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Step Away From the Hammer

4/26/2013

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Last night I was nauseous. You know, the light-headed dizzy, break out in a cold sweat nauseous. It wasn't a result of undercooked chicken (that NEVER happens in my house...only dried out, definitely killed all the salmonella chicken served here) or the stomach virus that is running rampant. Nope, it wasn't food poisoning or anything contagious, just an hour or so of middle school orientation for my Ryan. What?! How did we get here so fast? Wasn't is just yesterday that I offered the devil my soul if Ryan and I both survived kindergarten (he did survive and since the devil and I didn't shake on it I got my soul back...I hope)? Nope, that stupid thing we call "time" had transported my boy and I from kindergarten to middle school orientation in the blink of an eye.  As I was trying to keep my quesadillas in my stomach, there across the crowded auditorium I spotted my old BFF Denial hanging with the "in crowd" and suddenly I felt like time had transported me back to middle school. As I listened to the principal cheerily shout out words that made me tremble like "change", "organization" and (gulp) "independence" that all comes with being a middle schooler, I deperately wanted to plug my ears and run across the auditorium and sit with good old, reliable Denial again. Fortunately, I had one of my Bronze Star Medal wearing girlfriends sitting right next to me who would squeeze my arm every time I tried to stand up and join Denial and her cool friends.
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Yes, middle school is the pinnacle of trying to be the round peg sliding nicely and unnoticed into the round hole. My boy is super smart, super AWEnest, super lovable and super square. And I can tell you that regardless of how big the hammer is, my uniquely beautiful square peg will never fit in the super popular round hole. I should know because as much as it hurts to admit it, I have swung the hammer numerous times and I have the scars on my calloused hands to prove it.  When your child is "different" than most kids their age, it doesn't matter if they have a diagnosis or not, as a mom you worry, obsess, and go slightly mad wondering how this "difference" will effect him, how other kids will perceive his "difference" and if you are AWEnest, how his "difference" will effect you. Yes, regardless of how much more informed I am and how much I have grown and come to accept that autism is a small part of who my son is, I still want him to "fit in". Back in the day when my BFF Denial was not sitting across the auditorium with me, but was in fact sitting right next to me, I tried to "help" my square peg fit in the round hole of childhood. Oh, how I wish I had the super power of hindsight.

Almost every mother who lives within a 40 mile radius of our home registers their child for soccer as soon as their child is standing on his own two feet or at the very latest, upon entering kindergarten. Soccer, seemingly, has become a rite of passage in childhood. Well, I certainly didn't want Ryan to miss out on this rite as it may impact every avenue of adulthood. I didn't want Ryan to be "different" than all the other kindergartners. After all, Ryan watched his big brother play soccer and "he" (certainly not me) thought he might like it too. Well, this was one rite of passage we should have skipped.

I have two words for you. Shin guards. When you have a child who is resistant to change and has heightened sensory awareness and despises anything tight, strapping a pair of clunky, plastic shin guards on him was as horrifying to him as swabbing him with syrup and throwing some red ants his way. Then toss in the awkward, stiff cleats, high tight socks and never wore anything remotely close to it uniform top and voila, you get one whiny, fussing, miserable, could care less about soccer, soccer player! Ta-da! What the he** was I thinking?! Well, for one thing, Denial and her soccer star son were so cool and they both really seemed to love soccer, so surely Ryan would get use to the uniform and love it too, right? Fat chance.
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Once Ryan endured the battle of suiting up in his soccer issued uniform, then he was told to go run on a field with 10-14 other pushy, shovy, yelling kids all fighting for one soccer ball while a ref blew an ear splitting whistle. AWEnestly, I should have been arrested. Poor Ryan had no idea what was going on. He'd walk off the field when he was suppose to be playing, he'd run the wrong way and smile while thinking of Mario while he did it and he would cover his ears when the ref  blew the whistle. The other soccer star moms sitting with my friends Denial and Clueless would make rude remarks or roll their eyes when Ryan's performance wasn't as stellar as their olympic hopeful children. I hated every single one of them. I still see the biggest eye roller occasionally in the grocery store and I tell you it takes all my strength not to ram her with my cart. Then roll my eyes, of course. The soccer moms were certainly worthy of a good old fashion grocery cart ram, but it was the coach's reaction to a harmless mistake that will forever be emblazoned in my hammer banging, stupid mind and my terribly careless heart.

It often took bribery of the coveted halftime snack to get Ryan on the soccer field. I understand that there are plenty of neurotypical kids who are equally more interested in the snack then the game. One big difference for kids on the autism spectrum is that many of them have difficulty with sequencing and organization and if you have ever watched a soccer game, you know there is a lot of both. It was difficult for Ryan to remember what to do next. He didn't know if he was suppose to be on the field or on the sidelines, if he was suppose to defend the ball or steal it, if he was suppose to kick the ball in this goal or that goal and more importantly, if he didn't really care about soccer then why the heck was he there in the first place. For years, my little rule following literal boy was told not to shove, push or take other kids' toys. Now his lunatic parents were screaming, "Get him Ryan!" or "Take the ball RyRy!" and "Kick the ball directly at the rude, obnoxious soccer star mom's face!". Oh, wait, I'm sure I didn't scream that last one.
 
Following one very good first half of me screaming and Ryan trying his best, he scuttled off the field gloriously happy for his snack. You could see in his face he was pleased with his triumphant performance. No, he did not score a goal, but he stayed on the field AND ran in the right direction! After the halftime snack, Ryan happily trotted back on the field only to be told by the coach in a really frustrated, not so nice voice, "No RYAN, not YOU....go sit down!!". The happy face on my "trying so hard to be a soccer player" boy quickly went from joyful to crestfallen. I swear to you I will NEVER, EVER forget that confused, embarassed beautiful face as he stumbled off the field. I know the coach had no idea the damage he had done, any more than I did when I registered him for soccer, and it certainly was not intentional, but that still didn't keep me from wanting to sidekick a soccer ball at the coach's face. Poor Ryan, he finally got it right, only to be told he had it wrong. The final soccer straw came on a cold, bright, sunny, windy day. When the wind got too windy, the sun too sunny and the whistle too loud, my boy curled up in the fetal position on that soccer field with the game going on around him. I put down my hammer, folded up my soccer chair, picked my son up, wiped away our tears, and we never looked back. Game over. Well, until baseball rolled around in the spring.
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Somewhere between October and January I had forgotten about the hideous soccer season and picked up my hammer again and registered Ryan for baseball, only this time it really was his idea. Or at least that's how I remember it. Ryan loved going outside and playing baseball with Kyle so surely he would love organized Little League, right? Well, my super sensitive son loved the batting helmets almost as much as he loved the soccer shin guards and since baseball came in the springtime, guess what came with it? You got it, bugs. Ryan spent more time running from bugs than running bases. Many kids on the autism spectrum have low muscle tone and Ryan was no exception. His core is very weak so Ryan runs head first like a bull charging a matador. With Ryan's dislike of the helmet on his large melon, and with his awkward gate, he looked like a turtle running head first down the baseline. I remember the pediatrician chuckling when I, oh so proudly announced Ryan was playing baseball. With a bit of a snort and a smirk he said, "Whose idea was that yours or his?" Why it was Ryan's of course! Wasn't it? As I quietly slipped my hammer in my purse.

It has taken me years to hang that hammer up, but occasionally, like at middle school orientation, I am dying to take it down again. Most days I realize that my peg is more beautiful square than he would ever be round. He doesn't care if he runs the same way as the round peg next to him in gym class or if he is wearing the "right" clothes like all the round pegs in the cafeteria. Ryan doesn't need to be a soccer star, or make the varsity baseball team. He is a gifted musician with perfect pitch, he is a video game connoisseur and a mathematical whiz kid. Will all those gifts make my square peg "fit in" the round hole with all the popular round pegs? Probably not, however, as I creep on Facebook and see so many of the popular round pegs of high school, it is quite apparent that first of all, they now literally are "round" and that all too often those perfectly popular round pegs peaked in their coveted round hole in high school and remain stuck there today. However, some of the square pegs of high school kicked the round holes aside and made a square hole that fit them perfectly. Some work for NASA, some are erecting skyscrapers and some are holding the title of "First Chair Violinist" in various symphony orchestras. I am so grateful I stepped away from the hammer and that my son taught me to embrace his square shape. Ryan is happy with all his pointy corners and has no desire to ever be round and because of this, I believe the future is very bright for him.

