I will never fully understand autism because I am not autistic. To say I "get it" is not truly accurate. And this is proven to me time and again. As much as I long to get inside my son's brain to see what he is thinking, how he is feeling and how to help him when he is struggling, I will never quite understand how autism impacts his life. That is why when we have moments where he shares any or all of those things, it feels like a gift he has so graciously given to me, if only for a moment.

Just last week, there were two occasions where he really let me in and helped me to see him, I mean really, see him. One of those occasions happened when we went to see my best friend's little girl as a hyena in her first musical performance of the The Lion King.  She wanted Ryan to be there, since in her beautiful 9 year old mind he is an expert as a high school theatre kid. And he wanted to go because he loves her and loves being seen as an "expert". 

Well, the audience was loud, kids behind us were talking and kicking our seats and it was hot. Like really hot. When our gorgeous hyena asked Ryan if he liked the show he barely mumbled a "yes" and there was zero excitement in his voice. I worried  that this sweet girl, who understands autism more than most 9 year olds do, would be hurt by his lack of exuberance and quite honestly, I was a little irritated, but, I didn't let Ryan know just how irritated I was.  

The next day, I asked Ryan what was bothering him so much at the show and why he struggled to give our sweet hyena the props she was looking for and he said, "It was so hot in there and when it's hot, my brain doesn't work very well. It's really, really slow and makes it difficult to talk." Of course I felt ashamed because once again, I didn't get it. I misinterpreted his overloaded sensory system for rudeness, something I preach to others NOT to do. Sigh.

I apologized to my son. Again.

My second glimpse into my beautiful son's mind came in the form of a research project he had to complete for his English class entitled, "The Effects of Autism on the Brain". With Ryan's permission ("Please share it with everyone you know.") Here are a few excerpts of his project which he presented in front of 28 high school sophomores (he is braver than I could ever be).

"If you ever look upon a gathering of people, you may notice that there is one person excluded from the gathering, and that person may be carrying out unusual bodily functions or trying to avoid the nearby mass of people. You may think to yourself, “is that person okay?”, and neglect the possibility of that person having been diagnosed with autism.

How do autistic people view society?

1. More often than not, individuals with autism are most likely to see the world as an unstable place, full of utter chaos. They witness devastating, chaotic events, such as acts of terrorism, or loud noises and bright flashing lights, and taking the idea of the autistic brain functioning slowly, it is too much to take in at one single time.

2. Most autistic people prefer to live in a world where their lives are perfect. In society, perfection is impossible to achieve, and this is where the autistic person’s vivid imagination serves as a benefit. They can imagine that they live in a world where everyone is friendly, and there is little to no hatred whatsoever, and everything is perfect.

If you didn’t already know, I, Ryan, am also under the effects of autism. Whether or not you’d rather use the terms “individual with autism” or “autistic person”, one with autism still fits in society the way a normal, non-autistic person does. Some people who are not diagnosed with autism believe that this is not true, and that instantly gives away the fact that those people probably don’t understand what autism is. If we can start to teach people about autism, as well as solve problems that autistic people greatly oppose, people with autism can fit in better, live happier lives, and forever be considered "Different, not Less​".

His words are so much more powerful than mine could ever be because he is autistic and I am not. Which is why I have to listen, I have to not jump to conclusions and I have to keep trying to understand and accept behaviors that may be unexplicable to me, but, make perfect sense to him. I, too, wish we lived in a world "where everyone is friendly and there is little to no hatred whatsoever", but, until we do, I will try my best to accept what I can't understand and help others understand too. And even though I may blow it regularly because I am not autistic, my son knows that my love is unwavering, unconditional and unflappable, even when I am "horribly annoying and ridiculous". 

He smiled that, not quite a smile, smile. I knew he recognized her, but, he said nothing. Surrounded by the craziness that is a theatre concession stand with only a 15 minute intermission to get everyone what they need, it was a bit chaotic, but, I knew he saw her. In the madness of frantic kids trying to decide which sugary soda they should choose to wash down the equally sugary candy, I knew SHE didn't see HIM. I watched and waited, hoping he would initiate a hello, but, he didn't. Just as I was ready for my prompt, my standard blah, blah, blah, nag, nag mom comment of, "Isn't that so and so? You should say hello to her", she saw him.

And then, a huge, beautiful smile from the girl, and a hand that reached over to touch his arm. "Oh, hey Ryan! How are you?" His smile, now full blown and confident, "Hey (girl's name here). I'm good." Then the ordering of sodas and candy resumed. His smile remained and you could tell as he ordered his Sprite and Air Heads candy that even a high pressured concession stand decision was made with more happiness and confidence after that brief social exchange. 

Ryan once told me that making friends is a risk and since he's not a big risk taker, that's why he doesn't really have any close friends. At least not a friend in the way you or I, or the rest of the neorotypical world, would perceive a friend. Most of his peers are kind and friendly, but, not really "friends".

I can't say that I blame him. He is kind of right. It is a huge risk being a friend. When you make a friend you put yourself at risk of being hurt or hurting someone else. What if the friend doesn't like you as much as you like them? What if the friend hurts your feelings, lies to you or leaves you? What if you say the wrong thing, do the wrong thing and hurt your friend? It's a risky game, this friendship thing, with sometimes heartbreaking consequences.

