Category: Autism Awareness

#TBT

5/29/2014

I try to be a "cool" mom, you know, a loving mom who does just the right amount of nagging that makes you a responsible parent, but, not over the top nagging that makes your kids think you are lame. I try to be the kind of mom that makes our house the hang out for all my kids' friends because, "Kyle's mom is so chill" (and because I have a sweet tooth like a child and my pantry is living proof of this fact). The kind of mom that my mom was when I was growing up (and of course still is today), with the added bonus of trying to be cool on social media. I am told by my teenage son that in the world of social media where I have mistakenly and humiliatingly crossed into his web universe, that I fail miserably in the Cool Mom Department. And if there is anyone who is going to tweet that you are without a doubt the most embarrassing mother in the world of social media, it's going to be your 16 year old, know it all, teenage son. #epicfail

I have been told, by my horribly embarrassed teenage son, that we "old heads" have ruined Facebook for the youngins (no one who is anyone over the age of 14 has an "active" Facebook account) and now, even worse, we over the hill, inept, social media blunderers are hashtagging on Facebook. #OMG

For those who may be even lamer than me, a hashtag (#) originally began on Twitter then went to Instagram and it is a way to sort or categorize your tweets and pics so that other people who search under that hashtag can find similar tweets, pics and comments. For example, #embarassingmoms could be a hashtag on my son's Twitter account that would follow a comment something like this, "Mom's #'ing on FB again WTH?" and then his followers may share a similar horrific mother story with the same #embarassingmoms.

Until recently, us old heads using a hashtag on Facebook was just for fun (or embarrassment) because there was no direct link from one hashtag to the next. Facebook changed that, but, according to teenagers, it's still not an acceptable hashtag outlet. In fact, when you put "hashtagging on Facebook" in your search engine, the second search title that comes up is "hashtagging on Facebook is stupid", which I'm sure was written by a horribly mortified teenager. #ohwell

According to my social media extraordinaire son, one of the biggest hashtag Facebook blunders, is #TBT. For you lame-o's, #TBT stands for Throwback Thursday, a day when people post pics of days gone by on Instagram not on Facebook, yet, every Thursday morning, I wake up to my Friends on Facebook sporting big puffy sleeves and even bigger puffier hair. Most of these photos are pictures with large groups of friends from the high school or college era. I AWEnestly love seeing these photos because they do indeed throw me back to a different time, a time when I was young, carefree, responsibility free and worry free (with the exception of my obsessive fretting over Aqua Net Super Strong Hold Hair Spray's ability to keep my hair puffy until 2AM). Ahhh....yes, the good old days. There are, however, some friends and some times, you don't want to throw back to, no matter how good the photo may look and how many Likes, Comments or Retweets you get.

Ironically, it was last Thursday, that I had a #TBT moment, and it wasn't pretty. I agreed to help out with Ryan's end of the year Honors Party in Middle School. Yeah, I know, the fact that my son made the honor roll for the first three marking periods and was not only invited to attend, but, WANTED to attend, should have made it a phenomenal Thursday, throwback or not, but, old #TBT habits die hard. If someone would have snapped a photo of me last Thursday, waiting for the kids to be dismissed to the party, they would have seen the same woman (albeit a bit older) as the woman in this photo, smiling, happy, on the outside, but, a worried, hot mess on the inside. Yes, last Thursday, as I waited to collect the Honors Party Invitations for the invited attendees, I was thrown back with my old friends Denial and Clueless flanked on either side of me, but, my newer, much more fun to be around friend, Hope, was giving them both a nonchalant elbow shot as I waited and watched for Ryan to appear.

My throwback was more of a scary, "must have done some brain damage from spraying all the Aqua Net, oh please don't make me relive it again", flashback. As I waited for my 95 pound, almost teenage son to appear, in my throwback mind, I kept seeing an angry, scared, overwhelmed, lost 4 year old boy camouflaged among the wood chips, playing alone under the sliding board at daycare. My palms became sweaty, I felt my heart rate pulsating to the sound of Pharrell Williams annoying Happy song being played by the DJ and all I could think was, if Pharell Williams entered this room right now, I would stuff an Honors Invitation in his big hat then shove it down his Happy throat. I was anything, but, Happy, I was more like Neurotically Nauseous (maybe I should write a song). I quickly forgot about my new friend Hope and was immediately back in my old inner circle with Denial and Clueless, praying, bartering, and willing my son, not to walk into that commons area alone. All the years I spent accepting that Ryan is happy being just who he is, disappeared as quickly as a trending hashtag. #oldnews

