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Just Keep Swimming

2/26/2014

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The human brain is truly an amazing thing, and for some of us (like yours truly), the brain can be a scary thing too. Along with the runaway train that circles round and round in my head with this worry and that worry, that I can't seem to jump from, I am often amazed at how a certain sound, smell, or experience can trigger a memory in my brain that transports me to another place and time. A place that if not triggered, by some stimuli, would have remained buried deep in my scary brain never to be visited again. Last weekend, as I sat around an elegantly set table with fine China and stemware at the 2014 Day of Pampering, listening to a group of mothers whom all love and care for a child (or children) with various different abilities, I was magically transported back to a family trip to Sea World when I was twelve.

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Although Shamu was the main attraction, I clearly remember watching the dolphin show while my friend, whom I begged my parents to bring along, remained in the hotel room throwing up her morning pancakes. My dad was forced to stay back with my friend in the hotel to oversee the vomit rather than see Shamu's water olympics. Like many dolphin shows, before bringing out the stars of the show, the trainers wanted to educate us lowly non-marine scientists with facts about dolphins. Although well intended, the kids in the audience did not hear a thing those trainers said because we were all too busy scanning the depths of the water waiting for a dolphin to appear while trying to refrain from screaming, "Who cares, just shut up and make the dolphin jump through the hoop!". I was 12 and I didn't care what a dolphin eats for breakfast, I wanted to see how high the dolphin could jump.

Among the many blah, blah dolphin facts the trainers presented to us unappreciative kids, there was one fact I distinctly remember (probably due to my early fear of shark attacks, which makes perfect sense growing up in Central Pennsylvania). I had known that dolphins were smart because I watched Flipper reruns, but, along with dolphins' intelligence, the trainer said that dolphins also display altruistic behaviors. Now at the time, I had no idea what altruistic meant, I just remember that this altruistic behavior was the reason dolphins had been known to save humans from shark attacks. Suddenly, my interest, and my oceanic survival skills peaked up. The trainer explained that dolphins display this altruistic behavior by supporting sick, injured or weaker dolphins in their pod by swimming under them for hours at a time and pushing them to the surface so they can breath. In addition to helping their fellow dolphins, dolphins have been known to assist other creatures outside their pod, even outside of their species. 
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These dolphin rescue tales go as far back as the Ancient Greeks who reported stories of dolphins saving humans as well as other animals. Altruism in animals describes various types of behaviors performed by animals that may help out another animal (or in some cases a human) even though it puts the animal at a disadvantage, and in some instances, puts them at risk. If you Google, "dolphin rescues", a list of various stories of dolphins coming to the aid of humans in shark attacks or humans at risk of drowning, pops up. Dolphins have been know to form a circle around a human being attacked by a shark while escorting them to shore. Dolphins have also been known to rescue four legged friends who get caught up in the ocean's tides. These dolphin heroes, who will put the needs of others before their own needs, may display such altruistic behavior due to some primitive instinct, or maybe it's something else. Something we non-dolphins can't understand.

As my memories of Sea World slowly returned to the recesses of my twisted brain, I returned to the present and listened to these mothers loving a child with a different ability and I was in AWE. As I sat mesmerized by these mothers who sacrifice sleep, spa days, careers, and their own personal dreams, I couldn't help but think of the beautiful, smart, altruistic dolphin. These mothers, like most mothers, push their child to the surface time and time again, often forgetting to come up for air themselves. Some may call it a mother's instinct, but, just like the dolphin, I believe it is something more. Something that those who are not weighted down by the water fail to understand.
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Yes, these mothers' instinct is to first and foremost protect and care for their child, but the love they have for their child blinds them to the sacrifices they make day in and day out. I recognize that sacrificing comes with the role of being a mother whether you are loving a child with a different ability or not. However, after listening to these mothers, I can assure you that missing out on a girls night out or quitting your six figure salaried job in order to run three kids to various sporting events or activities, is a lot different than...cleaning out your child's ventilator or feeding tube...shopping for a new wheelchair instead of new soccer cleats due to your child's sudden growth spurt...or home schooling three children with different abilities because the ignorance of the educational system and the meanness of bullies became too much.

