Archive

Archive for the ‘In Their Own Words’ Category

MSTFNSH…..Huh?

October 11, 2011 18 comments

Glen Finland is the author of Next Stop: A Son with Autism Grows Up, due out from AmyEinhornBooks/Putnam in April 2012.  www.glenfinland.com

MSTFNSH. At first it was a mystery to me, but that’s what the vanity license plate reads in the middle of the eight bumper stickers on the back of my autistic adult son’s little Toyota.  He’s 24 and he’s been driving himself to work for nearly two years now, pulling trash at county parks for minimum wage.  There’ve been two tickets for going ten miles over the speed limit, but other than a broken rearview mirror and the unexplained yellow paint on the side of his gray car, no crazy-making incidents.  I tell myself to just breathe.

And all those bumper stickers?  They consist of eight different ways to say “26.2 miles,” “Your punishment is my sport,” and simply “Runner!”  Because the countdown is now on. My boy David is running every night after work, in the dark and alone, rain or clear skies, training like a true athlete these days because he’s just a month away from making his dream come true.  It’s not his first marathon.  It’s his third and you better believe he’s competitive, having completed the Marine Corps Marathon in a swift 3:52.

Get ready, I’m gonna brag here and you can’t stop me: On November 6th of this year, David will run the New York City Marathon.  He will run for Team Achilles International, a group of disabled athletes founded and championed by New York distance runner Dick Traum who knows what it means to be a different sort of human being.  Forty years ago Dick lost his right leg in a crushing car accident when he stopped to fill up his car. Today he says that “Empowerment is what Achilles is all about. We don’t work with magic spells. We just go out and run, and in doing that, we discover that we do not have to sit quietly at home and dwell on our disabilities.” But he also knows that “every time human beings realize more of their potential, all of society benefits.”

But hold the pity fest.  The runners in this club don’t care to hear it.  In fact, they represent the sturdiest of us all: there’s an 80-year old nun, a landmine survivor from Grozny, Chechnya, a Cuban burn victim, a blind runner, a struggling to quit drug abuser, victims of traumatic brain injuries, and a platoon’s worth of U.S. veterans—Wounded Warriors who will attack the course on November 6th in their wheelchair racers or on prosthetic limbs or crutches.  I’m telling you, you’ve got to see it to appreciate the strength of character and force of nature that make every one of these athletes fit to run.  And now my David is one of them.

One more thing.  I finally figured out what the cryptic vanity plate means on the back of my son’s banged up Toyota.  MSTFNSH = M-U-S-T  F-I-N-I-S-H.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Not Today: An Outsider in the Outfield

October 11, 2011 32 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

Sometimes I think my father is a bit autistic. His autistic tendencies are entirely too mild to warrant a diagnosis, but they are noticeable enough to irritate me, and I’m the genuine article! Like any certified aspie, my father’s entire world revolves around his special interest – baseball. I swear, that man has managed to turn every conversation of his adult life into a longwinded monologue about the great American past time…

“You know, Dad, I was reading about that AIDS epidemic in Africa…”

“Son, let me tell you something about AIDS. AIDS is a lot like professional baseball. You see, you don’t realize how physically taxing it is until you have experienced it yourself…”

Conversations like these make me more mindful of my own autistic behavior – I feel your pain, Mom! My obsessions are regarded as symptoms of a disorder, yet when my Dad carries on about baseball, no one thinks anything of it. What gives?!

The Holman family is a baseball dynasty. My father and uncle both played Major League Baseball and my kid brother is now enjoying minor league success. So what happened to me? Genetic research may or may not yield an explanation for my autism (my mother blames the enormous quantities of yogurt she consumed during her pregnancy). Either way, I’m not much of an athlete.

As a bouncy autistic kiddo, my father’s baseball career took me all across the country. Life moved with the urgency and lightning pace of an amphetamine bender. My mother carted me across the country, guided by the distant glow of stadium lights, chasing my father’s career to the next city, the next ball park, one more win, one more loss… Like wise men following a star, we hoped those lights would lead us to our salvation, or at least a place, any place, we might one day call home.

No wonder my father is still obsessed – baseball is a dream that never ends. Spectators are filled with admiration and nostalgia, as their heroes round the bases, chasing the dream all the way home.

Back then, I had no way of knowing that my life was unusual. I was simply along for the ride – I didn’t understand what all the fuss was about. I’d met few children outside of the insanity of professional sports. Didn’t all fathers wear crisp white uniforms and travel the country playing baseball for thousands of adoring fans? Didn’t all mothers frantically drag their children through airports and locker rooms?

My father recalls being interviewed for national television while standing on the field of the King Dome, struggling both to answer questions and prevent me from wiggling out of his arms. Cocky and playful as always, Ken Griffey Jr. sauntered up to us, snatching the microphone from the reporter. “So little buddy,” he said, grinning my way, “do you think the Mariners will win the game today?” He pushed the microphone into my face and awaited my response.

“Not today,” I sighed. “You won’t win today… so we should just go home.”

My poor father had no idea what to do with me. He often tried to persuade me to go out back and play a game of catch with him, but I was usually too busy watching “Fantasia” or “Alice in Wonderland” – Dad had good reason to suspect his five year-old boy was a homosexual pothead.

In elementary school, my father somehow managed to convince me to join a little league team. He came to regret it. I spent every game spinning around in the outfield, oblivious to the action in the infield. Balls often whizzed by me, thumping onto the grass, and rolling slowly towards my spinning body. “Scotty, you just lost us the game!”

“I did? Does that mean we can go home now?!”

I was no better at batting than I was in the outfield. I rarely swung the bat, and couldn’t seem to hang on to it when I did, hurling  it farther than most of my teammates could throw the ball. I may have hit a few nine year-old outfielders in the kneecaps. Once, and only once, I managed to get a hit. I heard a crack and watched the ball soar far into left field. Overjoyed, I turned and skipped back into the dugout… forgetting to run the bases.

When I was particularly uncooperative, my father would tell me that I was adopted from a pack of gypsies. “Akmed!” he would shout. “You do know your real name is Akmed Megelbgy, right? We changed it when we adopted you, but you’d better get used to Akmed again, ’cause I’m sending you straight back to those gypsies if you don’t let the cat out of the refrigerator!”

Was Dad right? Was I adopted from strange, rootless people? Sometimes I wonder… I’ve always felt out of step, and have spent my life searching for a place I might belong. I’ve searched among the privileged, the pious, the decadent, and the depraved. You know what I’ve discovered? We are all looking for the same thing.

Whether hunched over a keyboard writing humorous, self-deprecating blogs about autism, or sliding into home base, we are all searching for love and acceptance. My father now recognizes my passion as the same restless yearning that drove him to success. An electric urgency comes over him when he talks of baseball; he lights up from the inside. This is especially true when he speaks of his minor league career.

Scholarly and uncoordinated as I am, I connect with his stories of traveling the country in a bus crammed with excited and terrified kids, all of them united by a burning hunger to prove themselves.  His voice quivers with excitement when he tells these stories, and I know that I was not adopted from gypsies. I am truly my father’s son… we share the same passion.

We all want to earn our place in the sun – we all want to be valued. However, I’ve learned that you cannot buy your way home. Your true family does not need to be impressed; they love you for who you are, not who you once were or who you may one day be.

I was certainly not the son my father envisioned, and I’m sure a part of him mourned the loss of his dream child, but he never made me feel like a disappointment. He may not have understood me, but he embraced me nevertheless.

Dad still hasn’t figured me out, but that’s alright – he loves me. Occasionally, he will try to make sense of my behavior, but I’m quick to remind him that the effort is unnecessary. “You know son, autism is a lot like professional baseball…”

“Not today, Dad… Not today…”

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – My Son

September 30, 2011 7 comments

Ana Arroyo, Scentsy Independent Consultant, grew up in New York City and resides in Westchester County, New York with her family. Ana was one of the many Scentsy consultants across North America who enthusiastically embraced the company’s campaign to raise funds for Autism Speaks through the sale of the Piece-by-Piece warmer.

My son was diagnosed with having mild-autism tendencies at the age of two.  At first I did not understand what “autism” was and my husband explained it to me.  That day we both cried (so did my husband’s mother, who we were living with at the time).  The hardest part was telling our family (they were always asking “when is he going to speak?”), as we did not know how they would react to this.  It turned out that our family members and friends were very supportive and understanding (and again, we all cried).

We enrolled our son in an Early Intervention Program, where slowly he was making some progress.  He still played by himself and was set in doing things a certain way.  He was use to a routine, so there was times when he would not understand when he did not have school or see his bus come for him.

Every night I would read to him because I wanted him to be able to keep up with other children so that they would see that he was not so different.  In doing so, he learned how to read very quickly.  One thing that he was fascinated with was the subway trains.  He surprised me by remembering exactly where we stopped one day because he had to use the bathroom (he was only five at the time), I was shocked that he remembered.  I brought home a train map and every night he would sit in a corner, open the map and just look at it for about an hour and then very carefully fold it back the way it was and put it away.  This became a routine for him for several years and always at the same time.

The hardest time for him was high school.  We had just moved to Cortlandt Manor from the Bronx and it was hard for him to make friends.  He would come home and get upset and cry.  I would tell him that everything will work out fine and when you feel this way to take out your Bible and read a passage, which he did every day.  I put him in a bowling team in the hope that he would make friends.  He enjoyed bowling and taught himself how to curve the ball.  He would practice with his brother (who by the way is nine years younger).

My family and friends are so proud of my son, for he has come a long way from what we were told.  They told us that he would never graduate with a diploma, might not get a “real” job, etc.  Well, my son prove them wrong.  My son graduated from both the 8th and 12th grade with diplomas.  He served his country by joining the United States Navy (two weeks before 9/11) for five years and was honorably discharged.  He became a New York City Police Officer (his dream since he was 14 years old).  He is married, has a three year old son and is a Correctional Officer in Mobile, Alabama.

On Thursday, September 29, Autism Speaks received a visit from two special guests who travelled all the way from Idaho. Heidi and Orville Thompson, Co-owners of Scentsy, a rapidly growing party plan company offering a variety of home fragrance products, stopped by to present a check from sales of its Autism Speaks themed ‘Piece by Piece’ Charitable Cause Warmer for an amazing $533,880! Click here for full coverage!

In Their Own Words – I Want My Money Back

September 29, 2011 94 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

At the tender age of fifteen, I saw my first psychologist, a stern, elderly man who smelled like a second hand bookstore. His full, wiry beard, was speckled with white and gray, as if it had caught the contents of an overturned ashtray. It fell past his chest, disappearing beneath the edge of his massive, oak desk. I wondered if it reached his toes, and leaned forward awkwardly, hoping for a revealing glimpse.

“Young man,” he said, startling me. “Tell me why you’re here.”

“Do you shampoo that beard?” I asked.

“Excuse me…”

“You look like Charles Darwin.”

He leaned back and stared at me, mildly annoyed, as if I was a fly he had noticed swimming in his coffee. “Your family is concerned by you behavior. I believe…”

“I commend you, sir!” I interrupted. “The world is experiencing a shortage of truly magnificent facial hair; you’ve got the best beard I’ve seen all year! You know who else had a good beard? Sigmund Freud. Are you a Freudian psychologist?”

“Young man, let’s try to stay on topic.”

“Right, beards… Nobody could beat Tolstoy’s beard. Now that dude had a beard!”

“Young man!” he bellowed, startling me again.

“Humph… Young man,” I muttered. “Just ‘cause I can’t grow a big fancy beard…”

The psychologist lifted a notepad from his desk and began scribbling absentmindedly. “I’m afraid,” he said, “that you have a very serious case of Bipolar Disorder.”

“Huh? How do you know? I’ve only been here for five minutes!”

“Trust me; I’ve been around a long time.”

“But… I’ve never had a manic episode, and the DSM-IV clearly states…”

“You, my dear boy, are an upstart!” the psychologist fumed, a fat, blue vein trembling in his forehead.

“Ok, chill dude… I’m bipolar. Whatever you say… Beethoven was bipolar. I don’t think he had a beard though…”

For as long as I can remember, people have been trying to figure me out. Other parents told my mother and father that I was clearly lacking discipline. Teachers refused me an education unless I was prescribed enough Ritalin to keep the Rolling Stones touring for another century. Pastors believed I was possessed, and prepared to wipe my projectile vomit from the pews when I trotted into Sunday morning service.

Hyperactive, precocious, and more than a little odd, I was truly a handful. Snakes, snails, and puppy dog tails? If only my mother was so lucky. Someone must have littered my gene pool with pixie sticks, happy meals, mountain dew, and an Encyclopedia Britannica.

“There’s something wrong with him,” my mother would sob. “He’s allergic to people! He won’t sit still, he won’t listen, he’s always hurting himself, and he’s smarter than my whole graduating class put together!”

I treated other children like overgrown action figures, ordering them about, an infantile Cecil B. Demille directing a playground epic. “C’mon Tina, say that line again, and this time, say it with feeling! Put down the Polly Pocket and explain your character’s motivation!” Eventually, my peers developed their own interests, and I was left to wander the playground alone, thinking of Ghostbusters, Power Rangers, and… existential motifs in Russian literature.

“Scotty’s latest obsession,” was a phrase used regularly to describe the most current of my all encompassing interests. At twelve years-old, I had forgotten more randomly collected information than most people will learn in college. My obsessions gradually became less and less age appropriate as my focus narrowed; retired barbiturate and amphetamine combinations used as antidepressants in the 50s and 60s; sadomasochistic undertones in the cinema of Joseph von Sternberg; and the impact of synesthesia on the literature of Vladimir Nabokov; to name a select few.

I wasn’t interested in girls, or boys, for that matter. My parents bought me a Mustang for my sixteenth birthday – I drove it all of three times. I wore the same few outfits day after day. I was diagnosed with ADHD, Generalized Anxiety Disorder, Borderline Personality Disorder, Major Depressive Disorder, and, of course, Bipolar Disorder.

True, I was rather emotionally volatile, but this was greatly exacerbated by the constant chaos which engulfed my family. My father had played major league Baseball for the Seattle Mariners, and was absent for the majority of my childhood. As a result of his career, my family moved dozens of times before I was ten years-old. When I was twelve, my eight year-old brother fell 31 feet from a ski lift, nearly dying.  If that wasn’t enough, the routine MRI, which followed his accident, revealed a tumor in his brain. He  later underwent a dangerous surgery to have it removed. My adopted sister was diagnosed with leukemia at three years-old. My father required an open heart surgery to repair a leaking mitral valve.

Though thoroughly weary of hospitals, I was typically content to find a quiet corner of the waiting room and study Italian Neorealism – “Scott, your sister is dying, no one wants to hear about Federico Fellini!”

Psychiatrists pumped me full of every neuroleptic in the book (Adderall and Celexa, medications which I am now benefiting enormously from, were withheld because they are contraindicated in cases of Bipolar Disorder). I was as incoherent as Mel Gibson at happy hour, and experienced agonizing side-effects which led me to attempt suicide.

My sister died at ten years-old, after battling leukemia for seven years. I was holding her hand when she passed. I was fed up with life, convinced that I was a waste of oxygen in a cruel and meaningless world.

