All content on this website is copyrighted and may not be shared or copied without the author's permission
The AWEnesty of Autism
  • Blog
  • Contact Me
  • About Us
  • AWEnest Advocacy

Thankful for Shells and Cheese

11/27/2013

0 Comments

 
Picture
Thanksgiving is upon us...again. I swear I just put away the sparklers and pull floats from the 4th of July celebration! Time to move on....next holiday, next traditions. Time to start planning meals, making travel plans, and listing the 30 things I am thankful for on Facebook (sorry, I don't do that and it's not because I'm not thankful, I just know I wouldn't be able to keep up, thus making me seem not only thankless, but brainless). I'm betting the early settlers and the Wampanoag Indians had no idea the stress the "Harvest Festival of 1621", aka, The First Thanksgiving, would evoke upon us modern day Thanksgiving planners.

The First Thanksgiving, occurred somewhere between September and November in 1621, when the Pilgrims decided to be gracious and invite 90 of their Wampanoag Indian neighbors for a little sit down. After all, the Indians basically saved many of the Pilgrims from starvation after teaching them how to farm and survive in this new, strange land, so the least the Pilgrims could do is have them over for a harvest festival. That First Thanksgiving must have been good since it lasted three days. Can you even imagine? Three days of a house crammed with family, in-laws, snotty, germy children, blaring football games, turkey, parades, chaos and still more turkey? Ummmm, no thank you, I can AWEnestly see why that tradition faded away.

Don't get me wrong, I love Thanksgiving, all the yummy food, time with family, turkey tryptophan napping, oh, and did I mention the food, specifically my mother's stuffing? Yes, Thanksgiving is a wonderful holiday, steeped in century old traditions, but everything in moderation people. Do you think Squanto and Miles Standish eventually tired of trying to entertain and accomodate all the Indians and the Pilgrims (whom by the way did not refer to themselves as Pilgrims, and rumor has it, they did not have big silver buckles on their shoes...thank goodness, what a hideous shoe that was)? It must have been exhausting making sure there were enough leftovers for the next day, enough homes and wetus to sleep in, and enough games to entertain everyone. Add to that the nervousness and unease of putting two groups together with such huge language and cultural barriers, which could have easily lead to offended guests and a little Thanksgiving Day bloodshed. Perhaps this three day celebration is where the term, "the natives are getting restless" originated. A three day harvest festival to show thanks that could have been equally appreciative in 24 hours or less. 

Picture
When we think of Thanksgiving, typically the first thing that comes to mind is food. Making the menu, grocery shopping along with the Thanksgiving masses, deciding how many people will be at the table, how many side dishes, how many days of leftovers the family can stand thus determining just how big of a turkey should be purchased, thawed out and cooked just in time for guests to arrive. Although the Pilgrims, or whatever they called themselves, and the Indians had plenty of food, much of what we serve at our Thanksgiving table is not what the first Thanksgiving party goers dined on. According to historical records, there was indeed turkey at that first Thanksgiving feast, but quail, duck and carrier pigeons (for some reason the thought of stuffing a carrier pigeon made me equally sad and repulsed) along with deer, fish, corn, and an assortment of nuts and berries graced the plates of our first American settlers (stop calling them Pilgrims). I'm sad to report that mashed potatoes, stuffing and (gasp) pumpkin pie were not served at The Harvest Festival of 1621! What?! Maybe it was the lack of an oven or that Libby hadn't started squishing pumpkin guts into a can, but chances are, no pumpkin pie or Cool Whip passed the lips of the First Thanksgiving Feast attendees. I know, it' sad, right?

Although that first Thanksgiving was a time to celebrate a bountiful harvest, and be thankful for the food bestowed upon them, chances are the Pilgrims (whatever) and the Indians didn't spend a great deal of time around the Thanksgiving table listing all the things they were grateful for that day. Had Facebook existed back in 1621, chances are the First Thanksgiving guests wouldn't have listed 30 various reasons to be thankful, they would have had just one...that they didn't starve or freeze to death (Does that count as two?) that first winter like 46 out of the 102 Pilgrims did. Now, aren't you feeling just a little guilty about being thankful for that front row parking spot you gloated about on your November 22nd Facebook post?
Picture
Yes, much has changed since the first Thanksgiving (thank heavens), but one thing that has remained pretty consistent is the focus on the feast...the food. And if you are the cook preparing the food or a kid with an ASD whose diet consists of about 12 things (none of which happen to be on the Thanksgiving Day table), then Charlie Brown's Thanksgiving dinner, could very well be a spread worth posting in Bon Appetit Magazine. Although, Peppermint Patty was indignant and offended poor Chuck by shouting out her disappointment of a feast that consisted of buttered toast, popcorn and jelly beans, Ryan would have been exuberant...his ideal cornucopia. If Charlie Brown and Snoopy were cooking Thanksgiving Dinner, Ryan's plate would actually have something on it besides just a bun.

Holidays for many kids with an ASD are difficult, and since Thanksgiving tends to be filled with more....more food, more people, more noise, more smells and more chaos, it sometimes can be the toughest. There are many changes in routine, changes in location, changes in people and changes in food. With these kids' heightened sensory systems and need for sameness, a 24 hour Thanksgiving celebration is long enough, three days would have sent these kiddos sailing back to England on The Mayflower. With so many changes, kids with an ASD may not be on their best behavior at Thanksgiving and of course it just happens to be the one day out of the year that well intended relatives get to see your bundle of joy and share with you all of their suggestions, advice, and tricks on how to nip your child's "behavior" in the bud. As a parent, you are often on edge....waiting for the blow up, the melt down or some comment that will send you spiraling into a turkey hazed frenzy. It's probably just how edgy the Indians felt when the Pilgrims invited them to their first feast...anxiously watching and waiting.

