- Experts know a lot about autism, I know a lot about my child. Autism is not a one size fits all diagnosis, therefore, neither are the various supports and therapies available. If it doesn't look like it fits, it probably doesn't, try something else on for size.
- Never say "never" and never believe "never". Ever. My son loves proving that "never" should NEVER be part of his vocabulary or mine.
- My son has empathy, he feels the emotions of others. In fact, I believe my son "feels" more than most neurotypical people, but, how he shows his emotions may look different. "Different" does not mean absent.
- Most people need educated about autism. The stares, the comments and the unsolicited advice is typically a result of ignorance. I can spend time being offended by the ignorance of others and counting in my head the various ways I could slap them, or I can educate them so the next autistic individual they encounter is better understood. I have chosen to educate and not be charged with assault.
- No, he will not "eat when he is hungry". My son has a very specific and limited diet as a result of his sensory sensitivities and his need for routine. It doesn't matter how good Grandma's famous mac and cheese is, it's not going to change his needs, so I won't ever test this theory.
- His time, his way. All the wasted time I spent agonizing over his delays or watching other kids wondering if, or when, my son would ever catch up was so pointless. My son always gets it, in his time, in his way.
- I worried so much about my future son that there were times I missed my "present son". I would give anything for a do over, to see the boy who was standing in front of me rather than focus and obsess over the boy who was yet to come.
- All those scripts, all those echoes and imitations, all those times I said to my son, "I don't want to hear so and so's voice, I want to hear YOU". Unfortunately for me, it was my son talking, I just wasn't listening.
- My child is not broken, he does not need to be fixed. He needs to be accepted, understood and loved. And trust me, he is.
- Autism is a journey and if you spend too much time watching others traveling a different road, you will miss many wondrous moments on the road before you.
- Yeah, I know the title says 10 things, but, I'm slipping in one more. Some days understanding a child with autism is hard, but, loving them is not.
This list could be endless. This list could go on for days and days. This list is comprised of only 10 things because I know, we are a fast paced society who likes short lists. Really, really short lists. So here it is, short, sweet and begging for about 200 more things I've learned loving a child with autism:
When I awoke Tuesday morning to what I believe is the real official, there is no denying summer is over, and the kids are officially back to school week, through my bleary eyed, I wish I liked coffee morning haze, I saw a scuttlebutt on the news about some private nude celebrities' photos being leaked over the internet. Of course, like any good 45 year old mother who has three kids to get ready for school, I tossed aside the waffles and quickly turned to social media to see what all the hulabaloo was about. And sure enough, Facebook and Twitter were trending the news that photos of Jennifer Lawrence, Kate Upton and numerous other celebrities in various stages of undress, were downloaded from private phones for the entire world to see.
Ironically, I just watched Kate Upton in the movie, The Other Woman this weekend, and the bikini she was wearing in the film certainly qualified as a "various stage of undress" and although I get and respect the whole invasion of privacy stuff, I failed to see what all the excitement was about.
Yes, my 16 year old son would have loved a quick peak at Kate's nude selfie (which makes me throw up a little bit), but, I failed to see the media fervor over such an event. I mean, a new sighting of Nessie, the Loch Ness Monster (clothed or unclothed) wouldn't have created such a social media storm. Is that because even though there have been over 3,000 sightings of the mythical creature, some folks still have a hard time believing Nessie is real since they haven't seen her with their own eyes? Or is it because a topless Kate Upton selfie is living proof to doubters that "they" are real, which is even harder to believe than a giant, 1,000 year old sea creature? Whatever you believe, this week was living proof that naked celebrity selfies beat out the Loch Ness Monster any day.
Just like poor, can't go viral no matter what she does, Nessie, and Kate Upton's hard to believe "they" are real "lung protectors" (my lungs are so doomed), myths, legends, lore and fallacies abound throughout our society. Whether it's believing in Big Foot or little green man, or believing that Kim Kardashian and Kanye West will grow old together, some myths are based solely on what others have heard, seen, or believe and for many folks, that's all the proof they need.
The mystery of autism and how this complex disorder impacts each and every person living with autism so differently, has lead to many beliefs and fallacies that result from "believing what you hear". Myths about autism are almost as far fetched as the belief of a 1,000 year old sea creature living in a big lake in Scotland and the belief that beautiful celebrities never take nude selfies.
I have to admit, back in my Loch Ness Monster tracking days, when my BFF's Denial and Clueless would bundle up for a cruise around Loch Ness in hopes of seeing a mythical creature we had heard so much about, I too fell for some of those autism myths. Myths like, "people with autism don't understand or feel love" (nearly killed me), "people with autism don't need friends" (another tough pill to swallow), "autism is caused by poor parenting" (ouch), and my favorite, "people with autism all have savant like skills" ("Oh, just like Rain Man"). It was hard reading, seeing, hearing, and yes, sometimes believing such things about my son, but, just like Nessie and her fan club, sometimes you can't believe sight unseen, sometimes, you truly do have to see for yourself.
Of all the autism myths, one that is particularly frustrating for parents is the belief that all people living with autism have some savant type ability, like Dustin Hoffman portrayed as Ray in the movie, Rain Man. The truth is, approximately 1 in 10 people with autism have savant skills, skills that are considered profound and are outside the realm of what is considered "normal". These savant abilities are typically found in math, music, memory, or art. With only 1 out of 10 "Rain Man" type abilities found in the autism population, that means 9 of those people living with autism do not have some prodigious ability.
It is true that many people living with autism have splinter skills, a certain skill or skills that is well above their overall functioning in other areas, but, that does not make them a savant. That does not make them bound for Las Vegas to count cards.
