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The Early Bird Gets the Choice Donut

3/6/2014

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

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

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

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

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

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

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

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The Invisible Man

1/15/2014

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Have you ever had one of those days where you just wish you were invisible? A day where everyone and everything is coming at you all at once and the idea of "disappearing" so no one can nag, whine and demand your undivided attention is so appealing, that you long for the "unexplained accident" in the lab that occurs in almost every Invisible Man story. It's funny, it's always an Invisible Man. A television network made a pilot for an Invisible Woman show a few years back, but, audiences failed to relate, not because women don't belong in science labs, but, because we all know households would shut down if Mom really became invisible. In almost every Invisible Man story ever told, the Invisible Man is portrayed as a villain who uses his invisibility power for evil. Whether it was H.G. Wells Invisible Man in 1897, or Batman's nemesis in DC Comics in 2006, or even Jerry, the Invisible Man (ok, fine, the Invisible MOUSE) in a 1947 Tom and Jerry episode, the desire to wreak havoc while invisible is a temptation just too hard to resist. I promise that if someone has an Invisibility Serum, I will not turn to a life of crime. I just want to curl up with my iPad and a bag (the big 2lb bag...don't judge) of M&M's to watch a few episode of Downton Abbey or Girls without hearing, "Mom, I need you." for just a couple hours. Assuming of course the iPad and bag of M&M's could disappear too, otherwise, what's the point?

The one thing most of the Invisible Man stories have in common is that they are always searching for the antidote in order to be seen again. Maybe being invisible, even though you can finally have the upper hand on that tomcat that has tortured you for years, isn't all it's cracked up to be. Even though most of these men felt "invisible" before they swallowed the invisibility serum, surrounded by those who did not "see" them, maybe being permanently invisible felt too strange. I wonder what made them want to "disappear" permanently in the first place? Was it out of frustration due to the numerous occasions when they were still visible, but nobody could see them? Did having people constantly talking about them or around them, as if they were invisible, lead to such aggravation that they felt the need to seek revenge ? Did this frustration lead the various Invisible Men to want to mix up a few chemicals in the lab so they could disappear for good? Although Ryan would never dream of leading a life of crime nor would he just gulp down some serum made in a science lab (unless of course it tasted like root beer), I often wonder if Ryan feels invisible because sadly, some people don't "see" him. As my little Invisible Man, I worry whether or not he longs for the antidote to be seen, or if he prefers to remain hidden in the shadows. 
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Just last week I witnessed a moment where clearly it appeared my son was invisible. It was at the dentist office. When you have a child with an ASD, who is not a fan of the dentist, I'm sure there is a big red flag in the file with the letters A-S-D written on it, warning any newcomer of said child's unease (all my doctors have red flags in my file with the letters C-R-A-Z-Y written on it). The lovely hygienist, whom I had never seen before, came up to me, with Ryan sitting in the chair only inches away, and whispered, "Ryan's regular dentist is on vacation today, but, Dr. So and So can see him. I understand with Ryan's, umm, uhh, (she couldn't say The A Word) difficulties, he may not want to have his exam today." My Invisible Man, who really isn't invisible....or deaf....or stupid, squirmed in his seat next to me, since he understood precisely what this somewhat clueless hygienist said. Of course, Ryan was not comfortable with Dr. So and So performing his tortuous dental exam, but, I'm sure Ryan was not comfortable being talked about as if he were invisible either. I know this hygienist thought she was doing the right thing, in the right way, which is why I didn't go nutsy on her, I simply said, "Why don't you ask him?" through a very phony, teeth gritted smile. She did, and my Invisible Man said, "Yeah, I guess that's fine as long as this new guy doesn't touch my final remaining baby tooth which is very loose." Ryan was told by his "regular" dentist that said baby tooth needed to be out by July and since the snaggle tooth was still dangling inside his mouth (he hates wiggling and brushing if for that matter....gross, I know) I believe that was why Ryan was so agreeable to see Dr. So and So.