Picture
With three kids and their busy schedules, holidays just happen to be the occasions when most of my family gets to spend time with my kids, and with all the chaos, all the change, and all the people, needless to say, Ryan is not quite himself. Don't get me wrong, Ryan loves to go visit with family. He loves the road trip, he loves his grandparents and he loves all the special treats they have just for him. Ryan never complains about being there or whines to come home. And even though the Thanksgiving table is filled with foods he wouldn't dream of putting in his mouth, Ryan is still content to sit up to the table...as long as he is on an end....as long as there is bread or buns on his plate....as long as there is a juice bag next to his plate and as long as his favorite Pilgrim prepares a box of Velveeta Shells and Cheese.

It wasn't always that easy. When Ryan was younger and refused to eat anything that was put in front of him, but couldn't tell us, "I don't like the texture of meat. I'm a vegetarian." (even though he eats 100% all beef hot dogs) his behavior would look more like a spoiled child. And of course as Clueless bellied up to the table alongside all those relatives who only get to see Ryan a few times a year, shouts of, "He will eat when he's hungry", "If you make him something different, he will expect something different every time." or my personal favorite, "No, Burger King isn't open on Thanksgiving Day!", echoed off the closing in walls. Eventually, Ryan would "get his way" and I could feel the vibes of disproval shoot across the table, right through the turkey's heart and into my own. It was hard to explain to Clueless and to family members something even I didn't quite understand yet. All I knew, like the Pilgrims and the Indians, I didn't want bloodshed, so I did "give in" and allowed Ryan to eat whatever he wanted, even if it was a bun (no butter) and a Jello Vanilla Pudding. If carrier pigeons and Bambi could be eaten at the First Thanksgiving, then Velveeta Shells and Cheese and Jello Vanilla Pudding didn't seem so bad.
Picture
Although Thanksgiving has become easier for Ryan, sometimes it is still difficult for me. It's no longer about what is missing from Ryan's plate, it's about what is missing from the Thanksgiving Day Table....the boy that my family rarely gets to see. Even though Ryan is present and at the table (he's still the first one to leave the table), he is never fully "checked in", too concerned with the various noises, smells, and people gathered around that Thanksgiving Day table. Ryan tends to be a little "bossier", grumpier and edgier. Rarely do the other guests at the table get to see his light, his happiness, his joy, his love. Ryan has come so far since his first several Thanksgivings, and that my friends, is something to be thankful for, and believe me, I am. Not just on Thanksgiving, but, every single day. I guess I'm sort of like the Wampanoag Indians, wanting the Pilgrims (or whoever they were) to see all the bountiful beauty that lies within a strange and misunderstood land. A beauty, that once understood, will not have folks sailing back to familiar ground, but make them want to stick around and see just what other beauty this mysterious land has yet to unfold.

Picture
Happy Thanksgiving!
0 Comments

Autism Speaks, But, When Will They Listen?

11/21/2013

6 Comments

 
Picture
I would love to tell you that like my son Ryan, I am a non-conformist, a marches to the beat of my own drum kind of individual, but, alas, I am not. I am more of the follow the crowd, jump on the bandwagon, wear the latest trends (then years later, laugh and hide all photos out of shame and horror, or better yet, embarrass my teenage son with my
trendy fashion choices) kind of girl. I'm not proud that I regularly wore an all black "cat suit" unitard with cut off Levi jeans while proudly flouncing my latest spiral perm curls. No, I'm not proud, but I am AWEnest....AWEnest and somewhat ashamed of my "follow the crowd" persona. Although, I can happily report that my black cat suit unitard is retired (unless, of course you count Spanx), I'm still a jump on the bandwagon kind of girl. As an autism mommy blogger, today I sit blogging in my skinny jeans tucked inside my ski boot looking Uggs (both of which I swore I would never wear) and I feel compelled to jump on yet another bandwagon. A bandwagon worth blogging about. If I let this wagon pass, without adding my two cents (really, my two cents are probably only worth about a half pence, which by the way, England stopped making in 1984 because what the heck can half a penny buy anyway....certainly not an all black unitard or a spiral perm) I would become an outcast among all other autism bloggers. Then I would be all alone in my skinny jeans and Ugg boots waiting for the UPS man, or as I like to call him, My BFF, to deliver my new high heeled sneakers from Zappos (I swear, I will never...I hope).

Picture
The latest band wagon among the autism community has been to gang up and beat the hell out of the beloved puzzle piece that is Autism Speaks. Wow! The puzzle piece was smashed, stomped, tweeted, blogged and flogged last week. Every blogger, advocate, parent or adult living with autism had something to say...and most of it wasn't pretty. The controversy started after Autism Speaks co-founder Suzanne Wright wrote an editorial on the eve of the first ever "Autism Speaks to Washington" Policy and Action Summit in Washington, DC. Silly, rich, Suzanne used words like "monumental health crisis", "national emergency", "despair", and "not living". Wow Suzanne! I had no idea! As I watched Ryan board the school bus this morning smiling from ear to ear with who knows what going through his head, he did not look like he was in "despair". As I joyfully Christmas shopped for Ryan later that afternoon, I sure felt like I was "living" and not just "existing". Had I only read Suzanne's piece earlier, I may have recognized that my life, and my son's life was verging on a "national emergency".

I am fully aware that autism, or ASD, is a "spectrum disorder", I wonder though if Suzanne and the folks at Autism Speaks know this? They certainly must since they chose the puzzle piece symbol to reflect the mystery and complexity of autism as well as to represent the diversity of each individual affected with an ASD. Autism Speaks is the most recognized autism organization, or charity if you will, with lots of money, lots of celebrities, lots of researchers and lots of media in their corner, so how could they not know that people living with an Autism Spectrum Disorder are as unique as every puzzle piece? And that in order to "solve the puzzle", each piece must be regarded equally. With all the information and all the money that is Autism Speaks, I would think that Autism Speaks must be aware that not all children and adults living with autism feel like a "national emergency", that perhaps maybe folks living with autism think Suzanne and her cronies at Autism Speaks are the cause of the "monumental health crisis".