For example, Ryan's memory, and nonverbal skills exceed his verbal language and executive functioning. This makes Ryan typical in the atypical world of autism. Ryan also has an intuitive gift of music, his ability to hear a note, immediately name the note and replicate the note, falls in line with someone who has perfect pitch. Does having perfect pitch make Ryan a savant? I use to hope so. I use to pray so. If I'm AWEnest, I use to pray, "If Ryan has autism, then please let him have some supernatural, crazy skill. Let him be the next Bill Gates, Mozart, or Einstein. Amen.".
As I became more comfortable and accepting of The A Word, I eventually stopped looking for Nessie in every large body of water I entered and I also began believing that Ryan's memory and his musical ability did not make Ryan a savant. These unique and special abilities just made Ryan, Ryan.
A dear friend of mine has a son with an ASD. Just like every neurotypical child is different than the next child, kids with ASD are equally as different too. My girlfriend's son is much more social than Ryan, but, he has a harder time with school work. Our two boys' strengths and weaknesses vary as much as their interests and their hair color.
One time, like all mothers, my friend and I were comparing notes on our two boys. A mother loving a child with an ASD finds the most comfort in discussing her child with another mother who "gets it". When we were talking about our AWEsome boys, I remember my girlfriend telling me how so few people actually do "get it" and how little "real" information folks have about autism. It seems, when it comes to autism, that more people believe in the myths, believe in what they hear, not what they actually see, when it comes to The A Word.
When my girlfriend would talk about her son, she would often be asked that mythical autism question, "Oh, what is he good at?". It may be rephrased in various ways, like, "What is his gift?"or "What is his special skill?". The words may be different, but, the belief, the myth, is still the same. If your child has autism then he or must have some savant type skill. And my girlfriend, who worried that her son was given this autism label, yet, didn't have some Rain Man like quality, would respond, "He's just Grant.".
"Just Grant", those two words, two words put together as a result of myth believers when one word should be enough, "Grant". The word Grant or Ryan or Hannah or Caden should never have to be uttered with the word "just" in front of such a beautiful name. "Just Grant" are two words that are filled with such meaning that, it's a wonder the words make it from my friend's heart to her lips.
"Grant" should be enough, for these Loch Ness Monster, Big Foot myth believers. In fact, "Grant" should be everything, and to my girlfriend, "Grant" is not only enough, "Grant" is all she needs. However, for those who believe the myths, believe what they hear and not what they see, Grant, who falls in the 9 out of 10 kids with autism that do not have savant like skills, for some people, it may seem like something is missing. These are the same people who spend countless hours searching for mythical creatures like Nessie, Big Foot and E.T., looking for something they heard about and desperately want to believe exists, instead of seeing what really exists right in front of them.
Grant, is not "just Grant". Grant is a beautiful little boy who loves all things mechanical. Whether it's a $1.00 mechanical pencil, or a priceless heirloom, Grant loves to take things apart and create something new, using his imagination (which then dispels the "people with autism lack imagination" myth). Grant may not win his parents millions of dollars by counting cards in Vegas, but, that's okay, because Grant's parents already feel like they have struck it rich.
As a parent, it is hard to hear the words, "your child has autism". You spend days, weeks, months, and years convincing yourself that regardless of that label, your child will be okay, even though the myths of autism shroud a blanket of doubt around your heart as thick as fog over the Loch Ness Lake.
Whether it's a giant sea creature, an alien from outer space or a Kate Upton naked selfie, sometimes, seeing is believing. There are still many things we don't know about autism, many aspects about this complex neurological disorder remain as dark and mysterious as the alleged cave where Nessie lives on the bottom of Loch Ness Lake. However, there is one thing we do know, people living with autism want you to accept them, believe in them and SEE them with an open mind free of myths, legends and fallacies.
Maybe if you do that, you will actually see for yourself and start believing in what is actually real, and not succumb to the belief of a tall tale that was told around a campfire, in a movie script or in a Google search in order to strike fear and ignorance in the hearts of the storyteller's listeners. You will see with your own two eyes, what his mother has known all along, he is not "just" Grant, he is Grant, and then you too will finally believe.
We just returned from four days at the beach. The beach....it's great to say the word "beach", type the word "beach" and think of the word "beach" and smile a real, genuine, feel it in your heart, smile. The word "beach" always makes me smile, however, for a few years, my smile went on a brief vacation to Siberia whenever The B Word was mentioned.
My smile didn't head north because I don't love the beach, oh no, I am, and always have been, a beach girl at heart...as long as it's not raining and the water is above 76 degrees and shark free. I have always loved the sand, the sun, and the waves, and believe me, I've got the wrinkles and sun damage from my carefree, SPF free days to prove it. However, once you have kids, days at the beach change. Carting kids and kids' beach essentials make the carefree beach days, not quite so carefree anymore.
As young, carefree 20 something, I use to laugh at all the crap parents toted to the beach when I happily stepped onto the sand with a chair and a towel. Then I became one of them, sort of, in a way...not really. When you add a dab of autism to the sunscreen, swim diapers, shovels, pails, boogie boards, beach chairs and endless please keep them from whining, bribe them with anything regardless of the sugar content snacks, the once cool ocean breezes can feel as fiery as the gates of Hell.