I began heavily abusing street drugs, playing intravenous Russian roulette with every pill and powder I could get my hands on. I would wake up on the cool linoleum of my bathroom floor cursing my indestructibility – I was still alive.

I spent time in mental hospitals and treatment centers. Luckily, my obsession with drugs had a shelf life, as all my obsessions do. I lost interest and moved on.

At 24 years-old, my girlfriend suggested that I might have Asperger Syndrome.

“Huh?”

“Scott,” she said, “you can recite every line of the movie Cabaret, yet you haven’t seen it since you were thirteen. You just listed every currently marketed benzodiazepine in alphabetical order, apparently for my entertainment.

“So…?”

“You’re a walking dictionary but you can’t remember your own address. Not only can you not drive, you can’t figure out which of the three cars parked in your driveway is mine. I think you should see a doctor.”

“I’ve seen them all.”

“Scott…”

“Ok… ok… Wait, I’m autistic? I want my money back…”

How did I manage to live a quarter of a century without being properly diagnosed. I’m autistic – duh!

Discovering my autism has been my saving grace. I will never forget the overwhelming emotions that poured over me when I first read about Asperger Syndrome in the DSM-IV. I’m not broken. I’m not bad. I’m just autistic and that is alright!  Since being formally diagnosed, I’ve come to understand and embrace myself for the remarkable person I am. In a few short months, I’ve become a prolific autistic writer, with a column appearing this week on wrongplanet.net, a potential contract with a publishing company, translations of my articles in Hebrew, public speaking engagements, and an opportunity to travel to San Francisco to help Alex Plank and crew film a documentary on Hacking Autism.

Somebody pinch me!

Even when I had given up on myself, God had a plan for my life. I now have the opportunity to use my gifts to spread awareness of autism spectrum disorders. If sharing my experiences spares other autistics from going through the pain of living undiagnosed, my struggles will not have been in vain.

My diagnosis has been my vindication and my inspiration. I want to shout it from the rooftops; “I’m autistic!”

Well, better late than never.

Seriously though, I want my money back…

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Hope Found in the Light

September 23, 2011 6 comments

This post is by Tara Washburn, an adult with Asperger’s Syndrome. She says, ‘I was diagnosed with Asperger’s Syndrome at age 28. I have spent the last 5 years coming to understand where I am now and what was happening inside of myself when I was a moderate-low functioning child. This is Autism from my perspective – Autism from the inside out.’ Visit Tara’s Blog, ‘Hearts that Feel‘ for more.

Autistic individuals are often put into a spectrum. This spectrum is an indicator showing how well your loved ones are able to adapt in society. I also have a spectrum, but it has a different meaning.

Everyone is on my spectrum. There are many that are on the low end of your spectrum that are on the highest end of mine. There are many who are successful (according to the world) who use manipulative means to make circumstances suit them. These people are on the low end of my spectrum. My spectrum measures function in lies or truth. It measures from despotic darkness to liberating light.

I do not pretend to be, or comprehend, the light. But I’d like to share my understanding of it and how it relates to individuals that are placed on your spectrum.

The light of truth is blinding when we are not used to seeing it. For example, imagine that you are outside on a dark night and suddenly a brilliant flash of lightning streaks across the sky. Initially you flinch and are filled with both fear and wonderment. So much is determined in that flash of light. Either you cling to the fear of the lightning, so brilliant, powerful and scary, or you cling to the wonderment, so new and somehow enticing.

Likewise, in the end, we either choose the fear that leads to hatred and suffering, or we choose the courage that leads to love and healing. There is no other path, really. All choices ultimately end in either place: we cling to the darkness or we embrace the light.

There are several ways that the world can harm to your loved ones. There are selfish people who take advantage of others, evil people who molest and make afraid, misguided people who unintentionally harm, clumsy and careless people who maim by mistake. Yet, focusing on situations that bring harm, and the individuals responsible, will not bring light to those who are seeking it. It may “take down” one more institution or individual, but it will not stop the abuse, lies, greed and corruption at the heart of the matter. If you fight them using their own weapons, you lose. Period. You cannot experience a victory for light using darkness.

I have often seen homes that cling to fear – the pain and anguish never seem to vanish out of their lives. I have seen homes that embrace truth – the healing and light seem to permeate not only those who live there, but all who enter. When I enter this kind of home I leave feeling as though I am in Heaven for a moment. I have seen other children on the “spectrum” who are likewise affected.

If you truly want to help your child, forgive those whom you feel have wronged your precious one, no matter the motive and reason. Forgive, love and you will see your child light up. The next time he begins to rock and cover his ears, running from darkness, look inside, find light and show him that there is a safe space in you.

In Their Own Words – Letter to Jaclyn

September 15, 2011 7 comments

This short film is by Brad Dotson, a student at the University of the Arts in Philadelphia who also has Asperger’s Syndrome. Brad made a very personal film about his twin sister, Jaclyn, who has autism.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Today

September 1, 2011 12 comments

This ‘In Their Own Words’ is by Cheairs Graves, who shares her life at Redefining Typical. It through writing and pictures that she shares her journey about Dawson, her son with autism. It is the marriage of the two that makes sharing her journey complete. You can find her on Facebook here.

She tries to play with him.

He walks away.

She tries to talk to him.

He does not answer.

She tries to calm him when he gets upset.

He pushes her away.

Then he looks at her.

He smiles.

He reaches for her hand.

She takes it.

She smiles.

And they walk.

And as I watch them.

I remember words.

Words that came from my father as he would send us off to school.

With a twinkle in his eye and a nod of his head my dad would say, ”Cheairs remember-Today is the first day of the rest of your life.”

So hand in hand my son and daughter walk off to school.

And with a twinkle in my eye and a nod of my head I whisper, ”Mae Mae and Dawson remember-Today is the first day of the rest of your life!”

I breathe.

Today-Yes- Today!

Copyright © cheairs graves August 25, 2011

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Power in Unspoken Words

August 18, 2011 37 comments

Sometimes words that aren’t actually spoken out loud are the most powerful of all. Lou is the married father of three. His eldest daughter has autism. You can read more at blog, Lou’s Land.

A message from Lou:

Sometimes anger can really inspire you. Sometimes it is the simple ideas that are the most effective. When the two come together, it can lead to something really special. That has been the experience I have had with my “Fixing” Autism video.

I don’t think anybody would ever describe me as a braggart, but this time I am not going to shy away from being proud of something I created. Probably because this time it is personal. Have you ever reached your limit? On August 13th, I had reached mine.

I had a simple plan. Share my story and back up my frustration with facts. The numbers had been driving me mad for months. While doing some research on autism statistics, I had come across a page on the Autism Speaks website entitled; “Facts about Autism” and the numbers were dizzying. The disparity in funding made me sick to my stomach. Most people of child bearing age know the basic statistic that 1 in 110 children in the US will be diagnosed with Autism Spectrum Disorder, what most people don’t know is the frustration that comes from the parents of autistic kids when they see the complete lack of equal funding for something that appears epidemic in nature, particularly to those involved.

I must have visited that page 10 times. Each time I looked at the numbers my frustration increased. As I stared at my computer screen, I felt like more people needed to understand these statistics. They were absolutely vital to the war that parents dealing with ASD are fighting every day. Those numbers are why these parents have to struggle. But while I found the numbers important and interesting, I really felt like they were dead on the page. Reading statistics is not exactly exciting. It isn’t “sexy” as the Hollywood types say. That is when the light bulb turned on.

I had to give the numbers meaning. I had to personalize them. I had to add a human element to what those statistics meant to the parents of an autistic child. To do that, I knew that I would have to make myself a little vulnerable. I had to tell our story and why I felt those numbers had to be shared. What I realized as I made my notes was that it really wasn’t MY story. It was OUR story. The autism community has a shared experience of embarrassment, shame, anger and helplessness. Often times, all of these chips stacked against us result in us being quiet and shutting down. We become discouraged and for fear of being denied yet another service we view as vital but the insurance companies see as “experimental”… we do nothing, paralyzed by fear.

Powered by a lack of sleep from staying up with Bianca most of the night, I opened up some notes I had emailed to myself and started to transfer those thoughts to index cards. I knew exactly what song I wanted to use because a few months earlier I broke down in the car when it came on the radio. It made me think about my daughter. As a man, I could certainly relate to the idea of desperately wanting to “fix” something. That feeling tends to be instinctual to us men folk when we see that something is wrong. We want to fix it. Sometimes we make it worse, other times we may just confuse the situation, but when we are really fortunate we can set things right.

That is what I hoped to do… make things right. Affect change. Change the dialogue. Make other parents that are in my situation feel like they can scream from the mountaintops about the injustice and the frustration that comes wrapped up in a red-tape bow every time you have to talk to the insurance company, or go over an IEP. I wanted to make it so that others knew that it was OK to be mad as hell that they have filled out yet ANOTHER form asking what your child’s limitations are, while seeming to care less about what they excel at. I wanted to affect a person with neuro-typical kids in such a way that when they see a child acting up in public, they glance over not with disdain but with compassion.

So I had a webcam, index cards, an MP3 and most importantly the raw, honest truth. After I edited the piece together I clicked play to review my work. I felt like I was watching it for the first time. As if I wasn’t even the one in the video… and I knew it was right. Sure there are some technical things I would like to change… but the message was dead on.

I debated just putting the video up on my Facebook page, but that was safe. I really wanted this message to be heard. I was proud, and I was still angry. I uploaded it to YouTube, told some friends about it, and shared it on the Autism Speaks Facebook page. The reaction was immediate and incredibly humbling. It gave me the motivation to promote it with a little more gusto. An old co-worker of mine believed in the message so much that she started to promote the video all over the Twitterverse. That gave me even more energy to feed off of, and before you knew it the video was being seen by important people in the autism community. Imagine my surprise when I took Bianca to therapy with the intention of telling the therapists about the video only to have them tell me that they saw and loved it before I could bring it up. I was stunned.

So I encourage my fellow parents out there in Autismland… don’t just talk to others about your experience… SCREAM it. It doesn’t have to be a video. All you need is to own the truth. It is OK. It isn’t whining if there is injustice. When insurance companies will pay for people’s allergy shots because their new girlfriend has a kitty, but not for my daughter’s speech therapy… and she CAN’T COMMUNICATE… it is OK to be mad. Let’s end the shame and the silence and start holding people accountable.

 

The Combating Autism Reauthorization Act (CARA) of 2011 would reauthorize the landmark Combating Autism Act of 2006, securing the federal response to the national and public health emergency posed by autism spectrum disorders.

For more information on autism legislation and advocacy, please visit Autism Votes.

In Their Own Words – Seeking a Connection

August 17, 2011 28 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism. 

As I read  a diary of a mom’sa pink sock sorry,’ I immediately fell back to my younger self trying to connect with my older brother Jeff. I understood what it was like expending endless amounts of energy just to have my brother see me. It seemed back then he just never did. Like my friend Katie, I just wanted to love my sibling.

For years, we worked to have Jeff let us in and for years he wasn’t ready. He used to watch the television with his face practically touching the screen. From the moment I could stand, I would try and wedge myself between him and his object of interest, always to be knocked over. My oldest brother Tom and I never stopped loving him – we actually became more fierce and protective.

My mother is a very talented photographer and so much of our life is captured on film. The photos over the years show us clinging to Jeff. He is either staring off into the distance or running away. I think they are beautiful. They are honest. That is how it was.

Eventually, he came around. Now he can’t get enough of us! But there are times when we go back to the old days, and I have to respect his need for space. He knows that I love him and I’ll be waiting when he is ready.