As a mother of a child with an ASD, I am grateful every day that although autism is a piece of Ryan, there are many more pieces to my AWEsome son, and some days, autism is not the mysterious, doesn't fit puzzle piece, it's just an average corner that completes the entire puzzle. I understand this is not the case for all children and their families, for some, autism is the key piece, however, as an organization designed to advocate and help kids who fall on both ends of the autism spectrum and everywhere in between, words need to be chosen wisely Suzanne. Words need to represent all the people, adults and children, that Autism Speaks claim to support, especially when Autism Speaks professes to be "speaking" for those who can't. This "speaking" must feel like a foreign language to Suzanne and her staff since none of the people Autism "Speaks" for can be found on any of the the Autism Speaks Boards or within it's leadership. Perhaps the real missing puzzle piece, is the non-existent voice of those with an ASD in the Autism Speaks organization.
Picture
One of the key puzzle pieces to the Autism Speaks organization was lost last week as a result of Suzanne Wrights' poorly chosen words as well as a history of Autism Speaks blunders. John Elder Robison, Best Selling Author, Autism Consultant and Educator, and adult living with autism, resigned from the Autism Speaks Science and Treatment Boards last week due to the varying differences between his views of what it is like living with an ASD and the beliefs, ideologies and overall mindset of the folks at Autism Speaks http://jerobison.blogspot.com/ . Mr. Robison had hoped to change the views at Autism Speaks by using his own life experiences, his "gifts" as well as his "disabilities" to change the tone of a very controversial organization. It would appear his words fell on deaf ears. Ironic that Autism Speaks is supposedly "speaking" for those with no voice, yet time and time again, they have proven that with all their speaking, they do very little listening.

Mr. Robison concluded that Autism Speaks, although in a position to advocate and speak for children and adults living with autism, clearly is not listening, so he bowed out. What a shame. Maybe Suzanne Wright needs more people living with an ASD on her organization chart. Maybe instead of screwing things up with her horribly misguided words in a march on Washington, Suzanne Wright should have had someone living with an ASD use their own words, their own voice. Perhaps people living with autism can "speak" and regardless of your position on the "Org Chart" Suzanne, maybe you need to listen. Although there are many children and adults living with autism that struggle day in and day out, and this struggle takes a toll on their families, there are just as many people living with autism who don't think they have an "autism situation" or a "problem". People who view their autism as a piece of their big picture, not the mysterious, doesn't quite fit, puzzle piece. I don't know of any other organization that is designed to advocate for a group of people that's misconception of those people is so off-putting that the very people they purport to serve, holds them with such disdain that they create their own group. An Anti-Autism Speaks group, was created by folks living with an ASD so that the true voices of autism can be heard http://autisticadvocacy.org/
Picture
Many higher functioning adults living with an ASD, feel that Autism Speaks spends too much of their millions of dollars (reportedly 44%) on research, and much of these research dollars are not spent on ways to improve the lifestyles of people living with an ASD, but to prevent people with an ASD from existing in the first place. For example, prenatal testing that may reduce a couples chances of having a child with an ASD. This compares to the reportedly 4% of Autism Speaks budget that goes to Family Services to help children, and adults with an ASD that are already here. Some argue that Autism Speaks' goal of "eliminating" autism prays upon parents' fears and stereotypes and that their fundraising tactics enhance these fears with families and the general public. Words like "burden", "despair", "disease" or "defective" do NOT pertain to my son, yet Autism Speaks is "speaking" for him, "speaking" for my family and that is the misconception the public "hears".

Picture
I do not have an ASD. I do not know what it is like to have a "neurological difference" that varies from the majority of folks in the world, so I cannot SPEAK to what living with an ASD is like. As a mother of a son with an ASD, I do HEAR and I do LISTEN...to my son's words...to his feelings....to his heartache....to his joy. While listening, I have never heard Ryan complain that he felt he was just "existing", nor have I heard him utter words like "despair" or wonder if he was part of a "monumental health crisis". Ryan feels like Ryan. A boy who loves video games, music, math, and despises art with every fiber of his being. A boy who loves his mother to the sun and back and is fiercely protective of his little sister. A boy who cries at the thought of his brother, his best friend, leaving for college in a mere two years. A boy who has two parents that love him and believe in him and fight for him. A boy who does not feel like there is a piece to his puzzle that is a mystery. A boy who believes all his pieces complete the picture of who he is, and not one piece has any more importance than the next. A boy who believes that autism is part of his "genes", and that these "genes" make some parts of his life a little tougher, but these autism "genes" have also given him gifts. Gifts that those of us without the mysterious puzzle piece gene, can not begin to fathom.

So yes, even though today, I jumped on the "Wow, Suzanne Wright of Autism Speaks, I can't freaking believe you said that stuff out loud", I am not denouncing Autism Speaks (like they would really care about my half pence anyway) because I think they have done a lot of good in many areas. Autism Speaks has helped enact legislation that forces insurance companies to pay for autism services that were once out of pocket expenses (still have a looooooong way to go on this one, but is has started). Autism Speaks has raised awareness of autism and although some of their tactics have basically sucked, it still has people talking, and talking often leads to understanding and to change. A monumental change that must be forthcoming is that if Autism Speaks continues to "speak" for all individuals living with an ASD, than I hope it shuts up long enough to start listening. Listening to those who are living with an ASD and putting their voices on Autism Speaks' boards and in their leadership. Listening for ways to help gain acceptance and not always touting the awareness of differences for people living with an ASD. Listening to the joys and the successes and not always focusing on the hard ships and the heartaches may be the key to a truce between the autism community and Autism Speaks.