When Ryan was little, The B Word, was almost as bad as The F Word. The sun, the sand, the wind, the sticky sunscreen and the shrill, ear piercing sound of the lifeguard's whistle was more than my sensory overloaded boy could take. You would think as a mother I would feel so badly watching my son meltdown as quickly as his overpriced Ice Cream Man popsicle, that I would have scooped him up and taken him back to the safety of his temperature regulated, sand free, ocean breeze free beach house, but, I didn't. Remember how I said I LOVED the beach? Well, come the fiery gates of hell or storm surge high water, this beach girl was determined to make my son love the beach too.
Year after year, as we endured tears and whining, bribes and threats, and after exhausting each and every possible distraction that would not make the sand feel so sandy, the sun feel so sunny, and the wind feel so windy, I would think, "Next year, he will learn to love the beach. Next year".
Yes, each and every year, as the car was packed up and the beach gear was dragged up from the bowels of the basement, with the remnants of sand and dried tears (both Ryan's and mine) covering the shovels, the pails and the boogie boards, I would silently pray, "Let this year be the year my little man finally gets what all this "down the shore" fuss is about. Amen.".
For many years, my prayers went unanswered as I sat on my beach chair holding my sand covered boy in my lap as he burrowed his head into my chest and grinded sand into my second and third layer of skin in his attempt to protect himself from all things beachy.
As I futilely attempted to remove each and every grain of sand from Ryan's stressed out body, I would see those "other mothers" and I can AWEnestly say, I kind of, sort of, really hated them. Those "other mothers" who sat in their beach chairs happily watching their children frolic in the surf and bury their siblings neck deep in the sand.
Those "other mothers", whom I believed took for granted the perfect beach day. The mothers who stood along the shore, camcorder in hand proudly capturing such beautiful moments so that in their golden years they could reminisce these perfect child rearing memories in the years to come. As I stood by, tears streaking my sand covered face, silently and selfishly hoping a giant sand sinkhole would swallow those "other mothers" and their perfectly recorded memories up. Yep, I hated them.
Ryan oblivious to my tears, because he was literally blinded by his own sunscreen infused tears, would rub his eyes, which of course only made his wails of "burn, burn, burn" grow louder, didn't even know anyone else existed on the beach, let alone his feeling sorry for herself, trying to suck it up, mother. Ryan was too busy trying desperately to survive the onslaught of sensory stimuli, while I shot daggers at mothers I didn't even know and Ryan's big brother Kyle jumped in the waves....alone, hoping one day his little brother would join him.
Little did I know, that my time, as a mom happily enjoying the beach with all her children, and Kyle's time (having a brother body surf the waves) was coming, we just had to be patient and wait. I hate waiting.
Being the beach lover that I am, as much as I wanted Ryan to frolic in the ocean like a dolphin and scurry across the sand like a crab, in terms of sea life, my son was more like an oyster than a dolphin or crab.
Like an oyster, Ryan had a hard to penetrate shell that he used to protect himself from things unfamiliar trying to enter his safe, closed off haven. Over the years, Ryan has slowly allowed unfamiliar and foreign stimuli that are horribly irritating to him, inside his protective shell. And just like an oyster's natural reaction to a foreign substance entering it's shell, is to cover up the irritant to protect itself, Ryan too tried to protect himself by closing up to all things beachy.
However, just like a pearl takes years and years to develop inside the shell of an oyster, over time, that once irritant that broke through Ryan's shell, has no longer become something to fear, but, something to behold. In an attempt to protect himself from outside stimuli, Ryan was creating something beautiful within the walls of his shell, something that I couldn't see from the outside. The beauty that lied within the shell needed time to grow and develop so that it could turn into something so exquisite and so rare, that was absolutely worth the wait.
Finally this year, my oyster revealed the beautiful pearl that had been forming within. Yes, he whined about how long we were on the beach, and yes, the water wasn't his desired temperature, and yes there were too many "annoying people" around, but, this year, I sat on my beach chair like all the "other mothers" and smiled as I watched all my kids enjoying the beach. Unlike those "other mothers" though, I recognized the rareness of the moment and although we captured it with digital media, those moments are forever ingrained in my heart. Moments that were definitely worth the wait.
Turns out, I wasn't the only mom harvesting oysters on this particular beach trip. Right down the beach was a group of mothers, who, chances are, at one time or another, hated all those happy smiling "other mothers" with their beach loving neurotypical kids like I did. It just so happened that the same week we were at the beach, so was Surfers Healing http://www.surfershealing.org/, an organization that provides surfing opportunities for kids and adults living with autism.
I watched as these kids who fight so hard to keep anything from seeping in between the cracks of their shell, open up just enough to experience something AWEsome. Many kids went into the waves closed up tightly and protecting themselves because they were afraid and unsure, but, they all came out shining beautifully to the applause and cheers of an entire beach. Yes, that day, I watched the shoreline shimmer with beautiful pearls who found pride and joy in the ocean waves while standing up on a surf board. While their parents looked on at the precious and rare gem that outshone any other.
Ryan may never love the beach like his mother, which will probably decrease the signs of aging and his risk for skin cancer, but, for this beach girl, there was just something different about this beach trip. There was a peacefulness about what is and not so much concern for what could be. Maybe when I finally stopped worrying so much about my little boy's protective shell, I could finally see the pearl that had been forming and growing inside all those years. I just had to sit back and wait.
And just like a string of cultured pearls that takes a single grain of sand an entire decade to form, only time enables the exquisiteness of such beauty to shine forth and be appreciated in the precise color, shape and size it was destined to be.
A recent trip back to my childhood hometown for a baseball tournament, unearthed a slew of memories that I had not recalled in quite some time. Isn't it funny how a certain place, a certain smell, or a certain sound can transport you back in time? Perhaps some of those memories are best repressed in the deep recesses of your mind, while others, make you smile and long for days gone by. As I willingly shared many childhood moments during my drive down Memory Lane with my three kids, I found out my kids wished that most of my childhood memories remained buried along with how to multiply and divide fractions, in a place forever lost, never to be exhumed again.