It eases the pain in my heart when I read a book written by a teenager or an adult with an autism spectrum diagnosis who say they know their mom did the best job she could at trying to understand a child who was so different from herself. As a mother, you only want your child to be happy and it's difficult to accept that what makes "most" kids happy does not neccesarily make your child happy. Imagine if Beethoven's mom told him to stop perseverating on that "same song" and play something "different" or had Einstein's mother told him to put his pencil down and go play stickball like "all the other kids". We need our square pegs like Beethoven, Einstein and Ryan to make our world brighter, bigger and more stimulating. If all we had were round pegs sliding so easily into round holes, the world would be so very simple and tedious and all those round pegs would be indistinguishable. I have tried to retire my hammer (except for those moments when judgemental mothers cross my path) and I pray that while I was still running in the same circle with Denial that I didn't do much damage to my perfect square peg and that one day he will forgive me for lifting my hammer even once to try and change his beautiful shape.
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Guess which loom is Ryan's? I laughed so hard...I love it! My white loom goes with any decor.
"Autists are the ultimate square pegs and the problem with pounding a square peg into a round hole is not that the hammering is hard work.. It's that you are destroying the peg."
-Paul Collins
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The White Lie vs The White Padded Room

4/23/2013

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If you were fortunate (or cursed...depends on your experience) and able to build your home, you know it takes less than 72 hours of living in that new home before you start saying, "We should have done this." or "We should have done that.". There are many things about our home, 13 years later, that Dan and I would have done differently, but I never imagined that one day I would dream of a commercial grade toilet in the kids' bathroom. You know the kind of toilets they have in public restrooms at the mall or in a restaurant where you have to open the stall door to prepare your escape before flushing because the force of the flush sprays you (you are screwed if it's the automatic flush that senses when you exhale. This requires an immediate shower upon your return home). I want the kind of toilet that if a Prius could fit through the stall door, it would be sucked into oblivion. A girl can dream, can't she? It's sad that my dream is of installing a high powered toilet, but when you have a standard household toilet and a child who hates to "go #2" and holds "it" for days on end, I wind up "holding" a plunger in one hand and my nose with the other. During the potty training days, the plunger and the nose were replaced with a shot glass in one hand and a bottle of vodka in the other.
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Many kids on the autism spectrum have difficulty with toilet training and Ryan was no exception. The fact we both survived potty training relatively unscathed (and I use the word "relatively" loosely) is a miracle. For a kid like Ryan with sensory sensitivities, the bathroom and potty training can be overwhelming. The lights in the bathroom are often bright, the fan is loud, the bathroom is echoey, the potty is scary, the smell is bad (for most of us), the sensation of going may hurt or feel strange, the toilet paper is scratchy and dry and the disposable wipes are cold and wet. For kids who struggle with even minor changes in routine, putting "it" in the "loud, everything disappears that goes into it" potty is a BIG change in routine. Many children on the autism spectrum aren't ready for potty training until they are somewhat older, so they have spent years in diapers or pull ups which are much heavier and bulkier than cotton underwear. These kids are "use to" the feeling of a heavy diaper, so many children don't like the light sensation of cotton underwear regardless if their favorite superhero is smiling happily on their bum. Take it from me, when you are dumping poop (sorry, the word poop will be used frequently in this post) out of underwear and you see Buzz Lightyear smiling and seemingly laughing at you, Toy Story loses a little of it's magic.

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Ryan was literally terrified to poop on the potty. He would start crying, screaming and completely melting down the second you sat him on it. Once when I just happened to time it right and he actually did go, he started screaming "my insides are going to flush down the potty". Poor guy, to him surviving the loud, flushy potty was like a near death experience. It didn't matter if it was the kiddie potty or the big people potty, he was utterly terrified and "it" just wasn't going to happen. We used a potty chart as seen here, that the occupational therapists made for us. This chart gave step-by-step instructions on what to do. When he did one step, he would peel it off the velcro and stick it to the back of the chart. This helped Ryan break down the steps of potty training to try and ease his anxiety by showing him that there was an end to this horrific process and the reward for completing the process was video game time. He loved the chart and the Spongebob Gameboy reward time, but it still wasn't enough to convince him that the potty would not "destroy" him. We tried rewards, treats, extra TV and video game time. Nothing. We tried days with no pants at all, but the end result wound up in Kyle's closet...he wasn't pleased. At the time, Ryan was obsessed with Ice Age the movie, particularly Scrat, the prehistoric squirrel who spent the entire movie trying desperately to get an acorn always just out of his reach. I could relate. When I found Scrat underwear I felt the secret to potty training had been unlocked. Although Ryan would never wear any type of movie or television character on his shirt (he still won't today) he would allow them on his underwear. I have no idea why. I told Ryan if he pooped in his Scrat underwear we would have to throw them away and he did NOT want that to happen. When I shared my new strategy with Ryan's occupational therapist she told me, I was "thinking like an OT", so I gave myself a pat on the back...with the same hand that two days later was plunged back in the toilet cleaning underwear with Scrat smiling, holding his acorn and mocking me.

When rewards, charts and bribes didn't work, I resorted to the ugly, mean AWEful stuff. I yelled, I screamed, I threatened and if I'm being AWEnest, I even tried shaming Ryan. The irony of shaming a 6 year old boy by telling him that kids will tease him, call him names and that they won't want to be his friend because he smells stinky, really is not a motivator when this particular 6 year old boy couldn't give a rat's a** what anyone thinks of him. Shaming Ryan backfired in my guilt ridden face and I wound up feeling like crap (no pun intended), not him. You would think all the ear splitting yelling I did, while once again wiping up poop and flushing out underwear, would have caused Ryan to just sit on that potty and go so he could quickly escape the lunatic woman who vaguely resembled his mother. Ryan's fear of his mother slowly sinking into madness did not outweigh all the other sensations about pooping that he hated because sadly, autism had a firm grip on Ryan's brain in the world of potty training. After these ugly mom moments, I would call my girlfriend sobbing saying Ryan deserved a better mother than me and she would quickly enumerate all the things she would have said and done years ago had she been in my shoes...or should I say, in my bathroom. It eased my conscience a bit, but not much. My poor son was unable to help his fear and sensory overload, yet here I was his loving mother, whom he loved and trusted more than anyone yelling and crying like a mad woman.

As much as it broke my heart to watch Ryan have such fear over a "must do" bodily function, I also worried that Ryan would end up going to elementary school in pull ups and be teased relentlessly. Kids can be mean anyway, throw in a pull up on the sliding board and I might as well have placed a "Kick Me" sign on Ryan's back. I can happily say Ryan jumped on the bus and went off to kindergarten with big boy pants on because he decided to save his pooping accidents all for me. I understand that Ryan knows Mommy will love him regardless of how many times she has to throw away underwear because her Clorox raw skin couldn't handle one more toilet washing, but I really was ready to blow. Our pediatrican explained to me that Ryan's colon was so distended from holding his poop because he hated going so much, that the "accidents" were a result of leaking. AWEnestly, I didn't care what was causing it or what you called it, I just knew it stunk, literally, and figuratively, and I wanted it to stop. I swear to you, the smell was in my nostrils 24 hours a day and no perfume or hair product could make it go away. I truly considered huffing Febreeze, but of course my fear of causing brain damage outweighed the stench in my nostrils. I just couldn't understand how a child who hated to be messy or sticky didn't mind sitting in his own mess at all. I love my son, but I wondered if a mother had ever been committed to a mental health facility as a result of potty training trauma. I was convinced I would be the first.

Once, in an effort to put a stop to these accidents all together, we told Ryan (who was 7 at the time) if he had any more accidents we would throw the Nintendo Wii in the garbage. Talk about tough love. He loved that Will more than most people. Guess what? The Wii went into the trash (we quickly got it out after he went to bed...those things aren't cheap) the night before trash day. Ryan was horrified. He sobbed, screamed, and completely shut down. Both Ryan and I went to bed sobbing. Ryan for his lost Wii and me for my lost sanity. For most of two week, Ryan thought the garbage men took his Wii, until we finally returned it since losing the Wii had no impact on poopy accidents whatsoever. We consulted doctors, therapists, specialists and employed natural laxatives. Yes, in the battle between laxatives and autism, autism won. Truly unbelievable. You name it, we tried it. We even tried bribery with large ticket items like $50 video games, large amounts of cash, his favorite restaurants, vacations....all to no avail. I had reached my scrubbing underwear in the toilet limit, so there was nothing left to do but break out the big guns. The little white lie.

