April is Autism Awareness month and April 2nd is World Autism Awareness Day. In the US, 67 children are diagnosed with autism per day, that's 1 child every 20 minutes. Some call it an epidemic, while others believe the criteria for diagnosing autism has widened therefore, more kids are falling under the autism umbrella. In April, we will be inundated with facts and figures, theories on causes of autism, possible treatments and "cures". Images of puzzle pieces, the autism logo, will be spotted on Facebook, Twitter, in retail stores, newspapers, magazines, etc. The nightly news, Today Show and Good Morning America will all do their part in raising awareness by interviewing specialists, discussing possible causes, the rates of autism, and the upcoming DSM-V (the Diagnostic and Statistical Manual of Mental Disorders, fifth edition) which may completely change the current diagnosing criteria for autism spectrum disorders. Chances are you will not hear about the process of getting an autism diagnosis. Unless you are a parent of a child with autism, you don't know the ins and outs, the forms and questionnaires that must be completed (certainly enough paper to eliminate a large section of forest), finding the right doctor, psychiatrist, psychologist or developmental pediatrician to evaluate your child and the waiting lists to see said specialists and then finally the heartbreaking toll a diagnosis of autism takes on a family.

As I have explained in earlier posts, no one said The A word right away. We heard many other words that began with various letters of the alphabet like, sensory processing disorder, language delay, developmental delay, auditory processing disorder, but no one ever uttered The A word. That may very well be because they saw the crazed, terrified look in my eyes when I asked, "Do you think he is autistic?", while dropping to my knees begging them to say no.

Prior to Ryan becoming a huge Mozart fan through Tomatis Therapy, an extensive occupational therapy evaluation was conducted by a certified occupational therapist (OT) with years and years of experience working with kids on the autism spectrum. Technically, an OT, can't make an "official" diagnosis, but they can certainly make strong suggestions which letter of the alphabet fits your child's struggles. The OT performing the evaluation agreed with every expert who had come before her and she did not believe The A Word was fitting for Ryan. I can't begin to tell you how relieved I was then and how grateful I am to this day. You see, Dan and I really wanted a third child and I feel quite certain had an autism diagnosis been suggested then, my beautiful Emma may not be here. I literally shuddered as I typed that. Timing really is everything.

I'm very fortunate in many ways, one being fertility. We discussed getting pregnant, then the next month I was pregnant (of course it took more than discussing it, but I can't share everything nor would you want me to). I can tell you that once again, the timing made the difference in my world (my world, by the way, is pictured left). A few weeks after learning I was pregnant, the same OT's who had evaluated Ryan were concerned that maybe he was a little "more involved" then they thought during his intial evaluation. More involved than what? More involved how? More involved than who? As I tried not to read between the lines while doing my best to keep my Taco Bell Tacos down (that seemed to be my only cure for morning sickness), I grasped my belly with my 6 week old baby girl growing inside. My obsessive fear of autism was now times two. What if between the lines the word I was desperately trying not to read started with the letter A? What if Ryan does have autism? What if the baby is autistic too? Researchers believe genetics play a role in autism and there are many families out there with more than one child on the autism spectrum. In fact, Autism Speaks conducted a study in 2011 which found that younger siblings of children with autism have close to a 1 in 5 chance or a 20% chance of developing an autism spectrum diagnosis. Thank God that study didn't occur in 2005. Timing.

Although the therapists felt Ryan was "more involved", they continually reminded me that what you called "it" didn't matter, what really matter was getting Ryan the help he needed to be successful and that was just what we were doing. Those fabulout OT's didn't know me very well back then, but, oh, how they do now. Poor things. Every chance I got, I hinted or downright asked, "Do you think such and such behavior means Ryan has autism?" These therapists could have been telling me about the best turkey wrap they had ever eaten and somewhere between the turkey and the lettuce I would work in, "So, do you think Ryan is autistic?" It goes without saying to work with kids who have varying different-abilities takes a person with a great deal of patience. To put up with those kids neurotic mothers takes a saint. I wish I was a sculptor, I would erect statues for all the saints who came before I was AWEnest and still chilling with my BFF Denial.

We continued with occupational therapy to help Ryan with his sensory processing difficulties, his auditory processing and language delays and he participated in friendship groups in order to improve his social skills, but it was over two years later before we had THE evaluation. In trying to decide where to go and who to see, made me feel like I was teetering on a tight rope. One wrong decision could mean Ryan safely makes it to the other side, or if I screwed up down he would fall with no safety net to catch him.

We had several choices. Since Ryan was school aged, we could have the school district evaluate him, but Dan and I were very concerned about how much information we were willing to share with the school district just yet. After all, Ryan was doing beautifully in kindergarten so why would I want the school to label my son and have preconceived notions about his abilities or his struggles? We could have gone to the developmental pediatrician in our hometown that everyone goes to, but after hearing the wait was almost eight months long and after the receptionist explained the process, I decided, no thank you. It turns out that after calling several other well known hospitals in other locations, the process was remarkably similar which shocked and saddened me. With each phone call I was informed that after Dan and I filled out loads of paperwork and questionnaires regarding Ryan's development, play, learning, sensory issues, etc, the doctor and his team of specialists would spend two hours with Ryan, evaluate him then provide us with a diagnosis. All said and done, it was one appointment that would take about two hours. Really? Two hours to put a label on my kid for a lifetime?

With my mama bear voice, I growled to the poor receptionist, "So let's see, as I understand it, these doctors plan on putting my son in a room full of strangers for two hours and you expect him to perform like a circus monkey and if he doesn't perform to their expectations it's sorry, here's your label anyway? Oh and by the way, here is a list of recommendations we cut and paste for almost every kid who has a similar diagnosis. Have a nice day.". There was silence on the other end of the phone. Poor woman, just doing her job. She meekly replied, "I'm sorry Mam (I hate that stupid word), but there are too many kids needing evaluations and there just aren't enough doctors to do it any other way." I thought I was going to throw up. As a parent, we are all aware of those moments when you want your child to perform their latest, greatest feat which of course they spend all day doing, until you ask them to perform for Aunt Ethel. No way. Although it may be disappointing that Aunt Ethel didn't get to see your child say his alphabet backwards while standing on one leg, his performance or lack thereof, won't dictate his future (unless of course tryouts for America's Got Talent is the next day). Free piece of advice here folks, encourage your child to become a psychologist, psychiatrist or developmental pediatrician specializing in autism. I assure you they will have job security. One child every 20 minutes.

Timing really is everything and boy did we hit the mark. We got lucky...so lucky. A compassionate, kind, and freakishly smart psychologist recently started a private practice after being home a few years raising her beautiful girls. She was near by and agreed to conduct Ryan's evaluation. This fabulous psychologist met with us and explained the process and the various tests she would administer to Ryan. Dan and I, as well as Ryan's teacher, had to fill out forms regarding his behavior, developments, academics, sensory issues, social interactions, etc. It was one of those forms with circles you had to fill in under headings such as Always, Almost Always, Sometimes, Almost Never, Never, Only When He Wears a Blue Shirt, Only When the Moon is Full...you get the picture. I hate those da** things. Not only did I have no idea what the difference was between Sometimes and Almost Never, you add my horrific fear of wanting to be AWEnest, yet certain if I color in the wrong circle my son's future will be determined by my pencil mark. It caused me to sweat.

Dan and I managed to muddle through the paperwork and for someone as analytical as Dan, those questionnaires were even harder for him than me. This amazing psychologist did not conduct Ryan's evaluation in two hours, she did it over the course of five different days. Some days he was more willing, some days he was not. She got to know Ryan and on the days he was slow to get started, she found a motivator. Auntie Anne's pretzels (cinnamon and sugar only please and try not to "overcook" them). This knows how to handle kids psychologist made up a puzzle of Auntie Anne's logo and Ryan would get a piece of the puzzle every time he cooperated. Once the puzzle was completed, we made a trip to the mall for his beloved pretzel. Clearly, this psychologist chose the right career path for herself. Would "Dr. Impressive From the Big Hospital" taken the time to do this? No, because in their defense, kids are lining up outside their doors for evaluations. We were fortunate to find this kind, loving, compassionate psychologist who also happened to be a mom and as a mom she knew my fears and we trusted her with our heart. I am certain that our timing was perfect because it lead us to her.