As the kids and I drove past one memory triggering landmark to the next, I would giddily shout out, "Look kids, that's where Mommy and her friends would sneak out of the pool at night and get into trouble!". Then as I swerved slightly off the road in a childhood flashback, "Oh, and that road right there is where we would go to kiss boys.". As I almost missed a stop sign, "Hey kids, put down your iPads, iPhones and iPods and look just past those trees is where we would go to rumble with other girls." (Kyle almost vomited that I said "rumble".). As we quickly approached out destination, "Check out that building right there, that's where Mommy and her friends use to go and listen to bands and go dancing.". My kids were not impressed, in fact they were mortified.
Kyle tweeted, "Driving through my mom's town where she grew up and she showed us where she made out with boys." Ryan, while covering his ears, shouted, "Please stop talking, you are burning my ears with your inappropriate childhood!". Emma, who was the only one not embarrassed by my lack of filter sharing, was most intrigued by where I went to dance and the fact that I did dance. Poor innocent thing, was picturing her young, wrinkle free mommy wearing a tutu and a leotard while dancing across a stage like a sugar plumb fairy in The Nutcracker, not like a head banging groupie with big 80's hair wearing a black unitard and cut off Levi's. She did get the stage thing right, however, in her vision, I'm sure she didn't see the bouncers tossing me off the stage as I tried to grab the microphone.
I have always loved a good song to dance to...back when I was young and even today. Just a couple of weeks ago, a good ole' 80's Aerosmith tune came on Pandora and without missing a beat, I got my groove on in the kitchen horrifying Kyle, once again (the joy I feel embarrassing my teenage son is indescribable), and pinching a nerve in my no longer 21 year old neck. All those years of head banging has done quite a number on my cervical spine, so I grabbed the Aleve and kept on dancing. Regardless of age and the amount of damage to my C2 vertebrae, I still love to dance, but, like any good 80's/90's headbanging dancer, you want to mix up the music, hear a different song. Some songs, however, people like to play over and over again, no matter how many times you have tried to get them to change the music, feel a different beat, it always ends up being the same old song and dance.
Last weekend, as I danced down Memory Lane, Ryan wanted to turn the van around, due in part to my "inappropriate childhood", but, also because once the road trip is over, Ryan is ready to head back home. Ryan loves traveling to see family and friends, but, upon arrival he struggles outside his comfort zone. Kyle's first baseball game was at the park where I swam at the public pool during my middle school and high school years. As I sat back quietly looking around and regressing, Ryan sat next to me quietly (at first) and struggling.
It was hot and sunny and the only place that offered shade was underneath a pavilion where all the fans from both teams were sitting, yelling, cheering, and clapping for their team. In other words, poor Ryan thought while Mom was so busy driving down Memory Lane, she must have missed a turn and drove him right to Hell.
Too much heat, too much sun, too much noise, too many people and two wasp sightings were already taxing my boy, then an accidental Powerade spill all over his shirt and shorts, just about threw him over the edge. Ryan wanted his exact same shorts and shirt dried immediately, he wanted the game to end, and he wanted his extended family, who came to watch the game and who love him to pieces, to stop trying to make small talk. He became angry, cantankerous, and withdrawn. My trip down Memory Lane came to a screeching halt as I quickly made a U-turn onto Present Street.
With all four of Ryan's 80 year old grandparents at the game, Ryan refused to give up his chair to one of them. He ignored the questions, suggestions, and hopefully, the stares, judgement, and remarks as he moaned and whined for most of the 7 innings. For friends and family who don't see Ryan often and who don't "get him" or get Autism, some believe that Ryan has "gotten worse". Those same people believe Ryan's behavior is a direct result of not enough discipline and "spoiling him", in other words, poor parenting. As his parents, if we just "grabbed him by the shirt collar and made him move out of that chair", Ryan's autism, his sensory overload, his stubborn behavior, and his struggle with communication would disappear as quickly as my headbanging dancing days.
For friends, family and baseball fans who don't "see" Ryan and who don't know him well, they don't see that the comfort of the chair he always sits in, regardless if his 83 year old grandfather does not have a chair, is the one familiar thing that feels like home to him in a strange place filled with sun, heat, wasps, shouty baseball fans, and wet, sticky Powerade. This chair is the one thing Ryan can count on not to disrupt his routine and make an already taxed out, overloaded sensory system, even worse. People who don't see Ryan believe he should not be catered to with special chairs, special routines, special food requests, special brands and special excuses because they believe Ryan will "get over it", "outgrow it" and "eat when he is hungry".
No matter how hard Dan and I try to educate, advocate, and explain how important it is for people who don't see Ryan to change their way of thinking, to see the world through his eyes instead of their own, to finally change the music, it's the same old song and dance. And even after all these years of dancing, my feet still get sore, my heart still gets heavy and my soul still gets weary as I desperately long for people to play a new song.
I have heard from many other parents loving a child with an ASD over the years that they too get tired of the same old song dance. They get so frustrated with family members and friends who just don't get it. People who judge instead of understand. People who criticize instead of support. People who blame instead of accept. These are the same folks who blame sensory overloaded outbursts on lack of discipline. The ones who blame picky eaters on parents who spoil them. The ones who think Ryan's struggle to communicate is an act of defiance. The ones who compare a child with an ASD to a neurotypical child and who don't understand why your child is so stubborn, argumentative, bad, (insert any negative word here), and why Little Johnny is so good. The ones who are so quick to judge, so quick to disregard and so quick to blame. The ones who are the first to say, "It must be the parents fault.".
