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A-U-T-I-S-M Spells Autism

10/17/2013

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For those of us with kids, there is a moment, a quick blip of time, when our child does something extraordinary, something so out of the "norm", that we are convinced that our child is destined for greatness. I don't mean your average run of the mill, "I just want my child to be happy" (That is so lame, has anyone wished their child to be unhappy? Raise your standards people.), doesn't wind up in jail, or like Miley Cyrus greatness, but something extreme, like Nobel Peace Prize, Gandhi or Malala Yousafzai greatness. (Side note, Malala does not want to be remembered as the girl who survived a direct bullet to the head by the Taliban or the youngest girl to ever be nominated for a Nobel Peace Prize, she wants to be remembered for educating and empowering young girls in Pakistan. AWEnestly, no kid can compete with that, so in this instance you might want to lower your standards). We've all done it, we've all thought it, then we have all laughed at how naïve we were later when we realize that although "great" in our eyes and in our heart, chances are this "greatness", this extraordinary talent or skill, winds up being fairly ordinary.

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Maybe your baby rolled over at 8 weeks of age which convinced you that your child must be absurdly strong and flexible and you immediately imagined him on the Olympic podium. And now today, your teenager's only form of exercise is stretching his arms out and contorting his body "just so" in order to take a "selfie" to post on Instagram. Maybe your son or daughter began speaking in full sentences by 12 months of age and you dreamed of becoming the parent of a famous orator, perhaps even the most famous, yet, often most ridiculed orator....The President of the United States. And today, this early talker, never, ever shuts up or gives in and some days you wish there was a mute button right next to their mouth. Maybe your pre-schooler picked up a toy string instrument and produced such a unique sound, you glimpsed a future where your child was first chair on the cello and that, oh so average, Yo Yo Ma guy was sitting sulkily next to your child in the second chair. Fast forward 10 years....the only music that "gifted" child cares about now, is the most recent JT and Jay Z collaboration that he recently downloaded to his iPhone. Or maybe, like Ryan, your child knew all his letters and the sounds they made at age 2, and was reading by age 4. It's easy to see why Dan and I were picking out our retirement home in some exotic location as we celebrated Ryan's freakishly early reading skills. Clearly, Ryan's large head had an equally large brain. A brain destined for greatness. A brain that will one day lead him to a lucrative career where he will be financially able to care for his, not nearly as smart as their offspring, parents. Today, asking that child to pick up a book and read is almost as tortuous as asking him to eat chocolate pudding instead of vanilla.

It was very obvious, at an early age (on his second birthday to be precise) that Ryan knew all his letters, upper and lower case, when he received a box of refrigerator letter magnets. As Ryan gently pulled out each letter, he named them all one by one as I sat on the floor, jaw hanging open, quickly visualizing which exotic location Dan and I would chose for our retirement. Ryan's letter recognition was not a direct result of me spending endless hours sitting on the floor teaching him his ABC's, but more than likely an indirect result of Ryan sitting on the floor watching entirely too many Baby Einstein Videos (good bye Mother of the Year Award...again). This love of letters led to Ryan's ability to read at a very early age.

Ryan first shared his hidden "greatness", when he read aloud the sign at Bruster's Ice Cream. My sweet boy had vanilla ice cream (and only vanilla...never, ever, any other flavor) dripping down his still chubby, baby cheeks, with rainbow colored sprinkles (never, ever chocolate, only rainbow) stuck to the end of his nose. He was just two months shy of his 4th birthday. Ryan looked at the sign and read, "ice cream, cakes and more". Holy crap, he just read that sign!! At first I blamed Kyle, "Did you tell him what that sign said?", in an extremely excited, yet somewhat agitated voice, as my eyes glazed with slight hysteria. After Kyle assured me he did not tell Ryan what the sign said (and quickly backed a few steps away from me), I asked Ryan to read other words. I pointed to sign after sign after sign, and sure enough, my budding genius read them all.

As I stood there, completely lost in my astonishment, ice cream melting all over my shoes, I whispered loud enough for the family sitting next to us with their meager, average child to hear, "My budding genius will be famous one day."  Denial, who happened to be sitting right next to me, greedily eating her chocolate ice cream cone, just snickered at me with a "yeah right" look on her face and said, loud enough for the average child family parked on the grass next to us to hear, "Well, if he's the next Einstein, why didn't he use all those words he knows to TELL you he could read?". Hearing Denial's words, I blushed at my possible premature outburst of my certain to be famous son, then quickly recovered by shoving Denial's ice cream cone in her face and continued bragging in my loud whisper voice of my child's new found Einstein like ability.
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After my budding baby genius buzz and my ice cream sugar high wore off, I have to admit, Denial's rude, fun sucking, dream crushing question was legit. How could Ryan know so many letters, so many words, but still had so little to say? How could Ryan read the words, "banana split sale, $2 off today only", but could not utter a single word about how his day went. Ryan could read a book and read a sign, but he couldn't read the sadness that was written all over my face as I looked longingly in my rearview mirror waiting for any words, from my beautiful boy as he gazed silently out the window not replying to anything I said. Just like words that jump off the pages of a book, I knew the words were there, waiting to jump out of Ryan's mouth, but the difficulty lay in getting the words from Ryan's brain to his perfect little lips. 

