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A Spectrum of Colors

3/26/2015

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Another dreary, cold winter has ended and spring has technically arrived, even though my old bones still don't feel very spring like. I swear the winters in Pennsylvania get longer and longer every year. In order to recover from Central PA Seasonal Affective Disorder, I am praying for a brilliant, sunny spring, with just enough rain to celebrate that April showers bring May flowers. Along with celebrating the birds singing, the flowers blooming and the grass turning green again, my family celebrates the multi-colored puzzle pieces that represent Autism Awareness which pop up as frequently as tulips and daffodils this month. 

April is Autism Awareness Month and although once upon a time, April showers bringing May flowers was all this winter hating mother cared about, now, that I have a 1 in 42 boy with an Autism Spectrum Disorder, April has a whole new meaning to me. 

Upon first learning of my Ryan's diagnosis, I felt like the light had been sucked from my world, and I was surrounded in cold, rainy darkness. It took time, patience, acceptance, and understanding for me to pull myself out of the rain and find the sun again. And just like spring, when the dark clouds finally roll away and the world begins to wake up to a feeling of new, I awoke to a world I never knew existed, yet couldn’t imagine my life without.

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The diagnosis of Autism, Asperger's Syndrome and PDD-NOS now falls under the umbrella term of Autism Spectrum Disorder, or ASD. Autism is considered a spectrum due in part to the wide degree of variances from one person living with an ASD to the next. ASD effects each person living with the disorder in a variety of ways. Each person as “different” as the varying colors of the light spectrum in a spring time rainbow. 

These “differences” make people with an Autism Spectrum Disorder as brilliant and beautiful as all the colors of the rainbow. Think about it, how boring would a rainbow be, if it were all red or all blue? It’s the variations, or the differences in color that make rainbows worth slamming on your brakes in the middle of a highway and risking your life for a photo to share on Instagram.

As a mother of a child with an ASD, I once feared “different”. I had trouble seeing the beauty of different because I wanted “same”. I worried that different would mean hardship, struggles and lack of understanding. Sometimes that fear was for my son, and sometimes that fear was selfishly, for me. I didn’t know different. I didn’t understand different. I feared different. Maybe, an all blue rainbow wouldn’t be so bad after all, if it meant “different” became “same”.

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It took time to understand that different wasn’t bad, different wasn’t less, different was just….different. Once I stopped fearing different and tried to understand and accept different, my son showed me just how beautiful different could be. Different can memorize every country in the world in just three days. Different can hear a bird sing outside and mimic that bird’s song in perfect pitch. Different can love in a way that same never could. Different is AWEnest, real, and innocent. Some days different is harder than others, but, I would still never trade all the different colors in the rainbow, for boring, monochromatic white. 

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Just like I can’t fully explain the variations of an Autism Spectrum Disorder, I cannot explain in scientific fashion how light reflecting off the back of a water droplet creates varying colors in a rainbow. I have a basic understanding that rain + sunshine = rainbow, but, I don’t fully comprehend all that prism light bending, refraction stuff. However, just because I can’t explain why purple is at one end of the rainbow and red is at the other end, doesn’t mean I can’t appreciate that the variations between the colors is what makes a rainbow beautiful.

Although after a grey, dreary winter, I would love a spring time full of only sunny days, but, without rain, there would only be boring white light. Without rain, there would be no spectrum of colors. Without rain there would be no differences. Without rain, there would only be same. To appreciate the colors, there has to be rain.

So this April, if you see a rainbow, don’t go rushing to the end to find the elusive pot of gold, sit back and take in the spectrum of colors and appreciate each different color. And while out shopping for your spring time annuals, if you see “different” at the checkout line next to you, give the mom a smile and let her know that you understand that some days different is hard, some days different is heartbreaking, some days different is beautiful, and some days different is just, well…different.

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The boy who taught me how beautiful different can be.
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No Comments From the Peanut Gallery

3/18/2015

4 Comments

 
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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.

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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.

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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.

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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.

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Taking his bow, as he should.
4 Comments

My View From the Spectrum

3/9/2015

2 Comments

 
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Well, what do you see? White and gold? Blue and black? Pink and gray? Zombies retreating since clearly we have no brains to eat which is evident by the amount of time we spent debating which colors we see when we look at #thedress? AWEnestly, no wonder aliens have landed on our planet and never returned. I'm sure extra-terrestrials think that if humans can cause social media to explode over the color of a dress, we really are a race just NOT worth conquering.

Although, clearly, #thedress is gold and white, I'm not here to argue or belabor the point because quite frankly, I'm so over it that I kind of wish an alien would beam me up so I can stop reading about it, hearing about it and (please accept my apology) blogging about it. However, before I depart with little green men and take up residence on some planet light years away (I sure hope they are more advanced than Pennsylvania and they sell wine in their local food mart), I have to admit that #thedress got me thinking. According to what I've read by so called, "experts", it seems to me, that depending on how you see something, really influences what you see.

While perusing social media last week, not only did I discover that if you see #thedress in white and gold colors that means you are more prone to loving Justin Beiber (seriously aliens, just beam me up now), I also discovered while reading two very different posts on autism (having NOTHING to do with #thedress, say hallelujah), that people tend to see an autism diagnosis in varying colors too.

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The one post was written by a mother who has a severely autistic child and she was on a bit of a rant about people like me. People who go on and on about acceptance, the benefits of neurodiversity and "romanticizing" an autism diagnosis when her child is unable to speak, unable to communicate his basic needs, and will never live independently. This mother who sees her son suffering day in and day out in both emotional and physical pain wants her child to be accepted, but, more than anything, she wants her child to be cured. She loves her son, but, she hates autism, and AWEnestly, who can blame her?

The other post I read, was written by a young man living with autism. Clearly, this man has his own struggles with autism, but, he is able to communicate his basic wants and needs while advocating for acceptance and neurodiversity and being somewhat offended by those who want his autism cured. In this young man's mind, he does not see his autism as an illness, a disease, or something that needs cured, he sees autism as a different way of thinking, a different way of being and all he wants is for the world to see his side too. This young man living with autism does not see the need for a cure because in his mind, taking away his autism means taking away a huge part of who he is, and he is quite happy being exactly him.

White and gold, blue and black. How you see it, influences what you see and when it comes to autism, how and what you see, all depends on your view from the spectrum.

Just like I see #thedress as being white and gold, I see an autism diagnosis as a need for acceptance, support, and understanding. For my son who is mainstreamed in all his classes, who can communicate his basic needs and wants, but, who is isolated due to his rigidity, his scripting and at times, his odd behavior, I preach for acceptance. I beg for a world where neurodiversity is not seen as something bad, but, as something good. I may "romanticize" these differences, but, my view from the spectrum allows me to see my son as not someone who needs cured, but, someone who needs acceptance and understanding.

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For a mother of a 25 year old non-verbal child, her view from the spectrum is very different than mine. She sees a world where a cure for her son's autism is essential. A cure for a child whose sensory system is so overwrought that the sound of a car horn several houses away is so horrific to her child that she is virtually a shut in, unable to take her son out, unable to leave her son alone. This mother may hate the impact autism has on her son because her view from the spectrum is one of pain and suffering. And what parent wouldn't want her child's suffering to end? This woman begs for a cure, and I can't blame her.

Two very different views. How something is seen is determined by what is seen. 

My view from the spectrum allows me to see how much Ryan struggles to make friends, and as a mother, it feels like pouring salt in an open wound. My view from the spectrum also allows me to see how difficult language is for Ryan and how that impacts his communication which is why most days, Ryan is more comfortable being alone than he is socializing with others, even when those "others" are his family. My view from the spectrum allows me to see when the touch of paper, the sound of an alarm, or an unexpected touch causes extreme discomfort for Ryan and sends his fight or flight response into overdrive pushing others even farther away. My view from the spectrum certainly enables me to see that for my son living with autism, sometimes, being "different" is hard.

Here is the clincher. Just like I see white and gold in #thedress, along with the negatives of an autism diagnosis, I see the positives. I see a boy who has perfect pitch and I have no doubt that autism has allowed him to hear and feel music differently than those of us without autism. My view from the spectrum allows me to see how Ryan interprets the world so much more literally than most of us, and how AWEnestly, his interpretation makes so much more sense than ours. I also see from my view a boy who feels and believes in things so passionately, that I think if most of us felt and believed like Ryan did, the world would be so much easier to understand.

My view from the spectrum also increases my worry that others who have a very different view from the spectrum will cause my son to see his autism as something that should be fixed or cured, which would cause a lot of self doubt and low self-esteem in a young man who is utterly fabulous. Exactly. The. Way. He. Is. 

I would never want Ryan to think for even one second that he is in need of "fixing", "curing", or "treating". I want Ryan to understand that yes, autism makes some things more challenging, but, that an Autism Spectrum Disorder alone is not what defines him or what predicts his future. So, yes, if I "romanticize" Ryan's autism diagnosis by pointing out all the positive attributes autism brings into his life and by advocating, "different, not less", and by preaching acceptance and neurodiverstiy all in an attempt to make Ryan feel loved and understood, then yes, I am the next Danielle Steel with a romance novel coming soon to a Barnes and Noble near you.  Yet, I understand that those who have a very different view from the spectrum may want to burn my upcoming romance novel right at my feet.

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Whether it's the color of #thedress or an autism diagnosis, how you see something really influences what you see. I hope that my view from the spectrum does not offend others because how I see autism differs greatly from how they see autism. 
What we see, may be as different as gold/white and blue/black, but, I would like to believe that regardless of our view, regardless of how and what we see, our hope is one in the same. And that is for each one of our children to feel loved, happy, and supported, regardless of how and what we see, because after all, it is their spectrum, and we are just the ones who get to share the view with them.

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His shorts are blue and black. Not gold and white. Just in case you were wondering.
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