I try to understand, particularly for the older generation, that autism didn't always exist, but, neither did rock and roll, headbanging, hip thrusting and Elvis, yet over time these strange new ways, although still misunderstood by some, have been accepted by many. I wonder if Elvis' mom felt the judgmental stares of a generation boring through her as kids across the world started pelvic thrusting on the dance floor. Like any mom, I bet Mrs. Presley's shoulders were big enough to bear it. Regardless of the size of our shoulders, the weight of judgement and misunderstanding is still incredibly heavy.
In order to alleviate some of this misunderstanding, there are many websites where parents can get business cards made that say "My Child has Autism" so if their child is struggling they can hand these cards out to the judging eyes of others. I understand why parents feel they need such a card, but, it makes me sad that such a card is necessary. When a two year old is having a meltdown at the check out line in Target because she can't have the toy that is purposely placed directly at child eye level so you will buy said toy to avoid said meltdown (retailers are such schemers), the mother doesn't need a card which says, "My Child has the Terrible Twos" that she feels compelled to hand to the shopper behind her rolling her eyes at such a "spoiled" child.
My days of dancing on the stage (and subsequently being tossed off by the bouncers) may have come to an end due to my unitard and Levi's no longer fitting me and the arthritis forming in my old headbanger neck, but, my days of educating, advocating, and supporting my son and kids like him have only just begun. I will continue to dance in my kitchen where I can quickly find the Aleve and I will continue to advocate for children and families living with Autism in the hope that one day, a My Child has Autism card won't be necessary.
I hope that in time, for those folks who insist on continually dancing to the same old song, over and over again, that they will at the very least, one day change their tune and that the judgments, the stares, and the misunderstandings will disappear as quickly as my 1990's big hair, headbanging, dancing days. The song they hear, is truly making them miss out on the beauty of the dance.
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.
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.
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.
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.
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.
This is a quick shout out to all the strong, loving, AWEsome moms I met yesterday at the 2014 Day of Pampering at the First United Methodist Church of Mechanicsburg. So many women shared their heartache, their struggles, but, mostly, their joy with me. To quote the beloved Dr. Seuss, my "heart grew three sizes that day". I promised these AWE inspiring moms that I would post the video I shared yesterday since there was a bit of a technical glitch with the audio. I also promised that I would invite everyone in attendance to my house for a glitch free showing along with wine, but, due to my public speaking anxiety, I failed to give the audience my address. I swear, it had nothing to do with my fear of the bill for the wine I would have needed to purchase for these amazing ladies.
I was AWEstruck by your compassion, strength and determination to make sure your intricate, one of a kind snowflake remains visible and that their uniqueness is never lost in the blanket of snow. Remember, even on the days when your snowflake seems invisible to everyone, YOU will always make sure he or she can be seen. "Stand up Mother!" because you are not invisible either. Your child sees you and so does every mother loving their unique snowflake with a "different" ability!
Here is the clip from the Emmys when Temple asked her mother, who believed, "different, not less" to "Stand up mother". Makes me cry EVERY SINGLE TIME.
Minecraft. If you haven't heard of it, then you obviously do not have school aged kids, you do not ever enter into retail establishments and you quite obviously have not fallen prey to social media. In other words, you must be living under a virtual pile of Legos. I admit, I'm no Minecraft expert, but, since Minecraft in the ONLY thing that comes out of Emma and Ryan's mouths these days, I have been dragged into the Minecraft world, with no sword or pick axe to gauge my ears out, so I've picked up on the basics.
From what I have been able to grasp, right before my eyes glaze over from the obsessive Minecraft chatter, you are alone in a virtual world that sort of resembles an island. With little to survive than your bare hands and the various minerals and materials you can find in said world to build shelter, tools, and whatever else you need to protect yourself from the things that go bump in the night. Think Tom Hanks in Castaway, sans Wilson, and throw in a zombie or creeper...or two. There is a creative mode with lots of creative building options to enhance your anything goes virtual world and a survival mode where you also get to build, in order to protect yourself from the zombies, creepers and spiders who are just waiting to take you out. Tom Hanks had no idea how good he had it with only madness barking at his makeshift cave door. And unlike Tom Hanks, in your Minecraft virtual world, you can continue to be alone in your deserted island like world, or you can invite friends to join you.
In addition to the Minecraft game itself, there are also YouTube Videos where people narrate and record their actions in their Minecraft virtual world. The most famous of these is Stampylonghead, with over 1.6 million followers and over 818 videos. This dude, with his horribly overexaggerated and highly excitable British accent, has a lot of time on his hands. I swear, I hear Stampylonghead while awake and in my sleep. This is because Ryan can mimick Stampy's voice to a tee and does so most of the day and in his dreams at night. I swear, Ryan's British accent is so good, he could easily land a role on Downton Abbey. I understand why parents like this Minecraft game. There is a lot of creativity, imagination and wholesome, mostly non-violent fun that draws kids in like bees to honey. As cool as the game is though, I'm ready for a bug zapper.
I had been telling Ryan for months that I thought he should try Minecraft since I read that tons of kids, including kids with an ASD, love the game, but Ryan kept saying it was stupid, because Ryan has a teenage brother who told him it was stupid. Needless to say, this teenage brother, who shoots Nazis in Call of Duty and runs from the police in his Lamborghini while playing GTA (Grand Theft Auto for all you newbs) feels that a virtual Lego type world, of old style graphics, is lame and since Ryan has worshipped Kyle from the moment Ryan was born, Ryan believed Minecraft was stupid too. Until Ryan's little sister built her first shelter and killed her first Creeper. Emma didn't reach "worship" status, but, she did impress her brother Ryan, which is more difficult than taking out a zombie with a diamond sword (we sound like a terribly violent family, don't we?).