As I continued to watch and wait, unaware of the fact that I was literally holding my breath, I found myself whispering to Hope, "Maybe Ryan will round the corner and come through the doors with a friend", while acknowledging to both Denial and Clueless, "Ryan will not only probably be alone, he will probably be the last one to show up". As I stood there transfixed between the present and #TBT, I watched the non-stop streams of kids flowing through the hallways like salmon fighting to get upstream, literally pushing and plowing their way through the masses. I watched as the cool kids in their high black socks and trendy clothes moved together in packs like a group of hungry wolves, just waiting to take a bite out of the vulnerable kids who walked alone wearing high white socks and the same five shirts all school year long. I watched, I trembled, and I waited. "He will be last and he will be alone and that's ok" was ongoing, repetitive, mumbling mantra.

Then just when my new friend Hope was ready to go hang out with some of the more optimistic, cool moms, my boy rounded the corner, in the middle of the pack, with no bite marks, wearing his high white socks, smiling, laughing and walking with, dare I say it....a friend. Ryan and his friend approached me with their Honors Party Invitation, and I got that very happy, yet trying not to smile grin from my boy and a nice, "Hello Ryan's mom!" from Ryan's friend. Ryan wasn't 4 years old anymore. He wasn't angry, he wasn't scared, he wasn't overwhelmed, he wasn't lost, and just like that annoyingly joyful Pharrell Williams predicted, Ryan was Happy and therefore, so was I. Would I have been less happy if Ryan rounded that corner alone, but, still smiling and happy while Hope quickly left my side for some other cooler mom, AWEnestly, yes, I would have, because no matter how hard I try not to project my version of happy onto Ryan, sometimes, I still do. #pharrellandme

Any of my #TBT photos that I would post onto Facebook, horrifying my social media savvy son, would show me surrounded by a group of friends, no matter how far back I would throw the photo. I always found myself in a group, mostly because I loved hanging out with my friends, but, also because being part of a group was how I identified myself. I was a salmon. Being in the middle of gang of friends for me, was, and sometimes still is, easier than being alone. Ryan is quietly confident in who he is and yes, autism makes having friends difficult, so sometimes being alone is preferred, because for Ryan, being alone beats swimming up stream with a bunch of pushy, obnoxious, teenage salmon. For Ryan, traveling his journey in a pack of wolves or a school of fish is not his thing, for Ryan, sometimes, having just one friend to happily script away with, is all he needs. #1isallyouneed

As hard as I try to be a "cool mom", I'm pretty sure Ryan's poor friend probably did not think there was anything cool about me as I followed them around smiling like some weirdo, taking photos, but, not posting them (well, not all of them) on Instagram with a cool hashtag like #bitemeautism or #dumpeddenial or #justbeyou. As I stalked, I mean, watched, Ryan and his friend walk around, scripting the latest Gumball episode together, I stood alone with no friends....not Hope...not Denial....and not Clueless, yet, I did not, for one second, feel the least bit lonely. Students, teachers and parents milled around me, but, I didn't try to hide my falling tears. I embraced my joy as my heart filled with pride while I watched in AWE the #TBT moment transport Ryan and me to the present.

Some days I'm cool, some days, I'm not, but, one thing we lame "old heads" have over these youngins is the wisdom that comes with age. We recognize that there are moments that don't need a #, a tweet, a post, or a comment. Such wisdom may not make us cool, hip, trendy or keep us from humiliating our children, but, our old head knowledge enables us to see that there are some moments that really are better experienced alone, because no one who "follows" you, "friends" you, or "tweets" you, can fully comprehend the significance of a moment, of that moment, except, YOU. #mymoment

Ryan just chilling with his friends (one is hidden to protect his privacy).

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A Shout Out to All My Fellow Bridges

5/15/2014

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In less than a week, I will be...brace yourselves....45. Yeah, I know how can that even be possible? I swear I look into my mirror, which must obviously be some type of trick mirror since I seem to look so much better in that mirror than I do in any photos (unless the photo is a distant shot, the lighting is poor and airbrushing was used) and I wonder, who is that tired looking stranger in my bathroom? Before I dial 911 to report an intruder wearing a robe exactly like mine, I rub my almost 45 year old eyes and think, "Sh*t. That's me." Some days, I think I would prefer a weird stranger in my bathroom than the depressing, realization that the old, tired reflection in the mirror is the same girl you see on this 1970's metal "swingset". It seems like just yesterday, I was 10, playing outside with friends, getting the star boy kickball player "out" by miraculously catching the ball that knocked me on my ass and watching non-stop episodes of my favorite television show, The Brady Bunch.

