I’m Watching You, Autism. This Is What I See.

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Screen Shot 2015-03-15 at 11.05.37 PM I’m watching you, Autism.

Right now I’m looking out my dinning room window watching you “fiddle” in the front yard. You urge my 12-year-old son to pace back and forth while rubbing his fingers and hands together. Sometimes he rubs them together up by his nose, making him look like a little chipmunk. Every once in awhile he will wave to his younger brother and his brother’s friend playing basketball in the driveway. Seeing you this way twists my heart into a knot.

I think you first encouraged my son to fiddle when he was about 6 years old. He started doing it while I was making dinner one night. I asked, “Evan, what are you doing?” Matter-of-factly he replied, “I’m fiddling.”

Of course, fiddling is just a form of stimming. It helps him reduce the anxiety you cause and helps him decompress after a long day at school. Together, you two have worn an 8-foot path in our lawn.

Tonight, prior to this fiddling, I watched my son fight you, Autism. He was overcome by anxiety because he dropped a mint between the front seat of the car and the center console. He and I looked for it for ten minutes with a flashlight but simply could not reach it. I watched you pour frustration over my child, turning his cheeks red and forcing him to fight back tears. I’m not going to lie. I had no time for you in that moment. I raised my voice while saying, “Evan, you are not going to cry over a lost mint! This is a little problem!” For good measure I even added, “We are not going to live our lives this way!”

And so now you fiddle in our front yard, the two of you.

Autism, over the years I’ve watched you, and this is what I’ve seen.

You are anxiety, and you are empathy.

You are rigid, and you are helpful.

You are unpredictable, and you are joyful.

You are a loner, and you are endearing.

You are repetitive, and you are honest.

You are socially challenged, and you are admired.

You are brave.

Recently, you and my son stood in front of his sixth grade chorus class to audition for a solo for the spring concert. Evan loves to sing, and you don’t care what people think — a perfect combination of talent and courage. He told me the girls clapped for him.

And sometimes, the most amazing words come out of Evan’s mouth, like the time he declared, “Mom, all the years that I’ve been born have been my favorite.” I guess I need to give you a little credit for that, Autism, because you can make him see the world in a such beautiful way.

I’m still watching you, Autism. No doubt, I will continue to watch as you shadow my remarkable boy throughout his life. Fortunately, beyond the times of outdoor fiddling and lost mint frustrations will be those glorious moments where my son Evan sings courageously in front of a crowd.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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I Hate You, Joubert Syndrome, But I Need to Thank You for a Few Things

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Dear Joubert syndrome,

You’ve turned my life upside down. Over the last five years I’ve cursed you oh so many times. I’ve called you every name in the book, cried about what you’ve done to me, my family and most important, my daughter.   But I’ve never gotten the chance to say thank you…

Yes, you heard that right. Among all of your hate mail, this is a thank you letter. You’ve robbed us of many things, but what you gave us is so much more valuable.

You robbed my daughter of her language skills; she’s nonverbal at 5 years old, and I curse you every time I think of the real possibility that I may never get to hear the words, “I love you, Daddy.” But in return you taught me to “hear” more than just her words, to pay closer attention to her and understand her world more than I ever would have otherwise. You have taught me what it means to truly understand a child and the world they live in.

You’ve robbed my daughter of her balance and coordination; she struggles to accomplish the simplest of milestones that others take for granted, such as sitting independently and walking and feeding herself. But in return you’ve taught me to appreciate her every accomplishment, to marvel at her determination and see her inner strength.

joubert

You robbed me of my initial vision of what being a father would be like and my hopes for what I would see my daughter become. I spent a lot of time trying to rid your from our lives and “fix” my daughter, but you showed me I was the one who needed to be fixed, and you fixed me, my views on life and my views of those who are different. Instead of seeing how someone walks funny, I now see someone who has worked hard and overcame so much to be able to walk at all.

You’re the mutual frenemy of so many amazing people around the world. People I would never have even crossed paths with if it weren’t for you. Thanks to you, I now not only call many of them friends, I call them family.

You’ve robbed my daughter of all those things I thought were the most important things in life. But in return, you showed me I was wrong about what’s really important and showed me what truly matters.