Ryan's worship like nature of his big brother Kyle is twofold. One, Kyle has an extremely big heart and he "gets" Ryan, and two, quite simply, is birth order. Kyle was here first, so, Ryan doesn't know a life without Kyle, but, you can bet all your Minecraft diamonds that Ryan remembers life before his little sister arrived on the scene. Suffice it to say, Ryan would never string the words "worship" and "Emma" together in the same sentence.
Prior to Emma's arrival, Ryan had Mommy's attention most of the time. After all, Kyle was older and let's be AWEnest, Kyle was easier. Ryan struggled with sensory overload which lead to meltdowns. Ryan had a hard time communicating, which lead to frustration and subsequently, more meltdowns. In those early years, with all those meltdowns (Ryan and mine), we were more like a run for your life Chernobyl Disaster than a happy go lucky family. So, for a kid who craved routine, who survived on same, and who counted on Mommy to get him safely through his day, a new baby was a swell idea! Poor guy. Ryan had no idea what he was in for, and quite frankly, neither did I.
When Ryan came to visit Emma and I in the hospital after Emma was born, he literally threw a stuffed animal on her head and he did not acknowledge her presence. He was more interested in the buttons that raised and lowered the bed, the nurse call button (we almost got thrown out) and the cookie I had on my tray from lunch. This "pretend she doesn't exist" routine lasted a few weeks, until one day Ryan decided enough was enough and he locked his traitorous mother and screaming, smelly baby sister outside twice in one day.
It was a sticky, humid, beautiful summer day. The kind of day you appreciate in mid-August because you know all too soon, the heat and warmth of summer will soon be replaced with the crisp, cool days of fall. As I sat on the porch swing, sniffing my new baby's head, taking in the fading days of summer, I smiled happily thinking all was right with the world. My smile was quickly replaced with a puzzled expression at the slight "click" I heard at the back door. I saw a flash of red run past the window and I knew in an instant, that "click" was not the sound of summer wishing me well and locking me out, it was my darling son locking me and his baby sister out of the house...with not another soul inside the house.
I slowly got off the porch, trying not to jostle my sleeping princess and went and knocked on the door. "Hey baby, will you unlock the door and let sissy and I back in?", I said sweetly while peering through the window. There Ryan sat on the couch blatantly ignoring me while he happily played on his Leapster. "Ryan let Mommy in", a little more sternly. Ryan got off the couch and I immediately felt relief since I assumed he was coming to open the door. Nope. Ryan climbed on the back of the love seat, looked me in the eye (no trouble making eye contact in this situation) and shook his head no. Well, suffice it to say, that the postpartum hormones kicked in at that point, "Open the #*%$*%# door right #*%$%# now", as veins bulged out of my neck. Still, Ryan sat on the couch, shaking his head back and forth. No way, was his evil mother, who ruined his world, and that no good, smelly, loud, baby getting back in the house. Not until I called Dan, who had to come and let us in, not once, but twice (hormones, remember?). Yeah, it's pretty safe to say that Ryan did not "worship" his sister Emma the way he did big brother Kyle. She was a disruption...a change...a deal breaker.
Over the years, Emma has felt this preferential treatment for Kyle over her when it comes to Ryan's love and affection. Most days she accepts it, and other days, it breaks her sweet, sensitive heart. I once found a birthday card Emma had made for Ryan crumpled up and stuffed under her bed. Drawn on computer paper and carefully folded in half, was a 4 year old's exact replica of our backyard with a stick figure of a Emma and Ryan happily swinging together, which at the time, rarely ever happened. The crayon strokes spoke volumes of this little sister's true desire, to have her brother interact with her, to have her brother play with her, to have her brother look at her, the way he looked at Kyle. When I asked Emma why she didn't give it to Ryan, her dejected little shoulders shrugged and she said, "Because he will think it's stupid.". I told Emma to give it to Ryan anyway. Ryan looked at the card, tossed it on his dresser and said, "It's not my birthday anymore" and went back to his game. As much as I wanted to smack Ryan on the head with the card, I tried to explain how much love and time Emma had put into making his card and that his actions hurt Emma's feelings. This past Valentine's Day when Emma made a card for everyone in our family, except Ryan, I didn't need to ask why and I didn't insist on her running up to her room and making him one. Ryan would have thought the card was stupid (again), unless of course Emma had taped candy to the card. Ryan loves his sister, he just doesn't communicate that love in a way that Emma understands...yet.
Although I have explained autism to Emma and I have read books about autism specifically written for siblings of an autistic child, it's hard for a 7 year old's head and heart to grasp. AWEnestly, some days it's hard for a 44 year old mother to grasp. It's difficult for Emma to understand why Ryan doesn't hug and kiss her like Kyle does. It's hard to understand why cards and pictures made with love are rejected or ignored by him. It's hard to understand why she can connect with with every person she meets, but, not the one person she really wants to...her brother. Then along comes a guy named Steve with his blocks made of cobblestone, dirt, and clay as well as a pick axe and sword to keep the creepers and zombies out of their carefully constructed, mutually adored, virtual world and block by block, a connection has been made.