I understand that this hygienist did not know my son so she didn't understand the degree of "difficulty" he may have had with a change in his dental appointment routine, but, Ryan is not a toddler, he is a 12 year old boy, and I'd like to think she could have given him the benefit of the doubt by "seeing" Ryan and talking to him. At the very least, the hygienist could have called me to the front desk and had this discussion without behaving like Ryan was invisible. I have seen this happen more times than I care to count. On field trips, at class parties, at friends parties and even at family gatherings. Just because Ryan may remain quiet and doesn't go out of his way to communicate with people he is unfamiliar with, doesn't mean that he is invisible. Ryan is very visible for those who take the time to "see" him.
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I can recall a time when Ryan's invisibility shocked me. Like most schools, each classroom is assigned a room parent. One year, my girlfriend knew Ryan's room parent and so she asked the room parent about Ryan. This room parent, who went into Ryan's classroom with regularity had no idea who my son was. I AWEnestly, don't know why I was so surprised. I know that Ryan struggles socially, but, I guess I thought at least a parent would try to interact with him, or at least know his name. Ryan seems to just blend into the background, either making himself invisible or camouflaging himself with his surroundings in order to avoid any kind of social mishap. Sometimes by his choice, and sometimes, by other's choice. It's true that in many ways, Ryan may have the antidote to his invisibility in his back pocket, but, maybe he refuses to use it or maybe he doesn't quite understand how to use it. When Tom discovered that Jerry was invisible in The Invisible Mouse episode, Tom got creative and threw some flour on the floor in order to see Jerry's footprints...in order to "see" him. Sometime, you have to be creative, just like Tom, and look outside the box to see Ryan.

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Believe it or not, "the box" isn't that big. It doesn't take a lot of creativity to find the invisibility antidote. Just as I have witnessed those who can't or won't see my son, I have witnessed those who can and do. The mom who decided to stop at the car where Ryan was playing his DS and asked him to join her at the creek to throw stones, while others passed him by, or the kind soul who ran out of her car and jumped on pedal cars trying to catch Ryan in order to "see" and hear his joy. The math teacher who found the antidote in a math equation or the science teacher who found the antidote in plate tectonics. The music teacher who found the antidote in a musical piece that lead him to be able to both see and hear Ryan. You "see", the antidote for my Invisible Man is simple....try. Try and see him by finding his joy, try and see him by taking time to know him, try and see him by stopping and not walking past him, try and see him by viewing the world through his lenses, try and see him by just recognizing that he is THERE. I promise that all it takes to keep Ryan, and kids like him from disappearing is for people to just try and see them.

I watched a video once http://youtu.be/xMBzJleeOno of a severely autistic girl who had never spoken before, who had given very little indication that she could comprehend what people were saying until one day, she begin "speaking" through her words typed on a computer. During the video, the father admitted to being amazed at such a discovery, but, also horrified for all the things he and others said in front of his daughter who appeared invisible and who, in so many ways, didn't seem to be "there". This girl would explain that her body felt trapped by autism. She could see, hear and understand most of what went on around her and it took a computer as her antidote to finally make her visible. These kids are all "there", they are not invisible and treating them as if they are, well, that just makes us the villains. The villains who are withholding the antidote.

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Ryan has told his speech teacher, Mrs. P, who by the way always "sees" him, that he is uncomfortable being too "visible", but, with the right support and encouragement from those around him, maybe one day he will take a swig from the invisibility antidote. Maybe once Ryan "sees" that others can and do see him, he will step out of the shadows. Chances are Ryan won't be so visible that he gets kicked out of a college bar for dancing on top of the bar (I've heard that sometimes happens to people), but maybe in time, Ryan will find his own antidote, his own way of stepping out of the shadows so more people can see him. In the meantime, I may need to start carrying flour in my purse so folks unaware, misinformed and stuck in their own box, can see my son through his footprints, through his beautiful eyes, through his unending smile and through his pure heart. Throw down a little flour folks, you never know what or who may be visible, right before your eyes.

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Ryan has many people in his life that do see him, like his brother and sister, but like most siblings, there are times he wishes they couldn't see him or his candy.
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    Definition of Awe:
    "a mixed emotion of
    reverence, respect, dread and wonder inspired by authority, genius, great
    beauty, sublimity or might." Yep, someone should have consulted a mom 
    before
    spelling AWEtism.

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