When My Daughter Noticed Some Children Staring at Her


My daughter Namine is certainly no stranger to staring, but as she has gotten older she has become more attentive to when it happens.

We had to go to the grocery store the other day. As Namine and I waited for Jessica, we noticed two children staring at us (in all likelihood, more so at Namine than at me). One was probably too young to know better, but the other one definitely was not.

Namine raised her hand to say hello, but the children were dragged off by a person I assume was their mother before she had a chance.

Namine turned to look up at me. “Daddy, I don’t like it when people stare at me.”

“I know exactly what you mean, sweetie,” I replied. “But remember not everybody stares out of rudeness. Sometimes they just want to say ‘hi,’ and they don’t know how.”

I thought about how much it bothered me — and it still does, some days — when I’d catch people staring. But I have to remember my own advice, too.

I gathered my thoughts and continued, “The best way to respond to someone staring is to say hello. If they’re staring out of rudeness, then they’ll get embarrassed and leave. But if they’re staring because they don’t know how to say hi, then you’ll be showing them it’s okay.”

“Okay, Daddy,” she said. “I’ll say hi and show them how to be friends.”

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A version of this post originally appeared on eichfam.net.

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Social Media Movement Asks Why This Deadly Form of Breast Cancer Is So Underfunded


Beth Fairchild has stage IV metastatic breast cancer, which means the cancer has spread from her breast to other parts of her body. She’s tired of seeing money spent on “pinkwashing” and awareness campaigns rather than on researching treatments that could help keep her and other stage IV patients alive. So she launched a social media rally, Stomp Out BC Monday, to make her message heard. All day Monday, March 2nd, she’s inviting everyone to use the hashtags #metsmonday, #bckills and #dontignorestageiv on Twitter, Instagram and Facebook to get the topic trending.

It’s important that we’re heard because people are spending literally hundreds of thousands upon millions of dollars on pink ribbon merchandise, donating to Susan G. Koman, doing the walks for a cure,” Fairchild, who lives in Craven County, North Carolina, told WCTI12 News. “Two percent of the money [raised for breast cancer research] — 2 percent — goes toward research for [metastatic] treatments that keep me alive and for research that will find us a cure.”

No one dies from cancer that remains in the breast — it’s only when it spreads to other vital organs that it becomes deadly, according to the Metastatic Breast Cancer Network.

People and organizations have been voicing their support for Fairchild’s campaign on social media, calling for an increase in funding and attention toward metastatic breast cancer:

To help spread Fairchild’s message and learn more about stage IV metastatic breast cancer, search the hashtags #metsmonday, #dontignorestageiv and #bckills or visit the campaign’s Facebook page.

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7 Films That Tried to Accurately Depict a Character With Autism


In a film industry that tends to glamorize and oversimplify disease and disability, autism isn’t always accurately depicted. It’s a frustrating reality, especially if you know firsthand what it’s like to live with the condition.

The Mighty decided to take a look at seven films released over the last 30 years that received praise for how autism was portrayed. Take a look:

1. The Story of Luke (2012)

When his grandmother and caretaker passes away, Luke (Lou Taylor Pucci), a sheltered 25-year-old with autism, must learn to navigate an unfamiliar world. Luke determinedly sets out to find a job and fall in love.

In an interview with Disability Scoop, Alonso Mayo, the film’s writer and director, said students at the school his mother runs for people with developmental disabilities inspired him to write the script. “They wanted a girlfriend, they wanted to start living life on their own,” Mayo told Disability Scoop. “I started seeing these young adults having the same issues everyone else has around relationships and independence.”

2. Fly Away (2011)

This moving film centers on Jeanne (Beth Broderick) and her relationship with her daughter, Mandy (Ashley Rickards), a teenager with autism. As Mandy gets older and her needs change, Jeanne works to reconcile her own goals for daughter with what is actually best for Mandy.