On Ryan's 8th, yes 8th birthday I looked that beautiful boy in the eye and lied my face off. Yep, I lied and AWEnestly, this time, I felt no guilt or shame, because in the end it worked and I was tired of cleaning up poop. I told my terrified of pooping boy, that "It is against the law to poop your pants after you are 8 years old." That was it. One sentence. I didn't say he would go to jail or the police would come because I didn't have to, my rule and law abiding son knew just what "breaking the law" meant and to this day, almost 4 years later, there have been no more accidents. Judge me if you will, but until you spend 5 years with your hands in the toilet washing underwear with the likes of Buzz Lightyear, Scrat and Spongebob smiling up at you, you have no idea.
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My girlfriend who thwarted my attempt to drown myself in the toilet during Ryan's potty training years, now lives most of the year in China where children wear splits in their pants to do their "duty" anywhere the mood strikes them. On sidewalks, in parks, in restaurants and stores. Disgusting? Yes. Horribly unsanitary? Of course. A hypochondriac's worst nighmare? Absolutely. But I bet those parents don't have to worry about their child wearing pull ups to kindergarten. And I bet those little children never fear their "insides coming out and getting flushed away" as the evidence of their "insides" lies fresh on the sidewalk just waiting for some unsuspecting texting teen to step in. Had my girlfriend been living in China during the dark potty training days, maybe my fear of poop and my fear of the pull up wearing social stigma, would have outweighed my fear of dying in a fiery plane crash and Ryan and I could have spent a few months potty training on the streets of Shanghai while taking in the sights.

Since I was unaware of the fashionable and functional split pants of the Chinese culture and applying for a passport to China to potty train did seem a bit drastic, I just did what every other mother who came before me when trying to potty train a child on the autism spectrum did. I hunkered down, battoned down the hatches and quickly added a new offense to the PA Crimes Code. Just like so many developmental milestones in Ryan's life, he figured out potty training on his own terms in his own time (with the help of a little birdie putting the fear of prison in his heart). So, until I get that commercial grade toilet installed, I will continue to plunge with a mixture of revulsion and pride. My boy may still hate what a "waste of time" "taking a dump" (his words, not mine) is, but his 20 minutes on the toilet while playing his iPod and singing away is a sign of yet one of the many hurdles we have overcome together with sweat, tears, curses and occasionally, the little white lie.
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Ryan's 8th birthday...the day "it" all came to an end. Hallejuah!
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Yeah, I'm One HOT Mom

4/19/2013

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For the families touched by autism, April is not much different than any other month on the calendar. We still scare away the bugs, cook the same foods and serve it on the same plate, grocery shop every Wednesday so we don't run out of Jello Vanilla Pudding (and promptly return it the next day when we are disparaged for buying "stupid sugar free pudding"...Jello needs to work on their packaging as sugar and sugar free look remarkably similar) and we check the weather every day to determine if silk shorts should be worn to school. Don't get me wrong, I'm grateful there is a month dedicated to raising awarness about autism because the more we talk about it, the greater the chance that people will try to understand more and judge less. Lack of understanding breeds ignorance and ignorance my friends can do irreparable damage.
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When families unaffected by autism hear the staggering rates of autism (1 in 88 children and 1 in 54 boys) they are shocked and concerned. If they are of child rearing age, the next question that arises is, what causes autism and how do I take precautions to reduce the risk of my child becoming autistic? Needless to say, there are numerous theories out there from genetics to various environmental factors to age of the father at time of conception. Some of these theories have been debated for years.

I believe we are closer to understanding the genetics behind autism, but there is still not one thing that scientists can point their finger at and say, "Oh yes, this is the cause of autism." There was a time though that "experts" did point their finger and AWEnestly, I wish someone would have jumped up and broke said "experts" pointing finger.

In the 1950's and throughout much of the 60's and 70's, the finger was pointed at the mother in the so called Refrigerator Mother Theory. Now, I'm no scientist, but even I can tell you that the Refrigerator Mother Theory is about as believable as Big Foot. Sorry, for all you Big Foot believers out there. Guess I should have given a spoiler alert warning

The Refrigerator Mother Theory was described by Leo Kanner when he observed that children with autistic tendencies had parents who showed very little warmth. Kanner was the first scientist to clearly define autism as we know it today and he was a leader in child psychology, so I'm sure Leo made a lot of significant contributions to this field and our understanding of autism, but sorry Leo, you really missed the mark on this one. Leo Kanner wrote a paper in 1949 describing what he believed to be a "lack of maternal warmth" from mothers of autistic children thus causing these children to "withdrawal and turn away" from such coldness "preferring to seek comfort in solitude". In a 1960 interview, Leo Kanner actually said, autistic children came from parents who "just happened to defrost long enough to produce a child".

Oh Leo, Leo, Leo (shaking my head), those were some pretty harsh words even for 1960. I'm trying to cut Leo some slack as I realize that today we know so much more about the inner workings of the brain than we did back in the 60's, but AWEnestly Leo, the mothers? What a cheap shot. 

Since Leo is no longer with us, I will try not to say the things my passionate heart feels and my truck driver mouth longs to scream from the roof tops, but wow, this dude really got it wrong and in the process of proclaiming such a horrible assumption, theory, hypothesis, a lot of wonderful mothers suffered needlessly. All I can think of is the guilt those poor mothers of the 50's, 60's and 70's endured. Not only did they have a child they could not understand, and did not fit the "norm", they were made to believe they were at fault. 

All mothers have guilt, it comes with the territory. In the hospital when they hand you this beautiful (ok, sometimes they aren't beautiful right away) baby, you also are given this 500 pound medal that you wear around your neck for as long as you roam the Earth, called guilt. No one tells you about maternal guilt in those perky, cheery childbirth classes. They only tell you once you hold your baby in your arms you will "forget about the pain of childbirth". I didn't forget. Liars.
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Initially autism was believed to by a type of schizophrenia, so the mothers of these children were often told to not only lock away their children in an institution (which many did since the so-called "experts" told them "it was for the best") they then spent most of their life feeling like their child's suffering was somehow their fault. Now, I avoided math and science like the plague throughout college, so I have no inkling about what may cause autism, but even a liberal arts girl like myself would question this theory especially if siblings raised by the same cold Refrigerator Mother were not autistic. I AWEnestly find it unbelievable that these so called "experts" could overlook such a huge variable. 

I wish someone, preferably the mother, would have wacked these "experts" on the head with their refrigerator door while serving them a cup of tea in their 1950's apron. The terrible, cruel irony is that autistic children often lack the ability of emotional reciprocity, but, instead of looking at the child, these doctors and scientists chose to point the finger at mom. After all, it was the 1950's, a mother's job was to raise happy, well-adjusted children. If that didn't happen, well of course it must be the mother's fault. We mother's should have shoulders the size of linebackers.

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Well, if these so called icy, cold mothers were refrigerators, then I am one HOT (not "HAWT" like Heidi Klum...sigh) commercial grade, industrial strength oven. My children are more likely to suffer from third degree burns than frostbite. To this day, both Ryan, 11 and Emma, 6 still don't go to sleep without their mama. Kyle finally stopped coming to my bed when he was 8 and moved up to the top bunk. I figured the fear of what may lie below the bunk was not worth the risk of getting out of bed. 

Why, you may wonder, do I play musical beds with children who can wipe their own bums, get their own ice cream and know their way around iTunes better than me? Because I was NEVER able to let my babies cry themselves to sleep. Nope, I just couldn't do it, regardless of how many times the pediatrician and my mother-in-law assured me they would be "just fine". I'm not judging anyone who used the old cry it out or Ferber Method, in fact on nights when I'm dying to watch True Blood, Girls, Game of Thrones or some other terribly inappropriate, adult only television show, I curse the day I didn't let those little buggers work out their tiny baby lungs. Sigh...I just couldn't do it.

As a baby, Ryan spent every night in my arms like a cuddly, chubby, sweet smelling teddy bear. Yes, I'm aware that some would argue that wasn't safe, but when you are a hypochondriac mother, all precautions are taken to ensure safety in the "family bed". No overstuffed pillows, no heavy blankets or comforters, no padded mattress covers, no wine buzz or Nyquil induced mother allowed, no loose fitting articles of clothing with strings, and sometimes no extra people allowed in the bed. Sorry, Dan. 

Yes, just like his brother who came before him and his sister who came after, Ryan was snuggled, cuddled, and loved to the point of me having dry, cracked, chapped lips for the first twelve months of his life from constantly kissing his sweet smelling, soft, peach fuzzy head. If one day a psychiatrist develops a theory that autism is caused by mothers who smother their children with love, kisses and snuggles which then forces the child to "withdrawal or turn away from" the overprotective, crazy in love, helicopter mother, well I would stand before judge and jury and plead "Guilty".

Yes, even at age 11, I lay down every night with my beautiful boy who wraps his arms around my neck and in his best Furbish accent orders, "tickle kah", or tickle please. This boy who demands hugs, loves and "snuggle time" and who pounces on me with an indignant proclamation of "I didn't get enough of this today" as he hugs me and tells me "I love my Mommy, I love my Mommy, I love my Mommy". This perfect boy never lacked warmth. Dan and I have never needed to be "defrosted". Ryan has known nothing, but warmth and love from the second he entered the world kicking, screaming, and angry. 