As I sat there, grateful that I was able to translate their dolphin speak, I was AWEnestly amazed. There was so much joy, so much laughter, so much pride in these mothers' joyful willingness to remain under the water while pushing their child to the surface. Not once did I hear a single complaint. Although these moms display altruistic behaviors similar to dolphins, these moms are not dolphins, they are human.  I'm sure that they have days filled with sorrow, resentment, jealousy and anger, but, regardless of those emotions, these mothers are all able to find the sun illuminating at the surface while holding up their child, regardless of how deep and dark the water is that surrounds them. Mothers, who on most days, choose to focus on the joy, the love, the progress rather than the struggles, the unfairness and the missed opportunities. Their strength, their love, their determination, left me in AWE. I kind of felt like some creepy, shark circling and eavesdropping in this sacred circle.
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Ryan's different abilities paled in comparison to many of the children that these amazing mothers love. Regardless of how deep our water is, or how long and how far we must swim, one thing every mother at the 2014 Day of Pampering had in common, is the joy we feel when even the smallest progress is made by our child. Progress that we feared would never come or were told by experts that would be highly unlikely. Some progress may only take a little nudge to get our child to the surface, while other milestones takes months and months of pushing, sinking, swimming and jumping through hoops. Those trials, those struggles, make each and every victory so much sweeter. 

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For nine months, a mother's heart and her child's heart are connected.  Once a child is born, that child's heart beats independently, unconnected from it's mother. That is not the case for the mother. A mother's heart will never beat independently of their child's heart. A child's joy, triumphs, struggles, and heartaches are as real to a mother's heart as they are to her child's. This was never more evident to me than it was this weekend. The grace found in a mother's love is unparalleled to any other love. As I spoke to a mother whose 17 year old child has been wheelchair bound her entire life, she did not minimize her daughter's challenges or her own, but, this mother could still recognize that unlike a child with an ASD who may wander off, possibly getting hurt or lost, wandering is one challenge this mother does not need to worry about with her child. Another mother, who knowingly and willingly adopted and loves several children with multiple physical and neurological different abilities, told story after story with pride and laughter of how varied each one of her children's personalities are, not their different abilities. 

I was beyond AWEstruck this weekend. Just like the dolphins who will push a struggling, disadvantaged, "different" dolphin to the surface for miles and miles with little regard to their own well being, mothers loving a child with a different ability are as altruistic as the dolphin. Often foregoing what most mothers take for granted, these mothers rarely look down at the darkness, but, almost always look up for the light. I discovered that there is no water deep enough, no water dark enough and no net big enough to stop these mothers from always making sure their child reaches the surface, regardless of the toll all the swimming, all the pushing, all the sacrificing has on them. You may not be able to see these mothers' fins or blowholes, but, I promise you, they are there, under the water waiting to resurface once their child has reached the top. 


Some of you have requested the video from the Day of Pampering, so I included it here. As always thanks so much for your support and for believing, "different, not less".




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Pampered, Inspired and Humbled

2/23/2014

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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.

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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.
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I Have Spawned Into a Minecraft Creeper

2/20/2014

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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.

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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.
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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?).

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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.
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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. 

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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.

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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. 

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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.
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Building together to keep out creepers like their mother.
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He Loves Me, He Loves Me Not, He LOVES Me!

2/13/2014

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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.

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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.

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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. 

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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.

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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.

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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 
          office.
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. 

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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.