I have one child with an ASD, so I can only speak to my family's experiences. I am in no way diminishing the struggles that many families experience day in and day out with an autistic child, but as an organization designed to support all people living with an ASD, Autism Speaks need to stop speaking and listen. Please, just stop speaking and listen.

Just like any child, my son has had his share of heartaches and successes. Although I may not know the inner workings of Ryan's brain, I think I know his heart better than anyone. Most days Ryan is proud and confident of who he is...the entire picture....not the pieces. Knowing his heart so well, I can assure you that at the age of 12, Ryan couldn't give a da** what Suzanne Wright or anyone else at Autism Speaks thinks about him, writes about him or campaigns about him. However, one day, as a successful, contributing member of society, he will. And I can say with utmost certainty that to read Suzanne Wright's words, to think people believe a part of his puzzle is broken, defective or part of a "monumental health crisis" would hurt and sadden him.

This was one bandwagon I was proud to jump on...for my son. After all the years we have spent telling Ryan that we all have differences and that these differences are what make the world such a unique and great place, to read that the co-founder of an organization created to help Ryan and others living with an ASD, considers people like Ryan a "national emergency" is wrong on so many levels. I never want my son to be ashamed of being exactly who he is...all the pieces of him that make him perfect...that make him, him. So, I hope the folks at Autism Speaks recognize that the real puzzle, the real mystery is why they continue to Speak for people living with an ASD, but rarely take the time to listen to them. Now, that I have jumped off my bandwagon, I must go. I'm pretty sure my UPS BFF just dropped off my new high heeled sneakers from Zappos. Don't worry, if they look as ridiculous as they sound, Ryan will give me his AWEnest opinion and chances are they will be returned on the next UPS truck that cruises through the neighborhood.

Picture
AWEnestly, had I bumped into Suzanne Wright after reading her words of wisdom, I most certainly would have allowed Ryan to use a "different" finger.
6 Comments

B is for Brave

11/13/2013

3 Comments

 
Picture
The cold sweats. You know, the sweaty, clammy, chilled feeling you get when you are about ready to "toss your cookies", give a speech in front of your classmates or colleagues on a topic you really know nothing about, hear the door slam on Disney's Mission Space ride and wonder why, when you suffer from claustrophobia, you Fast Passed in the first place, or send your son off to middle school with a project he completed that you feel certain will irrevocably impact the rest of his middle school career. Yeah, that kind of sweat. I didn't have the stomach bug, I wasn't giving a speech and I wasn't standing in a hideous line at Disney World, so that leaves one cold sweat producing option.

I broke out in a full fledged, panicky, clammy, cold sweat as I waited in car line at middle school a few weeks ago. As my heart raced, and a bead of sweat began forming on my brow, I sat behind the wheel of my mini van wishing I was on Mission Space and all I needed to do was frantically scream that I wanted out and some nice Floridian teeny bopper would roll her eyes at my pathetic self and open the door to end my torture. Ryan was unaware of my near hysterical state as he sat next to me happily humming the theme song to Total Drama Revenge of the Island. In Ryan's hand, THE Project, an acrostic poem he had created on poster board, quite proudly, on his own. For those of you who had to Google "acrostic poem", like I did when Ryan received the assignment, an "acrostic" is a poem or other form of writing in which the first letter in the text spells out a word or phrase. In this assignment, Ryan had to use the title of a book he read, and each letter in the title had to relate to something that happened in the story. Easy breezy, right? Well, sort of, if you don't have a whacko for a mother.

The book for the project was titled, "Anything, but Typical", by Nora Raleigh Baskin. I picked this book up at an autism conference. I believed Ryan would enjoy it. I told Ryan he should read it for his book report. I felt certain in doing all of the above, that I just sent my son to the gallows. "Anything, but Typical" is a fictional story about a boy with an ASD. When I turned to the first page and read the main character's abhorrent description of art class, I thought, "Well, that sounds like someone else I know.", so I was hopeful Ryan would see past the words, past the laborious task of (shudder) reading, and see a little bit of himself. Ryan HATES reading, especially fiction because in Ryan's mind, fiction is a waste of time and "utterly ridiculous". If it's not true, or real, why bother? What good could come from such a big waste of time? So, needless to say, when my boy read the book and said he "loved" it, I gave myself a huge pat on the back!
 
I asked Ryan, "Did you like the book because you saw a little of yourself in the main character?". Clearly, I forgot who I was speaking to, "No, I'm not like that boy at all because my name is Ryan, his name is Jason. I live in Pennsylvania and he lives in another state. I hate writing, and he loves writing." Ok, ok, so for a minute, I thought maybe Ryan could see past the black and white print and "read between the lines" to find the gray. It wasn't until Ryan finished his acrostic poem that I realized that even though Ryan may not "see" the similarities in himself and Jason, he clearly felt them. Once I read Ryan's words, I no longer was patting myself on the back, I was kicking myself in the a**, terrified that my book choice for Ryan and this project, would not only have a deep and lasting impact on his middle school years, but, this poster, this "acrostic poem", may possibly have negative consequences that could potentially reverberate throughout the halls of high school too.

For those of you over 40 and who need to hold anything you read at arms length because you refuse to buy reading glasses at CVS, I will write out Ryan's acrostic poem in case the words aren't legible in the photo above.