Refrigerator mother, my a**. I have no idea what causes autism, but using THE one person who would lay down her own life to offer her child a better one, well that was one hell of a scapegoat Leo. So since Leo isn't here to offer his deepest and humblest apologies to the mothers who spent their lives submerged in guilt and shame, I feel it is my duty to do so. As a mother who even today feels guilt and wonders, "what if", but has never once had a finger pointed at me blaming my lack of love, warmth or connection for my son's struggles, I offer my deepest most heart felt apologies.
 
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To the mothers of the 50's, 60's and 70's....I am sorry. I'm sorry that there wasn't more info on autism 50-60 years ago and that you took the fall. I'm sorry that instead of seeing strengths, "experts" only saw weaknesses. I'm sorry that instead of pride for your incredibly unique and loving child, you were made to feel shame. I'm sorry that occupational and speech therapy weren't considered as a means to help your child find his voice. I'm sorry you felt so lost and believed the "experts" when they told you your child couldn't properly be cared for in your home. I'm sorry that many of you didn't have the power or the upbringing to tell such an expert, most likely a man, that they were wrong and to stick the refrigerator mother label up their a**. 

I'm sorry your child couldn't scream, "I'm in here, help me!" even when you could see it in their eyes and believed it in your heart like only a mother could. I'm sorry that when you took a stand and shared your belief the experts dismissed you and called you "psychotic". I'm sorry there wasn't a time machine to transport you and your child 6 decades into the future where today there is more acceptance and understanding of your child's uniqueness. I'm just........sorry.

For all of us mothers parenting a child with autism today, we must yell louder, bang our fists harder, educate more and fight with more tenacity then ever before. First and foremost, for our children who deserve to feel safe, loved and accepted EXACTLY as they are. Secondly, for the mothers who came before us decades ago and didn't have the knowledge, power and resources that we have today. For those who believed the "experts" and insitutionalized their children and for the mothers who kept their children at home surrendering to the stigma and discrimination that so often came with such a choice. And finally, for the children of the Refrigerator Mothers who were often locked away, typically given up on and always lead to believe that different did in fact mean less.  

For the stifled voices of the past, the scared timid voices yet to come, we voices of the present must make our children be heard every month, not just in April. The image of my son being placed in an institution where electric shock therapy and restraints were the norm for someone who hated to be touched is enough to decimate my heart and put a fire in my soul and make me grow much, much HOTTER.

We are the HOT Mom's of the past, present and future and although we may be tired, frustrated and bruised from banging our head against the proverbial brick wall, we must forge on. We are NOT ice cold refrigerators, we are commercial grade ovens who give off more heat than the average GE household oven. This is because we are aware that all too often, our "kitchen" may be the only place our unique children feel such warmth in a world where 60 years later, differences are still misunderstood. Our warmth may be the difference between success and failure, acceptance and bigotry and this heat we burn may be the key for our children to be understood and not turned away. 

And although I would love to be Heidi Klum "HAWT", Heidi's heat will one day burn out as she ages (oh crap, sorry Heidi, no you aren't immune to aging. Guess I should have had another spoiler alert in here for you), just like the rest of us. The warmth and heat that make me HOT, and all the mothers like me, will burn forever and make a much bigger impact than the winner of America's Next Top Model.

So suck it Leo.
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Quick, someone get those poor children a heated blanket and warm saline solution. They are suffering from the effects of hypothermia from that terribly frigid mother.
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"Is that Gucci?"

4/16/2013

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We all know them, in fact we may be them. Folks that put a lot of stock in the labels attached to their shirts, the inside of their shoes, the butt of their jeans, the back of their car. Urban Dictionary (I LOVE Urban Dictionary) even has a label for people who love labels..."Label Whores". For those who are so impressed by labels but don't have the funds to sport the real thing, these aptly named, "Label Ho's" crawl into vans or sneak into back alleys to buy faux Louis Vuitton, Prada and Gucci praying that the local authorities don't raid the joint until their fake bag is safely tucked under their arm a block or two away.
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I admit it, I have been both a "Label Whore" and a "Label Ho". The real and the faux (OMG, I'm starting to sound like Dr. Seuss). At age 12, I had real Jordache Jeans I purchased, well, my parents purchased, on a trip to NYC. I thought these jeans would be the perfect thing to wear on the first day of Middle School to prove how hip and cool I was. Wrong. Instead of everyone loving me for my label jeans, they despised me wondering who in the he** I thought I was in my way too baggy, way too big, but had to buy them designer jeans. Today, I have decent clothes, but very few things Carrie Bradshaw would want to borrow. No Manolo Blahnik, Prada or Vintage Gucci. Once upon a time, Dan bought me a pair of expensive designer jeans because, well, everyone was wearing them. And just like Cinderella's dress after midnight, within a year those costly fairy tale jeans had holes in both knees from scrubbing my floors (ok, that floor scrubbing really is a fairy tale) and I didn't have a Fairy Godmother to wave her magic wand to patch them up. A few years later, a Kate Spade bag from Saks was a surprise Christmas gift. The real surprise came 48 hours later when the strap broke on this costly bag while my glued on "Label Ho" faux Louis bag sat in the corner of my closet mocking me in it's flawless pleather. Hmmm...? Maybe that label on the outside that everyone is meant to see really isn't what matters. Maybe what's more important is the label hidden deep within the seams that no one can see and is stamped with "Made in China."

Yes, we love our labels. We have labels for shoes, handbags, dresses, jeans and cars. We have cell phones with labels on them for which you can purchase a case that has another designer label prominently displayed. Or if your cell phone label is so important you can't bear to cover it up (the horror) you can buy a case with a hole cut out so that cell phone label is still visible for the world to see. Yep, we have labels for EVERYTHING...including people and sometimes it takes a designer handbag strap to break and slap you in the face to recognize there is more to labels than meets the eye (the eye wearing designer shades of course).

When I was a young 20 something juvenile probation officer I was going to save the world, or at the very least, the kids on my caseload. With every kid that was re-arrested or shot (yes, shot...drug dealers have a high probability of being shot), I felt like a failure. How could a fresh out of college, childless, white, middle class, country girl not be able to save the day for these mostly impoverished, inner-city, multi-racial kids? It didn't make sense.

With each juvenile's re-arrest came the initial police report detailing the new charges of my latest failure. Quickly following the police report came the psychological evaluation with what appeared to be the current vogue, flavor of the month label. Oppositional Defiant Disorder, Personality Disorder, Conduct Disorder, etc. One report with numerous labels sticks out in my mind quite vividly even today, 15 years later. The report was for a 12 year old boy who had molested a 4 year old girl. This boy's psych report had many labels, but the one that was missing was "monster". I read all those labels stuck on this boy by super smart people and I read the details of that awful police report written by the investigators who had interviewed the victim and I made up my mind before ever laying eyes on him. This kid was a lost cause and I was not looking forward to meeting him. When I heard the secure door to the detention center open for my first meeting with this boy, I prepared myself for a cyclop monster with snakes for hair, but there before me stood the cutest, politest, 12 year old boy I have ever had the privilege to meet. This child was not a monster, but a kid who was abused himself and ended up repeating a vicious, horrible cycle that he had been exposed to most of his childhood. Of course, this wasn't discovered until much later when he was in treatment, when people stopped worrying about the labels stuck on the outside and took the time to discover what was on the inside. 

Labels can be dangerous when placed in judgemental hands and I can AWEnestly say it sucks when you are on the other side of that label. When it's your kid with a label attached to his name while others make assumptions based on kids bearing a similar label they have seen before. I think this is called karma. With my background and experience you can imagine my reluctance to share Ryan's diagnosis. Just like my son is more than a number, he is more than a label. At the start of each school year, I met with Ryan's teacher and discussed his strengths, his weaknesses and what made him unique. I also shared his "label", but it was years before I handed over THE evaluation with the offical diagnosis school wide. I have no regrets. In fact, just two weeks ago, the EXACT reason I didn't share his report sat right next to me at Ryan's 504 Meeting.

