a plan and struggles with "new", he didn't know what to expect either. Ryan's fabulous piano teacher had written out a schedule for him instructing him when to be where. First up on the list, was a workshop on the Progression of Left Hand Accompaniment Patterns. What? I made Ryan LOL, even though he shushed me with embarrassment, when I did my best Charlie Brown's teacher impersonation. I am completely illiterate when it comes to anything music, so this professor's "wah, wah, wah, wah, wah", was like a foreign language to me. I tried to pay attention, but, after Ryan moved two rows in front of me, not because I was such an embarrassment to him, but, because the professor told him to (although, I'm sure he was relieved to put some distance between himself and his musically inept mother), I found my mind start to wander. 

As I sat waiting for the workshop to end, I began to worry about Ryan's "adjudication" on his piano skills which would be next. Ryan would be judged on various piano playing skills while in a room...alone...without me. As my anxiety began to escalate, awaiting this so called, "adjudication", I couldn't help but recall a different type of adjudication that I regularly attended as a juvenile probation officer. Waiting for a judge to make a different kind of adjudication for a different kind of kid. As a juvenile probation officer, it was my job to provide testimony to the court about the juvenile who stood next to me. I couldn't help but compare my role as a mother whose job it was to protect, advocate and fight for my child being that much different, yet, I struggled with whether or not Ryan would object to my testimony or if the judge would find my testimony relevant. 

I wondered, if at this adjudication for my child, do I present the facts...all the facts, or do I let Ryan take the stand on his own without my testimony? Will Ryan incriminate himself when he doesn't make eye contact with the judge? Will the judge think Ryan is rude if he forgets to say, "thank you" or ignores a question the judge asks that has nothing to do with the piano? What if Ryan drops his paper and refuses to pick it up because he hates the feel of paper? Will the judge think Ryan is not taking his adjudication seriously? Will Ryan's flat out refusal to put on a name tag because stickers have caused him anxiety since he was two, make him appear defiant? If Ryan refuses to take his coat off because the hot air blowing from the vents makes his skin feel dry and scratchy, will the judge think Ryan has no respect for the Music Festival, the adjudication and the piano itself? There was a whole lot going on in my scary head for a 45 minute piano workshop. 
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This battle going in my psyche came to a standstill when I watched Ryan practice in a sound room minutes before his adjudication. It was then that I decided not to hang my kid out to dry (he would have assured me he was not wet). I decided that if I don't want a label to define Ryan, even when his quirks and social struggles make him stand out, then I can't define him with that label at every turn either. There are times when The A Word, has to be mentioned...at a 504 Plan Meeting with school officials, at the dentist office when they realize total sedation will be necessary to fill a cavity (or three), at the pediatrician's office when a strep test is necessary, or at the hair salon when it's a new stylist, but, not at a piano adjudication. This was not because I didn't want Ryan to do well. It was not because my lack of interest in music minimized the importance of music to my son. The reason I let Ryan take the stand on his own was because unlike those courtroom adjudications when my words were needed to describe the juvenile standing before me, my words were not needed before a judge in a sound room. Sharing words....sharing The A Word, was unnecessary because this was music and music is one place where Ryan's quirks and differences disappear into the ivory of the keys.

I wished Ryan luck, although I knew it was not necessary, and Ryan walked past me, piano books in hand, a smile on his face and no name tag whatsoever. As I heard the judge greet Ryan, Ryan mumbled a monotonic, "hello", then he quietly closed the door and left me to wait on the other side. This was new for me, being on the other side of the door, not being Ryan's voice. Although I trembled with nervous energy, I had never been more proud of my son. As I listened through the door, frustrated that I didn't bring a cup to hold against the door to enhance the sound (AWEnestly people, I can't cut the cord completely), I did not hear Ryan speak in his British accent scripting Stampylonghead in a diatribe about Minecraft, I did not hear Ryan stumble over his words with his sometimes "cluttered" speech and I did not hear Ryan complain about the heat blowing out of the vents. All this spying, worried mom heard, was the beautiful sound of Ryan's fingers finding the right chords, timing his intervals and "expanding the use of the keyboard" as Ryan's label, his quirks, his differences, dissipated with each beautifully played note.
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I all but fell into the room once Ryan finished and opened the door, and I quickly and discreetly wiped away my tears so Ryan wouldn't reprimand me for being "too proud". Ryan bounced out of the room and said, "That judge guy was AWEsome and he said I did great!". In fact, "that judge guy" gave Ryan the highest marks, "superior", in every category with the exception of one "excellent". Clearly, Ryan did not need my testimony, the facts of who he is and what he is capable of, were evident without any input from me. I did not need to share The A Word with the judge who adjudicated my son because he did not need words or a label to see Ryan's ability. There will always be times when Ryan's quirks will make me want to quickly defend him by throwing that A Word under the bus, but, more and more, Ryan doesn't need excuses, labels, or me defining him. Ryan is finding his own place in the world, and as he has told me time and time again, "I don't feel different, I just feel like me."

This is one early bird, who is so glad that my love of sleep, a late breakfast and a date with People Magazine did not cause me to miss the worm. Not because I wanted the fattest worm or the choice donut, but, because I got to spend a day with someone who constantly puts the AWE in AWEsome. Someone who will never let a label, a judge or even his mother, define him. Some days it takes me longer to wake up than others. This past Saturday, even with my donut sugar high, it took me all day to wake up, but, when I finally did, I realized that even a full page spread of Matthew McConaughey playing strategically placed bongos in People Magazine, takes a back seat to the wonderfully gifted piano player sitting in the front seat next to me. 

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Pampered, Inspired and Humbled

2/23/2014

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This is a quick shout out to all the strong, loving, AWEsome moms I met yesterday at the 2014 Day of Pampering at the First United Methodist Church of Mechanicsburg. So many women shared their heartache, their struggles, but, mostly, their joy with me. To quote the beloved Dr. Seuss, my "heart grew three sizes that day". I promised these AWE inspiring moms that I would post the video I shared yesterday since there was a bit of a technical glitch with the audio. I also promised that I would invite everyone in attendance to my house for a glitch free showing along with wine, but, due to my public speaking anxiety, I failed to give the audience my address. I swear, it had nothing to do with my fear of the bill for the wine I would have needed to purchase for these amazing ladies.

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I was AWEstruck by your compassion, strength and determination to make sure your intricate, one of a kind snowflake remains visible and that their uniqueness is never lost in the blanket of snow. Remember, even on the days when your snowflake seems invisible to everyone, YOU will always make sure he or she can be seen. "Stand up Mother!" because you are not invisible either. Your child sees you and so does every mother loving their unique snowflake with a "different" ability!

Here is the clip from the Emmys when Temple asked her mother, who believed, "different, not less" to "Stand up mother". Makes me cry EVERY SINGLE TIME.
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He Loves Me, He Loves Me Not, He LOVES Me!

2/13/2014

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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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    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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