Janet Grillo, the film’s writer and director who has a son with autism, told Bitch Media she hopes families who have children with autism find solace in having their stories told. “This is a community that has been in a great deal of pain and continues to be engaged in a very profound struggle,” Grillo said. “I felt it was important for us, first and foremost, to honor through storytelling.” She added that she sees the film as a tool of activism and hopes it has an impact on the way society views adults with autism.

3. Adam (2009)

This romantic comedy centers on Adam (Hugh Dancy), an electronics engineer with autism who strikes up a relationship with Beth (Rose Byrne), his upstairs neighbor.

Adams exhibits obsessive behavior, social awkwardness and a tendency to feel overwhelmed that’s characteristic of people on the spectrum. In a review for The New York Times, Jeanette Catsoulis wrote that Dancy’s performance is “credibly eccentric yet still accessible” and that the actor “reflects a mind drawn to symmetry and familiarity. So when the dreamy Beth moves into his building and his life, Adam… is forced to develop a whole new set of coping skills.”

4. Mary and Max (2009)

This clay-animated black comedy begins in Australia in 1976, when Mary Dinkle (Bethany Whitmore), an 8-year-old who has trouble fitting in, picks up a New York City telephone book, chooses Max Jerry Horowitz’s name at random and writes him a letter. Max (Phillip Seymour Hoffman), 44-year-old man, initially experiences an anxiety attack upon receiving Mary’s letter but decides to write back, and the two strike up a lifelong friendship.

Preferring to be referred to as an “Aspie,” Max sees nothing wrong with his condition. He writes to Mary (clip below), “I do not feel disabled, defective or a need to be cured. I like being an Aspie. It would be like trying to change the color of my eyes.”

5. The Black Balloon (2008)

“The Black Balloon” portrays an Australian family with two sons. The oldest brother, Charlie (Luke Ford), has autism and ADD. Having just moved to Sydney, the younger brother, 15-year-old Thomas (Rhys Wakefield), is desperate to make friends and live a normal life, but Charlie constantly embarrasses him. With the help of his new girlfriend, Jacki (Gemma Ward), he learns to accept his brother for who he is and stops trying to hide such a big part of what defines his family.

The film depicts the nuances of what it’s like to live with someone who has autism. Charlie can be lovable and endearing, but he also throws tantrums, screaming and inflicting physical harm on his family members. “The story elements of ‘The Black Balloon’ could have been manipulated to make the film false and cute,” Roger Ebert wrote in his review. “The film tries to be true. The uplift comes in how the family and Jackie respond to Charlie… They are focused on doing what needs to be done. Charlie is theirs.”

6. What’s Eating Gilbert Grape? (1993)

With his father dead and his mother unable to care for her children on her own, Gilbert Grape (Johnny Depp) becomes the primary caregiver for his younger brother, Arnie (Leonardo DiCaprio), a teenager who has autism. Gilbert becomes fiercely protective of Arnie, who, because he doesn’t understand social expectations and norms, is always getting into some kind of trouble.

Simon Baron-Cohen, the director of the Autism Research Center at Cambridge University, wrote that “the film has a powerful message for our society, which remains just as relevant today: that people with autism need huge levels of support and so do their (often overlooked and forgotten) families.”

7. The Boy Who Could Fly (1986)

Eric Gibb (Jay Underwood), a teenager with nonverbal autism, has a tendency to stand on rooftops and window ledges as if he can fly. His behavior alarms those around him, but when he saves Milly (Lucy Deakins), the 14-year-old girl who moved in next door, from a deadly fall, everyone begins to wonder if he really can fly after all.

This film is notable for demonstrating how people with nonverbal autism communicate with others before communication technology and devices were more widely available. “One of the things that appealed to me in ‘The Boy Who Could Fly’ is that the kid doesn’t speak,” Underwood told The Orlando Sentinel. “I would have to rely on other things rather than just my voice, like facial expressions and body language.”