When you have that connection with a friend, you feel their heartache when they are sad, you feel their fear when they are scared, you feel their frustration when they are angry, you feel their pain when they are hurting and you feel their desperation when they are barely hanging on. Why subject yourself to all that extra "feeling" if you don't need to, I mean, life is hard enough on your own without carrying someone else's pain, right? 

But what Ryan doesn't understand, because he has yet to really make that connection with a friend, is the flip side to the friendship coin. That although a risk, making a friend, having a connection with a friend also allows you to feel their joy when they are happy, feel their pride when they succeed and feel their love when you desperately need it.

Someone once said to me, "The deeper you get with someone, the greater the pain WHEN they let you down". Not IF they let you down, but, WHEN they let you down. I thought to myself, that's a terrible way to live. Do some people really expect WHEN and disregard that IF may never happen?

Yep. And my kid is one of them. Rejection and heartache have proven to him time and again that it's not IF, it's WHEN so why take the risk. "Because it's worth it", doesn't resonate when you took the risk once, a risk that honestly every neuron in your brain went against, and you got burned and worst yet, you had no idea why. When your friend ding dong ditched you, but, didn't have the courage, the maturity or the kindness to tell you why they walked away, the risk and the pain was NOT "worth it" because in the end, the friend is gone and you are left alone, right where you believed you should have been all along.

I have always wondered, does Ryan prefer to be alone, or is it just easier to be alone? I felt like that question was answered a few weeks ago, when I went to visit my girlfriend, and her 18 month old daughter ran to me and asked for "RyRy". When I told "RyRy" this later, he smiled and said, "I wish she were my age, then I wouldn't be so alone". (Pick heart up off the floor here). You see, babies don't know the risk that comes along with loving a friend, they love and feel with reckless abandon, with no regard to risk and so it is equally easy to risk loving them right back. 

I told Ryan the reason I think this sweet, little toddler loves him so much is because he knows with her he can be his silly, funny, self and she adores him with no risk. No prompt is needed when he sees her, he greets her with confidence and joy. Ryan doesn't feel confident enough to do that with a beautiful 16 year old girl at the theatre concession stand. In his mind, he has said and done the wrong thing, reacted the wrong way and been rejected too many times, so it's not worth the risk of "messing up" again.

I would give anything for teenagers and adults to love like a toddler. To see everyone as a source of entertainment and joy. To not care what a person wears, what a person says, or how a person responds. To accept everyone just as they are seen in the eyes of a toddler, with kindness, joy and love. 

I continue to hold out hope that one day my son will find someone who sees him the way my friend's beautiful girl does...funny, silly, kind and safe. That one day, he will see a friend in the theatre concession stand line or the mall or in the hallway at school and greet them with confidence and feel assured that the risk and the friend really are "worth it". 

I spent over an hour looking for it. I searched in the kids' closets, in the abyss that we call the basement (where the once beloved toys go to await a yard sale or a trip to Goodwill) and in our “formal" living room” (where the toys that are still occasionally played with remain). I was determined to find the object of my search. Imagine if I were as unwavering in my cleaning and organizing as I were in my searching how much easier it would be to find said object, or any object for that matter!

I refused to give up I because I knew it was somewhere.  “It” was a bag of wooden toy blocks tucked away and long since forgotten with two teenagers and a preteen in the house. My best friend’s 1 year old was coming to play and as her "auntie", I was determined to have a fun playdate and that meant finding the missing bag of blocks among the forgotten dolls, dinosaurs and Legos.

Then, finally, I saw the purple handle sticking out from under a pile of mittens that my teenage wannabe drops on the floor due to her 8th percentile height that leaves her unable to reach the mitten bin on the top shelf. I pulled it out, scraped off the dog hair and dust bunnies (sorry sweet Peaches) and relished in my victory and dogged determination at my discovery. I put the bag with the other toys I dug out (literally) and finally went to bed.

The next day, when my friend’s beautiful girl came to play, I was ready. At first her inquisitive eyes and grabby little hands were set on the various toys that lit up and made noises. She went from item to item pushing buttons and clapping each time she pushed the magic button, so proud at her amazing discoveries. My goodness she is a delight!

As toddlers are wont to do, she quickly left any and all toys behind and went to the cabinets and drawers in the kitchen. Since my days of child proofing are long gone, I wanted to distract her with something that would not poison her. "The blocks!"

I quickly went to the bag and dumped the blocks on the floor as I sang out her name. I had no idea the impact those scattered blocks all over my family room floor would have on me. In an instant, a long forgotten memory that was tucked as far away in the darkness of my brain as the blocks were in our hall closet, hit me. Hard.

The benign wooden blocks, in various colors and shapes scattered among the light up toys, took me back 12 years. There in my memory, along with the blocks, was my son, aged 3, on the floor playing. Unlike my bestie’s daughter, he was not picking up the blocks and making sweet block music, nor was he crashing down each and every tower I built, instead he was rolling all over the blocks that lay scattered on the floor.
 