Who knew the phenomenon called Minecraft could not only build homes in virtual lands, but, Minecraft has helped build a relationship between a brother and sister that once seemed as unlikely as a creeper and zombie sitting down for afternoon tea. A bridge has been built that not only connects their virtual worlds, but, has also connected their hearts. Emma had to go to a deserted world and dig deep to find the proper materials to build a pick axe that was strong enough, and unique enough, to finally break through the wall of autism and find her brother. And Ryan, who for so many years, kept building his house with thicker, stronger bricks, finally let his little sister in and has promised her that he will continue to do so, as long as she doesn't chose a user name that is "stupid and ridiculous".
Now I'm the creeper standing outside their real world, outside Ryan's bedroom door where they play Minecraft for hours, hoping that neither one of them senses me and comes at me with their diamond sword. As I slowly crack the door while creeping, I see Emma on the top bunk, the glow of the iPad illuminating her smiling, happy face. On the bottom bunk is Ryan, wrapped from head to toe in his Angry Birds blanket, the only sign that someone is under the blanket is the perfect British accent coming from Ryan's mimicking lips. As an unwanted, spawned creeper, I quietly and stealthily push the bedroom door open wider, risking my safety by breaking the darkness with the hallway light in my attempt to get even closer to this somewhat magical moment. As I hold my breath, trying to stay hidden, I finally hear, with no trace of Stampylonghead's British accent, Ryan yell, "Hey Emma, can you come into my world?". As I stifle my tears at the deeper meaning to those long awaited words, I swear Emma feels the dual meaning too. I can almost feel the joy emanating from Emma's heart as she happily yells back, while tap, tap, tapping her iPad, "I'm coming Ryan! I finally found you in your world!".
I recognize that when the Minecraft obsession ends, so may the intensity of the connection, but, for now, Ryan is not locking his little sister out on the back porch...he has finally...finally, let her in. I hope that whatever zombies and creepers lie ahead in the real world, Ryan will tackle them with a diamond sword in one hand, while holding onto his little sister with the other, because alone he can build a shelter, but, together they can build a fortress. A fortress that hopefully, will keep out their mean, old, creeper mother who makes them occasionally leave their virtual world for the real one.
They say that French is the "language of love", due in part to the stereotype of the French as hopeless romantics and in part because people speaking French just sound sexy. If the French are such masters of love, then don't you think it's ironic that it was the French who came up with a game of love that determines if the object of your affection returns your affection based on flower petals and chance? Come on French people, don't you have something a little more romantic or statistically sound than petal plucking? I remember regularly raiding my poor Grandmother's flower beds for daisies as I plucked petal by petal, mumbling "he loves me, he loves me not" while picturing myself as "Jill" and having Shaun Cassidy "walk me home" while singing Da Doo Ron Ron to me. If only love was as easy as plucking daisy petals.
I remember back in my early Google obsessing days, when I would enter "signs of autism" in the search bar ten times a day, I would typically stumble upon phrases such as "fails to show emotion", "does not reciprocate emotion", "egocentrism", and "fails to show empathy". The name autism itself comes from the Greek word "autos" which means self, which just increased my Googling anxiety. My brain would start on it's obsessive train of thought and it was like a full steam ahead locomotive. Is Ryan only aware of himself? Is Ryan unaware of my love for him? Can't Ryan feel how much I love him? Is Ryan unable to feel happy, or sad, or scared? Does this autism thing mean Ryan doesn't, or can't love me? Why I would go back to this agonizing searching ten times a day is beyond me. I guess I hoped to eventually find a website that negated all this "lack of feeling" fear I had. So, I just kept Google searching, looking for the words, "He loves me". Little did I know, the proof of Ryan's love was in the hand that I held, the brief kisses that I got and the snuggles that he allowed me to give him. My "proof" was standing right in front of me.
One of the biggest misconceptions about people living with autism is that they don't feel or express emotions...an almost robotic type personality. People with ASD feel the same emotions you and I do, they just may express or communicate those emotions differently. That difference doesn't mean people with an ASD feel any less heartache, joy, disappointment and love than any neurotypical person. In fact, I believe Ryan feels more than the average person because he is so extremely sensitive, but, how those feelings, those emotions are expressed may look much different than what someone without an ASD has come to expect.
Many people with an ASD are also able to understand the emotions of others if those emotions are exhibited in a direct way such as laughter, crying, or yelling. Ryan has a hard time with more subtle emotions that are evidenced through body posture, tone of voice, and facial expressions. Ryan can easily recognize my angry "freaking out" emotion, by my shouty voice, the steam rolling out of my ears, and the spittle flying from my mouth. Ryan also understands that my tears equal sadness which, depending on what my tears are for, may cause him to feel sad too. And sometimes, when I am laughing, Ryan laughs too, then wonders why he is "fake laughing when it feels uncomfortable". Although identifying such extreme emotions comes easily for Ryan, he may not be able to recognize the sarcasm dripping from my voice when he asks for his fourth Oreo and as I once again relent to his poor eating habits respond with, "Why not?". Ryan happily grabs the Oreo and loves me for what he perceives is my lack of concern in him eating yet more trans fat. Ryan also may not recognize if my shoulders slump when I'm feeling dejected by Shaun Cassidy after my petal plucking assured me that Shaun Cassidy, "loves me not". Ryan's struggle with recognizing these emotions is more about a lack of ability than a lack of feeling.
Ryan's responses to other people's emotions almost has a direct correlation to how connected he is with a person. Ryan certainly understands sadness when he hears a story that is sad, but, if that story doesn't directly effect him, he may not respond in what most of us would believe an "appropriate" way. Perfect example. Last week there was a story that went viral on social media about a father who found out he had terminal cancer. Once this father received his grim diagnosis, he decided to write 856 notes to leave in his young daughter's lunchbox, so she would have a note from him every day until she graduated from high school. As I read the story, I began to cry and was so overcome that I left out a little sob. Ryan immediately came to me, got all up in my face (literally our noses were almost touching) and said, "What's going on here?" obviously concerned that I was upset. I shared the story with Ryan and instead of saying, "Wow, that is sad!" or perhaps getting a little choked up himself, he immediately said, "touching moment, touching moment" in his very best Goldmember voice from Austin Powers. Needless to say my tears were quickly replaced with hysterical laughter. Ryan knew the story was indeed a "touching moment, touching moment", and I'm sure in his mind he thought how sad it would be if his father was sick and dying, but, the story wasn't about Ryan or his dad or anyone that Ryan personally knew, so the story had very little emotional impact on him.
In the book, "Look Me in the Eye" by John Elder Robison, there is a section in the book when Mr. Robison discusses the perceived lack of empathy and emotions of people with an ASD. He tells of a time when he overheard his mother and her friend discussing a child who had recently been struck and killed by a train. Mr. Robison explained that upon hearing this news, he felt relieved that it wasn't him or his brother who had been killed by the train, so, he smiled. Since Mr. Robison was unable to communicate his thoughts and feelings, his mother and her friend just saw him smile and thought he was a psychopath for grinning about a child's accidental death. In his mind, Mr. Robison didn't know this child, so he did not feel terribly sad. Mr. Robison explained that when he was younger, he often felt people who cried about stories that involved strangers, were being fake, because why would you cry about someone you don't know? Just like Ryan's "touching moment", Ryan didn't know this dying man who was writing notes to his little girl, so although Ryan "got it", although Ryan "felt it", how he communicated it was not what most would expect as a typical or "appropriate" response. For Ryan, and many kids like him, it's all about the connection. When we lost a beautiful dear friend of ours, at the incomprehensible, inexplicable age of 8, through his hiccuppy sobs Ryan said, "But, she barely lived". Four powerful words that my boy communicated, that my boy understood, that my boy felt to the deepest part of his soul for people he knew, for people he loved, for people with whom he had a connection.
Yes, Ryan "feels". He feels anger, sadness, betrayal, disappointment, anxiousness, joy, love, and jealousy. Ryan also recognizes these emotions and he cares about those feelings in the people he loves, the people he trusts, and the people who love him. Ryan's feelings are not impaired, diluted, or inappropriate, but, sometimes, how Ryan communicates his feelings do not fit into what most of society believes is "acceptable" or "appropriate". I wonder who ever made up the rules of just how a person is suppose to communicate their feelings...not your feelings, not your grandma's feelings, their own individual, unique feelings.
It was once suggested to me that perhaps Ryan would do better communicating his feelings to a therapist who specializes in working with kids with an ASD. I'm not saying that it isn't a good idea, for sometime down the road, but, for right now, here is EXACTLY how I'd imagine Ryan doing in a stereotypical therapist setting:
Therapist: "So Ryan, would you like to lay down on the couch and relax while we talk?"
Ryan: (in a disparaging, how could you be so stupid and still be a doctor voice) "Why
would I do that? It's 4:00 in the afternoon and I don't lay down until 10:00
at night in my bed, at my house, with my Angry Birds blanket and my pillow!"
Therapist: "Ok, fine, then why don't you tell me how you feel Ryan?"
Ryan: "Well I feel scratchy from these jeans my mom made me wear today and I feel
blind from the sun coming in your window and I feel dry from the heat in this
Therapist: "Well, how do you feel on the inside Ryan?"
Ryan: "Well, right now I have a cold so I feel kind of juicy (yes, this is a word for
snotty) and my guts feel kind of gassy."
This conversation would be followed by the sound of my money flying out the therapists window.
Ryan has feelings and he understands feelings, he just sometimes struggles with the language of feelings. I have always been so blessed because Ryan is very affectionate with me...he hugs, he kisses and yes, he tells me "I love you so much Mommy". Some kids with an ASD have a much harder time expressing their feelings and allowing hugs, kisses and cuddles. This does not mean they don't feel love and they don't know love....they just struggle communicating that love in a way a neurotypical person, would prefer, but, for a child with an ASD, the way they love, the way they express emotion, feels perfectly "normal" to them. There are occasions where I am almost knocked to the ground with one of Ryan's hugs and there are times when my arms are quickly brushed away, perhaps at a time when his overloaded system is feeling too juicy, too scratchy or too gassy. For Ryan, some days, "He loves me", some days, "He loves me not" (yesterday when I forgot him at school, it was clearly a "not" day which is another blog post entirely).
Please don't ever think that people with an ASD don't feel like you do, because they do. They may not say it, they may not show it, but they FEEL it, so don't ever, ever sell them short. John Elder Robison said, "Autism is a COMMUNICATION disorder, not a "lack of feeling" disorder". Ryan's language of love may vary from mine and yours and chances are, he will not be the next French Casanova, but, I promise you, that even Ryan could have told the French that petal plucking is an "utterly ridiculous" way to determine if someone loves you. Although, Ryan could look at a flower and in an instant determine the number of petals and whether I should start with "He loves me" or "He loves me not" to get my desired answer about his love for me, Ryan would probably skip all that nonsense and in his best Austin Powers voice tell me, "Yeah baby". Yep, he loves me.
Keeping it real, raw, and AWEnest while laughing, loving and living in our world
touched by Autism.
If you would like to subscribe to this blog ...
Definition of Awe: