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Autistic heroes need your support. September 19, 2013

Posted by ourfriendben in wit and wisdom.
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Our friend Ben has posted about Kickstarter, a crowdfunding site, before. (If you’re a Luddite like us, a crowdfunding site is one where anybody can pledge some money, a little or a lot, to support a cause they believe in. Typically, you’ll get some kind of special reward for your contribution.)

I’ve also posted about autism and Asperger’s syndrome (high-functioning autism, now simply called the high end of the autism spectrum), and of a pair of autistic brothers and their father, and their amazing achievements. (Type “A superhero we can all relate to,” “Autism rocks,” and/or “Autism still rocks” into our search bar at upper right to learn more about this incredible family.)

Autism matters to me because my brother’s two children are autistic. My nephew’s erratic behavior made him ineligible for the high school of his choice in D.C., even though his brilliance should have made him a shoo-in. His sister is far more well-adjusted, but she still has social issues. She loves other people, but her lack of conformity means that other people don’t always love her, and of course, she can’t understand (or sometimes even perceive) this.

I know that my brother’s and sister-in-law’s greatest concern is what will happen to my niece and nephew if they (the parents) die. And we’re talking about two exceptionally intelligent, but eternally innocent, children here. To see my brother and sister-in-law going to extreme measures to keep themselves healthy, to set up funds to take care of their kids in case mortality catches up with them, is heartbreaking. I myself am looking forward to seeing what sort of lives these two exceptionally smart, talented, faith-filled kids make for themselves.

I know that anything is possible, because of Lonnie Smith and his two exceptional sons, Kambel and Kantai. Kambel and Kantai are both severely autistic, a state that many dismiss as hopeless. But Lonnie, a single father with severe health issues of his own, refused to accept this prognosis. He saw the inherent brilliance of his sons, their amazing gifts. Kambel was a natural artist, and Kantai could weave a captivating story. Kantai, the less severely autistic of the brothers, also happens to be a computer genius.

Putting his sons’ talents together, Lonnie encouraged them to create a digital world of their own imagining. And out of this world came an autistic superhero, Survivor, and his archenemy, the League of Diseases, headed by the evil Cheeo, whose chief weapon is depression and who preys on children. When you see their characters, you’ll immediately realize that Kambel’s art is the equal of anybody’s. Well drawn! I was simply amazed by Kambel’s artistic ability. Judge for yourself.

So Lonnie Smith has encouraged his sons to create a world where the autistic (they call them “autisarians”) and anyone else who’s battling a disease or disability can fight it in embodied form. It’s pretty amazing. And not only has he given his sons a mission in life and enabled them to express their exceptional talents, but he has a vision for where Survivor and his friends and enemies could go: To a full-length online feature, video games, and even action figures.

But this kind of initiative costs money, which is where Kickstarter comes in. Please, please, if you have any interest in supporting autistic initiatives or charitable causes in general, head over to http://www.kickstarter.com/projects/survivor/flames-of-avasten and check the Smiths’ initiative out. I think, I know, you’ll be as impressed as I am. Not their fantasy hero Survivor, but the real-life Smiths, are my heroes.

A superhero we all can relate to. June 28, 2013

Posted by ourfriendben in wit and wisdom.
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Okay, so the Man of Steel is once again fighting greed and corruption, and the Lone Ranger is righting wrongs out West. But what if the wrong you need to fight is something you were born with, or something that happened to you?

Wouldn’t it be great to have your very own personal superhero, a superhero who was fighting to save you, a superhero who was you? The other day, our friend Ben wrote a post, “Making a difference” (check it out via our search bar at upper right or just scroll down), about three young men whose online presence, despite severe disabilities, was changing the world. Two of these are brothers, Kambel and Kantai Smith, both of whom battle autism.

Autism is a prison of fear and confusion: Behind its bars, your oversensitive system reacts to stimuli such as noise and touch with terror, and you fail to register facial expressions or the meaning behind vocal intonations or body language, so your interactions with other people are often fraught with misunderstanding.

Bestselling author, scientist and professor Temple Grandin, who herself has severe autism, has likened the condition to the feelings of a prey animal, in essence a sheep who’s always waiting for the wolves to close in. Imagine living in a world in which the chatter and music in a restaurant are as loud as a sonic boom, or someone’s touch on your arm is like an electric shock.

A person with autism can respond to these experiences with anything from rage and roaring to trying to protect themselves through hiding, arms crossed over their face or lifting a menu before them like a shield, or with soothing behaviors, such as rocking back and forth or squeezing themselves between rigid surfaces, where they feel protected and safe. (Dr. Grandin created a “squeeze box” to calm herself.)

If this all seems incomprehensible to you, I strongly recommend Mark Haddon’s bestselling novel, The Curious Incident of the Dog in the Night-Time. (The title is based on an episode from Sir Arthur Conan Doyle’s chronicles of one of my heroes, Sherlock Holmes.) Mr. Haddon’s mystery is based on his work with autistic children, and its autistic hero, Christopher, will win your heart even as he solves the crime.

The struggle autistic people face to find a place in our world doesn’t make them less human, less intelligent, or less creative. Quite the opposite. High-functioning autism (formerly described as Asperger’s syndrome) is characterized by very high intelligence. My own nephew, who suffers from this, knew the names and traits of every African ungulate (his favorite animals, such as antelopes) by age three and has taught himself Latin and Greek by age 16.

Lonnie Smith, Kambel and Kantai’s father, saw this genius and potential in his sons. Together, they created a superhero, Survivor, who bravely battles the dreaded League of Diseases, headed by his nemesis, Cheeo, whose chief weapon is depression. Kantai’s animated realization of Survivor, Cheeo, and the other characters in the ongoing animated series, “Survivor Evolution,” can be seen on YouTube at http://www.youtube.com/user/KNSnetwork. Please log on and check it out and subscribe, it’s fantastic!

Kantai just graduated from high school, and both boys, thanks to Lonnie’s unfailing support, are now bound for associate degrees in media arts. May Survivor live long and prosper, and bring the family prosperity as well!

As Lonnie reminds me, and all of us: “Cheeo is the greatest enemy of all Autisarians because he comes from within. He is pure evil, but wherever evil exists there is always an overwhelming force of good to fight it. I AM SURVIVOR!”

As, God willing, are we all.

Making a difference. June 19, 2013

Posted by ourfriendben in wit and wisdom.
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Our friend Ben has written in the past about two boys with autism, Kambel and Kantai Smith, and their heroic father, Lonnie Smith, who discovered his sons’ talents and enabled them to create a superhero, Survivor, online. Survivor battles the League of Diseases and his archenemy, Cheeo, whose chief weapon is depression, in a series of animated features, “Survivor Evolution.”

Their website is called The Inspire Weekly (http://theinspireweekly.com/). If you suffer from autism or Asperger’s (high-functioning autism), if your kids do, if you know anyone who does, I urge you to discover this wonderful site, and wonderful story, for yourselves. (Our earlier posts on the topic are “Autism rocks” and “Autism STILL rocks,” which you can check out by typing their titles or simply typing “autism” in our search bar at upper right.)

Today, I’d like to highlight another blog that’s making a difference. It’s called “Laughing at My Nightmare,” and is written by Shane Burcaw, a 21-year-old who suffers from a rare and particularly disabling form of muscular dystrophy, spinal muscular atrophy, which has confined him to a wheelchair since age 2. Shane’s blog has burgeoned into a non-profit organization, Laughing at My Nightmare, Inc., whose mission is “to promote positivity and fund muscular dystrophy research” through events like walks and runs. Read more at http://www.laughingatmynightmare.com.

Frankly, people like the Smiths and Shane Burcaw put the rest of us to shame. While we’re whining about eating a bad dinner or having to wait ten minutes in a grocery line or an annoying coworker, they’re using their creativity to overcome unspeakable odds and changing our world for the better. Maybe it’s time we listened up.