Autistic
Neurotypical
Yearn to feel normal
Therapist help
Hawthorne is Jason's art teacher
Insecure
Nervous about new experiences
Gifted with the English language

Bennu is a dwarf in Jason's story
Unusual behavior/habits    QUIRKY
Trouble always searches for Jason

Talking was difficult
Yelling is what people did to Jason when he had no response
Phys Ed is what he hated the most
Isolated
Clay caused Jason to flip and turned him into a laughing stock
Art is one subject Jason really hates
Loves to write
Picture
As I read Ryan's words, I felt an all out war begin in my brain. I can't even begin to describe the pride I felt in the work that Ryan had done, the words that he often is unable to say, but was clearly able to write down. However, if I'm being AWEnest, I also felt a panic rising in my chest. What if Ryan's classmates made the connection between Ryan's acrostic poem and Ryan? What if words like "autisitic", "unusual behaviors", "quirky", "isolated", "laughing stock" and "insecure" all pertained to Ryan and not Jason, the main character in the book? What if after years of believing Ryan was "odd", "weird", or "nerdy", Ryan's classmates recognize that Ryan's differences go much deeper than that, deep enough to make his differences worthy of the label "autistic"? What if after all my soap box preaching, all my "look beyond the label" regurgitation, I actually do prefer "quirky" or "weird" over that heartbreaking A Word. What if I'm a fake, a phony, a horrible mother?

What, if, what if, what if?!! The panic was close to overflowing, so close that I almost screamed for Ryan and dragged him and his poster back in the car. I considered bribing Ryan with a donut and taking him back home and putting him in the bubble I often longed for, where I knew Ryan would be safe from prejudice, ignorance, bullies and a certifiably crazy mother. My hands were gripping the steering wheel so hard, my knuckles were white and I no longer could think straight. The other parents in car line, whose kids walked care free into school with no acrostic poem that linked a label to their kid, were angrily beeping their horns at me. The death grip I had on the steering wheel loosened enough that one particular finger was almost ready to shoot up in the air as I slowly pulled away. What could I do now? Ryan was walking happily through those middle school doors with none of the fear or the backlash that had me close to puking. I drove home with panic in my heart, regret in my mind, and Denial chatting annoyingly next to me.

Picture
I frantically raced into the house to share my breakdown with Dan (poor Dan, he has had to talk me off my cliff so many times I stopped counting...he probably hasn't). As I rambled through my lists of fears, some completely irrational ("What if they call him Rainman?", like these kids watch anything other than YouTube and Vine videos) and some more rational ("What if the other kids do read between the lines and this discovery "Isolates" Ryan further, making him Yearn even more to "feel normal"?), Dan stood calmly and listened. When I finally exhausted my neurotic list of whys....Why did I buy him that book?....Why did I let him expose his vulnerabilities?....Why didn't I homeschool him?....Why wasn't Dan trembling in a cold sweat and racing to the school to rescue Ryan from the injustices and bullies of middle school?....my emotionally spent, and highly adrenaline filled brain collapsed in a heap on the couch. Dan looked at me, calmly and without so much as a bead of sweat or a tiny tremble and said, "I think it was brave." My gosh how I wanted to kick him. If my body hadn't been transformed into a wet noodle, I surely would have given him just one quick shot to the knees. This glass half full, annoying husband of mine, whom without I would have long since been institutionalized, was so right, so spot on, and I kind of despised him for it. Just because Dan has never committed me against my will (aka, a "302") for a much needed "rest", doesn't mean I have to love when he is right. Obviously, it kills me when Dan is right, especially when he is so calm about it. But what grinds that knife just a little bit deeper, is when I have been so very, very wrong. 

As much as Denial tried to help me wrestle Ryan and his poem back in the car that morning, I knew that Dan was right (dammit). Ryan was brave. Ryan is brave. Even though Ryan and the main character, Jason, had some differences in Ryan's black and white brain, Ryan wrote down words that he understood, that he related to, that he himself has felt. Words like "isolated", "unusual behaviors", "prefers to be alone", and yes, even The A Word, "autism". Whether or not Ryan gave a moment's thought to his fellow classmates recognizing those same traits in him, I AWEnestly can't say. Maybe Ryan thought about it and didn't care, or maybe it never even crossed his mind. We neurotypicals get so caught up in worrying about what others think, say, or do, that we lose a little bit of who we really are. Other people's perceptions have so much weight in our lives, that sometimes we lose sight in who we really want to be....who we are really meant to be. Ryan spends very little time concerning himself about other people's perceptions which gives him the freedom and the bravery to just be. Exposing your differences is brave. Not hiding who you are is brave. Being unashamed of who that is, is brave. Keeping Denial on speed dial and calling her every time life gets scary, is not.
Picture
The definition of brave is "to face or endure with courage". When we think of bravery, we envision fireman running into a burning building while others run out. We picture police officers in a firefight, bravely protecting their community. We see soldiers putting themselves in harms way, to protect innocent civilians and to protect our freedom. All perfect scenarios of bravery, and of course, such bravery should be exemplified and celebrated, however, bravery has many faces. There are other brave heroes who "face or endure with courage" very different battles. The bravery of a child who sits for a haircut when each snip of the scissors feels like a thousand needles in his head. A child who wears scratchy, hard jeans when every fiber in his being is screaming for those pants to come off. A child who spends his time at recess alone, preferring the solitude to a social mishap on a playground filled with social cues he can't begin to understand. The teenager who bravely walks into a crowded, noisy lunchroom where the noise, the smells and the chaos are like walking onto a battlefield, but in this battle, he is alone, with no flak jacket, no protective gear, and no back up.

Bravery takes various forms. In order to be brave, one doesn't have to put out a blazing fire, learn how to fire a semi-automatic handgun or drive a humvee. Sometimes, being brave means finding the right words in an acrostic poem and proudly sharing those words, with little to no fear, and the only back up being a hot mess of a mother curled up in the fetal position a mile down the road. Even though it kills me to say it again, Dan was right (ugh). All my worrying, sweating, and panicking was for nothing. Ryan's teacher said, Ryan "rocked" his presentation! Ryan said what he wanted to say, got all the words out, and not a "Rainman" was mumbled in the class. For a boy who often says so little, who often struggles to find his words, when Ryan does say something, it certainly is worth listening to.