How well do you think these films represented autism? Let us know in the comments below.

Read about “Rain Man” and other films that portray disability here.

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Dear Autism, This Is Why My Family Wants to Thank You


Dear Autism,

You’re a big word!

A big word with an even bigger impact.

When you first entered our lives you took over everything. All of us. My son, TJ, obviously, but also his brother, Peter, me and his dad, Sean. You controlled everything. But thankfully, over time and with a lot of research and learning, you’re now just another part of our lives. You’re no longer all encompassing. You’ve helped us become a stronger family and better parents. You’ve brought some wonderful people into our lives.  You’ve helped us to learn not to take anything for granted and that even the smallest of accomplishments is cause for celebration. You’ve made a lot of things clearer for us. You’ve helped us separate the things that really matter from the things that simply don’t.

We’ve weeded a lot out of our former lives to make room for you. You’re messy sometimes — really messy — but there are lessons for all of us, even during those times. And finally, you’ve helped us understand both of our boys even better than we would have otherwise.

You’ve been a troublemaker, autism, but you’re also a gift in so many ways. And you’re a part of all of us forever. Just a part — you’re not everything. But for that part, I want to thank you for bringing out the strength and power in all of us Jordans. We’re a mighty force to be reckoned with because of you!

Love,

Lauren

jordans

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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Something About a Cerebral Palsy Diagnosis That I Want Everyone to Know


This is who I am, and there’s something I want every parent/family member and even kids with cerebral palsy to know…

First of all, to the moms, dads or anyone who raises a child with complex special needs: You are truly amazing! I know for a fact that I wouldn’t have gotten as far as I have without my family. Your child will need you every bit of the way. I bet this isn’t exactly how you expected things to turn out, but if you have come this far — then you can do anything, even if the obstacles seem insurmountable. There’s great strength to be found in the human condition.

There will be days, terrifying days, where you’re uncertain and feel like crumbling against the weight of it all, but I encourage you to hold on just a little bit tighter to each other. Don’t alienate yourselves or try to face everything on your own. In the face of great difficulties, you’re strongest as a unit. Moms and dads, try not to neglect yourselves for the sake of your children. They will need you, but you have to be healthy too. Remember that in your child’s eyes, you’re the industrial strength super glue that holds the fabric together. As the parents, you guys are a team, so take the time to go out on dates and spend time together alone. Not only is this good for you guys, but it expands your child’s life as well by introducing other people into their world. Also take special care in spending time with your other children. They need to know and understand they’re just as important and special and worthy of being loved.

Don’t worry about what your child isn’t doing — just focus on right now. When I was growing up, I’d like to have thought that my family had some sort of idea or fantasy of what my life could have been like — and there were nights where I went to bed worried that I’d disappointed them somehow. Now I know this wasn’t true. Every day that your child is here is nothing short of miraculous. They’re perfect, despite all the challenges they’ve faced. Celebrate that! Dream big for them because you want them to have opportunities like every other kid. But focus small. Revel in a smile or word or productive therapy session. It makes us so happy to see you happy. You’re truly a team of amazing individuals.

Now, there’s something I want your child to know. If they’re ever told the phrase, “I just don’t think that it’s possible,” then I encourage you to smile,and maybe even laugh. Nobody knows what your child is or isn’t capable of. Even if the victory may seem small, a victory is still a victory. Never give up hope because at the end of the day, that is what carries us through. At the time of my diagnosis, the first thing the doctor had said was to expect nothing of any great consequence. So in spite of his words, my family and I expected something. At the time something was unclear, but something is completely different from nothing.

I’m happy to report, that since that day, I went on to be placed in mainstream school, graduate high school with full honors and will someday hope to have a successful and extraordinary life. It’s good to set important goals for your child and support them in achieving them because you never know what their exceptional lives hold. After all, they were raised by exceptional parents.

Never give up because there’s a whole world out there. And no footprint (or tire track) is ever too small.

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