Autism STILL rocks. September 10, 2012

Posted by ourfriendben in wit and wisdom.
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Our friend Ben wrote a post back in June, “Autism rocks,” which featured the amazing story of how a devoted father, Lonnie Smith, had discovered amazing talents in his severely autistic son Kambel and less severely autistic younger son Kantai and brought those talents to life. The result was a series of illustrated ebooks about an autistic superhero, Survivor, who battles the League of Diseases led by his arch-enemy, Cheeo, whose chief weapon is depression.

The story of these boys and their father and the series, “Survivor: Evolution,” impressed our friend Ben, whose niece and nephew have Asperger’s Syndrome (high-functioning autism) and Silence Dogood, whose best friend’s son, her heart-chosen nephew, also has Asperger’s, no end. (You can read the original post by typing “Autism rocks” in our search bar at upper right.)

Well, last night, something else amazing happened. Kambel and Kantai’s amazing father Lonnie came onto PRA to let us know that there’s now a website, The Inspire Weekly, that talks about the upside of autism and shares the amazing work of younger son Kantai to bring the adventures of Survivor to the computer screen. I am so impressed and so proud of them!

In a world where most of us never do anything worth writing about, this family’s achievements leave me humbled beyond words. I urge everyone to see for themselves at http://theinspireweekly.com/.

Autism rocks. June 19, 2012

Posted by ourfriendben in wit and wisdom.
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Our friend Ben was blown away by an article in today’s local paper, the Allentown PA Morning Call (www.mcall.com), “An Autistic Superhero.” It was about a dad who discovered that his severely autistic son was a great artist. He encouraged his son, now 25, and his younger son, who also has autism but is less socially incapacitated by it, to create a series of illustrated ebooks.

The books feature the adventures of an autistic superhero, Survivor, who has the ability to heal, as he battles the evil forces of the League of Diseases, led by Cheeo, whose weapon is depression, and who is adept at targeting Survivor’s weaknesses. They are, of course, skillfully illustrated by severely autistic son Kambel Smith, plotted by dad Lonnie, and vetted for relevance to teens by 17-year-old Kantai, who also gives the characters their names.

I was struck by the tee-shirts the sons were wearing, bearing the name of the series, “Survivor Evolution,” showing an illustration of the headless hero. Presumably he does have a head, but the choice of this particular illustration for the tee-shirt reinforces the inability of people with autism to “read” facial expressions or verbal intonations that would instantly give the rest of us clues to the mood and emotions of the speaker. For the autistic, the head is expendable.

Our friend Ben was very impressed by Lonnie Smith’s brilliant idea to give his kids a way to express themselves and feel good about themselves and their lives. But I was even more impressed, first, because the boys’ mother was nowhere in sight, so presumably Lonnie has been raising them alone, and second, because Lonnie has what was described as a “blood disease” that, the article implied, is fatal and will eventually—and likely sooner rather than later, given that he almost died from it two years ago—leave the boys on their own.

Our friend Ben has a niece and nephew with Asperger’s, the high-functioning form of autism. Silence Dogood’s best friend has a son with Asperger’s. Our next-door neighbor’s son killed himself at just 17 after wrestling with depression; our friend Rob is terrified that his son, who has battled Cheeo for the past seven years, will do the same. I’m betting that you know someone on the autism/Asperger’s spectrum, too, as well as people who battle depression.

Here’s the advice Lonnie Smith has to offer you, if the people who are suffering are your children:

* As you watch your children around the house, keep in mind that those funny, unexpected and cute things they do may be a sign of a knack. [His word for a hidden talent.]

* Expose them to museums, the zoo, parks, learning supply stores, toy stores and any vibrant places that might spark inspiration. Pay close attention. See what catches their interest.

* Once you find a particular skill, it’s your job to find out how it connects to your child’s life. Research online for ways to use that knack constructively. Develop a plan to incorporate it into their lives.

Our friend Ben thinks this is great advice for parents of troubled children. It’s also great advice for any parents. And it’s great advice for all the rest of us as well. Thank you, Lonnie Smith. Please live long and prosper.