Maybe that day Ryan taught his classmates what it is to be brave. Maybe, brave has a new face. Or maybe, middle school kids are just too young to "see it", so consumed with fitting in and being just like everyone else, brave doesn't matter. One thing is for certain, my brave boy and kids like him, are proving to anyone who is fortunate enough to read between the lines, that there is so much more to these kids than words in a psych report, words in an IEP, words in a book, or words in an acrostic poem. The day Ryan shared his words, he was, indeed, brave. Every day Ryan walks out the door into a confusing world that doesn't understand him, and rarely tries to, he is brave. Every sensory sensation that Ryan tolerates and doesn't run from, he is brave. Every social blunder Ryan survives and social cue he misses, yet keeps on going, he is brave. Accepting his differences and being just who he is meant to be, may not make the nightly news, but Ryan's bravery, his courage in the face of adversity, makes him an ally worth having on any battlefield. Dr. Robert Anthony, author and self-help guru said, "The opposite of bravery is not cowardice, but conformity." My courageous, handsome, little non-conformist, might just be the bravest kid I know.

3 Comments

Friend(chips)

11/7/2013

0 Comments

 
Picture
I did it. I survived a girls weekend at the Chesapeake Bay with nine of my girlfriends that I have loved, laughed and cried with, for over 30 years (that 30 was not a typo which is truly unbelievable to me). And yes, "survived" is not an exaggeration. Immediately upon arrival, before all my bags (yes, 48 hours requires more than just one bag) were out of the car, a "beverage" was thrust into my hand. Heaven forbid, my hand be empty for fear of that old high school name (think another word for "cat") being bestowed upon the empty handed one and echoed across the water for other families, (who immediately hated our arrival as we are a very, very loud group of women) to hear. Clearly, I did not want to be called a "cat" or some other equally derogatory word for someone who only drinks soda, so I did what any other high school girl would have done, I went along with the crowd.

Just like high school, sometimes you pay the price for being a follower or a crowd pleaser. My fear of high school name calling lead me to lie awake most of the night with a headache that had me Googling, "symptoms of aneurysm" at 4AM. As I lie in bed wondering who was sober enough to drive me to the hospital and who would actually believe me that this time, the hypochondriac really was in peril and on the verge of dying...again, I took a moment out of my near hysteria and lie in bed smiling at the memories of the night before. More fabulous, hysterical, laughing until you pee yourself (we are all over 40) memories, to add to the collective memories of the past 30 years. With a contented smile on my face and the glimmer of hope that perhaps the headache stemmed from the red wine (very, very, good red wine) and not an aneurysm, I decided that if I was going to go (again), that going while surrounded by my lifelong girlfriends in a beautiful home overlooking the Chesapeake Bay, wasn't a bad way to go. Being the sick, twisted friends that we are, I knew that come morning, my girlfriends would have been initially horrified had they found me "gone", but after they recovered, I felt quite certain I would have donned a hat and sunglasses and been dragged to the bar later and propped up in the corner a la "Weekend at Bernie's" style.

Picture
Obviously, since I am typing this, I survived the night (again) only to be greeted with the smell of coffee (gag) and the sounds of trying to be quiet giggles as everyone relived the night before. I awoke with my head still pounding, but somewhat better, so I ruled out aneurysm and was greeted by my dear friends with rude comments of my all too obvious sleepless night (we have been known to have an "Ugly Wall" of old 80's photos with bad outfits and bad hair, and sadly, I have graced the wall...repeatedly). And although my "Weekend at Bernie's" remark may have seemed a bit off the cuff, I wasn't too far off the mark. I told my friends how I was convinced my wine induced aneurysm was going to blow in the middle of the night, which lead to a very detailed discussion of how my "friends" would have disposed of my body. Such concern over where they would find a rock big enough to tie to my ankle ("She's skinny, doesn't need to be too big."), or how they would get the boat out of the garage and back into the water without others becoming suspicious, but more importantly, was there enough beer and wine left from the night before to take on the boat to celebrate my cast off? They reassured me that they have NEVER discussed or considered anything like this before and of course, being lifelong friends, I believed them. Yep, they are those kind of friends. The friends who hold you up when life gets you down, prop you up when you can no longer stand on your own and dump you over the side of a boat with an amazing toast and a great party. I can't imagine going through life without them.

It really was a great weekend, and, I have to be AWEnest, there were several times, I looked around that room and thought how fortunate I have been to have such wonderful, beautiful friends in my life (even after I realized I wasn't dying...at least not at that particular moment). Friends who have been there for me for some of the best and worst moments of my life. Friends who know my fears and abuse me about them, but, who also love (I think) and accept me and all my craziness. In addition to my childhood friends, I have been equally blessed with lifelong friends that I met in adulthood. Friends that have supported me, loved me and also abused me (I really do bring much of it on myself) while traveling life's "grown up" journey. With such deep and heartfelt gratitude for these friendships, it's no wonder I had plenty of moments that weekend that I thought, with an intense, gut wrenching heartache, "How can Ryan go through life without friends?" Who will prop him up in the corner when he can't stand on his own? Who will make fun of all his quirks, anxieties and tics, but accept him and love him not in spite of them, but because of them? And just like stepping into a time machine, Denial was next to me again.
Picture
As I gazed around the room, in a wine induced head throbbing state, I thought to myself, "Ryan has learned to read, to write, to communicate, to love, and to laugh, so he can learn to be a friend, I just know it." Every obstacle that life has thrown Ryan's way, he has overcome....in time. Finding lifelong friends is just one more hurdle he has to jump, and he too, will have wild weekend parties with nine of his closest friends! In the back of my mind, I heard a little voice that sounded remarkably like Ryan's say, "Not having friends doesn't make me sad at all.", and with the help of Denial, I quickly jumped off the couch for an ice cold Diet Coke, grabbed my pounding, glad to be alive, head, and ignored that all too familiar voice. After all, Ryan has had a friend or two....sort of, so, he just needs to understand the importance of fostering a friendship and he will totally see what he has been missing.

Although Denial jumped in the backseat and followed me home from my girls weekend, that Ryan-like voice kept getting louder and assuring me that Ryan was happy and content without friends constantly by his side. Other voices of my past began creeping in too, with phrases like, "Chances are Ryan will never shout, 'Woohoo, I love friends'." and "Friendships won't come easily to Ryan." and the loudest voice of all, "I PREFER BEING BY MYSELF". Humph...stupid Denial....stupid voices...stupid autism. I decided to give my over worked, over tired, over partied brain a rest and not think about this friend business until later. Little did I know, "later" would be in less than 24 hours.
Picture
The day after I decided to throw Denial back in the time machine, where she clearly belonged, the friendship issue hit home...hard. Ryan was meeting with his AWEsome speech teacher, Mrs. P and they were discussing some of the social aspects of middle school like, working in small groups, lunch time, walking in the halls, etc. Ryan admitted to Mrs. P that no one says hi to him in the hallways at school and that although he sits with "friends" at lunch, there isn't a whole lot of "socializing" going on. Mrs P told Ryan that was ok, and that although some people don't mind being alone, other people would feel very "lonely" without friends. Well, that was when the damn burst...all out uncontorllable sobbing and there was no getting Ryan back at that point.

As Mrs. P filled me in, I gathered all my strength to hold back my own flood of tears. My boy feeling lonely made me feel incredibly helpless. If Ryan were hungry, I would get him a Jello Pudding. If Ryan were cold, I would fetch his Mario blanket. If Ryan were sad, I would console him with a "squeezy tight". I didn't know how to make Ryan feel less lonely in school. How to make him have friends. Mrs. P and I discussed how hard it is to decipher if the tears were a result of Ryan really feeling lonely or if the idea of the word lonely caused his tears. Maybe Ryan wants friends, but since understanding friendships and the social nuances and conversation that goes along with having friends, makes being alone much easier. I told Mrs. P, I would try and get something out of Ryan at home, which I knew would be almost as easy as asking him to remove a wasp's nest from the back porch for me.

Picture
Hours later, as I approached Ryan's bedroom door, I longed for some of my girlfriend's good red wine from the weekend to sort of dull my frazzled edges. I had hoped that a good solid hour of Pikmin 3 would have Ryan in his happy place and that he would respond to my questions. I asked Ryan, why he got upset today. "I dunno." I asked Ryan if talking about friendship upset him. "I dunno." I asked if it's hard to talk to friends. "I dunno....sometimes." Then I said, ok Bud, I'm not going to "beat around the bush". "What are you talking about Mom? There is no bush in here! You must be losing your mind!" Sigh. Then I just blurted it out, "Ryan, do you want to have friends?" Pause. And then, what I believe was a true, heartfelt response, not an "I will tell you whatever you want to hear to get you out of my room response". Ryan actually looked me in the eye and said, "Yes. One." One friend. Not nine, not twenty, not three. One. Ryan assured me he had one friend and didn't need or want anymore. That it's too hard to remember how to talk to the one friend by asking his likes and dislikes and trying to remember what those likes and dislikes are and that having more friends would, "hurt my brain." Once again, I was in AWE...of his understanding, his clarity and most importantly, his happiness. Not MY happiness....HIS.

Picture
When Clueless and I were still in cahoots, I once believed the fallacy about autism, the notion that kids with an ASD, don't have emotions or feel sympathy or empathy. It's true that some kids with an ASD have a harder time expressing their emotions in a way that exemplifies that they have sympathy or empathy or care for others as much as they care about themselves. When the world is so loud, so scary and so big, it's hard for these kids to do anything, but fight for their own survival, which may "look" like lack of empathy, lack of emotions, or lack of understanding. I have no doubt that Ryan "feels". In fact, the intensity of his feelings are so severe that a little bump on the knee is a hair raising scream of "I'm dying!" (I have no idea where such histrionics comes from) and a slighlty touching moment on television can evoke stifled sobs. This sensitivity, and at times perceived insensitivity, makes friendship difficult for Ryan, but not impossible.

So, whether Ryan's breakdown with Mrs. P was truly about not having friends and feeling lonely, or if it was just the understanding of what lonely is and the power and depth of that word evoking such an emotion in him, is hard to say. I don't know if I will ever fully know or understand. There are many mysteries of autism I will never comprehend, but the choice to not have or be a friend, is by far the most difficult one for me to swallow. One thing is for certain. Ryan knows what he wants, what he needs and what he can and can't handle. One friend playing Pikmin 3 with him is his desire for today, not a weekend away with a bunch of cackling, loud, abusive friends who plot how to dispose of your body (It's hard to believe it's what I wanted?). Only Ryan can decide the importance, if any, friendships will play in his life. Mrs. P can give Ryan the tools to learn how to make and be a friend, and as his mom, I can give him the opportunity to foster friendships through play dates, activities, etc, but Ryan has to want to have and be a friend.

And even though, my mantra for the past several years has been, "What makes me happy, doesn't necessarily make Ryan happy." (repeat 10,000 times), sometimes I forget, especially when my happiness comes in the form of friendships that make me feel complete. I mean, how can Ryan miss something he has never really had? After so many years of battling Clueless and Denial and opting instead to hang and chill with Acceptance, I have to be AWEnest when I say, it still makes me sad that Ryan was not given the friend "chip". I recognize that there are so many other things in Ryan's life that make him happy and feel fulfilled and I truly love his extraordinary AWEsomeness, but, this difference, although something I can accept, is just something I will never fully understand, and that's ok. Just as incomprehensible as it is for me to not possess the friend "chip", Ryan is equally baffled by me missing the music "chip". I swear if my girlfriends don't tie a rock to my ankle and toss me over a boat one day, Ryan may snap when he no longer can stand to hear me sing one more Adele song out of tune. One thing's for sure, if that happens chances are good Ryan will get away with it. Unless there is a WiiU on the boat with Pikmin 3, I'm betting Ryan will be alone, so there will be no witnesses and no one to blackmail him later. Something to be said for standing on your own and not following the crowd.
Picture
It only takes one.
0 Comments
    The Mighty Contributor

       Author

    Picture
    Keeping it real, raw, and AWEnest while laughing, loving and living in our world 
    touched by Autism.
    If you would like to subscribe to this blog ...