Christopher Knight as Peter Brady.

My gosh I loved that Brady family. I mean who didn't want that AWEsome 1970's house with Alice the housekeeper, six kids to play with, a dog named Tiger, and parents who were so dumb they wouldn't let their kids play ball in the house, but, allowed the same kids to naively wear a native taboo Hawiian idol around their neck which almost lead to a deadly tarantula bite. Last week, as I sat anxiously waiting for Ryan's chorus concert, it wasn't "Marcia, Marcia, Marcia" or annoying, put upon middle sister Jan I was thinking about, no, it was the one Brady who rarely stole the show, who sort of blended in to the background, it was Peter and his voice changing hormonal self.

Remember the episode when the Brady kids got an opportunity to sing on live television (of course they did) in hopes of becoming the next Jackson 5, I mean 6 ? All the Brady kids sang like beautiful song birds (each one secretly hoping they would be like Michael and leave the rest of the siblings in the dust), except Poor Peter. No way Peter was going to be the next Michael Jackson, because in that moment when it was Peter's time to shine, his pubescent voice picked that moment as a "Time to Change". Here is a little reminder. I'm sorry (not really).

Now that Ryan has reached the Peter Brady age, I will occasionally hear a Peter Brady "sha na na na na", come out of his beautiful, soulful voice and I wonder how this voice changing thing will effect Ryan's singing. As with all things Ryan, I then begin to worry. What if he can no longer sing? What if he no longer has perfect pitch? What if this God given talent was only doled out temporarily for childhood and with the onset of puberty, this gift will be snatched away as quickly as Cindy Brady's Kitty Carryall Doll? OMG, what if Ryan started sounding like, or even worse yet, started dressing like (gulp) Peter Brady?

When I asked Ryan about his voice changing he assured me that he can hear the difference in his voice, so he "adjusts it". I don't even know what that means, but, Ryan sounded quite confident and as he took the stage, and the first notes poured out of that beautiful face, I didn't need to understand it, because I could see it and I could hear it. If Peter Brady was on that stage, there were enough other kids on stage with him to drown him out, so that not a single voice cracking "sha na na na na" could be heard. Ryan sang his beautifully, gifted heart out. There were a number of songs Ryan sang that night, but, it was evident that one song in particular he loved best. The one that Ryan felt so deeply, sang so beautifully was the one song that reduced this worrying Carol Brady into a big, heaping puddle of tears.

Ryan's select chorus group sang Bridge Over Troubled Water and yes Ryan sang it, but mostly Ryan felt it. His facial expression, his confidence, his heart, his soul were all on full display, there was no awkward autismy smile trying to hide his feelings, he was fully exposed and he was beautiful. As I sat with tears streaming down my face I couldn't help but picture the depths of troubled water we have crossed together. The worry, the fear, the anxiety we both have had about how to cross that water without falling in and being swept away. I wondered to myself, did Ryan love this song for it's musical score, the notes, the melody, or the lyrics? I don't know why this song stirred Ryan, but, as I felt the melody wrap around me and draw me in, I wondered if Ryan knew, if he had always known, that "I would lay me down" to get him wherever he needed to go, regardless of the water's depth, turbulence and undertow.

When you're weary, feeling small
When tears are in your eyes,
I will dry them all
I'm on your side
When times get rough
And friends just can't be found
Like a bridge over troubled water
I will lay me down

I have been the bridge for my boy. Some days I have been like the Chesapeake Bay Bridge, strong and sturdy, towering high above the water, with not so much as a drop of water splashing my son, and some days I have been a slippery log that has conveniently fallen in just the right place, barely able to hold Ryan up as he slips and slides, to his destination, finally making it across the water to dry land. Although, I may not have always been the sturdiest bridge, in fact more times than not, my bridge should have been closed due to "instability", rated as "structurally deficient" and at high risk of "failure", but, somehow, regardless of the degree of deterioration, I managed to get Ryan across the troubled water. Regardless of how many storms this old rickety bridge has weathered or how many times this shaky bridge was stepped on, trod across, or flooded, I never once let my boy plunge head first into the water. Sure, like most of us, he has gotten wet from time to time, but, I have always been there to get him safely to the other side where he could dry off, change course, if necessary, and move on.

Like most of my fellow mama bridges, there were many days when the structural integrity of my bridge was compromised due to wear and tear, cracks in my towers, and years of being barraged by turbulent waters, and AWEnestly, my boy got wet. Unlike most bridges, we mama bridges do not have a built in accelerometer to alert us to deficiencies and deterioration. There was no way to determine if too much stress and fatigue was being placed on the bridge, increasing the chance that my occupant might fall into the cold, unforgiving water. However, as I watched my son sing, as I watched him achieve, as I watched the confidence soar from his heart as easily as the notes flew from his soul, I recognized that some of the falling, some of the getting wet, and yes, even some of this bridge's "structural deficiency" enabled Ryan to appreciate this moment. All the bridges Ryan had to navigate to cross that troubled water lead him to this moment, where he is today and without having to occasionally struggle to get across that water, he would not fully recognize the beauty of what it is to make it to the other side.

On the days when the water looked calm and serene to me, without warning, Ryan would see a tsunami coming. Regardless if I saw the wave coming or not, this bridge had to be open, this bridge had to be structurally sound ready to bear the weight in order to get Ryan safely across the water. Other days, when to me the water seemed choppy, and everywhere I turned there were whitecaps stirring in the water, I would do a quick safety check, ensuring that my towers were sturdy and my cables were strong because come hell or high water, I had to get my boy across that water, and just like that, Ryan would calmly walk across the bridge without even a backward glance at what I perceived as troubled water.

To all my fellow bridges out there, who safely get their child from point A to point B across that real or perceived troubled water, no matter how deficient and deteriorated you may feel, you always have to be structurally sound, because for a child with an ASD, even the calmest water can look like a deadly whirlpool. There is no time to determine if you are "structurally deficient" or "functionally obsolete", your passenger is counting on this bridge and whether or not your passenger decides he needs to cross this bridge today to get him across that water, or if he decides to take another route altogether, what matters most is that your amazingly AWEsome passenger knows, that for him, you will always "lay me down".

On the days where you feel like a fallen over, moss covered log that got lucky and just happened to land across the water, and on the days where you are as structurally sound, and as meticulously constructed as the Golden Gate Bridge, you still get your passenger across that water. We bridges, no matter our rating, get our passengers where they need to be, and we will always get them where they need to go. So, here's to you all my bridges.

As the last notes of Bridge Over Troubled Water echoed off the school auditorium walls and off my ready to burst with pride heart, I was in AWE of my AWEsome boy. In that moment, I felt certain that Carol Brady and her perfectly coiffed hair, never felt the pride I felt for my Peter Brady (as an aside, unlike Carol Brady, I would never allow Ryan to wear a taboo Hawaiian idol on his neck or that hideous shirt as seen on Peter in the above video). A "Time to Change" may be on the horizon, but, this bridge, regardless of my instability, my deterioration, and my current safety rating, will be there to hold my boy up as he crosses whatever troubled water lies ahead.

Ironically, in 2013 the average age of bridges in the US was 42 years of age and the bridge safety rating was a C+. On some days, when I am "structurally sound, but functionally obsolete", that age and rating sounds and feels about right, for this tired, old, weary bridge. However, on most days when this bridge feels new, sturdy, and strong, I guarantee, that regardless of my age, regardless of what I see in that damn, lying, bathroom mirror, and regardless of what grade the Federal Highway Administration feels I deserve, I know one passenger who on most days, would give me an A+...ok, fine, maybe just an A...as long as I get him over the water and he doesn't get too wet.

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The Placebo Effect

4/24/2014

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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".

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?

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.

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?

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.

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.

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".

Chuckie Disease, I mean, Chuckie Cheese. A hypochondriac's worst nightmare.

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I Wish I Were.....Big.

4/9/2014

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

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

Whether it was 13, 16, 18, or 21, once you got "bigger" you realized in many ways, being "little" wasn't so bad after all. Getting bigger means being more responsible and hearing your parents nag you about, "Well, now that you are bigger, we expect you to act your age, be responsible, hold yourself accountable, blah, blah, blah." Ultimately, the bigger your get, the more that is expected from you. What a drag. If you only knew how good you had it when your were little.

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

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

David Moscow in Big, 20th Century Fox

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

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

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

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

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

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

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

Tom Hanks, in Big.

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

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

Just keep in mind every gorgeous little boy you see promoting autism awareness this month will one day have facial hair, a deep voice, and possibly tower over you. Do your part in raising autism awareness this month and every month, by remembering that when you see a face like this...

....that one day that face will look more like this....

These faces, big or little, need your awareness, your advocacy, your understanding, but, mostly your acceptance. We have come a long way in advocating for children with an ASD, but, we must not forget the faces that we don't see. For every parent loving a child, big or little, with an ASD, our hope is that one day there will not be a need for a magic Zoltar machine to grant wishes, because with the right support, the right services, these little kids, who will one day become big, will be able to make their own wishes come true.

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

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