Ryan would scatter the blocks on the carpet, almost making a trail of blocks, then he would roll on top of the blocks from one end of the pile to the other, seeking sensory input that his body was unable to receive in the way you and I can. From the sharp, pointy triangles, to the smooth half-moon circles, Ryan did not discriminate. Each block provided different sensory sensations to his body, and by the giggles and smiles it was clear that those sharp and smooth edges felt glorious. 

At first I thought it was funny, but, the more I watched him, the more it worried me.  I knew this was not "normal". I remember trying to redirect him. "Ryan, look what Mommy built!" "Do you want to knock it down?" But, my son, who at times appeared deaf to his name, just continued to roll away. Not caring at all about what was the "right" or “normal” way to play with wooden blocks, Ryan found his way, and his was was “right” for him.
 
My revere was broken when my bestie's daughter yelled, “wooo” as the next block tower crashed to the ground while she clapped happily at this fun game of cause and effect. Then she picked up two blocks and clacked them together (blocks are quite musical). While she enjoyed her musical blocks, I built another tower and waited, and sure enough, CRASH, she toppled the blocks to the ground again. As I applauded her victory, in what I once believed was the “right” way to play with blocks, I longed for the chance to go back in time with my young son and roll over those blocks letting him know that his way was “right” too.
 
Yeah, I know, beating myself over the head with a bag of blocks isn’t going to change what was, but, those blocks acted as a reminder to allow my son to “play” in a way that is comfortable for him. For example, my suggestion to have an end of the year pool party for the cast in the musical as a way to increase his social opportunities, may seem “right” to me, but, it clearly does not seem “right” to him. He has no plans of playing that way. There are other ways to engage him socially without making him feel nervous and overwhelmed.
 
As a parent loving a child with autism, there is a fine line between showing your child what is “typical” and making them feel and be someone they are not.  Just like I crossed the line with those stupid blocks all those years ago, I know I have crossed it many, many more times since then. I hope that my son knows that just like blocks don’t come with instructions on how to play “right”, parenting doesn’t come with instructions either and sometimes we get it wrong.
 
Over the years, my son and I have taught each other how to play and neither way is “right”, sometimes, how we play is just different. My bestie’s beautiful girl may have played with the blocks just like I expected her to, however, when she climbed on top of the little toy table (which I also found in the bowels of my basement) that I set out for us to color on, I couldn't help but smile at the irony. This adorable neurotypical toddler did not play with the table "right", after all, tables aren't for standing on, however, climbing on top of that table felt “right” to this little daredevil more than scribbling with a tasty crayon she'd preferred to chew on than draw with. And in her mind, and mine, she was not wrong.

"Play:  engage in activity for enjoyment and recreation rather than a serious or practical purpose."

Yep. Guess I missed that twelve years ago.

I see their looks. I see their stares. I see their smiles bordering on a smirk. I see their patronizing high fives. Sometimes, I wish I had a blindfold.

I hear their voices. I hear their silence. I hear the way they speak to him as if he were a young child. Sometimes, I wish I had ear plugs.

I feel my sadness. I feel my anger. I feel the ache deep in my heart. Sometimes, I wish I had no heart.

These feelings often sweep over me, and settle on my chest, directly over my heart to the point of suffocation, but, then, the feelings go as quickly as they came leaving me to breathe easy once again. Anymore, these moments and these feelings are few and far between, but, when they come, they leave a scab that I tend to pick at for days until eventually the scab heals with just a small scar that is visible only to me.

It was a hot summer day, in the oldest public building in town. A church, built in 1825, which meant, no Wifi and no air conditioning. A group of teenagers gathered at the front of the church sitting among the pews giggling, chatting and warming up their voices. At the end of the pew, against the wall, sitting alone and seemingly unaware of the buzzing activity surrounding him, sat my son, Ryan. Ryan sat quietly looking over his music preparing for the day's performance while I almost vibrated out of the pew. His sensory system, which is often so heightened, seemed unaware of all the buzzing activity going on around him. In fact, for a change, it was not my son's sensory system on edge, it was mine. 

It wasn't Ryan who wanted to bolt out that old church door to escape the feelings that overwhelmed him, it was me. As I sat in the church, with little to no air moving, my chest felt heavy. I wanted to run out of the room with my old friends Denial and Clueless, who had slid in next to me on the pew when I wasn't looking making the hot church feel even closer, to escape what my brain and my heart were feeling. So consumed with my watching, waiting and worrying for what had always been, there may have been a few moments that I missed what really was.

As parents continued to arrive and the temperature of the church continued to rise, I felt my heart beating in my chest and a trickle of sweat began forming on my brow. I watched, waited and hoped with anticipation. Would one kid talk to him? Would one kid see him? Would he talk to one kid? Would he see one kid? After all, he just spent a week with these kids at chorale camp so it was reasonable for me to get my hopes up, right? Nothing. Not even a nod, a hello, or an acknowledgement...on either side of the pew. And although my heart was pounding and my sensory system felt like it was on overdrive, Ryan looked happy, content and fine. As always, it was my problem, not his.

Once the performance began, once my son stood shoulder to shoulder with the rest of the chorale ensemble in front of the non-air conditioned church, he blended in with the others. He did not stand alone, he did not appear "different". There was no aloof stance, there was no awkward smile. There was just the music and his voice. Suddenly, I felt my heartbeat slow down and the church no longer felt so stifling.

Within the first few notes, the tears began to fall. Not his, mine. He immediately looked my way, seeing no one but me, and once he saw my smile, once he saw my tears of pride, his smile and his tears matched my own. You see, we have sat in many rooms together, the two of us, where no one saw him like I did. Where no one heard him like I did. Where no one felt him like I did. However, on this day, when his beautiful voice bounced off those church walls, I believe they all saw him, heard him and felt him as I always have. I had waited for that moment for a long, long time. Funny thing is, I don't think Ryan has.

As he finished his song, there were smiles, there were high fives, and there were "good jobs". Even after all that, a part of me still worried that their smiles, their high fives, and their "good jobs" may not have been sincere, that they may have been a bit patronizing because they saw "different", but, when I watched my boy take his bow then fight back his own tears of pride, I realized that what matters most to Ryan is how sees, how he hears and how he feels about himself. Ryan spends little time concerning himself with how others perceive him. A lesson we could all learn from him.

Had I worn my blindfold, had I brought my ear plugs, had I removed my heart, I would not have seen him, heard him or felt him and there is no worry great enough and no pain deep enough, worth missing that. As for their smiles, their high fives, and their "good jobs", they may not have been insincere or patronizing, but, even if they were, I need to take a lesson from my son and recognize who and what really matters.

Once again, Ryan showed me, it is my problem, not his and it is a problem I believe he has already solved.

I grew up across the street from what I deemed my "second family". This family built a house right across the road when I was four years old. My family had five girls, their family had three girls. We were never at a loss for doll babies, Barbies and tea cups. I practically lived at their house, when they weren't living at mine.

Even though I was young, I remember the first time I met what would become my "second family" on their grandparents' farm, which was "up the lane" from my house. As I have aged and my memory has been inundated with Spongebob's cackle, Dora's Spanish lessons, and teeny bopper show laugh tracks, I don't remember too many details of that first meeting all those years ago. Long forgotten are such specifics as what the girls were wearing, if they had lost any baby teeth yet, if they were nice, shy, or funny, but, one memory that is still engrained in my aging brain, is the image of their father. Yes, even after years of Spongebob, Thomas the Tank Engine, Dora, and the Teletubbies, my brain can still see him on the wooden porch smiling and sitting...in his wheelchair and I'm sure like any child, I stared. 

Although I had been raised properly and told not to stare at people's differences, I'm sure I did. It was the first time I had ever seen anyone missing limbs and in a wheelchair and like most children, I did not do everything I was told. Sadly, even though adults know better, sometimes they don't do as they are told either. And sometimes their words, their actions hurt.

My neighbor was a war hero who lost both legs in a trench in Vietnam. Prosthetics have come a long way in the past 40 years. Back in the 70's there were no fancy, high tech, bionic looking legs that could be covered with a pair of pants and a matching shoe, so, many disabled vets returned home from Vietnam in wheelchairs. Their differences, their "disabilities" visible for all to see.

Even as a child, it didn't take me long to realize that there was so much more to my neighbor than his wheelchair. His disabilty paled in comparison to his abilities. After awhile, I no longer saw the wheelchair, I only saw him.

Perhaps that experience at such an early age taught me to look past my son's autism, past his "disability" and see him. Trust me, I'm perfectly aware that an autism diagnosis, a pervasive developmental disorder, is not the same as a physical disability. That's like comparing apples to oranges, but, believe it or not, some folks like to compare. They can't tell the difference between an apple and an orange, or at least they don't care enough to look past the labels and see anything other than two round fruits. So, before you start blasting me about comparing my neighbor's struggles to my son's struggles and telling me "that's like comparing apples to oranges", well, you are preaching to the choir. Unfortunately, not everyone is sitting in the choir with me.

Not long ago, when I was discussing Ryan's autism and a particularly bad day he recently experienced, someone (who happens to be familiar with the physical difficulties a person in a wheelchair endures, but, takes little time to understand autism), said to me, "I don't really feel sorry for Ryan. At least he's not in a wheelchair." Wow. 

I was initially dumbfounded and mumbled something like, "you can't even compare the two". Looking back, I wish I would have had an apple or an orange (wouldn't have mattered at all) to shove in their mouth and said all of this....

First and foremost, Ryan does not want anyone's sympathy or pity. Most days he is happy in his own skin. Second, just because Ryan's disability isn't visible, just because you don't see it, doesn't mean it doesn't exist. This invisible disability doesn't make Ryan's difficult times any easier or his heartache any less just because you can't see it or because "he isn't in a wheelchair". Apples to oranges.

Yes, Ryan can easily jump up and sprint down our stairs (he actually sort of crashes down the stairs) when it's time for a few Vanilla Oreos without any special accomodations in our home. However, Ryan does need accomodations when it comes to learning at school because although he "looks fine" his brain processes information differently.

Ryan has two perfect working legs that can walk, run, and jump. He is strong and more than capable of running away from the bully in the school yard. Yet, when Ryan was being bullied for two years, due to his language deficits, he was unable to find the words to tell me.

Although Ryan could physically run up to a group of friends on the playground and say, "Hey guys, want to play some basketball?", he doesn't and chances are pretty high that he won't. Communicating with friends and initiating a conversation is very difficult due to the way autism impacts his social skills and his social awareness.

Even though Ryan is big enough and strong enough to knock over several defensive lineman and could physically become an outstanding football star, he won't. The pads, the equipment, the shouting and even the grass are too much for his overloaded sensory system to handle.

Yes, autism does make some things more difficult for Ryan, but, there are so many more things that come quite easily to him. I know that, Ryan knows that and we are both incredibly grateful. We both recognize that there are others who have struggles far greater than Ryan. We do not compare apples to oranges.

An autism diagnosis may be a disability that you can't see, but, for Ryan, that's ok because just like anyone with any type of disability, be it an apple or an orange, Ryan wants you to accept him, to see him and to see his abilities and not his disability.

Yes, sadly, sometimes even adults "don't know better" and they say ignorant and hurtful things. I'm sure just like Ryan, my neighbor had heard his fair share over the years. 

And although my neighbor may have spent the past 45 years with a disability which required a wheelchair to get through life, that did not keep him from living. He may have gone through most of his adult life unable to stand on his own, but, his abilities, his successes and his happines stand for themselves. The proof lies in the faces of his beautiful children, grandchildren and great grandchild. I bet none of them see the wheelchair either.

When it comes to disabilities, comparing one disability to another is truly comparing apples to oranges. An apple is an apple. An orange is an orange. If all you ever concern yourself with is what those fruits are labeled and how they look on the outside without bothering to take the time to see what's on the inside, then you will miss the incomparable essence of them both.

Back in the old vaudeville days, the section of seats way in the back, (aka, the cheap seats), where typically your rowdy, rude, hecklers sat, was known as the Peanut Gallery. Maybe these patrons were annoyed that they couldn't see the performers or the stage well. Maybe they were envious of those who could afford front row, orchestra seats, or maybe they were just rude, judgy folks whose ignorance allowed them to take pot shots at people trying to do their best. Whatever the reason, The Peanut Gallery patrons had a reputation for being critical and rude. A word of advice for those folks planning the Grammy's for next year. You may want to seat Kanye West in the Peanut Gallery, where it will take him much longer to storm the stage and embarrass someone (mostly himself) with his rudeness, heckling and ignorance. 

Since the Peanut Gallery seats typically had the worst view of the stage, it only stands to reason that the seats would be the cheapest seats in the house and that those sitting in the cheap seats, would be sold the cheapest snacks. Yep, you guessed it, those folks sitting in the Peanut Gallery were sold....peanuts. So, not only did these rude hecklers shout at the performers on stage, letting them know what a horrible job they were doing, every now and then, these Peanut Gallery patrons would chuck a peanut at one of the performers on stage. I have not had many opportunities to perform for a crowd on a live stage, but, none the less, I've had a peanut or two thwap me in the head over the years.

It's kind of ironic that the cheap seats in the Peanut Gallery are where most of the boos, heckles and criticism come from. After all, these seats are the farthest away from the stage, with the worst view of the performance, so with such a limited view, how can the Peanut Gallery patrons be so quick to judge? These Peanut Gallery patrons do not have an up close and personal view of the performers and typically, when seated in the cheap seats, they have a hard time taking in the entire scene on stage. Even with such a limited view, those in the Peanut Gallery criticize and heckle the loudest. I'd like to say that even if the boos and heckles came from the highly coveted box seats, it might be more acceptable because after all they have the best view of the stage, but, unless, you are on the stage, unless you are in the scene, it's probably best to keep your heckles, your boos, your judgement, and your peanuts to yourself. 

If you are a parent loving a child or an adult with autism, chances are good that you have had a peanut or two chucked at your head by someone in the Peanut Gallery. Typically, these peanuts are thrown by someone with a very limited view of the stage, a very limited awareness of the characters in the scene and someone who has never been on the stage with you. Sometimes, this heckler may be someone close to you, someone who may even have a better seat, a better view, but, this heckler still thinks your performance deserves a peanut or two to the head. Even if this someone has the best box seat in the house, and has a perfect view of you and your child, chances are good that they still have no idea what goes on behind the scenes, and even if they did, they would probably still throw peanuts at your head because they have never been on the stage. It's easy to be critical while sitting comfortably in the audience with little to no idea how much work has gone in to making the scene go off with or without a hitch. My advice? Practice throwing peanuts to score a good head shot to such rude audience hecklers.

When Ryan was younger, there were many snide remarks about our parenting from the Peanut Gallery. I would love to tell you that my aim was great back then and that every heckler wound up with a peanut shaped welt on the side of their head, but, sadly, I was not throwing peanuts yet. Back then, the hecklers got the best of me as I stood on the stage, the glow of the lights bathing me in self-doubt and fear. I think the hecklers could smell my fear as I stood on a stage, acting in a scene that felt surreal even to me. Autism was a new character to me, a character I had never shared a stage with before, so trying to find my place on the stage, trying to make the scene work, was scary and confusing, which sadly, only fed the fear and increased the heckling.

Back then, Denial, Guilt, and Clueless were on stage with me, and trust me when I tell you, we felt each and every peanut chucked at us from the patrons sitting in the Peanut Gallery. When hecklers in the cheap seats, with such a limited view, would witness a full blown sensory meltdown, that to the ignorant audience member looked remarkably like a tantrum, heckles like, "if he just had a little more discipline", or "if there were more time outs, more consequences, more grabs by the shirt collar, maybe you wouldn't have this problem" along with other critical remarks, felt like a peanut shooting machine gun against my transparent skin. 

Sometimes, even the quiet ones, in the good seats, without so much as a boo or a hiss out of them, would look at me and I felt the peanuts pelting off my head. You see, unlike Ryan, I can easily understand emotions conveyed from someone's eyes and I knew and felt the look of "Well, maybe if you just didn't give in to him all the time....". I recognized the condescending smile to my face and the eye roll to my back. Of all the heckles, of all the looks, my personal favorite heckle would come at meal time. Ryan's palate is dictated by the texture of every piece of food he puts in his mouth, so when I'm told by a heckler that, "He will eat it when he's hungry.", I kind of want to shove a handful of peanuts in their face....hard.


Even when I was on a stage filled with others, there were times, that I felt so terribly alone, questioning every move, every line and every choice I made and this made the hecklers' words, and their peanuts, feel more like a direct shot to my heart, than to my head.

Now, as a seasoned performer, I have learned over the years that even though I felt alone on that stage, I wasn't. I may not have known the other cast members personally that I was sharing a scene with, but, they knew what was going on in that moment on stage, and the work that went on behind the scenes to make the performance as successful as possible, regardless of what those in the Peanut Gallery may have observed. There isn't a parent loving a child with autism that I have met that hasn't felt heckled by someone in the audience, someone not on the stage, who has criticized their performance and had the occasional peanut chucked at their head. 

We may have all had that initial fear as we stepped on the stage with autism, we may have all felt the sting from each and every peanut, but, in time, we have learned that this is our stage, and how we act out each and every scene is for our child, not for the audience. Sure, every now and then a peanut thwacking me on the temple still hurts, but, my skin has gotten thicker with time, experience, and awareness. 

The folks in the Peanut Gallery, who have such limited views of the scene being played out before them, either due to a lack of awareness or due to a lack of concern, will always be ignorant, rude, and careless with their heckles, boos, and peanut tosses. It took me a while, but, I have learned that even if I were on that stage receiving an Academy Award for my performance, there will always be someone who thinks I don't deserve it, there will always be a Kanye West making me doubt that my performance is worthy of such an award. The difference now is that I am the one handing the Peanut Gallery patrons their cheap bag of peanuts to throw at will because now I know that the only person whose opinion really matters when it comes to my performance, is the one who has been standing on the stage with me all along.

Two funerals, three deaths, four days. No, that's not a clever name of a Hollywood movie and no, Hugh Grant was not there. "Two funerals, three deaths, four days" are six words that describe a crappy week for some people I really love.

No one likes to go to funerals. Funerals are sad. Funerals are depressing. Funerals are a reminder of our own mortality and how fleeting life really is. Even though we don't like to go to funerals, even though we don't want to go, and even though we try and contrive any excuse possible as a way not to go, most of us don something black and show up anyway because it is the "right" thing to do.

We may have ongoing battles in our head as to whether or not we should attend the funeral. "Well, I didn't know him that well, but, I use to work with his wife ten years ago." Or "I can't go, I have to ______ (insert any word here from "work", to "skydive", to "wrestle alligators") and the family probably won't expect me to go anyway." And my own personal, I hate funerals go to, "I think it's just for close family and friends.". Whatever battle wages on inside my head, "supporting the family" usually wins out for me, and off I go, dread in my heart, tissues in my hand.

As I attended my second funeral in four days last week, I watched the Funeral Director who has officiated every funeral I have attended since I was a child, and I wondered, how does he do it? Such sadness, day in and day out. Grieving families and friends tending to matters their hearts want nothing to do with, but, handling the affairs anyway because their brain insists they must. I guess Funeral Directors recognize what most of us try not to think about, that death is a part of life. Death is inevitable. Death happens to all of us. I'm not implying that Funeral Directors have a lack of compassion, in fact, to do that job, I think you would need to be very compassionate, but, I think you also have to see death in a much more concrete, literal way.

I believe like a funeral director, Ryan gets the black and white version of death. Death is a part of life. Death is a part of nature's life cycle. Death is inevitable. Death is gone. The ambiguity, the abstract ideas of death, well, that is much harder for Ryan to understand.

Last week, I had to share with Ryan the sad news of the death of our dear, kind, next door neighbor who always happily celebrated Ryan's triumphs with me and frequently eased my worried mother's heart, at his setbacks. Through my tears, I watched as Ryan's brain took in the information then he quietly laid his head on his knees. As tears pooled in the corner of his eyes, there were no questions, there were no words exchanged, there was just quiet understanding.

Later, when I asked Ryan if he wanted to attend the funeral services, with total panic and horror glimmering through his own watery eyes, he yelled, "No, I can't handle it Mom. My body can't handle it. Please don't make me go.". I calmed Ryan down and assured him that he did not have to go. Relief washed over his face, as his body visibly relaxed. Ryan told me, in no uncertain terms, that he decided he would "never attend another one of those for the rest of his life." AWEnestly, who can blame him? Wouldn't that be the choice we all would make, if it were as simple as not wanting to go?

Understanding and processing death is difficult for all of us. When you add the black and white, concrete, literal thinking of someone with autism, processing and understanding death is even tougher.  

In the movie, Temple Grandin, produced by HBO, Temple (played AWEsomely by the fabulous Claire Danes), asks the question most of us at some point and time have wondered, "Where do they go?". After seeing her favorite horse at boarding school die, Temple asks her teacher, "Where do they go?". The question comes up again, after watching cattle die at a slaughter house, "It was here, and now it's gone. Where does it go?". And yet again, at the funeral of her beloved teacher, Temple asks her mother, "Do you know where they go?". To which her mother says, "No". At that point, Temple decides to leave the funeral because in her concrete, literal thinking way, she declared, "I said goodbye when I saw him. He's not there. I've got him in my mind.". What a perfectly AWEsome, yet literal way to process death.

Many believe that people with autism do not feel empathy or sympathy. I have watched my son cry for people and pets who have died, and I have watched him shed tears and try and protect those who are left to live on, heartbroken in their grief. Ryan feels sympathy, how he displays his sympathy may not be what you expect though. 


Ryan's literal mind struggles with terms such as, "passed away" or "lost" and overhearing such words, in what appears a cold, rude manner, Ryan may say, "They are not lost, they are dead.". "Passed away" is ambiguous and "lost" is not "dead". These words surrounding death, make no sense to him. 

Although many tears are shed at a funeral or memorial service for someone who has died, there often are smiles and laughter over good times and memories being recalled by loved ones. That laughter may confuse Ryan since after all, death is gone, death is final, death is sad, so why are people laughing? The emotions that go along with grief can be confusing for someone who struggles to process the emotions of others and who struggles to read the various facial expressions and body language that are part of such an emotional time.

The two funerals Ryan has attended, I worried. I worried in Ryan's confusion to understand death, that he may say something inappropriate, like "Where do they go?". I worried that Ryan may behave in a way others would deem rude or disrespectful, like scripting a television show or video game in a silly voice rather than offering heartfelt condolences in his Ryan voice. There is a lot of hugging and touching at such a sad time, and Ryan does not care to be hugged by strangers. All of these things could lead others to believe that Ryan was demonstrating less than funeral appropriate behavior.

You see that confusion, that type of behavior, those comments may be acceptable if demonstrated by a young child, but, since you can't "see" autism, when such "inappropriate" or "wrong" behavior is displayed by someone who is "old enough to know better", it's hard as parent not to show others judging Ryan how "wrong" they are, even at a funeral. This is why I worried. Fortunately, at both funerals, Ryan proved me wrong and did his best to be patient, kind and sympathetic.

For many people when a loved one dies, religious and spiritual beliefs come into play, and these belief are equally as vague and abstract as the concept of death and dying. To try and explain a soul or heaven, something such a visual, literal person can't "see", is hard for them to understand. "If Jesus came back to life, why can't so and so?". "If God loved so and so, then why did He let them die?". Questions difficult to answer, answers difficult to understand.

I may not be able to answer all the questions that are circling in Ryan's brain when it comes to death, and I may not ever be able to answer the big question, "Where do they go?" in a way Ryan can fully understand, so rather than focus on where they "went", I try and focus on where they "are". I try to explain to my visual boy, with his photographic memory, that where those we lost are, is in our mind. We can still see them through pictures our brain took when we think back to a happy memory we have. And recalling those pictures, helps us miss them a little bit less. As I explained this, I watched my son's face light up, recalling the pictures he has stored in his amazing brain, of our beloved neighbor who always greeted Ryan with a warm smile, regardless of how many times she was ignored in return. I watched the confusion and sadness slowly fade away, being replaced with understanding and joy....and a picture in his mind.

I am ill-equipped to answer, "Where do they go?", however, I am equipped to answer where they "are". I can remind Ryan of all the places our friend or family member had been, of all the places we went together and of the all the good times we shared. I can assure Ryan that no matter how much time passes, we can always "see" them in the pictures lovingly stored in our mind and "feel" them in the love we have in our heart. Isn't knowing where they "are" comforting to our grieving, sad heart? 

As with so many things in life, even when it comes to death, trying to help Ryan and his AWEsome brain understand something so troublesome, I wind up being the one learning from him. 

Well, it's the week all of us middle age'ish (vomit) housewives have been waiting for since we turned the first page of Fifty Shades of Grey and wished our best friend got the flu and we were the one who stumbled into Christian Grey's multi-billion dollar empire. In just 24 hours, all of our Christian Grey necktie and Red Room of Pain fantasies (or horrors, depending on your perspective) come to life on the big screen in Fifty Shades of Grey, the movie. And while we sit with our girlfriends giggling and critiquing how "Jamie Dornan is soooo... not Christian Grey" or how we could have totally been a much better Anastasia than Dakota Johnson, our husbands will be anxiously awaiting our return from the theater. And depending on just how far the Motion Pictures Associations of America decides to go with this R Rating and how far your imagination can take you, you might be just as excited to get home to your man too, even if he doesn't own a helicopter....or a flogger (I don't want to know).

Don't worry folks, this blog post does not need an R Rating, nor does it come with a blindfold, riding crop or handcuffs (Sorry, I hope you are still reading) because although I loved reading (and I'm sure I will love watching) all about "fifty shades of f***ed up" Christian Grey and his various shades of painful pleasure, this is a PG Rated post, with zero shades of gray.  

Christian Grey may have been able to use his billions, his charm, and his charisma to blend black and white and come up with fifty shades of gray in order to blur the lines between right and wrong, good and bad, acceptable and unacceptable, pain and pleasure, but, I can AWEnestly say that Ryan, and many people living with autism, would find Christian's world of gray more disturbing than his Red Room of Pain. 

Gray is confusing. Gray is neither black or white. There are various shades of gray and these shades of gray change depending on various factors, such as lighting, point of view, and interpretation.

Ryan will never see the fifty shades of gray like Christian Grey does (Thank God. Although, allowing his parents to ride on his private yacht would have been nice.) because Ryan prefers a world that is black and white. Black and white is easier to understand. It's either black or it's white. Right or wrong. Lie or truth. Win or lose. Gray is left to interpretation. Gray is vague. Gray is not black OR white, it is black AND white. 

For Ryan, gray is baffling. Not being clear on what is right or wrong in a situation can make Ryan very anxious. Considering multiple perspectives, various options, and different points of views from situation to situation is extremely confusing. Ryan's black and white thinking makes him feel isolated in social situations where the world is filled with shades of gray. 

Many social rules vary from one situation to the next. Since autism already makes reading facial cues, interpreting body language, and understanding the idiosyncrasies of social language confusing, Ryan holds on to black and white thinking, because black and white makes perfect sense. Unfortunately, the reality is that most social situations are not black and white. Most social situations have various shades of gray, which makes interpreting those situations and responding in a socially appropriate way difficult. This struggle to understand the various shades of gray is why, most days, Ryan prefers to be alone in his black and white world. There is less room for error, less room for gray.

It's easy to understand why black and white makes more sense than gray. 

Truth or lie. "What do you mean it's okay to lie "sometimes"? Isn't a lie, a lie whether it's white, black or purple?"

Following the rules or not following the rules. "How can you bend the rules? Rules don't bend. It's a rule and rules tell you how to play the game, rules keep order, rules keep everyone in check, rules help determine what to do next, so you can't break rules or bend them." 

Helping or cheating. "Having another roll of the dice or taking another turn, is not helping someone learn how to play the game, it's cheating." (Chances are good if you "cheat" while playing Monopoly with Ryan you don't have to worry about being "flogged", you may, however, wind up with a Monopoly playing pieced embedded in your forehead.) 


Winning or losing. "There is no tie. Someone must win or lose. There is always a winner!" And God help you if you are the winner and Ryan is the loser. Just a heads up.

Right or wrong. Black or white. Zero shades of gray.

As black and white as the world may seem to those living with autism, unfortunately, I believe that more often it is the neurotypical folks who could benefit from a few shades of gray. Many times, those of us without autism see the world of autism in black and white. We see us and them. We see our way and their way. We see our world and their world. We see right and wrong. We see weird, not different. Very rarely, do we neurotypicals see the blurring of the black and white. We struggle to see the various shades of gray that might just help us understand that many people living with autism believe that they are in fact typical, and we are the ones who are not. 

Think about it, logically, black and white thinking makes sense. After all, a lie is a lie regardless of what color it is. Rules are made to be followed, not bent or broken. You either cheat or you don't. You are a winner or a loser, not a "tie-er". You are right or you are wrong. Black or white. Makes perfect sense.

I recognize that there are more than fifty shades of gray in the so called neurotypical world and in the world of autism, and trying to see everything in gray, black or white would really diminish the colors of all that we see in both worlds. Perhaps, in true Christian Grey form, we should throw on a blindfold and remove our sense of sight and try to feel what it might be like living in a black and white world. Perhaps removing our sight, will enhance our ability to feel and maybe then we neurotypicals will "see" that "we" may have it wrong and "they" may have it right. 

Perhaps somewhere between black and white is a shade of gray that helps us all understand that our differences make us who we are and that those differences are not right or wrong, good or bad, normal or abnormal, they are just various shades of gray. And even though it's hard for Ryan to see the gray, he is working on it. I just hope that the rest of the world works on it too. 

Ryan may not be able to see fifty, forty, or even ten shades of gray, but, if he can see one, if he can try and see your perspective, your point of view, your "gray", than hopefully you can see his too. Hopefully, you can see and accept this shade of gray without having to be flogged, tied up or whipped. Unless of course you are into that sort of thing (I don't want to know).