You’ve shown me strength I didn’t know I was capable of, love I didn’t know I was missing out on, hope to accomplish things I never thought were possible, and a passion to focus my life on.

So in short, Joubert syndrome, you’re part of my family now. There are times I want to deny you and claim that you don’t define my daughter, but the truth is you’re a part of who she is at the core. To deny you is to deny her and everything extraordinary about her. My relationship with you is a marriage, one without the possibility of divorce, and you’ve made me, my daughter and everyone we meet along the way, better people. And for that I thank you.

P.S. I still hate you though.

Sincerely,

The proud father of an angel

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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6 Films That Feature a Main Character With Cerebral Palsy

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March is Cerebral Palsy Awareness Month, and to celebrate, The Mighty decided to research five films released over the last 30 years that tell a story about someone living with cerebral palsy. Take a look:

1. Margarita, With a Straw (2014)

Laila (Kalki Koechlin) is an aspiring writer and lyricist who was born with cerebral palsy. She lives in India with her family until she’s accepted to New York University on a full scholarship, at which point she moves to Manhattan with her mother. In the city, she unexpectedly falls in love and begins to rebel against the constraints she’s lived with her entire life.

The film centers on Laila’s efforts to live a normal life despite her cerebral palsy. It received praise for making her disability a significant but not overwhelming aspect of her character. “Our heroine certainly has physical limitations and related phycological setbacks,” Dennis Harvey writes in his review for Variety. “But it’s her adventurous spirit (abetted by supportive family and friends) that sets the tone in [director] Shonali Bose’s winning sophomore feature.”

2. Enter the Faun (2014)

“Enter the Faun” differs from the other films on this list because it stars an actor living with cerebral palsy. Gregg Mozgala was born with the condition and had 12 years of physical therapy before working with Tamar Rogoff, a choreographer who, within eight months, changed the way Mozgala walks. Rogoff directed and produced this documentary, which recounts her experience training Mozgala to become a dancer in a piece called “Diagnosis of a Faun.”

Rogoff and Mozgala’s story challenges barriers associated with disability and has prompted a movement to inspire others to do the same. The film’s creators founded the “Cerebral Posse,” an organization that encourages people living with cerebral palsy to get together in their area and learn from each other, discuss issues facing their community and participate in the arts communities.

3. War Eagle, Arkansas (2007)

Enoch (Luke Grimes) is a star baseball pitcher with a speech impediment. Wheels (Dan McCabe) is his witty, talkative best friend with cerebral palsy, who’s nicknamed for his wheelchair. As their high school graduation nears, each of them worries about what comes next. When Enoch considers leaving their small town of War Eagle to attend university on a baseball scholarship, Wheels grapples with the fact that he has fewer options and considers what his future would hold without his friend.

The two support each other throughout the film, but Wheels, with his humor and confidence, serves as Enoch’s voice of reason. He helps Enoch work through his social anxiety, prompts him to ask out a girl he likes and encourages him to stand up to his domineering grandfather. “I don’t care if you can’t get out a full sentence,” he tells him in the trailer below. “Don’t let your grandpa do all the talking.”

4. Door to Door (2002)

Based on a true story, “Door to Door” is about the late Bill Porter (William H. Macy), a man with cerebral palsy who, despite being told repeatedly he was not employable, became an exceptional door-to-door salesman. Day after day, Porter put his physical limitations aside and walked 8 to 10 miles a day, slowly winning over customers until he became one of the top salespeople for J.R. Watkins grocery distributor.

To prepare for the roll, Macy, an able-bodied actor, met with Bill Porter and did some research on cerebral palsy but acknowledged how difficult it was to act out the disability. “I realized pretty early on that whatever I did would have to be stylized because, well, try as I may, it is really hard to imitate something like that,” Macy told ABILITY Magazine.

5. My Left Foot (1989)

This drama is based on the 1954 autobiography of Christy Brown (Daniel Day-Lewis), an Irishman with cerebral palsy, born into a working class family in the 1930s. The film follows Brown, who can only control the movement in his left foot, as he struggles to find his place in the world. He eventually goes on to become a remarkable writer and painter.

Day-Lewis, who is known for his method acting, went to admirable lengths to portray Brown as accurately as possible. He remained in character as a man with cerebral palsy throughout the duration of the production — he never left his wheelchair and had to be carried across the set and spoon-fed by the crew, The Independent reported. Hal Hinson summed Day-Lewis’ performance up best in his review for The Washington Post:

Daniel Day-Lewis clenches his teeth so hard and blinks so ferociously that you’d think he was trying to force steam out of his ears. With his frail body straining against itself, his neck twisted and his hands stretched out to full length, he tortures each word out of himself, as if he were ripping them out of his flesh. And we feel that in watching him we’re watching the essential struggle — not just a man fighting against his disease, but the fight to communicate that everyone wages.

6. Gaby: A True Story (1987)

Gabriella Brimmer was born with cerebral palsy in Mexico in 1947. After a hard-won battle to attend conventional school to learn to read and write, she became a published author and was one of the first to advocate on behalf of people with disabilities.

“Gaby: A True Story” is based on Brimmer’s life and work. The film follows Gaby (Rachel Levin) as she learns to communicate by spelling out words on an alphabet board with her big toe. She goes on to fight tirelessly to attend public school rather than the separate school for students with disabilities. Though the film was released almost 30 years ago, it evokes topics that are still relevant today, such as the right to an equal education for students with disabilities, the right to live independently and how people with disabilities relate to their families.

How well do you think these films portrayed cerebral palsy? Let us know in the comments below.

Read more about “My Left Foot” and other films that portray disability here.

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A Message for My Daughter’s Tuberous Sclerosis

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blogger-image--394078677 Dear (not so dear) Tuberous Sclerosis,

I despise you.

You’ve brought pain to my family since the day your name was so gravely spoken. Your “incurable” tagline ripped through my heart like a million razor blades, tearing it to shreds. You’ve made me doubt myself and my ability to care for my own daughter. Your dooming prognosis made me want to run far away. I still feel ashamed when I think of those fleeting thoughts.

I’ve never been faced with a problem I couldn’t fix or at least attempt to fix. You, however, are a different creature. I can’t fix you or your damaging effects that have taken home within my daughter’s innocent body.

As I lay my body on my daughter, attempting to restrain her for an EEG, I feel nothing but hate for you. As each tear falls from her face, I carry more and more anger. Within those moments you make me want to give up. I want to throw my hands in the air and wave the white flag, surrendering ourselves to your overpowering existence.

But then my daughter, who has been your prey, shows her amazing strength and cracks a smile. All of a sudden the anger, pain and grief leave the room. You can attack her from all sides, and she still has the ability to show her strength. She is stronger than you. Which makes me stronger than you. Her smile returns my strength and makes me once again renewed and ready to tackle whatever you throw our way.

You will not defeat us. We will not give you that power. We will fight for our daughter and the thousands of others who you’ve attacked.

You may be a part of our life, but we refuse to be defined by you.

You are messing with the wrong family. We won’t go down without a fight.

Sincerely,
The Lens Family

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Best Advice I Can Give a Mom Who Just Got an Autism Diagnosis

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A sweet, overwhelmed momma sent me a message this week. She’d just received an autism diagnosis for both of her twin boys. She already has them in speech therapy and occupational therapy. She’s already been doing everything she can to try to help her sons, without really knowing why. She already knew, prior to hearing it from the doctor, that something was going on. But then the doctor said it. They both have autism.

It was one of those moments, I’m sure. The ones that just stick and define the rest of our lives, for better for worse.

Both of her precious sons have autism.

And her only question for me?

“Where do I start?”

My heart broke for her.

I remember being this momma. I remember walking out of the doctor’s office, thinking everything had changed, but I had no real idea of what I was supposed to do differently once I got home and back to mothering my son.

I remember thinking, “Why doesn’t someone tell me what I am supposed to do?

I remember thinking, “Even if someone tells me, I don’t think I can do it. I am freaking out. I am depressed. I am too tired to do anything right now.

I remember thinking, “He has autism. He has autism. He has autism,” over and over again, letting it sink in, wanting to accept it, needing to get my head to embrace it, so that my heart would stop clenching inside my chest.

And through all of my own processing, anxiety attacks and grief – my son was still the exact same boy he was before I walked out of the doctor’s office that day with a diagnosis.

He still is.

The truth is that a diagnosis changes everything, and it changes nothing.

This momma left the doctor’s office with almost no direction – only more appointments with more doctors.

And I what I told her is what I would tell any parent in the same situation, in the newness and confusion and fog of an autism diagnosis.

Screen Shot 2015-03-14 at 12.32.18 PM

It’s OK to just do nothing for now.

It’s OK to go home and go out for ice cream.

It’s OK to snuggle up with your child tonight and just watch that video she loves and over and over again.

It’s OK to get a babysitter and get out with your husband. Don’t talk about autism at all or talk about nothing else – spend the time the way you need to spend it.

It’s OK to read every single thing you can find on the internet, and it’s OK to avoid all the articles like the plague.

It’s OK to spend more on books from Amazon than you spent on your first beater car.

It’s OK to, instead of books, buy a bunch of new makeup or get your hair done.

It’s OK to just be the same mother you were before the diagnosis…

because you are.

You’re not harming your child by waiting a few days or weeks to get your bearings – in fact, you’re helping him.

Because a momma who’s running scared and just doing anything to feel like she is doing something is not what your child needs.

In time, you will surprise yourself at how capable and strong and educated and determined you will become for your babies. You will easily be able to understand all the words, acronyms and language the doctors and therapists and other mommas speak as if it is their native tongue. You will.

And you will be really, really good at it.

But for now, you don’t have to be.

Your child is the same child, and you are the same momma.

Nothing a doctor determines changes that.

My best advice, in the first days and weeks post diagnosis is simply this –

take as much time as you need.

This post originally appeared on Not the Former Things.

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An Apology to My Tourette’s Syndrome

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Dear Tourette’s Syndrome,

When I met you I was just 10 years old. I’ll admit, I wasn’t your biggest fan back then. I’d never heard of you before, but everyone I trusted told me you were bad news, and at the time I believed them. You were like that annoying relative you’re forced to see every year at Thanksgiving. But for me, every day was that thanksgiving. How could I be thankful for something that caused me so much physical discomfort and social stigmatization? 

I couldn’t. For the longest time I couldn’t bring myself to tolerate you. I even tried to pretend you didn’t exist. I tried to ignore it when you interrupted me with peculiar sounds and muscle movements. Yet, you kept showing up to parties I never invited you to–you’re pretty sneaky that way. But recently, something changed in me. I began to realize that beneath your disrespectful behavior and constant disruptions, there is something extraordinary, something uniquely beautiful.

Don’t get me wrong, there are times I wish we’d never met. After all, you’re the reason I blink my eyes as if there was something stuck in them. You’re the reason I was bullied in fifth grade for making clicking sounds with my mouth and pursing my lips together as if I was trying to kiss the air. You’re the reason I yawn when I’m not even tired. You’re the reason my elementary school music teacher yelled at me in front of my entire chorus class for making too much noise. You’re the reason my yoga instructor told me to spit out my gum when I wasn’t even chewing any.

But you’re also the reason I’m so perceptive to the world around me. You force me to work harder and look further. You give me a riveting, rhythmic presence that reveals itself when I’m singing and performing. But most important, you’ve helped me learn about the unrealistic standards of normality that exist in our society, and you’ve dared me to break them. 

Sometimes I think of you as my own personal trainer. Your push me to be better. You inspire me to be open-minded to eccentricity and peculiarity. You’re a challenge I was forced to accept, a challenge that has made me stronger.  

The problem is, most people don’t approve of you. They think you’re a bad influence on me. So I try to hide you from the world. I’m doing it for your own good, really. If I showed you, the true you, I might embarrass the both of us. So I disguise you as natural acts like yawns and coughs and sneezes to avoid the looks of disapproval and disgust I might receive otherwise. However, you always get back at me, appearing fervently when I least expect you to and making up for lost tics. 

I’m writing to you because I want to say I’m sorry. I’m sorry for complaining about you and refusing to appreciate what you have done for me. My whole life, I’ve focused on your flaws rather than your artistry. But I’m finally ready to accept you, to embrace you and to introduce you to the world. After all, I can’t imagine my life without you, and to be honest, I wouldn’t want to. 

Yours Truly,

Tara 

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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