Regardless of the discrepancy between Ryan's knowledge of words and his odd way of expressing them, I continued to tell myself that Ryan did not have a "speech" problem because he pronounced all his words correctly and he did in fact, speak, Ryan just sounded more like a parrot than a boy. After Denial refused to return my phone calls from the whole ice cream incident, I recognized that without Denial around, it became more apparent that Ryan's speech, his words, his phrases, were rarely his own. Every comment, answer, and utterance was something Ryan had heard somewhere else, or from someone else (chances are from television....good bye Mother of the Year Award, yet again). Frequently, the phrases Ryan used made sense and fit the situation even though he may not have come up with the words on his own . Just like Ryan's ability to put letters together to make words at an early age, Ryan figured out how to put other people's words together to make speech. Once again, proving to me, his great capacity to overcome and learn. I mean, AWEnestly, Ryan figured out how to talk without ever really knowing how to communicate, certainly a sign of "greatness".
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It took a formal evaluation by a psychologist for me to hear the letters A-U-T-I-S-M to truly understand why Ryan had so many words, but so little to say. Along with that "A Word" I feared, I also heard a new, never worried about it because I didn't know it existed word, Hyperlexia. Hyperlexia is basically the ability to read words without any real training in reading before the age of 5. Here is the kicker, even though kids with hyperlexia may have a significant higher "decoding ability" (basically recognizing all those letters equal a word), their actual comprehension of what they "decode" is much lower. To this day, Ryan can read any words you put in front of him, but comprehending those words is a very different story (no pun intended). In addition to struggles with reading comprehension, some kids who are said to be hyperlexic, have trouble understanding speech. There are some experts who believe hyperlexia and that "A word" go hand in hand, but others believe there are various types of hyperlexia and some are completely independent of an ASD diagnosis. So, after all those years of wondering why in the world, Ryan could read the various types of Bruster's Ice Cream, but couldn't tell me why he liked vanilla, and only vanilla, and what made the rainbow sprinkles taste better than the chocolate, all came together. Even though Ryan didn't order it, he was given a scoop of autism, a scoop of expressive language delay, with a sprinkle of hyperlexia.

In order to address this accumulation of words Ryan had gathered in his big brain and help him put these words to use in his own speech, Ryan began speech therapy. We were fortunate enough to find a fabulous speech therapist, Mrs. P, who has been instrumental in Ryan's success. Ryan's expressive language (his ability to convey his thoughts into words with meaning) was impacted by autism much more so than his receptive language (his ability to understand what is being said). Ryan's difficulty with his expressive language is not uncommon for kids on the autism spectrum, which is why communication is so difficult for Ryan and why even though the words are all "there", it's easier to just stay silent.  

Over the past 5 years, Mrs. P has helped Ryan find HIS voice by teaching him, guiding him and most importantly, by having faith in him. Ryan looks up to Mrs. P because she "gets him", some days even more so than his own mother. Mrs. P knows how Ryan thinks and is often able to get him to "spit it out". Ryan still struggles somewhat with expressive language and his "social speech", and even though Mrs. P will continue to develop strategies to help Ryan figure out just what to say when, chances are conversation will never come naturally to him.  Even with the people Ryan trusts most, small talk and chit chat will always be down right uncomfortable for him and all the things he doesn't say, can't say, or won't say, will always be a little painful for me. 

Chances are Ryan will never be a famous orator, he most likely will not give eloquent speeches like the President (He would be a fabulous president though since he follows all the rules, doesn't cheat, and doesn't lie...perhaps a write in candidate for the year 2052?), and I promise you, Ryan will never be a fan of "small talk" since he has informed me before, "there is no point in it". However, 5 years since we first heard the words "autism", "hyperlexia" and "expressive language delay" regarding our beautiful, perfect son, Ryan has been able to amass all the letters and all the words that began forming in his brain at such a young age and create his own language and he is now able to come up with his own responses to all my annoying, nagging questions....most of the time. We still occasionally hear Jim Carrey as The Grinch, SpongeBob, Clark Griswold, and Austin Powers (Fine, I get it, I will NEVER be Mother of the Year...whatever!), but most of the time, the words that I hear today, come from the big brain and big heart of a very special boy who has worked so hard to make words leap from his brain out of his mouth. This boy may never be nominated for a Nobel Peace Prize, sit next to Yo Yo Ma or win Gold at The Olympics, but none of that matters, because I now know my boy is not destined for greatness....he has already achieved it.
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My quiet boy lost in his own thoughts...sometimes he shares them with me and I am grateful for every glimpse inside his world.
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