A 504 Plan basically provides Ryan with accommodations in the classroom without the need of an Individualized Education Plan (IEP), thus keeping him from wearing yet another label, Special Education Student. One day he may need that label, but so far he has not. My first several 504 meetings I would cry as soon as I stepped into the conference room and I would cry pretty much throughout the entire meeting. Oh, how times have changed. In Ryan's most recent 504 update, I sat beside my former, young, inexperienced, change the world self and I wanted to slap me. Having never met my son, she quickly made assumptions based on his initial psychological evaluation, his 504 accommodations from years past and his PSSA scores and within 5 minutes this young, former version of myself quickly deduced Ryan should be re-evaluated "just in case" he would need the autistic support classroom next year? Hold the phone! Ryan has never needed anything more than some extra time with longer tests and some prompts in writing, he was meeting or exceeding 5th grade standards at the beginning of the school year and he is "mastering" or "developing proficiency with steady progress" on his report card (whatever happened to A's and B's?), but since the middle school has 35 kids in a class, let's just assume he is going to struggle and prepare to have him placed in the autism support classroom, I mean after all, he has the label, right? Not on my watch.

When my old BFF, Denial took a hike, I had her take Wussy Mom with her. I no longer cry at those meetings, like a mama bear, I protect, advocate and fight for my son and someone made the costly mistake of taking a stroll between this mama bear and my cub. With proclamations of wanting what was best for Ryan, a child she never met, this former version of myself drew conclusions and made wrongful assumptions faster than you can say Prada. Her actions spoke only of concerns for the teachers, not my son. She was the EXACT reason we waited to share Ryan's label and she reminded me that once again, as his mother, I did the right thing. This woman saw the Gucci label and she had already determined what that Gucci bag should look like. Well, guess what former self, Gucci bags come in all shapes and sizes, some have buckles and zippers, some are over the shoulder bags and some are clutch. Some are every day and some are red carpet only. The Gucci label does not make them all the same.
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I shouldn't be too hard on labels and those who love them. There are good things about labels. The green Mr Yuk labels make our kids aware of the poison that hides under our sink in pretty, colorful containers (of course these were on every possible toxin in my home). The label stuck on a fabulous pair of shoes that screams "Half Off" is a beautiful label to behold. And even the labels we give to people can be very beneficial. Many times these labels open the door for a child to get services that without a label, the child would continue to struggle alone. It truly is not the label itself that is dangerous, it's the people making assumptions, judgements and decisions based on the label alone. By only taking into account the label on the outside, you are missing the child who lies behind that label. I know my younger, former self who sat next to me at that meeting and mistakenly stepped between this mama bear and my cub did not wish any ill will for Ryan. In her defense, she was trying to help my son, but trying to "find" him on a piece of paper is like looking for a real, vintage Gucci bag in a back alley street vendor stand. By only seeing the label, you fail to see the boy. The boy who works so hard to write a fantasy paper even though he thinks fantasy is "utterly ridiculous and a waste of time", the boy whose math teacher writes on his report card, "he is a calming force in the classroom" and who "appreciates his insights", and the boy who is unique from every other boy who has come before him wearing the same label.

If we are going to continue to love our labels, then maybe with each label should come another label...a warning label, kind of like the Surgeon General puts on a pack of cigarettes. The designer Italian bag you paid a mint for should warn you it's not made in a cute boutique on the streets of Florence, but sent overseas to China where it is made in the same factory for the same price as the knock off bag sold at Target. Children wearing an autism spectrum label should have a warning label too, but not for the child, for the people assuming they know "this child" because they knew "that child". It could go something like this...."The autism spectrum label attached to this child may explain what you "see" on the outside, but failure to see past the label may cause blindness, ignorance and stupidity to the beholder." Just like the Gucci bag you envy and can easily spot by the "G" label prominently displayed on the front of the bag, from a distance you can't be certain if it's real or faux. You need to take a closer look to see what it is really made of. I am my son's warning label and I will continue to caution anyone involved in his life that he can't be found in a psych report, PSSA score, or an indecipherable report card. Take the time to know my son and other children like him. See past the label to the kind, compassionate, funny, unique boy who loves pudding, Mario video games and his family. Failing to heed this warning could be hazardous to your health because this mama bear may not have sharp claws and teeth, but she swings a faux Gucci bag like a champ and pleather is very unyielding when it smacks you upside the head.
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The only "A" label visible here is Aeropostale.
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Butterflies, Bees and Cicadas, Oh My

4/12/2013

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Spring is hands down my favorite season. After the grey, cold, dreary days of winter, feeling the warm sunshine on my face (after applying SPF 100, putting on a large sun hat and big Jackie O sunglasses to reduce my risk of skin cancer, of course) is like a new awakening. As someone who suffers greatly with seasonal affective disorder, along with many other mental health disorders, when spring arrives, I just feel....happier. Ryan loves many things about spring time too. He loves wearing his feel good silk shorts both inside the house and outside, he loves no coats, hats or mittens, he loves sitting on our front porch for popsicle sunsets, and he loves that Rita's Italian Ice has "FINALLY" opened. Unfortunately, spring is also a time of great anxiety for my super sensitive boy. When April showers bring May flowers, it's not the pilgrims that worry Ryan (by the way, he thought that old Mayflower joke was a "ridiculous pun"), it's the bugs that wake and rise up out of the ground along with those nectar filled May flowers. Yep, bugs are Public Enemy #1 and if they have wings, regardless of their size, stingability or gentleness, they are as ferocious and deadly as a pterodactyl. You can imagine my joy when I heard it was time for the 17 Year Cicadas to return to the East Coast. I have a sister in California...it's a real possibility....as long as she knows how to cook his Velveeta Shells and Cheese "just right" and serves them while they are "fresh".
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This could AWEnestly be the worst summer of Ryan's life...until 2030 that is (yes, he's done the math). For those of us who are not entomophobes, a big sciency word for bug haters, the thought of billions, yes, billions, that was not a typo, emerging up out of the ground is just down right horror film creepy. For my son, the King of Entomophobes, this could be life altering. According to one figure, when these creepy, red eyed guys pop up out of the ground (and by the way, Ryan will not care that this popping up thing is great for the soil), there will be approximately 1 million per acre. That equates to about 600-700,000 in our backyard alone. Wish Ryan well folks, you won't see him until about mid-October. Needless to say, the sheer volume of these bugs makes them loud...very loud. Some sciencey dude on The Today Show said this morning that the noise the males make (of course it's the males) equals 90-100 decibals. That noise level is comparable to a 1987 Bon Jovi and Cinderella concert (yeah, I was there wearing a scrunchie in my perm) and needless to say, Jon Bon Jovi is much, much more enjoyable to look at than these ugly critters. Insectophobia + 100 Decibals of BILLIONS of large cicadas = The 2013 Summer from Hell. Please start praying now.

Many kids, whether or not they have an autism spectrum diagnosis have anxieties. It could be the monsters in the closet, the stupid bullies, who will amount to nothing as adults, holding court in the school hallway or strangers lurking in the darkness. The difference is that kids on the spectrum may have trouble verbally communicating their anxieties so many of these fears manifest themselves in behavior or in physical symptoms. The irony of this is that a kid with autism may sing or recite (script) a funny, silly Spongebob episode in an anxious situation while wearing a huge smile. This "comfort zone" behavior is an autistic child's coping mechanism and although it does bring them some level of comfort and they may look happy, they are by no means "happy". Even for parents, who know their child better than anyone and can often sense their child's anxiousness, at times it's difficult to decipher the exact cause of the scripting, hand flapping or spinning. This is both heartbreaking and frustrating.
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Needless to say, I have always been aware of Ryan's bug fear, most of the time his anxiety is apparent. For example, when your child prefers to risk oncoming traffic on a busy city street versus the slight chance that the small flying insect that just blew past may land on him, it is obvious this is really a genuine fear. Or when he asks me to carry all 92 pounds of him up our front sidewalk, regardless of who is looking and the condition of my old lady back, in order to protect him from the gnats that fly around our bushes I literally feel his fear. When you get a lecture from your child that makes you feel horrible shame because you forgot to open the garage door the minute the temperature reaches 50 degrees or higher in order to avoid said bushes on front sidewalk, you know this fear may be reaching phobic proportions. When he looks out every window where there is a flowering plant to check the bee activity before deciding which door is safest to exist from (it is always the garage where the car is parked INSIDE) and when landscaping around your pool and playground you must take into account when and if the plants flower, one would think the degree of anxiety that a butterfly, wasp, or stinkbug brings upon my boy would finally sting me in the face. Nope, it took a can't be seen with the human eye stomach bug to make me realize just how serious this fear had become.  

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A few years ago poor Kyle got hit with a stomach bug on Christmas morning, every kid's worse nightmare (well, every hypochondriac kid's). Ryan stopped using the downstairs bathroom where Kyle threw up so I assumed it was a germ phob thing. I kept reassuring him days, week, months later that the germs were gone. I showed him the Lysol can and the Clorox Wipes that proclaimed their ability to kill 99% of bacteria and viruses that cause illness, to no avail. I'm not kidding you, he did not use that downstairs bathroom for well over a year. I finally gave up, after all we have three other bathrooms so if he needed to run up a flight of stairs in an emergency not only would it provide him with much needed exercise, it would enhance his bowel and bladder control. Finally, after over a year I once again reminded him that the germs were long gone and it was totally safe to use the bathroom. "It's not safe to use that bathroom until you get that stupid plant out of there!" Hello, what? "That stupid plant that gets flowers on it and attracts killer bees." AWEnestly, I was speechless. It wasn't the stomach bug after all, it was the Christmas Cactus that gets flowers on it....when? You guessed it, at Christmas time, the same time of year when Kyle was hanging his head in the bowl right next to the plant. I didn't even know where to begin. Trying to recognize that although Ryan loves me to the sun and back, I am just a dumb, old mom with no real knowledge of anything besides how to microwave a meatless cheeseburgers for 15 seconds, so I knew anything I told him would be ignored. So we consulted good ole Wiki and discovered lo and behold no "killer bees" sticking around for the holidays in the Northeast so chances were good he would survive a quick potty break with the plant. He peed in the bathroom the next week.

We have tried many different avenues to help Ryan with his insectophobia. He worked with a therapist for awhile to work on bugs and weather. It may have helped some, but cognitive behavioral therapy is designed to basically change the way a person thinks about whatever it is that is causing their distress, therefore, changing their behavior or reaction to the trigger. When autism has a hold on a child's brain it makes this type of therapy more challenging. So then I tried to think like Ryan who sees the world in pictures and loves numbers. We pulled up the calculator on my phone and figured out how many days I have been alive (approximately 16,000...how depressing it that?) and then I told him in all of those 16,000 days I have only been stung three times so the probability of him getting stung every time he steps foot outside is really, really low. Of course, my husband quickly points out that there is a direct correlation between how little time I spend outside and the number of bee stings I have had in my life. Apple. Tree. By the way, bees do occasionally happen to buzz by our porch where I sit sipping margaritas and reading People Magazine. Regardless if I was an optimal candidate for the bee sting analogy, it didn't work. Ryan's bug fear is pervasive and at times, consuming and although it seems extreme to you and me, to him it's as real as the stranger in the shadows.
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These extreme examples are what goes on inside my beautiful boy's head on a regular basis. You can see why the thought of 600,000 cicadas coming up out of his backyard might feel like a scene from Amityville Horror to Ryan and why as his mother the thought of shipping him off to California for 4-6 weeks has crossed my mind. Getting him on a "deadly plane" might actually be easier than the ensuing battle that will take place between Ryan and his father over keeping the windows open on a beautiful summer night. If the decibals of the cicadas really resembles a rock concert Ryan is not going to start headbanging and dancing, he is going to lock himself in the mostly windowless, underground (where these stupid bugs came from in the first place) basement. And of course, I won't send him to California or anywhere for that matter regardless of how tempting that may be. As his mama, just like it's my job to assure him that there are no monsters under the bed or strangers in the bushes, it is my job to repeatedly show him websites that assure him cicadas aren't killer, deadly,or toxic. It is my job to mark off the days on the calendar until the billions of cicadas go back under ground leaving only their dried up carcass shells as proof they were here and ruined our summer. And just like it is my job to always provide a "squeezy tight" when the fear of all those bugs, bullys, strangers, tornadoes, or whatever, gets to be too much. I love my job.

Yes, I will certainly earn my bug slayer award this summer. When Ryan goes with all the fifth graders on a two day field trip to an OUTDOOR camp, I will be right beside him wearing my bee keeper's suit and standing guard with my butterfly net. If we happen to be outside when hundreds of thousands of cicadas start popping up out of the ground I will try not to run screaming into the house leaving Ryan and Emma alone on the swings. And although I know I won't always be standing beside Ryan to shoo away the stinkbugs, bumblebees and bullies, hopefully my love that encircles his heart will act as a protective barrier to all the things that go bump in the night and buzz in the day. Regardless of how scary, loud and confusing the world is, Ryan knows there is one place he is always safe from harm and he jumps into that place every day after school when he bounds through the door...the garage door, of course, if the temperature is hovering around 50 degrees.

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The bug evacuation route, aka, the driveway. When the cicadas come, I will be using it too.
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THE F Word

4/8/2013

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I have a very "colorful" language. My family can tell you, my friends can tell you, the dumb a** who cuts me off then proceeds to slow down immediately can tell you and sadly, my children can tell you. I'm sure I should feel terribly guilty about that, but AWEnestly I don't. There are some things as an adult you have earned the right to do. After all, we have to have some things that we are entitled to still claim as our own. Things that separate us from our children. They take over the bed, they eat the last Oreo (and leave the empty bag in the pantry to taunt me), they get most of the paycheck and they fill up the DVR with endless episodes of Spongebob, Olivia, and Avatar, which by the way they have watched 50 times. So, during the week, okay fine, the two weeks, when perimenopausal PMS takes over my body and soul and my language is a colorful as a bowl of Fruity Pebbles, I rarely feel shame. I think it's only fair that my repertoire of colorful language is mine and only mine...until they become teenagers and take that from me too.

When we were told of Ryan's autism spectrum diagnosis, I had days of crying "Why him?", "Why us?". Following my sobbing days came my angry days and along with that anger came many colorful words. Which was why it was so shocking to me that the mother of all bad words did not flow from my truck driver mouth, but from the mouth of the wonderful, fabulous psychologist. Yep, she said it....THE F Word.......FRIEND. I will pause a moment while you recover from the shock. Believe it or not, when your child has an autism spectrum diagnosis, the word FRIEND (or any derivative of the word such as friendship, best friends, friends forever, BFF, etc) is as vulgar as that F word that rhymes with duck.
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We were told that Ryan was bright, sweet and very high functioning, but chances were good that he would never cheer, "Woohoo, I love friends". As someone who not only uses a megaphone to cheer, "Woohoo I love friends", but does a back handspring and a herkie when it's time for a girls night out, I could not fathom my son never cheering THE F Word. THE F Word wasn't the least bit vulgar to Ryan, but it became a very dirty word for me.

The way autism effects the brain, makes communicating and interacting with people difficult. Since many kids on the autism spectrum have difficulty expressing and understanding language, learning the subtle rules and nuances of games and play makes forming friendships hard. Making and maintaining friends is a struggle. When making friends, almost all of us gravitate towards friends who have similar interests. For someone on the autism spectrum, this is a necessity. Some kids on the autism spectrum become experts in their area of interest so they may talk a friend's ear off about said interest, but often the interests are not common among most neurotypical kids their age. In addition, there is usually very little give and take in the conversation, it's more like they talk "at you" (my husband accuses me of this with great regularity, if it weren't for my pom pom cheering of "I love friends", I could be suspect for being on the spectrum too). However, for a kid like my Ryan, who struggles with idle chit chat, finding a shared topic of interest is the only thing that makes him the least bit interested in a (whisper) friend. If left to him, he would almost always prefer to be alone.

I'm pretty certain THE F Word has caused me more heartache than Ryan. For example, field trips are AWEnestly a form of torture for me. Yes, I no longer share the back seat of the bus with my friend Denial, but for someone who places friendship right up there with new shoes, field trip is another vulgar F Word. On field trips, there is not the day to day routine of the classroom which Ryan thrives in, but it is more of a fun, social time. Rarely does an 11 year old boy happily jump in the bus seat to sit next to his mother when surrounded by much cooler classmates. My boy not only jumps in next to me, he smiles from ear to ear as happy as Mario riding on Yoshi's back. The other moms all sit together, familiar with one another as their children are fri***ds. In some ways it fills my heart with joy that I bring such happiness and comfort to my son, but in other ways I want him to ignore me completely and jump in a seat next to some other video game addicted child. Ryan isn't completely ignored by the other children, but very few kids come up to chat with him. Being the nutso, whack job mother that I am, on one field trip I decided to keep track of who all spoke to him. BIG. MISTAKE. Not one child uttered a single word to my wonderful boy in 5 hours. As I tried to hold back the tears and the OTHER F Word as I cursed autism, Ryan asked if he could check out the weather app on my phone to see if the rain would subside before we went outside to check out the Native American Wigwams. He didn't even notice that he was ignored. I believe that Ryan has ignored his fellow classmates for so long that they have stopped trying.
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Just in recent months I have noticed a change in Ryan in regards to THE F Word. Ryan has had one friend for many years. Friend #1 is great because he loves video games as much as Ryan. Of course that is the ONLY thing Ryan wants to do with his friend unless we go bowling, mini golfing or to an arcade (and God bless his friend if he beats Ryan in any of the above activities). I remember once Ryan asked if I knew Friend #1's phone number. I high jumped the couch and knocked over the lamp in an effort to get to the phone. "OMG, he's not autistic, he wants to call a (insert 6 letter F Word here)"! I dialed the number and quickly reminded him of his phone manners only to realize he had never talked on the phone to a friend so he had no idea what phone manners I was referring to. He asked for Friend #1 then promptly told him all he needed from him was information on how to get to the next level of the latest Mario game he was obsessed with. Sigh. Well, while he didn't ask him to sit by him at lunch the next day, he at least learned a valuable lesson in friendship. Sometimes a friend knows a secret game cheat that you don't thus making that friend highly valuable. Friend #1 has stuck by Ryan through the years even though I'm sure Ryan has ignored him more times than he has acknowledged him.

In the past few months, a new bond has formed with a kind, big hearted boy in Ryan's class. Friend #2 has evoked changes in my son. Although Ryan has acknowledged to his wonderful speech and language therapist that he "doesn't know how to show interest in other people", it appears he is trying. About three weeks ago while Ryan was eating breakfast before school he said, "Guess what today is?". I wracked my brain for holidays, lunch menu items, new episodes of Spongebob or if an impending weather event was on it's way. These are typically the few things Ryan shares with me. You can imagine my joyous shock when he said, "MY FRIEND, Friend #2 has his book report presentation today." WHAT?! Not only did he remember Friend #2's name, he knew what day Friend #2 had his presentation (and it wasn't on the same day as Ryan's thus making it easy for him to recall) AND he shared it with me. That has never, ever happened before. Ryan said THE F Word and I couldn't have been happier or more proud. In fact, I wanted to hear him say it again and again!!

Yes, slowly, but surely, Ryan is embracing the idea of a friend, but he still has a lot of catching up to do. On a bowling outing with Friend #2, Ryan asked Friend #2 if he had ever watched the show Gumball. When Friend #2 asked Ryan if that was his favorite show Ryan responded with, "I'm sorry but I don't share personal information." While laughing and trying not to wreck the car, I was grateful for that moment and even more grateful when they came back to the house to play video games and really seemed to enjoy each other's company. In fact, when I went to check on them and saw Friend #2 kicked back on the top bunk with the Wii U controller in hand while Ryan was on the floor with the other controller, it looked so "natural" that I descended the steps in tears.

Maybe in time, when Ryan realizes Friend #2 is as safe and trustworthy as Kyle and Emma and when he discovers that Friend #2 won't tease him when he repeats The Angry Bird's Pig noise over and over again, or care if Ryan doesn't like showering on weekends, maybe then Ryan will share "personal information" with Friend #2. Perhaps one day THE F Word will mean as much to Ryan as The P Word...Pudding, or at the very least find someone he trusts enough to share his pudding with. In the mean time, his friend cheerleading mother must accept that THE F Word is not a vulgar word to anyone in my house, but me. The only F Word Ryan recognizes as a swear word is that F Word that rhymes with duck (fart has been acceptable in my home for years...big surprise). Yes, THE six letter dirty F Word is mine and only mine just like that last son of a *@#@**## Oreo was suppose to be mine too.  I would love for Ryan to one day just do a small toe touch jump when he mentions the word FRIEND, however, I am slowly beginning to recognize that although he may prefer to be alone, rarely is he ever lonely.

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Ryan's best friends are his siblings. It would appear he is open to having one or two more.
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He is More Than 1 in 54

4/5/2013

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When the CDC released it's most recent statistics on autism, 1 in 88 children and 1 in 54 boys, people were shocked. That is an increase in 23% since 2006 and a 78% increase since 2002. Since the CDC starting tracking the rates of autism in 1992, the prevalence of autism has doubled. Why do the autism rates keep increasing? Are we just diagnosing more kids on the low end of the autism spectrum? Kids that when we were in high school were not given an autism label, but instead wore labels such as "geek", "nerd", "loner" or "weirdo". Is an increase in awareness causing an increase in autism rates? Or is it something more ominous like toxins in our environment? Are the same pollutants, toxins, etc that are causing the polar ice caps to melt, causing our children to struggle in areas such as verbal and non-verbal language, social interaction and sensory processing?  AWEnestly, I have no idea. I can't even help my kids with math once they get passed the third grade so chances are VERY good I will not discover the cause or the cure for autism.

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As a math deficient mom with a 1 in 54 boy, what I can tell you is my son is so much more than a number. He is love, he is smiles, he is giggles. He is back tickles and hand holding. He is a snugly boy wrapped in a soft, fleece Mario blanket. He is a little boy approaching adolescense. He is an 11 year old who grumbles like a 90 year old curmudgeon. He is warm morning breath whose arms fit perfectly around me every single morning. He is a connoisseur of hamburger buns, the "good ones", the "hard ones", the "gooey ones", the "grainy ones" and the "gross ones". He is anxious. He is angry. He is a video game addict who has entered and mastered every one of Mario's world. He is quiet. He ignores you. He is painfully AWEnest, but he never intends to hurt you. He is an unexpected hug. He is unlimited love. He is an uproariously funny kid, who often does not get jokes. He is a comedian who will never take the stage. He is music with a gift from God, but he may never share it. He is a rule follower. He is beautiful inside and out. He is gorgeous, thick hair, and he hates brushing it. He is an apple who didn't fall far from the tree he loves so much. He is a victim. He is bullied. He is a friend to a chosen few. He is anti-dentist, anti-doctor and anti-anything he perceives as remotely dangerous (from tongue depressors to butterflies) . He is a bug hater of all kinds and does not discriminate. He is routine. He is a loner often by choice, but sometimes by necessity. He is tagless, soft cotton Hollister tshirts and silk shorts. He is a brother who loves, laughs and fights. He is a lover of pudding and anything cinnamon. He is a budding meterologist. He is part fish. He is a GPS, a calculator, and a calendar. He is a photographic memory except for people's names. He is success. He is struggles. He is an alien trying to adapt to an uninhabitable planet. He is a son that loves his mother to the sun and back. He is joy. He is lost. He is pride. He is empathy. He is irreplaceable. He is perfect. He is mine.

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So during this month of Autism Awareness when you will hear so much about the numbers, keep in mind that  behind every number is a beautiful face, an enormous heart and an innocent soul. These "numbers" have parents who love them, fight for them, advocate for them and try to make the world understand "different, not less". And if I were to give you just one piece of advice when it comes to understanding the numbers of autism it would be this, if you know one child with autism, then you know ONE child with autism.  Each child just as unique as you and me. To the CDC, my son may be number 10, 42 or 54, but to me he is the hand that I hold, the smile that blows the clouds away, the joy that fills my soul and the rare, colorful gem found in a world full of common, colorless pebbles gifted to me.  He is not a number, he is my heart. He is Ryan.

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What Autism Looks Like

4/2/2013

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Today is World Autism Awareness Day. Light It Up Blue is a campaign started by Autism Speaks to raise awareness for the thousands of children and adults living with autism. Over 90 countries, 750 cities, on 7 continents will light up approximately 7,000 landmarks with blue lights to do their part to raise awareness of autism spectrum disorders which effects 1 in 88 children and 1 in 54 boys. Those numbers are staggering. Autism does not discriminate by race, culture, ethnicity, or socioeconomic status. Obviously, little ole me can't compete with Autism Speaks so I have spent weeks trying to figure out a small role I can play to honor my son and others living with autism. I decided that rather than rattle on about statistics, causes, treatment, etc, I would instead show you what autism looks like in my family.

Some different-abilties are more obvious than others. For example, a child with Down Syndrome has a distinct look so you can "see" their different-ability, however, many kids with autism look like every other neurotypical child you pass by in the mall, the grocery store, or in the school hallway. This is why, when a child with autism is next to your table in a restaurant and they are melting down because their french fries touched their hot dog or because they don't have the bendy straws like they use at home, or the real melt down trigger, their sandwich is cut into rectangles and not triangles, people are quick to judge. These kids, so often misunderstood, "look" like a child with horrible behavior and that's why the parents sitting in the next booth over "tsk, tsk" and  wonder why in the world those parents don't reign in that child's behavior.

So try and keep these statistics in mind the next time you witness what you believe is an undisciplined child's tantrum as you cruise through the mall. That child may be so overwhelmed by the blinding fluorescent lights, the horrific smells of the food court, the 20 different conversations he or she is processing and the overwhelmingly painful sensation of the new shoes he is wearing that "melting down" may be the only way that child can express himself. So instead of judging that mother, give her an encouraging smile that lets her know you "get it", even though you don't, and if you happen to have a flask in your handbag, feel free to share it with her.

Children and adults living with autism often "see" the world in pictures, so in honor of all of them today, here are  pictures of what autism "looks" like to me...
"You all laugh because I am different. I laugh because you are all the same"
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PDD-NO WHAT?

4/1/2013

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For four years I had worried, obsessed, fretted and perseverated. AWEnestly, it was almost as likely that this wonderful psychologist would give me a diagnosis as well as Ryan. I assure you, there are probably several diagnoses in the DSM-IV that would fit this neurotic mother. So here it was, today was the day. I wish you could have been in my head, of course if you had been I would probably be typing this from a psych hospital. In the moments it took for me to cross the psychologists office, sit in a chair and wait for her to speak, my brain went from one extreme to the next. Assuring myself Ryan was fine and this was all a mistake to telling myself if she says the words group home I'm jumping out the window (knowing full well that only two stories up the chance of sudden death were minimal). So with hands trembling, stomach gurgling and eyes desperately trying to hold back the tears, I waited for her to speak. I'm sure my fear was palpable.

This kind, wonderful mom psychologist looked at me and said, "Remember, regardless of what we discuss today, Ryan is the same little boy he was before you walked into my office." And so the tears began. That did not sound like a disclaimer you make before saying, "your son is smart, fabulous and completely normal and he has a bright, happy future in front of him". You see, I was hoping along with all the other wonderful qualities of this fabulous psychologist, we could also add fortune teller. She discussed Ryan's testing and what the tests and her perception pointed toward. I braced myself, white knuckling the edge of the seat.  This was it, THE moment. While trying not to vomit, I never took my eyes off her mouth as I waited for her lips to form the A sound and say one of the two A words I had been obsessing over for two years, Autism or Aspergers, but the A sound never came. Instead the psychologist pursed her lips and a distinct "puh" sound came out of her mouth as she said...Pervasive Developmental Disorder Not Otherwised Specified, more typically known as PDD-NOS. PDD-NO what?!

Wow! There were certainly a lot of letter sounds that came out of her mouth, but I distinctly did NOT hear an A. Part of me was rejoicing, in my head I was singing, "She didn't say The A Word, she didn't say The A Word.", but the other part was going, "Whoa, stop singing, since you have no idea what this P Word means." Was the P Word better than The A Word? Was it worse? Can we "fix" it? Oh, how naive, scared and quite AWEnestly, stupid I was back then.

The pyschologist explained in her kind, sweet manner that autism is a Pervasive Develpmental Disorder. In order to make a diagnosis for Autism or Aspergers, certain criteria must be met. According to the Diagnostic and Statistical Manual of Mental Disorders IVth Edition (DSM-IV), "when there is impairment in the development of reciprocal social interactions or verbal and non-verbal communication skills, or when stereotyped behaviors, interests and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder such as Classic Autism or Aspergers, then a diagnosis of PDD-NOS is used. PDD-NOS is often referred to as atypical autism.
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Well, this certainly explains why for years other professionals weren't certain if Ryan actually had autism or not. He did not "present" as a stereotypical child with Classic Autism or Aspergers. I cried...a lot and the psychologist tried to comfort me by saying how bright, sweet and wonderful Ryan was and with the right support from us and other professionals, he would be just fine. We thanked her and she told us to call if we had any questions (Big Mistake. Poor woman, she should have changed her name, phone number and the location of her office after uttering those words to a whacko like me) then Dan held me in the parking lot as I cried big, ugly tears. We got home and one of my medal wearing girlfriends who was watching the boys for us, took one look at me, pulled me into her arms and assured me that no matter what you call "it", Ryan would be great because he has me for a mother. Those words weren't very reassuring at the time since I felt very sure I was coming completely unglued and just like Humpty Dumpty, I feared all the kings horses and all the kings men couldn't put me back together again. How could my girlfriend know Ryan would be "ok"? How could anyone? As I looked at my sweet, beautiful boy playing with his Thomas engines, I feared an uncertain future for him.

The psychologist warned us, ok fine, she warned me (she is a pychologist after all so it didn't take her long to figure out I was a nut) not to go home and immediately Google PDD-NOS because it could be very discouraging since many kids with this diagnosis are low functioning cognitively and although Ryan's verbal IQ was low, his non-verbal IQ put him in the high range of intelligence. With Ryan's language difficulty and his need to ALWAYS be right, some of the testing did not accurately match his intellectual ability. The psychologist gave us an example. During the testing, she asked Ryan what a clock was. I chuckled to myself, thinking this had to be a no brainer for him since he has been telling time since he was three. The psychologist informed us she was amazed by his response. Ryan knew perfectly well what a clock was, and his brain could see a picture of a clock, but his brain could not find the words to describe it, so he looked at her and said, "Can I draw it for you?" The psychologist told us she had never had a child do this before. To her it indicated that Ryan (and I'm sure many kids on the spectrum like him) absolutely knew what a clock was, however, he just didn't have the ability to tell her.

Of course being the neurotic mother that I am, I completely ignored the psychologists warning and promptly Googled PDD-NOS. Sh**! She was right. I should have thrown the computer out the window to avoid my uncontrollable, crazy mind. I saw words like, "severe language deficits", "significant social impairment", and "uneven skill development" and began freaking out. Then I did what any other internet saavy hypochondriac does, I looked until I found words more appealing and comforting to me like "mild", "high functioning" and "subthreshold autism" which made me sigh a little relief, so I quickly turned off the computer and walked away before my OCD fingers kept surfing.

As a parent, when you are told your child has an autism spectrum diagnosis of any kind, it takes time to process it, understand it, and let the reality of it sink in. Throw in a little neurosis, hypochondria and OCD, and as mother, it took me a little longer. They say hindsight is 20/20. What I wouldn't give to have that 20/20 hindsight while sitting in that chair of that wonderful psychologist's office (by the way, she did not move her office, she did however, move her home, which I promise had nothing to do with me and my concerns and questions...at least I don't think so). If I only would have known that this PDD-NOS diagnosis was not as much of a curse for my son, as it was a new way of seeing the world for his mother. My boy did not need "fixed" because he was not broken. Yes, he will struggle in the areas of making and keeping friends and chances are he will never care who the homecoming king and queen are, but the way he sees the world is a gift. Ryan does not lie, he does not cheat, he speaks what is on his mind (oh, does he ever) and his heart feels more than any person reading this blog.

Before stepping into that psychologists office that fateful day, I was unaware of the Autism puzzle piece, the blue lights that light up cities all over the world to raise awareness of this condition that effects 1 in 88 children and I had no idea that April meant anything more than warm, spring days. Today, however, I am all too aware. April is Autism Awareness Month and now that I have left my old friends Denial and Clueless behind, I wonder if April was chosen for a reason or if it was just some government agency's random choice to pick April to raise awareness of these amazing children and adults living with autism.

I like to think April was chosen for a reason. After the dormancy of a long, dreary, dark winter, April is often when you see the first transformations of springtime. The days are warmer, brighter and longer. April is a time of renewal and awakening. The flowers that wilted in the fall bloom once again and the leaves we saw fall to the ground are transformed into beautiful blossoms. It is a time for rebirth, the fuzzy caterpillar who once only crawled along the ground breaks out of the chrysalis transformed into a beautiful butterfly soaring through the trees. After spending weeks in their mother's nest, the baby birds test their wings and leave the nest for a new beginning. The local gyms are filled with women trying to transform their bodies, that packed on too many holiday cookies, for bikini season (myself included) and our neighborhoods, which just a month ago looked desolate, are filled with the sounds of children laughing and playing while the smell of grilling red meat lingers in the air.

Yes, April is the perfect time to recognize and transform our way of thinking when it comes to boys and girls, men and woman living with autism. For decades those affected by autism were locked in darkness, often placed in institutions and feared by a world that didn't understand them. Parents were often told their child's autism was caused by poor parenting and there was nothing they could do to help them. We have a come a long way since then, but we still have a long way to go.  April is a perfect time for us neurotypicals to try and view the world in a new way. As a mother who appreciates and applauds this month, I know better than anyone that until you open your heart and your mind and see the world like someone with autism does, you are missing out and AWEnestly, I feel sorry for you. So, on this first day of Autism Awareness Month, I want to take a moment to thank Ryan. My AWEsome son has opened my heart and my mind to a beautiful way of seeing the world that I never would have known had I not been blessed with him. What a gift he has given me! A once worried, nusty mom who sat wringing her hands in a psychologist's office finally stopped asking, "Will he....?" and started cheering, "He will!!"  And with my own transformation, I have been blessed to witness first hand how a scared, confused, anxious caterpillar broke out of his confined chrysalis and transformed into a beautiful butterfly soaring to heights I feared weren't possible. So take a minute this month to recognize kids like my Ryan and above all always remember...."Different, but not less."
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A mom who has been transformed to finally see the AWEsome world Ryan has shown me.
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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 
    before
    spelling AWEtism.

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