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How could anyone doubt the love in that smile?
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Please Stop Staring at My Soul

2/5/2014

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We have been smack dab in the middle of a kitchen renovation project and for someone who is not "on the spectrum", the chaos and mess is causing me to stress over a disruption in my routine. The inconveniences, dust, lack of a dishwasher (horror), dust, no decent meal in days, and the dust. Yuck. The pinnacle of the project came to fruition when the granite was delivered and installed on Saturday (hallelujah), so we invited our friends over to check it out that evening. While sitting with our friends amidst the dust and the Kitchen Aid Mixer and toaster temporarily relocated to the kitchen table, Ryan came in with his recently purchased Minecraft Diamond Sword (foam of course). Our friend, who has tried repeatedly to engage Ryan on numerous occasions, be it at their home, at parties, and at other social events, with little to no luck, asked Ryan about the sword. I'm sure our friend expected to be ignored or brushed off quickly, as was the pattern in the past, but, this time, in Ryan's house, in Ryan's environment, and discussing Ryan's latest "thing", our friend got a wonderful treat. Ryan connected. Ryan explained what the sword was, what it was made of and when he got it. Ryan's body, and most importantly, his eyes finally connected with our friend.

There is an old English Proverb that states, "The eyes are the window to the soul", which stems from a passage in the Bible, Matthew 6:22-23. This proverb basically means that by looking deeply into a person's eyes, your can tell who they truly are on the inside. Although I have looked plenty of people in the eye, I can AWEnestly say, I have never seen anyone's soul. Do I have soul blindness? What does a soul look like? It's true, you can see kindness, sadness, worry, and a range of emotions in someone's eyes which may tell you a lot about that person, at least in that moment. That is certainly a powerful tool...if that person wants you to glimpse at his or her soul. What if someone wants, or needs to keep their soul hidden and the shades are drawn and the shutters closed tight? If you can't see through the window, how can you tell what that person is really like? How do you see the soul of a person who avoids eye contact because it makes them uncomfortable, it makes them nervous, it confuses them, and it makes conversation very, very difficult. 
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When Denial and I were spending endless hours Googling "signs of autism", regardless of what site we were on, the words "poor eye contact" jumped off every page and poked me in the eye. Of course, I would quickly cover my eyes, click on that x as quickly as I could and look somewhere else, just like I did when Ryan would avert my gaze. I saw it, I knew it, I felt it, but, I was so afraid, so worried, that I would just look away so I couldn't see Ryan looking past me and not at me. More often than not, as seen in this picture, Ryan would look out the corner of his eyes rather than directly at you. It didn't matter if you were 5 feet away or 6 inches away. It wasn't like that all the time, which is why Denial and I felt that A Word, just did not fit him. Sometimes, Ryan would occasionally glance at my eyes, and I would savor that peek into his window to see the beautiful soul behind the often drawn shades, no matter how fleeting the moment was.

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Even though I worried about Ryan's preference to look at me out of the corner of his eyes, I had Denial reminding me of Ryan's beautiful eye contact when he was younger and I was still nursing him. I specifically remember savoring those moments when he was approaching one year of age, knowing our special, just the two of us, time was about to come to an end. I think that is why my brain has seared the moments of his beautiful eyes connecting with mine as I sang him songs (he couldn't tell me how terrible my voice was since he wasn't speaking yet), told him stories and snuggled him. Ryan would pull away long enough to look up, milk dribbling down his face and smile with his mouth, with his eyes and with his soul. The shades were wide open. Is this memory still so vivid because it was a chapter ending or did I sense a new chapter about to begin? Maybe I could sense something was about to change, maybe I could feel Ryan slowly pulling away. It's hard to say, since Denial was waiting right outside Ryan's bedroom door. 

I don't remember when Ryan's eye contact became less. When he chose, with more and more frequency, to look past me and not at me. To choose to look at the floor or the wall rather than my face. It must have happened gradually as Denial and I continued to also look the other way because losing the ability to see inside Ryan's soul was too painful to face. At some point and time, Ryan closed the windows, drew the shades and would only allow brief glimpses into his perfectly innocent, highly sensitive, bewildered soul. Although I was no longer able to see Ryan's soul through his averted eyes, I could still feel it...with my heart and with my soul. I knew that Ryan was still in there...behind the shades.

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The lengths I went to in order to open those shades again. "Hey, Ryan, look at me...look at Mommy's eyes!", Denial and I would yell with a sense of near hysteria excitement. I would hold his battered and chipped James, the Red Engine, from his Thomas collection on the bridge of my nose, hoping that by seeing James, Ryan would see my eyes and see the depths of my love for him reflected in them. It didn't matter if I stood on my head or screamed, "A clue, a clue" while pretending to be Steve from Blues Clues, more often than not, Ryan continued to focus on anything, but my eyes. Ryan would sometimes smile at my antics and he would answer my questions and respond to me (most of the time), so I knew Ryan's averted gaze was not about shutting me out. Ryan could hear me, he could feel me, and he could see me, he just didn't care to look in my window and see my soul (some days, that is a totally understandable).

People with autism have shared that eye contact is difficult for them because they have such a hard time concentrating on what someone is saying, that it takes all of their senses to find the proper words in their brain and respond appropriately. Looking someone in the eye, is just too distracting, too powerful and too unnerving. For people with an ASD, it makes no sense to stare at someone's eyes.  Words don't come from a person's eyes, they come from their mouth. If looking at the floor helps a person with an ASD "hear" you better, why would you ask them to do anything else? Why would you yell, "Look at me!" again and again if all it did was cause stress and anxiety to the "don't care to see your soul" little boy? Now that I understand this, I have years of guilt ridden therapy ahead of me. Yeah, I know, comes with the Mom territory. 
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There were times, when I was so overcome with worry, with such debilitating fear of that A Word, that as I stood right in front of my finger flicking, anxious son, who was looking out the corners of his eyes and I would yell, "Look at me!". Which sometimes, out of fear of the crazy lady standing in front of him that sort of looked like his mommy, Ryan would look at me briefly, then all the energy, all the effort he had just spent trying to find his words went right out the window and Ryan's shades would close once again. All because of what I needed, what I wanted. A chance to see his soul that he once so willingly shared with me. 

I am not the first worried, nutsy, frustrated, misinformed mother who has shouted, "Look at me!" to their eye averting ASD child. Many children and adults living with an ASD are taught to "look people in the eye" as a way of social engagement, as a way of fitting in, as a way of looking "normal". Even though I understand that eye contact may be difficult for Ryan others do not, so it is important that he learns at least to periodically look at someone when he is speaking to them. It's funny, because now, when we try to encourage it, we have gotten exactly what we deserve. Sometimes after the words, "look at me" are kindly said, no longer shouted in a hysteria induced state, Ryan will look right at me, over-exaggerating his look by bulging his eyes as big and as wide as they will go in a sort of, well, you wanted to see my eyes, see my soul, now you can see as much of them as you need to, kind of way. Needless to say, looking at big bug eyes is incredibly distracting for me and causes me to lose my train of thought. Tit for tat. Ryan, 1, Mom, 0.

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If we are AWEnest, do any of us really want to reveal our soul through our windows...our eyes? I mean there is a lot going on behind those eyes. So, maybe these kiddos with ASD get it. Maybe seeing someone's soul is too personal, too violating, too much. Almost like putting a window in your shower stall that faces the street. Too revealing, too much. Maybe to really find someone's soul, to find out who they truly are on the inside, maybe it should take more than just a gaze. Maybe it should take time, patience, understanding, acceptance and love.

If the eyes really are "the windows to the soul", perhaps the heart is the door. The Greeks thought the heart was the center of the soul and since they gave us democracy and the Olympics, they are a credible source. We often describe people by the kind of heart they have...a good heart, a kind heart, a generous heart and this often translates into the kind of soul a person has. Maybe opening the door to someone's heart, understanding their heart, should take a little more work than quickly peeking in their eyes to see their soul. Opening that door shouldn't be so easy, after all, we are complex individuals. I know that if you peered into my eyes to find out who I truly was, without checking my heart, on days 21-28 of the month, my soul, my "essence" would be a lot darker than it is on days 1-20. My heart, however, would remain the same. We may not be able to see a person's soul through their window, because some prefer to keep their shades drawn, but, we can find a person's heart, by opening the door to our own heart. Accepting people's differences, taking time to open their door and to know someone's heart without judgement, without fear, may be just the window you need to truly see their soul. 
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No matter where you look, my boy's beautiful soul is worth the time and effort it takes to find it.


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