    Enter your email address:

    Delivered by FeedBurner

    Definition of Awe:
    "a mixed emotion of
    reverence, respect, dread and wonder inspired by authority, genius, great
    beauty, sublimity or might." Yep, someone should have consulted a mom 
    before
    spelling AWEtism.

    Archives

    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013

    Categories

    All
    A Blink Of An Eye
    Acceptance
    Advocates
    Aestivation
    Alone
    ASD
    ASD
    ASD And Disney
    ASD Empathy
    Asd Love
    Atypical
    Austin Powers
    Autism
    Autism Acceptance
    Autism Adults
    Autism And Alone
    Autism And Disney
    Autism And Emotions
    Autism And Fevers
    Autism And Field Trips
    Autism And Friends
    Autism And Homework
    Autism And Hope
    Autism And Lonely
    Autism And Media
    Autism And Police Interaction
    Autism Awareness
    Autism Awareness 2016
    Autism Brothers
    Autism Emotions
    Autism Empathy
    Autism Feelings
    Autism Friends
    Autism Idioms
    Autism Journey
    Autism Lessons
    Autism Love
    Autism Meltdown
    Autism Moms
    Autism Routine
    Autism Routines
    Autism Self Advocacy
    Autism Self-Awareness
    Autism Siblings
    Autism Speaks
    Autism Spectrum Disorders
    Autism Swimming
    Autism Tour Guide
    Autistic Enough
    Awe Inspiring
    Awe-inspiring
    Back To School
    Baseball
    Beach
    Beauty
    Beauty Is In The Eye Of The Beholder
    Big
    Black And White Thinking
    Brady Bunch
    Bravery
    Breaking Bad
    Bridge Over Troubled Water
    Bugs
    Bullying
    Champion
    Change
    Change Of Heart
    Changes
    Chatty Cathy Doll
    Childhood
    Christmas
    Clothes And Autism
    Clueless
    College
    Communicating
    Communication Skills
    Comparing Disabilities
    Confidence
    Conscious Uncoupling
    Creepers
    Criticsm
    Day Of Pampering
    Death And Dying
    Denial
    Diet
    Differences
    Different
    Different Not Less
    Disability
    Disney World
    Donkey
    Donuts
    Dr. Seuss
    Early Bird Gets The Worm
    Eddie Murphy
    Ed Sheeran
    Educators
    Emily Dickinson
    Emoji
    Estivation
    Facebook
    Facial Cues
    Fear Of Santa
    Fears
    Fifty Shades Of Grey
    First
    Flags Of Autism
    Friends
    Gifts
    Groundhog Day
    Growing Up
    Guest Blogger
    Hades
    Halloween
    Happy
    He Is There
    Helicoptoring
    He Loves Me
    He Loves Me Not
    History Of Autism
    Holidays And Autism
    Homecoming
    Homework
    Honesty
    Hope
    Hovering
    Hygiene
    Hygiene Autism
    I Am Sorry
    I Am You
    Idioms
    Include
    Inclusion
    Inside Out
    Instagram
    Invisible
    IPhone
    It Takes A Village
    John Elder Robison
    Judgement
    Julia Muppet
    Kate Upton
    Kisses
    Language
    Left Out
    Legacy Of Autism
    Letter To Me
    Letter To My Son
    Lifeguard
    Limited Diet
    Listen To Your Heart
    Literal Thinking
    Loch Ness Monster
    Loving A Child With Autism
    Matthew McConaughey
    Minecraft
    Minecraft Autism
    Moms
    Mother's Day
    Mothers Day
    Mothers Disabled Children
    Mothers Love
    Mothers Of Children With Autism
    Music
    Musical Gift
    Music Autism
    Myths About Autism
    Neurotribes
    New Clothes
    New Years
    Not Alone
    Not Less
    Parenting
    Peanut Gallery
    People Magazine
    Peter Brady Voice Change
    Pets
    Piano
    Placebo Effect
    Play
    Pointing
    Police
    Pool
    Proud To Stand Out
    Read Across America
    Relief Pitcher
    Remorse
    Risks
    Rituals
    Roar
    Routines
    Same Old Song And Dance
    School
    Scripting
    Sensory
    Sesame Street
    Sharing Interests
    Sharks
    Showers
    Showing
    Shrek
    Siblings
    Singing
    Small Talk
    Social
    Social Circles
    Social Communication Disorder
    Social Media
    Social Skills
    Speech
    Stereotypes
    Steve Silberman
    Stickers
    Summer
    Summer Camps Autism
    Support
    Surfers Healing
    Talk The Talk
    #TBT
    Teacher
    Teachers
    Team
    Temple Grandin
    Thankful
    Thanksgiving
    The AWEnesty Of Autism
    The A Word
    #thedress
    The Jeffersons
    The Old Me
    The Outsiders
    Throwback Thursday
    To Tell Or Not To Tell
    Touch
    Trick Or Treat
    Trying To Understand
    Unexpected
    Vacations And Autism
    Vacations And Autism
    Video Games
    Walk The Walk
    Walter White
    Weather
    Wheaties
    Wine
    Wishes
    Wizard Of Oz
    Words
    World Autism Awareness Day
    Zombies

    RSS Feed

Powered by Create your own unique website with customizable templates.