Once the psychologist finished all her testing, a seperate speech and language evaluation had to be completed by a licensed speech and language therapist. Then, it was finally time. THE evaluation was completed and it was time to hear the results. I had obsessed, feared and literally made myself sick over this moment. The "what if's" of several years culminated into this one moment and my heart was beating out of my chest. Dan stood on one side of me, Denial on the other as we approached the psychologists office. Walking up the steps to her office, it felt like bricks were tied to my feet. What if she says The A word? If she says The A Word, I hope it's Aspergers, not Autism because the internet says Einstein, Sir Isaac Newton, and Mozart probably had Aspergers, so Ryan might be eccentric, but he will be rich and famous if he has Aspergers. What if it's classic autism and she tells us he will never be able to have a job, a friend, a wife, or live alone? Ryan was 6 years old and her office was on the second floor.

Maybe I was wrong and it wasn't the right time for the evaluation. Maybe Ryan needed more time, afterall, he was only 6. Maybe I needed more time to prepare myself for what this wonderful psychologist was about to say. Maybe I needed more time to hang out with my BFF Denial. Maybe the person who said timing is everything is a total idiot. The psychologist opened her door with a smile and I immediately scanned her office for the garbage can certain I would vomit before our time was up. I thought about taking the garbage can and running back down the steps, but it was time. Time to push Denial over the stairway railing, stop being afraid and be the mama bear my son needed me to be. "Life is all about timing...the unreachable becomes reachable, the unavailable becomes available, the unattainable...attainable. Have the patience, wait it out, it's all about timing." It really was all about timing and so far time had been on my side. So, I sat down, eyeballed the garbage can, held my breath, put my hands over my ears (Denial was still clinging to the railing) and waited....

As mothers, we spend 9 months trying our best to protect and care for our little bundles of joy while in utero. We TRY our best to exercise in between naps, we avoid alcohol (which unfortunately would make the 9 months pass much more quickly) and we try and eat healthy (there has been no link to Oreos and autism), but above all, we never, ever miss our prenatal appointments.

When you are an awfulizing hypochondriac, there is a love/hate relationships with those prenatal appointments. I hated lining up like cattle at the scale, while the nurse chuckled and asked just how many Oreos you ate since your last appointment (funny how all those extra pounds made me clumsy and I frequently stumbled off the scale and stepped on her foot...hard). And there was always that mixed feeling of excitement and fear while lying on the exam table holding your breath until that doppler device found that fast racing heartbeat that you knew, even though it was a struggle to climb onto that table with your extra Oreo pounds, was clearly too fast to be yours.

After letting my breath out, I would lay on the table, envisioning this beautiful baby, and of course every vision had him or her looking and acting just like me. After all, it's only fair that if I'm the one who gets fat, suffers from constipation, rubs lotion religiously on my stretch marks, wears socks in August to hide my kankles and sacrifices my fashion sense (yeah, maternity clothes have come a long way, but they still are maternity clothes), then the child in my womb should at least have the courtesy to come out looking like me or at the very least, have my charming personality. You moms out there know just what I'm talking about and you know the feeling of injustice when that child looks and behaves remarkably like the parent whose only sacrifice for those 9 months was surviving your hormonal mood swings.

Seriously??!!! Well, Ryan definitely got his father's round, large, Uncle Fester head. Trust me, I could have told the labor and delivery nurse that his head size was in the 95th percentile, without her measuring it. Along with his head shape and size, Ryan's personality and way of thinking is also much more Dan's DNA than mine. The apple didn't fall far from Dad's tree, but as his Mom, sometimes I wonder if we are even from the same orchard. Oh, don't get me wrong, I've got the scars all over my bark for proof that he is mine, but my beautiful round headed apple, couldn't be more different than this tree. 


After you get over the "how dare you not look and act just like me" while pointing out your stretch marks to him  (which by the way, I do not refer to as "badges of honor" they are evidence of skin being stretched too far from healthy salads and lots of healthy milk, to wash down those Oreos), you love your child exactly as they are. I tell Ryan several times a day that he is perfect and in my eyes and my heart he is, but that doesn't mean it's easy to try and understand his world that is so very different from mine.

I'm pretty sure I came out of the womb talking. I know it wasn't long after I entered elementary school that the name Chatty Kathy was mentioned to my parents by every one of my teachers. Every report card had a big capital N for "Needs Improvement" when it came to talking out of turn, distracting my classmates, and shouting out answers without raising my hand.  When I was in 11th grade, my English teacher called my mother in for a conference to tell her that I was more interested in talking to my friends and chasing boys than Greek Mythology. Duh??!! Zeus might have been all powerful, but unless he was picking up the tab for dinner and taking me to the movies, he didn't have the edge over "boys". Ryan rarely has conversations with his peers and he would never dream of chatting when he isn't suppose to. My boy is a rule follower and I have had several teachers over the years say they would take a classroom full of Ryans any day. No teacher ever said that about me.

Yes, unlike my little boy, who even complains about school parties (they deviate from the norm of his school routine) I was a very social kid and now I'm a very social grown up. I love parties, gatherings, events, etc. I can talk to anyone about almost anything and pretend to be interested even if I'm not. Dan once said I could befriend a fence post, and AWEnestly, if there was no one else around to talk to I just might. I love my family and they mean the world to me, but sometimes it's my girlfriends who keep me tethered to the earth. I can't imagine my life without them, which is why poor Dan has been stuck in cold, wintery, Central PA, I can't bear the thought of leaving my friends.

Dan on the other hand, is so very different. He occasionally enjoys a social event and willingly allows me to drag him to nights out with friends, but more often than not, he does it for me. Dan loves his family and would and does do everything he can to make us feel loved, happy and safe. Although he travels for work and is forced to put on his game face and socialize, his favorite place to be is at home with his family...at least for a little while. You see, as much as Dan loves us, at times he must escape us and I mean MUST. Dan has some similar sensory issues as Ryan and is easily frustrated when in a loud, chaotic environment (or if you rattle a potato chip bag too long), which is our house, most of the time. We can be too loud, too annoying, too overbearing, too chatty and too much. He is so outnumbered. Kyle not only looks like me, but acts like me. Loud, chatty, smart mouthed, thinks he's funny and incredibly charming. And Emma, who although looks nothing like me is my Mini Me (and oh, how I love it). Talk, talk, talk, "watch me", "watch this", "check this out", parties, sleepovers, play dates then talk, talk, talk some more. Yep, Dan and Ryan both have their escape routes and need to be evacuated often. Ryan to his bedroom with he friends Mario and Luigi and Dan to his man cave basement to watch home improvement shows. Dan most certainly has friends he genuinely cares about and he is a wonderful friend, but more often than not, he would prefer to care for those friends while they are in their man cave and he is in his.

Along with their sensory sensitivities and similar evacuation routes, Dan, like Ryan, is also very logical and analytical which is why in the moments when I'm trying to help or understand Ryan and I end up pulling my hair out, screaming in frustration, with both Ryan and I in tears, Dan ends up coming to the rescue. He is able to talk to Ryan in a logical manner, come up with a way to explain the situation in Ryan like terms and can do it without losing a single hair. Dan thinks more like Ryan, therefore, on many levels he is able to relate to him much better than I can. This makes me grateful, but sad too. I may be the one who snuggles with my boy every night, kisses all the boo boos away and stares down any bullies through the bus windows, but I want to be the one who "gets him" too. I'm horribly, horribly greedy.

This year, Ryan is in fifth grade. Initially, it was a hard transition. New teacher, new rules, more writing, more abstract thinking, less rote memorization. When Ryan gets confused or frustrated, he shuts down and his brain takes him to Bikini Bottom with Spongebob, to Mario World with Yoshi, or he becomes an Angry Bird bombing Pigs. These places are all predictable and safe. He is happy there. It is evident Ryan has gone elsewhere because he makes these strange facial expressions, funny noises and tries not to laugh. I have told him repeatedly that when he makes the funny faces and funny noises kids will tease him, but he says he can't control his brain. Dan, whose brain in many ways is a lot like Ryan's, told Ryan when Spongebob and those guys show up, he has to open a door in his brain, shove all those guys in the door, take the key and lock them in until he comes home from school. Ryan beamed at this description and promised he would try. He came running home from school the next day, bypassed my open arms, ran up the steps to his dad's office and proudly announced he "locked up Spongebob today". It worked!!!! I would have continued on with my rant of "kids are going to tease you, then you won't be liked and wildly popular so you won't get invited to parties" had I been left to handle that moment alone. Thank God, our little apple has two trees and that at least one of us knows just how Ryan ticks.

I remember one time during dinner trying to get Ryan to tell me who he played
with, talked to, sat next to at lunch, etc and I got nothing, absolutely
nothing. The kids left the table and I started to well up. I looked at Dan and
sniffed, "I just want him to have friends", to which he replied, "We don't want
any friends, leave us alone." How can that even be possible? No friends? My life is so much fuller and brighter because of my friends. It has been hard trying to understand that what makes my life complete is not what makes Ryan feel fulfilled. I worry about who will catch Ryan when he falls if I'm not around? Who will he share his deepest, darkest secrets with? Who will cover for him when he sneaks out of the house to meet a girl?

As the tree whose apple rolled down the hill, across the road and up another hill, I continue to make progress in understanding my boy who is so very different from me. I have learned that he may not want anyone to catch him when he falls. He may prefer to pick himself up, dust himself off and stand up on his own. He may not care to share his secrets since afterall a secret is "something kept hidden or unexplained" so my rule following boy will probably do just that. And chances are very good that my rule follower will never dream of sneaking out of his house to meet a girl and even if he did, I'd bet the only girl he'd risk getting in trouble for is named Wendy, for a meatless cheeseburger with ketchup, fries and a small vanilla Frosty.

As greedy as I am in wanting to be all things to my special, beautiful boy, I am grateful for the tree that my apple landed right next to, for on the worst of days when I feel like I'm drowning, I can grab onto his branches to keep my head above water. And although I know Dan certainly knows the inner workings of Ryan's brain better than I do, there is no one who knows Ryan's heart like his mother.  Our brains may be very different, but our hearts are very similar. That same beautiful heart that I heard through layers of Oreos, once beating inside me, now beats beside me holding my hand, a stuffed Yoshi and his she she (aka, blankie) and I couldn't be more proud. And on the difficult days when we are both reminded how very different our worlds are, regardless of our differences, we end the day comforting one another snuggled up in his bunk knowing that regardless of the hold autism may have over my perfect little boy's brain, his mommy will always hold his heart.

I recently read a book for my book club entitled The Language of Flowers by Vanessa Diffenbaugh. It is a novel based on the Victorian era means of communication in which various flowers and flora were used to send coded messages to express feelings which otherwise could not be spoken (Thank you again Wiki, how did we ever manage without you?). If this floriography, as it was sometimes called, made a comeback, people on the autism spectrum would be the new casanovas! No eye contact needed, no worries if the words forming in their beautiful complex brain couldn't quite make the leap from brain to mouth, just memorize the flowers (piece of cake) and have a florist send them to mothers, teachers, siblings, etc. Pure genius. The language of flowers would be so much easier than the complexities of spoken language.

Children and adults on the autism spectrum, regardless of their intelligence are very concrete and literal in the way they use and understand language. Some may never utter a word, but given a computer program or iPad app that allows them to type their thoughts, it is evident their language is held prisoner inside their beautiful minds by autism. Sarcasm, idioms, abstract expressions and some forms of humor can go right over a child's head (Ryan would quickly look up and tell me there is nothing over his head). This lack of understanding can lead to frustration, confusion, low self-esteem, behavior problems, social isolation and learning difficulties.

Imagine this scenario, a classroom full of students come running into their room after recess and the teacher tells them it's time to "hit the books". All the neurotypical students will grab their books, open them up and begin reading. The child with autism will put his book on the desk and begin hitting it because that is EXACTLY what the teacher asked him to do. The teacher may reprimand the student for his lack of respect for school property while the other children laugh at him. Out of frustration, confusion and embarassment, the child with autism may lash out physically, cry, completely shut down and draw deeper inward. Regardless of the reaction from that child, one thing is certain, that student will have no idea what he did wrong.

The English language has many espressions that if taken literally can be totally misconstrued. No wonder so many kids like my Ryan are easily confused and distracted. When the words become too much these kids go to a place in their head that gives them comfort. I'm sure Ryan is somewhere chasing Yoshi in Mario World. This lack of understanding may lead some of these kids to be labeled as behavior problems, weirdos, loners, etc. What a sad mistake for such a misunderstood group of really great kids.

This concrete thinking causes kids on the autism spectrum to also have difficulty understanding that some words have more than one meaning. I remember one summer Ryan was splashing around in one of those plastic, kills your grass kiddie pools in the backyard. He was laughing, shouting, scripting, and having a great time. I smooched him on the head and said, "You're having a ball aren't you?" to which he replied, "No, I'm havin' a pool!". There was no ball in sight so you can understand why at a very early age Ryan thought I was ridiculous. Imagine living in a black and white world when almost everyone around you is living in various shades of color.

Just two days before this post, Ryan and I had this conversation:

Me: "It's suppose to snow tomorrow and we might even get an accumulation."
Ryan: "What?! On the day before, the day before spring?!"
Me: "Tell me about it."
Ryan: "Sorry Mom, I can't tell you a thing about it because I have no information on the upcoming winter storm." As I stifle a laugh and he looks at me wondering what he said that was even remotely funny, "I'm serious Mom, I don't know a thing about it so I can't tell you anything. I wonder if it's going to be a blizzard and what name the meterologists will give it."

Some moments like that one make me laugh with his literal interpretation of the world and some moments make me cry. I recall a borderline breakdown moment (for me that is) when Ryan was about 6 years old. The poor little guy was home sick with some nasty virus that he picked up at school. It was one of those scary high fever viruses that you keep waiting for the febrile seizures to begin (at least you do if you are me). He felt so crappy that he wouldn't eat or drink anything, so I was worried he'd become dehydrated and he would end up in the ER with an IV (of course I was). Since Ryan+Needles=hearing loss I was really pushing the fluids. I kept offering all flavors of Gatorade, Kool Aid, juice bags, you name it, but he just felt too yucky. Then I decided since he was such a  smart, logical kid I would just explain why staying hydrated would help him feel better faster. Big. Giant. Mistake.

"Ryan, you have a virus which is why you feel so yucky. A virus is like a teeny, tiny bug that gets inside your body and makes you sick. You need to drink a lot to help flush the bug out so you will feel better." Yes, I am a dumb a**. I actually used the word bug twice to a child whose fear of killer tornadoes is only surpassed by killer bugs. I. Am. An. Idiot. Unfortunately, I was completely unaware of the damage I had done. In fact, I walked away from the couch where my feverish, snotty boy lay trembling in fear under his Spongebob blanket, patting myself on the back for being such an astute, aware mother. In my unbelievably clueless mind I thought, "now that he knows what is making him sick, my budding little genius will start drinking to flush out that dumb old bug". It wasn't until the next day that I understood the degree of damage I had done to his literal, concrete mind. You see, my boy is smart, so he knew exactly what "flushing" meant and just where that Gatorade and "bug" would exit. His mother, well....not so smart.

My gosh how I wish our last name was Kardashian so cameras would have captured this moment. I will try and do it justice with words, but I fear it was a "you had to be there" moment. The day after our bug discussion, I was still oblivious to the fact that my son had not peed since said discussion, approximately 36 hours later. I was, however, aware that he had been acting funny all day. Ryan was highly agitated and a little more irritable than usual so I had myself convinced he was suffering from the effects of dehydration and was desperately in need of intravenous fluids stat (I watch a lot of Grey's Anatomy). With the fever better, I had him jump in the shower, certain we were heading to the ER. Can't cart a stinky kid to the hospital, what if McDreamy is our doctor? I'm guessing that a negligent mother who was unaware that her sick child hadn't peed in 36 hours would outweigh a mother whose kid hadn't had a bath in two days.

Not long after Ryan jumped in the shower I heard a blood curdling scream. At first I thought it was the typical shampoo in the eye scream, however, when I heard it a second time I knew something was very wrong. I took the steps two at a time, flung open the bathroom door and found my sweet boy shaking from head to toe, crying, hyperventilating and dancing (not in a Gangnam Style way, but in a holding your stuff cause you got to go kind of way). "I don't want to pee, I don't want to pee, I don't want to pee!", he screams. "What are you talking about?", I scream equally loud. Ryan jumps back in the shower, water running, still shouting "I don't want to pee!". At this point I'm scared he is so dehydrated he is hallucinating, having a psychotic episode or Ashton Kutcher and his producers of Punk'd are going to come rushing through my bathroom door. "What is the matter?", I scream in a voice bubbling over with hysteria. Through his near drowning gulps and sobs he wails, "If I pee the bug is going to fly out of me pee pee!" (I'm one of those moms who doesn't believe in teaching the technical terms for private parts until they go off to college). After hearing his words, I was still waiting for Ashton Kutcher. What in the world is he talking about? Unfortunately, there was no Ashton Kutcher. It was my old friends Denial and Clueless with me in that crowded, now turned into a sauna, bathroom.

OMG! Then it finally hit me, literally and figuratively. I said when was the last time you peed? Through his sobs he said "the day before yesterday".  Ryan hadn't peed in almost 36 hours because his stupid mother told him he had a "bug" inside his body that needed "flushed out". I snatched him out of the shower and tried to explain, but there was no reaching him at that point. So, I did what any good, AWEnest mother would do, I positioned my boy over the toilet and tickled my completely freaked out son. He continued to scream, "the bug is coming, the bug is coming" while still trying to hold back the dam of pee, but eventually the sobbing and the tickling allowed his bladder to finally win over his brain. Suffice it to say, when a hysterical boy is sobbing and being tickled by his near crazed mother on the verge of her own breakdown, his aim was a little off. One thing was certain, I was no longer worried about him being dehydrated. I'm happy to report that while cleaning up, I didn't spot a single bug anywhere.

Ryan calmed down, jumped in the shower as I went and collapsed on my bed. Through my tears I began laughing uncontrollably. You know that kind of hysteria that borders on madness. The moment was so unbelievable that when I told my girlfriend about it hours later, I explained that it was like I was in some surreal horror movie. Although you should be scared and freaked out, the absurdity of the situation had you choking on your popcorn with laughter. Laughter may have saved me from slowly sinking into madness, but my heart ached for my poor sweet boy who thought a bee, wasp or some type of flying insect was going to hang ten on a  wave of Gatorade out of his pee pee (they aren't in college yet). I can't even begin to imagine the power of his brain over such a necessary bodily function.

Yes, my literal concrete thinking boy may never fully grasp the vague and abstract expressions of our language. He may thank the rude kid who says "Nice shorts" dripping with sarcasm, as Ryan enters class in the same silk shorts he wore two days in a row and Ryan will probably never say he's going to "hit the books" when it's time to do homework.  Chances are good that my boy may never be a regular at comedy clubs since much of the humor will be "over his head", but that doesn't mean he can't still tell a joke that makes his mother chuckle....

While driving in the car one day, everyone was complaining about the sun being in their eyes...
Me: "Get out of here sun."
Ryan: "I can't get out Mom, I'm in a moving vehicle."
Me: "Ryan, did you just make a joke?"
Ryan: "Yeah, I'm pretty funny with those freakin' homophones."

You probably won't hear too many homophone (a word that is pronounced the same as another word but has a different meaning, for those of you who haven't had grammar class in over 20 years) jokes at The Improv, but to this mom, my son's homophone humor beats any mindless jokes Will Farrell can throw at me. If some day, Ryan decides to take a chance on Open Mic Night and tell a homophone joke or two, you can bet this mother will be waiting in the wings with a Victorian Era language of flowers bouquet for him that will include Amaryllis (pride), Jasmine (unconditional love), an Oak Leaf or two (strength), a couple of Protea (courage) and one single blue Rainflower for "attaining the impossible".

Children, just like adults, have ups and downs, highs and lows. They have areas that they excel at and things they need to improve upon. These highs and lows are all part of growing up, part of life. For neurotypical kids, the highs and lows of development tend to be like the kiddie coasters they set up for a week at the local county fairs and carnivals. For example, a child who can speak full sentences at 12 months of age, but stuffs his pacifier in his newly purchased Pottery Barn backpack on the first day of preschool. For the mother of that child, she is riding that kiddie coaster too. She bragged for months about her perfectly articulate child then later made up any excuse she could to justify her pre-school pacifier toting child while she mentally calculated the orthodontic bill certain to be in her future. We have all been there. For some, those days just tend to be a little more extreme. If you were to graph the highs and lows of a neurotypical child's development and abilities the graph would appear fairly even. A nice, gentle roller coaster of peaks and valleys. A child on the autism spectrum's graph of development and abilities would look more like the peaks of Mt. Everest and the lows of Death Valley.

Yes, the highs and lows of autism tend to be more like the Comet rollercoaster at Hershey Park (your welcome for that free plug Hershey. Please send chocolate) so you might just need a barf bag. Like Comet, the Negative G's may be record breaking, but the Positive G's may be heart dropping (that's coaster lingo for all you waiting at the exit purse holding people like me).
Autism spectrum disorders occur at various levels of cognitive abilities. Those kids on the spectrum with high intelligence (like my Ryan) tend to have unevenly developed skills. They may be near genius level with their non-verbal skills, but their verbal skills may be way, way, way below most children their age. These kids may have memory and visual skills that are off the chart, yet their abstract thinking may be virtually non-existant. Dustin Hoffman played an autistic man with savant like abilities in the movie Rainman. Most often these savant skills are in memory, mathematics, music and art. Sadly, for many people this portrayal of autism is all they know and only about 10% of people with autism have savant abilities, therefore, Rainman most certainly is not a representation of the majority of kids on spectrum. No, Ryan will not be able to count how many toothpicks you drop on the floor in record time, so please don't ask him to try and rest assured he will tell you to count them and pick them up yourself since you were the clumsy oaf who dropped them in the first place

Ryan's memory has always been fascinating to me. Whether it was his built in GPS, his ability to memorize movies, videos, television shows or muscial notes, he constantly had my jaw dropping to the floor. His ability to recognize letters and read words at the age of 2 made me feel like I just reached the top of the coaster with my hands held high over my head. However, when I would ask him questions and he answered me with the same question while looking out of the corner of his eyes instead of directly at me and when I went to pick him up at daycare and he was playing alone EVERY SINGLE DAY, it felt like I had fallen off the coaster and been run over by one of the cars. Ryan could do math problems and tell time long before he stepped foot in an elementary school, yet his language was made up of phrases and words he had heard before either from one of us or the television. Rarely, did Ryan make up his own speech. And how could a little boy love his mommy, daddy and big brother so much, but not give a hoot about the kids he had been in daycare with for four years? Yep, ups and downs, highs and lows. I never liked roller coasters.

Ryan always allowed me to snuggle him, which I am so grateful for because some kids are so sensitive that even a hug from the one person they trust most, physically hurts them. Up until he was almost two years old, Ryan rarely hugged back. He would let you cuddle and hug him, but it was never reciprocated. I remember the first day he hugged me back. We had just gone upstairs and when we reached the top of the steps, I bent down and gave him a big squeeze because I am a chronic snuggler and I cuddle and hug every chance I get. Well, on this day, my beautiful boy wrapped his arms around me and said, "ahhhh...". I was transfixed. Afraid to move for fear I would break the spell only to realize I had been dreaming. As he all too quickly dropped his arms and toddled away reciting (the proper word is scripting) his favorite Thomas the Tank Engine video, I knew I was wide awake and once again at the summit of the roller coaster. My how I had longed for this moment. Greedy mother that I am, I quickly asked for another hug to which my sweet boy emphatically told me "No!", so I savored the moment praying that one day he would wrap those chubby little arms around me again. Now I get hugs any time, all the time. In the moments when I'm in the kitchen cooking " a gross smelling dinner" or when I"m in the laundry room with an arm load full of soft cotton Hollister tshirts, and Ryan says, "c'mere...I need some of this" as he wraps his not so little arms around me, I try to remind myself the laundry and dinner can wait.  My beautiful boy and I waited long enough. Yep, front car, top of the coaster is the best seat for sure. Now plunging at high speeds in that seat at a 90 degree drop is another story.

My 90 degree drop moment  occurred right after Ryan turned three. We were at big brother Kyle's soccer game. It was a sunny, windy fall day. All the siblings of the soccer players were running around kicking a ball and playing. Not my boy. He was too busy trying to crawl back into the womb. That is not an exaggeration. The sun was too bright, the wind was, well, too windy and the referee's whistle was too loud and Ryan was completley freaked out. He was on my lap burying his face in my chest, stomach and legs in a feeble attempt to block out the wind and sun while covering his ears from the ref's horrible whistle. I tried desperately to coax him off my lap and go play with my friends' Clueless and Denial's kids, but he wouldn't budge. I thought if he would just get off my lap and go play he would be distracted enough that the wind, sun and whistle wouldn't bother him. I was so uneducated and naive in those early days. If Thomas the Tank Engine would have chugged by with a freight train full of Jello Vanilla Pudding and white plastic spoons, that boy would not have stopped his quest to return to the sunless, windless, whistleless womb.

Needless to say, with Denial and Clueless sitting on either side of me in our soccer mom issued camp chairs sharing cappuccinos, I was anxious and frustrated. "Just go play" I shouted in my Wal-mart mom voice (you know the one I mean) while his chunky thick soled New Balance sneakers were pinching and ripping my flesh and tearing out the hair on my legs (It was fall, remember short season was over so cut me some slack). As I glared at the laughing, smiling, not holding their ears children playing happily with the sun in their face, the wind in their hair rolling in the tall, tickly grass, completely oblivious to the teenage referee blowing his whistle every five seconds caught up in his newfound power, I despised them. Yes, I know it wasn't their fault, but I blamed them anyway. Why didn't they sit on their mother's laps hating the sun and wind and covering their ears so I wouldn't feel so bad? Children are so selfish.

Eventually, I left Kyle and Dan at the soccer field and packed up my sensory overloaded child and went home. I had no idea if Kyle's team won or not, but I knew I felt defeated. When we got home I was emotionally spent and I felt like I just got out of the boxing ring with Sugar Ray. Between the shoe prints all over my body and the whacks to the face from Ryan's large, hard head I felt beaten and scared. Scared that something was really wrong with my baby. You know how fear sometimes takes an ugly turn? Like when your child almost runs out onto a busy street and instead of hugging him and telling him how glad you are that he is okay, you snatch him by the arm and scream in his face. Fear took over my brain and my heart as my roller coaster plummeted to the ground. I looked at my beautiful little boy who was so happy to be in his safe home out of the bright sun, the hair blowing wind and the unescapable loud whistle and I said (I promise I'd be AWEnest...gulp), "Why can't you be normal like those other kids?!!" Oh. My. Gosh. There it was. I said it...out loud. I had felt it in my heart and I had thought it silently inside my own head, but I never, ever gave THAT thought a voice. The Positive and Negative G forces of this da** roller coaster just crushed my heart to a pulp and I jumped out of my car and collapsed into a heap on the tracks.

Meanwhile, oblivious to my smashed heart and collapsed body, Ryan just kept rolling his Thomas engines on their tracks scripting and smiling away. I know he heard me because kids on the autism spectrum hear and understand so much more than they let on. Whether or not at the age of three he understood what those horrible, awful words meant, I don't know, but I've been trying to make it up to him every day since. Oh, and I have also decided to pay for any therapy bill he may need as an adult. What kind of mother says that to her child? I knew that moment would forever be emblazoned in my brain and my heart...what was left of it. I can still see the shirt he was wearing and which engine he was rolling. James, the red engine. Same color as my pulverized heart.

My heart may have been crushed on the tracks, but, fortunately my brain is still able to recall a discussion a few years later that occurred in an occupational therapy office waiting room. As I shared my heart dropping moment with the other moms who were at the same amusement park with me riding their own coaster, one mother looked at me as both our eyes welled with tears, and  with a big AWEnest smile she said, "Oh honey, if that's the worst thing  you have ever said then you are a great mom." I loved that woman not only because she "got it" but because she was right. Ryan and I have had our ugly moments as we try to understand and live in each other's world. Sometimes it seems as the child gets bigger, the ugly moments get bigger too. There have been many days where I think he deserves a better mother than me and that's where my husband, my family and my girlfriends, wearing their medals of honor, pull me off the tracks and sit me upright in my coaster car. Just like the other mothers in that waiting room and mothers everywhere, until you have sat next to me in my car on my roller coaster, you can't judge me (and in case you are, it may make you feel better to know I cried while typing THOSE awful words).

I no longer harbor angry thoughts towards those soccer player siblings who were so happy and uneffected by sun, wind and whistles. Today, those children may be super star athletes, hanging with the "in" crowd and wearing all the right clothes, but I bet not one of them knows where the country of Bahrain is located. I would bet my soccer camp chair that not one of them knows how many deaths occurred in PA by tornadoes in 2011. And I  would stake it all that not a single one of them has the gift of perfect pitch. And as those kids now pull away from their mother's at the bus stop or in the mall for fear of looking like a baby or being uncool in the eyes of their friends, my Ryan still jumps in my arms and loves me up regardless of location or crowd. Go on and be cool, we could care less.

Whether it has been Ryan's development, cognitive abilities, or my emotions, having a child on the autism spectrum truly has been a Comet like roller coaster ride. Once the amusement park attendant snaps you in and pulls down your lap bar, there is no opportunity to say, "I'm sorry, I've changed my mind I would like to get on the kiddie coaster instead please." As Ryan's mother, I own this coaster and it is mine to ride alone although it's nice to have your husband, family and friends waiting down below holding my sunglasses and purse. And as my heart and stomach bottom out from the 90 degree drop, I try to remember that just around the banked curve is another climb to the top so I white knuckle the grab bar and hold on tight. The drops may make my heart stop, but the view from the top is glorious.

When any child struggles, it breaks a parent's heart. The struggle may be minor, but in that moment when your child is frustrated, scared, hurt or ill, it seems really, really big because to that sweet little being you would lay your life down for, it's absolutely huge. In the moment, it is hard to get perspective on how much worse a situation can be because your heart is hurting for your child. When I would watch Ryan cry, cover his ears or run in fear from things that seemed so innocuous to most children it would break my heart. I swear I felt his fear and anguish. My first question was always, "How can I help him?" Okay, fine that may have been my second question the first one most of the time was "Oh my gosh, is he autistic?".

I have described Ryan's tactile defensiveness. His dislike of scratchy clothes, tags, unexpected touch and pretty much anything having to do with day to day hygiene. With a sensory processing disorder unfortunately many, if not all the senses are affected. Some senses are more affected than others. I remember in my daily, or should I say hourly, quests on the internet to convince myself Ryan would have MY dream of a wife, two kids and a successful career, I read a story of one child who's sense of smell was so affected that he would vomit every time they walked into the grocery store. Now, as much as I detest grocery shopping, I detest vomit even more so I have always been grateful that although Ryan has the sniffer of a blood hound, I am ever so grateful he has a very tolerable, strong stomach.

Although Ryan repeatedly groans about the smell of my cooking (honestly that may have nothing to do with a sensory processing disorder), his heightened sense of sound was off the charts. I remember when he was just a little guy, we were outside playing and he kept saying "airplane, airplane" so of course I look in the sky and not an airplane to be seen or heard. I proceed to ask if he wants an airplane toy. "No, airplane, airplane". Well, after we both became frustrated (I'm pretty certain at a very early age he could sense my stupidity) I just proceeded to ignore his airplane chanting. A few minutes later, what do you know, an "airplane, airplane" appeared.  Seriously? That plane was nowhere in sight and although a fan of headbanging hair band concerts of the 80's, I do not suffer from hearing loss, unless of course I'm watching Downton Abbey, but I'm pretty sure that's more tuning people out than being hearing impaired.

Although a heightened sense of hearing, made the Bionic Woman a super crime fighter, for my Ryan it was a curse. Needless to say, if he can hear an airplane coming from miles away, imagine what a hair dryer, vacuum cleaner or lawn mower must sound like to him. When Dan went anywhere near the tractor, leaf blower or any other power tool, Ryan's chubby little legs would carry him as fast as they could inside the house. The vacuum cleaner caused him so much stress that I just vacuumed less and less (I convinced myself that my slovenly housekeeping was all part of my plan to protect my son from such anguish, although the hair dryer was fired up daily in my bathroom. You be the judge.). Fireworks to Ryan, were the most horrifying sound on the planet. Yes, many children are afraid of fireworks, but most do not count down the hours until the Fourth of July ends or become so indignant when someone has the colossal nerve to use fireworks, firecrackers, bottle rockets on any day other than the Fourth of July. For years I considered jumping the Canadian border the first week of July.

Sounds became such an anxiety provoking fear that I knew something had to be done. Our assistance with Early Intervention had ended due to Ryan being past the age of three and no further services were put into place due in part to his mother's poor choice of friend, Denial. Although some things truly were better, Ryan's fear of noises and sounds were not. And if I'm AWEnest, the areas that I thought had improved may have been only wishful thinking. Even Denial couldn't convince me anymore that my beautiful little boy wasn't suffering so I called our favorite OT, Miss M and asked for advice. She lead me to Mozart.

When you are fearing an autism diagnosis for your child and all your internet researches show you "no cure" or "lifelong disability" you are willing to try anything to at least help ease the struggles your child is having. For some, it's a gluten free casein free diet. For some it's Applied Behavioral Analysis (ABA) (which most experts believe is the most effective tool). For some it's chelation therapy which is a process  that removes excess murcury and other metals from the body for those that believe autism is caused by mercury exposure. Every child is different, every family is different. I am not here on my soap box declaring what is good and what is bad (I'm not Jenny McCarthy for goodness sakes). I'm describing what worked for my son, for our family. I for one, was not a believer in the mercury exposure theory so no chelating agents were going into my boy's body. Although some believe the gluten and casein free diet really help their kids, Ryan's picky food habits consist of all things gluten and to our family that disruption and potential hunger strike was not worth the possible gain. And since Ryan's diagnosis at the time was Sensory Processing Disorder, ABA wasn't even proposed to us. What we decided on was Tomatis Therapy or what Dan at the time called voodoo. And we didn't even have to travel to the Bayou to do it.

Tomatis Therapy is a listening based therapy that has proven effective in kids and adults with various learning disabilities. The goal was to help Ryan become a little less sensitive to different stimuli while also improving his auditory processing and both his expressive and receptive language. I can give a very brief layman's description here but for more detailed info go to www.tomatis.com.  Ryan was given special headphones with a microphone, and a vibrating mechanism to conduct sound waves to the bones of his body. The Tomatis program helps children to use their ears instead of bone conduction to recognize sounds and shut out irrelevant noises. When a child like Ryan has such sensitive hearing, not only can it cause anxiety and fear, but it can impair learning as well as social interactions. Imagine if the humming of the flourescent lights in a classroom sounds like a jackhammer in a child's head, he is going to have a hard time learning that 2+2=4. Likewise, if sounds and noises are so bothersome, chances are a child whose hearing is so sensitive is going to play alone under the quiet slide blocking out the loud world instead of playing with a bunch of rambunctious, boisterous pre-schoolers on the jungle gym. Tomatis Therapy was going to help desensitize my boy's world and a wonderful occupational therapy group, whose staff members have become like family over the years, would administer the music (much of the music is Mozart concertos and Gregorian Chants) which is specially treated with the Tomatis Effect of varying frequencies. Although it may sound like "voodoo", you have to understand that the ear does so much more than "hear". The ear catches sound waves that the brain reads as impulses which causes your body to react according to what you "hear". A soft lullaby evokes a different response in your brain than firecrackers in a school garbage can (I never did anything like that). The ear also helps the body maintain balance. Literally and figuratively. 

Dan was a little reluctant at first especially when he heard the cost of the therapy and the fact that our insurance would cover none of it. I suggested we sell his recently purchased two seater convertible and he quickly decided we could come up with the money. After a quick call to our pediatrician, who was familiar with Tomatis Therapy (and warned us the results can vary), he assured me it couldn't "hurt" Ryan, so we were ready to begin. My biggest concern was how in the world will they get my son who adamantly refused to wear a hat and hated to have his head touched put on headphones that were secured by a sweatband. I expected to be kicked out within 10 minutes, but nope, apparently my boy's love of music could make even headphones and sweatbands tolerable. So, while my boy listened to Mozart and played with toys in a fun kid friendly gym, the Tomatis Therapy went to work.

There were three phases to the therapy and the first phase was 15 consecutive days (excluding weekends) for two hours a session. That was then followed by a 3-5 week break with another 8 days worth of sessions following the break. Another 2-3 week break was then followed with the final phase which was 8 more sessions. This was seven years ago so chances are I have screwed up the schedule somewhat, but you get the idea. It was pretty intensive and my boy loved it! There were highs and lows, but all went according to plan. There was a period of aggression following the second phase as Ryan "woke up" and became more alert and social, but he had a lot of catching up to do. The final phase leveled everything out, including the aggression. When it was all said and done, it seemed like this protective shell Ryan once lived in was starting to crack and emerging from the shell was the beautiful little boy I longed to know. I distinctly remember sitting at Panera Bread and having a real back and forth conversation for the first time with my 4 1/2 year old son and getting in the car and crying...happy tears.

Ryan still has some sensory issues, but compared to before, they are vastly improved. Ryan may never love the Fourth of July, but he sat through an entire Disney World fireworks display (twice) while smiling and covering his ears with only some mild trepidation and grumbling. Tomatis Therapy did not cure my son. Just as I'm sure taking away his gluten filled Oreo Cakesters and Velveeta Shells and Cheese will not make him class president, but in this unknown world of autism where many discoveries are made through trial and error as each child is so unique, Tomatis, with the help of Mozart eased my son's struggles. As a mother who would do anything for their child, this choice was a no brainer for me.

Dan's concern of "voodoo" took lots of convincing even after the convertible threat.  It's not because Dan didn't want what was best for Ryan it's because, like Ryan, Dan is very logical and he wanted assurance this therapy was worth the money and the time. Unfortunately, since there is no cure for autism, there is no gurantee that one treatment will work for this child because it worked for that child. Autism is called a "spectrum disorder" to reflect the broad set of characteristics each child on the spectrum demonstrates. Prior to Tomatis therapy, Ryan wanted nothing to do with anyone but his mama. I distincly recall our beach vacation the summer after therapy ended and a little boy who continually pushed his beloved mama out of my chair for his Daddy to sit beside him. The green eyed monster didn't even raise an eyebrow at this because I knew how long Dan waited and hoped for his boy to "find" him. And as that father and son floated in the pool together, locked in a rarely before seen embrace, my husband threw out his stick pins and voodoo doll and said, "I would have paid three times as much to get this". Yep, Dan got a peek inside that beautiful shell where we both knew our son was hiding and the joy he felt was limitless. Dan got his son and he kept his car. Win. Win. 

When I made a scrapbook for my parents years ago, under a beautiful, happy, smiling picture of Ryan I wrote the quote, "Tall oaks from little acorns grow". Yes, my beautiful acorn cracked and with a steady shower of love, Jello Vanilla pudding, Pizza Hut plain cheese pizza (that isn't cooked too long and brown), and a little Mozart, this oak has grown to beautiful heights I once never imagined. And on the days when there feels like there is too much shade, I remind myself where there is shade there must always be sun.

Music. Some people say it's born in you while others believe anyone can learn to play an instrument or carry a tune. Sadly, I'm living proof that if it's not born in you, you can't pretend it was. Don't get me wrong, I love music. I love making the house virbrate with music while cooking in the kitchen, singing like Adele (and convincing myself I sound just like her) and at 43, I still love a night out dancing with girlfriends regardless if we are the oldest girls on the dance floor. Just because I love doing these things doesn't necessarily mean I should do them...in public...around people...who can see and hear.

Ryan is living proof that music is born in you. From the time he was a baby, music enchanted him. Whether it was the musical mobile hanging above his crib, musical toys or the Baby Einstein Videos (good heavens how Dan and I wished those videos were longer than 30 minutes), music just made Ryan happy. So many things caused anxiety, fear, and confusion for him, but music, regardless of how loud it was played, made my boy happy.

We knew Ryan liked music, but it wasn't until he was two years old that we realized he must have inherited his daddy's gift of music and that my defunct, mutated music gene was not passed on to him. Dan (who will tell you he is not) is musically gifted. If they had an American Idol for middle aged (good Lord, we are middle aged) folks, Dan would make Simon Cowell smile.

Actually, it was when we were watching American Idol (the early years, when it was still good) that we discovered Ryan's gift. One of the contestants was singing Elton John's "Don't Let the Sun Go Down on Me" and he was singing it fairly well. When the contestant sang the chorus the second time, so did Ryan...perfectly in tune, the right key and no Simon, he was not pitchy. Now remember, Denial and I were still wearing our BFF heart necklaces so I was freaking out that he knew the lyrics to a song he just heard for the first time. My husband and his music gene couldn't believe HOW Ryan sang it. Dan tried to explain to my tone deaf self that most people have to "slide into a note", but Ryan came in spot on perfectly every single time. Dan used an analogy to try and help me understand  that sliding into a note is like trying to find the light switch on your bedside lamp in the dark. You start at the base of the lamp and keep reaching further and further up the lamp until you feel the switch. Ryan was feeling and finding the switch in the dark without searching for it every single time. Dan was freaking out and totally amazed meanwhile, I was stressing thinking, "just because he knew the words to that song after only hearing them once, but can't tell me two words about his day at daycare doesn't mean he is autistic". My nutso brain causes me to miss so much of the beauty that is right in front of me. Yes, I know there is a medication for that. Sigh...

Well, like any good neurotic mother, I pushed my concern aside and signed Ryan up for a music class called Music for Children. If he was going to be the next Mozart then we should begin training him early. The class was designed to introduce children to the wonderful world of music through singing songs, playing instruments and dancing and playing with friends. My poor musically gifted boy. He was not ready to share his gift yet and at the time, his pitiful mother was not aware enough of his poor sensory processing system.

I didn't understand why when we ran around in circles in a room with six or seven two year olds clanging symbols and banging drums he wasn't having a good time. How could a lover of music not like circle time with friends when everyone was singing, playing (pounding) instruments and touching their head, shoulders, knees and toes? I was still sitting next to my friend Denial and my new friend Clueless in circle time. Miss J was our sweet, wonderful teacher and every week while Ryan fell to the floor in a musically overstimulated heap, she assured me he was "just fine", but I worried that he wasn't. All the other children were happy and smiling. Ryan was upset, sometimes crying and now I know, being extremely defensive. Too much sensory input and a system that couldn't break it down properly. At the end of each class I swear my poor boy ran up those church basement steps as fast as he could to escape what I believed would be a beautiful musical experience and what to him felt like being in a room full of kids scraping their nails down a chalkboard while poking him with a cattle prod. I kept thinking each week he would like it better, but every week as I made that right hand turn, my little GPS would shout, "No, no, no Miss J's class". Poor tortured fella. That class cost a lot of money so the torture continued.

So, Music for Children for a child with an impaired sensory processing system was a bad move, piano lessons one on one with a wonderful, calm, older woman suited him perfectly. No drums, no cymbals, no running around in circles, just a quiet home with my boy and his equally gifted teacher. Mrs M is perfect for Ryan and he adores her as much as he adores anyone. I can't describe to you the joy I felt at his first recital. After dragging him to countless baseball games and watching Kyle be applauded and cheered and sitting through numerous dance recitals and gymnastic shows (bored to death) with Emma being showered in kisses and flowers, it was finally Ryan's turn to shine. And oh how he did. He put on a shirt with a collar and tugged at it incessantly complaining of how it will probably choke him to death, while grumbling about his "hard" khaki pants and his oh so awful dress shoes, but when it was time to perform, he lost himself in the music and his hard pants and annoying collar were all but forgotten. It was a beautiful day. Yes, piano lessons have been a Godsend for Ryan even though he has to put down his iPod Touch and Furby to practice.

About three months after Ryan started piano lessons, I was snuggled in bed with Emma reading her a book. The end of the book had a lullaby that I have been singing to all three kids in the same tune for  years. It includes a musical score, but since I can't read music, it could have been written in Arabic. Ryan walks into the room and quickly looks at the lullaby and says in his "bossy" voice, "You are singing that wrong" and then proceeds to hum a beautiful lullaby that of course, sounded nothing like what I had been singing for years. Dan just happens to walk into the room at this point and is quite impressed so he decides to test Ryan. "Ryan, do you know this note?" as he points to a note. Ryan hums a beautiful note. They do this repeatedly with several other notes and Dan's smile keeps getting bigger and bigger. Dan makes us move the show to the piano. He randomly picks a note and asks Ryan to sing it. Ryan does as instructed and then Dan hits the same note on the piano keys. For someone as musically challenged as myself, even I knew that Ryan's note mimicked that key on the piano perfectly! This went on a few more times and Dan starts freaking out, tears in his eyes, yelling, "He has perfect pitch!". I had no idea what that meant, but I kept jumping up and down smiling like an idiot.

Perfect, or absolute pitch, "is the ability to recreate or identify a given musical note without the benefit of an external reference" (thank you Wiki). This gift Ryan has been given explains why when he was two, he didn't have to "hunt" for the note when singing Elton John's song, he already had the note in his head. Dan explained how rare having perfect pitch is and how jealous, yet proud he was of his "apple didn't fall far from the tree" son. Studies show that approximately 1 in 10,000 people have perfect pitch. It's not suprising that little parrots like my boy who have an autism spectrum diagnosis have a much greater likelihood of such a gift than the average neurotypical. Apparently the trauma of his early Music for Children Class did not damage his music gene.

It's funny how life sometimes comes full circle. Miss J, who forever told me Ryan was "just fine" as we spun in circles clanging tambourines while he screamed, "no, no, no" is now his elementary school music teacher. She is as fond of him now as she was when he was a freaked out overstimulated toddler. Miss J has also witnessed the music that was born into my boy as she is also his chorus instructor. She enjoys the love Ryan has for music and his beautiful voice. She has tried on numerous occasions to convince him to sing a solo piece in one of their performances, but to no avail. Ryan may not be ready for the spotlight, but he sings his heart out when he is on stage with the other fifth graders. As I watch and wave my arm off, my face breaking from my giant enormous smile at my handsome,  happy son on that stage, I feel a sense of pride that I can't begin to describe. The anxious little boy who once thought a church basement full of inept drumming toddlers was hell on Earth, can now get on stage with over 100 smelly kids, bright lights shining in his face and sing with the best of them. Some things, however, do not change. After his last performance, once we left the building and he felt the cold night air hit his face he breathed a huge sigh of relief and exclaimed, "Finally! Now I can breath...it was so tight and squishy up there!" Aaaaaaand.....we're back.

Music is a beautiful gift for my son. He can enjoy music alone, it doesn't take a team, it doesn't require eye contact, it doesn't take a great deal of social interaction. Music is his, not Kyle's, not Emma's...Ryan's. This gives him confidence and pride. Someday he may be ready for his solo and to share his gift with others, but for now, I will rejoice while he sings in the shower the latest musical adaptation of his favorite video game only to be interrupted when he freaks out screaming because he got shampoo in his eyes, ears or any other body part besides his hair. If he never chooses to share his voice for anyone but me, I will not cry about a missed opportunity, but delight in my ability to sit quietly and listen. It's like spotting a rare bird in it's natural habitat. As much as you want to prove the bird exists, the risk of snapping a photo to share with others may spook it and the moment will be lost as the bird flys away. So I must enjoy Ryan's song and let it fill my soul for this moment too will pass soon. For it won't be long until I'm singing with Adele and my gifted boy will tell me for the 20th time, "sorry Mom, but your voice is terrible and you never sing in tune". He may not be a contestant on the next American Idol, but he sure could fill Simon Cowell's shoes.

When trying to convince yourself that your son is not autistic, you spend hours online researching websites, reading stories, books, etc. You cling to the one detail that your child is not like "that" child or "this" child so your son must not be autistic. Some parents' experiences you read stay with you because of their details or because of their heartache. The ones that always hit me the hardest were the stories of parents who felt their child "disappeared".

Some kids on the autism spectrum start out completely fine. These children develop normally, reaching all milestones then suddenly around 18 months they begin to regress and slowly start to "disappear". No doubt about it, this is devastating to a parent. So many of the stories I read, parents referred to this regression as a "death". A death of the child they loved and knew, a child they had big hopes and dreams for who is slowly replaced with a child who has trouble communicating their basic needs, a child who suddenly appears deaf and fails to interact with them, a child who looks nothing like the one they knew before. The dreams of class president, football star or prom queen slowly fade as these parents adjust to new challenges.

Heartbreaking? Yes. Devastating? Most certainly. Loss of hopes and dreams? Perhaps. Death? Absolutely not. 

Autism is a "lifelong" disability, the key word being life. Yes, a child with autism is alive, he is beside you, he is breathing, he is feeling, he is alive. He may not speak, he may not communicate his feelings well, he may throw things at your head in frustration, and he may need the same routine day in and day out 365 days a year and the best parents in the world will be exhausted and frustrated, but, that child is very much alive. I'm not minimizing the heartache or the frustrations as both are very real. And since I have a high functioning child with autism I understand that those of you whose children have greater struggles may hate me and say I don't get it and that's ok, I'd hate me too. However, I do know, regardless of how difficult the challenges that lay before you are, it is not, and never should be, compared to death.

I told you when I started this blog I wouldn't be preachy. Forgive me, but today I am and I hope you understand why. This week I witnessed and felt the heartache of the death of a child. A beautiful child who left an incredible path of love in such a heartbreakingly short journey. The pain and absolute devastation that rained down on friends I love so dearly was palpable. The life they once knew is gone and they now must find a new way to live. I can't begin to imagine their pain. No my friends, nothing should ever be compared to such a devastating irreversible loss, not when your child, no matter how demanding, how frustrating, or how difficult they may be, is alive and healthy, yelling, complaining, and perseverating right beside you.

Yes, autism is pervasive, it is challenging, it can be heartbreaking, but many children with autism make progress, they love, they laugh, they feel, even those children who "disappear". Hopes and dreams that change is not death. A child who was developing normally and regresses is tragic, but it is not death. Death is permanent. Death is irreversible. Death is gone.

A child with autism may pull away from your touch and fail to hug you back, but, maybe when he is sleeping you can softly and conspiratorially brush your lips across his cheek or sniff the beautiful scent of his freshly washed hair even though getting his hair clean may have been a nightmare. Perhaps when your child is so engrossed in his 20th episode of Spongebob for the day he doesn't notice when you give his hand a squeeze. When your child finally sleeps (since so many have sleeping difficulties) you can watch him and feel happy knowing in that moment his rapid firing, complex brain is finally taking a break. 
 
A child with autism may have trouble relating to you, but he knows and feels your love. You can celebrate his progress even if it's not the progress of his peers. You can revel in a moment when his diet now includes a crunchy food and not just smooth foods like pudding or jello. Or rejoice on a day when a meltdown only lasts nine minutes instead of ten. Or feel your heart melt when your child makes eye contact with the young lady at Auntie Anne's Pretzels as she takes his order of cinnamon sugar pretzel nuggets with a small lemonade and has his exact change counted out before her cash register does. No, it's not what you had planned to celebrate. It may not be a perfect score on the SAT, but, it is progress and it is a reason to smile.

I was given a book as a gift when I was pregnant with Kyle called Chicken Soup for the Mother's Soul. A book filled with all kinds of feel good mommy stories. I recall one story, entitled "Welcome to Holland" by Emily Perl Kingsley about a mother who described her life with a special needs child as planning a trip to Italy, but ending up in Holland. Everyone she knew was going to Italy, but somehow she wound up in Holland. Since I have a secret (well, not so secret anymore) hoarding issue, I kept the book. 

It's funny that although I received the book as a gift when pregnant with Kyle, I had the page dog eared when I needed it for comfort with Ryan. A premonition? Probably not. Just an anxious, neurotic mother hoping she didn't end up in Holland too. As you know, my plane (well since I'm terrified of flying chances are it was a train), ok my train, did drop me off in Holland and over the years I have discovered what a beautiful country it is. Just like Ms. Kingsley, instead of feeling sorry for myself and regretting not getting to Italy with most of my friends, I have chosen to enjoy Holland for all its beauty and try not to get caught up in what I'm missing in Italy.

On most days I try not to dream of the shopping in Florence or of a peaceful gondola ride in Venice, but if I'm being AWEnest, there have been many times I have wondered why? Why is autism so prevalent...1 in 88 children and 1 in 54 boys? Why did I have a flu shot before I knew I was pregnant? Why did I eat all those Greek salads with micro-organism harboring feta cheese on top (because I didn't know that was bad until I was pregnant with Emma)? Why my boy? Why my family? Those moments are few and far between because I know the answer now. 

Because I will love him like no other. Because I need him as much as he needs me. Because I will continue to hope and dream for my son in Holland just like the parents hoping and dreaming for their children in Italy. Because my son is here beside me today and needs me now, in this moment, and I am oh so grateful for this beautiful gift. That doesn't mean I won't go batsh**t crazy the next time I have to remake his grilled cheese sandwich because it's "too brown", because sadly, I know I will. A battle will ensue when I agree to make it again because in my mind, it's just not worth the meltdown while my husband preaches about our endless contribution to the food wasting in America. Frustrating? Yes. Exhausting? Sometimes. However, it is a reminder that even on the rainiest days in Holland when the streets may be piled high with stinky trash, this is life, and regardless of where the train left you off, life is good.

Yes, a trip to Holland is not as fabulous as a trip to Italy. There may not be as many fancy shops with high end fashion or all those exotic wines and pastas, but you must enjoy every moment in Holland. The sights you would have never seen, the countryside you wouldn't have explored and the wonderful people of Holland you would have never met. No, my friends, it is not Italy, but regardless of what platform you exited on, you have a hand to hold on your trip (even if it's pulled away in an instant) a head to softly brush your lips across, a heart full of love and someone who counts on you and needs you. Someone who is very much here and present in this life, on this day, in this moment.

When your child is born you have hopes and dreams for their future. An autism diagnosis may change those dreams and that is a loss and it is heartbreaking, but your child is here beside you, counting on you, loving you, so you can still hope, you can still dream.  When the tantrums are too much, the routines too difficult to keep, and the kids in Italy are outdoing your child in every aspect, try and find another friend in Holland and hold on because this life that has been put in your hands is extraordinary and you must never take it for granted. And although this trip may not have been on your itinerary, this trip is a gift so stop looking for The Leaning Tower of Pisa and embrace your beautiful child who is healthy, smiling and happy in his own way, handing you a tulip and wearing the most beautiful clogs you have ever seen.