The photos look more like this now.

Jeff is twenty-six, which comes with a whole new set of challenges. We made it over the hump of him transitioning into a group home. It is more than a year later and we are still making adjustments. To be honest, I don’t know that we ever will fully adjust. Despite that, we will try and keep moving ahead giving Jeff the most productive and full life possible.

I know as time wears on Jeff will need me, but in truth, I will need him so much more.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Why I Listen

August 12, 2011 3 comments

My name is Cola.  One year ago I became Auntie to an adorable 4-year old little drummer boy I met in a restaurant one evening.  His expressions of life beat to a rhythm apart from, yet inclusive of the majority. When we began to communicate he echoed my words and often released my hugs before I could inhale the fragrance of his beauty. Initially, I would find myself feeling overwhelmed and crying because I felt helpless in my ability to connect with him, but as we began to spend more time together, I began to learn that entire he said when he did things repeatedly. My heart began to  translate what he wanted, my mind began to seek all that he needed and my passion said we could have it all, by any means necessary; realizing that in order for us to have it all, we would have to employ the skills of everyone. So To start we organized playgroups with my nieces and nephews his age. We began reading very short stories during story-time, modeling expressive language and phonetics for him to speak and kept redefining transition techniques along with a host of other things, as because our little one’s actions of autism where loudly speaking, saying:  “I have all that I need to be a successful, independent, strong human being, but I need you to intervene and provide me with the resources to support my personal developmental needs.”  In that moment, autism spoke, and as we listened, and boy oh boy did our little drummer boy began to respond and change recognizably.

The echolalia diminished, his social skills increased, his transitions became age-appropriate and he began talking so much we had to ask him at bedtime to have quiet-time so we could go to sleep. I could go on and on talking about this budding little one, sprouting as if he were an oak tree but the pages of this blog would be overwhelmed and we would not be able to share with you some important chords to make beautiful music with your little ones who so anxiously wait to plant seeds of Oak Trees.

Autism is a voice of the adorable little ones with a unique way of communicating. There is no such thing as “average” when it comes to any child and there is no “norm” when it comes to any human being but what there is, is a majority. Yet, majority isn’t necessarily what’s right and minority isn’t necessarily what’s wrong; however, there are just defining characteristics of differences that make each individual a unique expression of love.

My profession as an Early Intervention Program Coordinator for children ages 2-5 with developmental delays and disabilities lends to me a world of discovery. A treasure of resources, I aspire to share with many. So, when I learned of [Grammy-nominated  R & B singer] Bilal‘s mission to use his platform of music to raise awareness about a subject dear to his heart, I could not pass up the opportunity  to partner my knowledge, passion and energy to expand, neither could I ignore the synchronized happenstance fact that the name of Bilal’s tour is the nickname we call our child. [For more information on Bilal's LITTLE ONE SUMMER TOUR for Autism Awareness, click here.]

On this tour we will share the developmental milestone check list and local resources. We will link you to appropriate services for your little ones to experience his or her civil right to a “Free Appropriate Public Education”. We will also share contact information of proven advocates and tie your heart strings to strong connections with other families who share your passion and vision of a beautiful landscape for your little one’s budding oak tree to grow into a landmark that will outlast generations and endure the phases of growing into a strong, healthy, independent human being.  So, when you find yourself pondering the question of why you pour out your heart, continue to lend your tireless efforts and do what you do in support of these unique little ones, the answer will always exist in the silent voice that whispers, “AUTISM SPEAKS!”

This entry is dedicated to Dominic, Our Little One and his Mother Marta.

Cola

Cola is also a children’s author and motivational speaker. Email her at: phylliscola@gmail.com www.childrenmeanttheworld.org .

This slideshow requires JavaScript.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Follow

Get every new post delivered to your Inbox.

Join 1,049 other followers

%d bloggers like this: