Light It Up Blue

Taking On Autism As A Family, And A Community

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LEARNING TO ‘EMBRACE THE CHALLENGE’ OF AUTISM

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The power of love and social media has propelled family members of 2-year-old Tyler King into a spotlight for which they weren’t quite sure they were ready.

That spotlight is blue, and it shines on autism during Autism Awareness month in April.

Tyler’s 10-year-old brother, Cole Reedy, made a simple video for Facebook telling everyone how much he loved his brother, who had just been diagnosed in January with autism and 10 other disorders commonly associated with autism. Cole also asked people to display blue porch lights being sold by the national Autism SpeaksLight it Up Blue” campaign to support families dealing with autism.

“The outpouring of the community has been above and beyond belief,” said Tyler’s dad, Seth King.

King said the family has received responses from over 15 states, and Cole’s video has been shared by hundreds of people.

Cole says he was just trying to let others know that his little brother is “awesome” just the way he is.

“It’s nice that people know what it’s like and there are other kids with it too,” he said.

Tyler’s mom, Hannah King, who is a first-grade teacher at Villa Grove Elementary, said the family wasn’t quite expecting to “come out” in such a big way, after running the gamut of emotions through Tyler’s testing and diagnosis.

“We’ve learned to embrace the challenge instead of hide from it,” she said. “We’ve all come along way.”

The King family hopes to keep the momentum going Friday in their hometown of Villa Grove by hosting a Blue’s Cruise fundraising event. Families are asked to meet at about 7 p.m. at The Scoop ice cream stand on the south end of Main Street for a car cruise to view and count the dozens of blue porch lights that are displayed at homes and businesses around town.

For extra fun, cruisers can count the number of lights they see along the route, and the official number will be posted back at The Scoop.

The cruise is a free event, but 10 percent of the days’ proceeds at The Scoop will benefit Autism Speaks — plus money from sales of T-shirts and a special “Blue” music CD for the event.

Cassandra Gunter, owner of The Scoop, is helping to organize the activities and also sold blue lights from her shop.

“The Kings have embraced this diagnosis and have shared their talents and leadership qualities to encourage us to unite as a community and support families on their journey with autism,” she said.

The kids in the community will also get involved Friday by visiting The Scoop for special blue ice cream cones throughout the school day. Hannah King has organized field trips for the elementary students as a character building activity to demonstrate ways to support others and the community.

“I think it’s great that the kids are learning about it too, so they know we aren’t all the same and that’s okay,” Gunter said. “It’s definitely heightened awareness in this community.”

To finish out the month, Hannah King is working with a local fitness group, Chix in Training, to sponsor a family-friendly run through town. It will be at dusk and runners will carry glow sticks with them. Details are still being worked out for an evening in late April.

She says the best part of the experience has been connecting with other families with autistic children and sharing feelings and ideas about their experiences.

“We learn from other families and they learn from us, and that’s been the tremendous part of it,” Hannah King said.

 

If you go

What: Blue’s Cruise autism awareness fundraiser

When: 7 p.m. Friday, April 19

Where: The Scoop in Villa Grove

Cost: Participation is free; donations to Autism Speaks may be made at the Villa Grove State Bank to the Tyler King for Autism Awareness fund (all money will be donated to Autism Speaks)

http://www.news-gazette.com/news/local/2013-04-17/learning-embrace-challenge-autism.html

Putting A Face On Autism In Salem, Massachusetts

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Salem —
They are bright and talented students, warm and loving friends, and with support and acceptance can be fully integrated and productive members of society. They are the individuals on the autism spectrum, and they have a voice in Salem.
That was the message sent on World Autism Awareness Day, celebrated every year on April 2 since it was instituted by the United Nations in 1989. In Salem, celebrations included an Autism Awareness walk around Salem Common, spearheaded by Parents United of Salem and the No Place for Hate Committee.
“The response to the walk, as well as the Autism Awareness Fair that will be held on the Common this Saturday, has been overwhelming,” said Leanne Schild, one of the vice presidents of Parents United of Salem and the mother of an autistic son, Alex, now 7. “By promoting awareness, we teach people to have compassion for those who act different and make it easier for parents and kids to be open and honest about autism.”
Alex was diagnosed at age 2, after Schild noticed some differences between Alex’s development and that of his twin sister, Maria.
Though according to the Centers for Disease Control, as many as one in 88 children are diagnosed with autism every year, much is still unknown about the condition. Individuals on the autism spectrum have different or heightened perceptions of certain sounds and textures, which can result in behaviors that others do not recognize or characterize as abnormal.
Though some individuals on the autism spectrum never attain independence or develop full communication, others – particularly those who receive extensive early intervention, and those fortunate enough to find love and acceptance – go on to lead full lives. Famous people on the autism spectrum include actress Darryl Hannah and Temple Grandin, an animal-rights advocate and designer of ethical cattle slaughterhouses. Grandin was portrayed in an HBO film by Claire Danes.
This is the second year that Parents United of Salem has sponsored an autism walk. Last December, they also sponsored the first ever Festivus 5K, which drew 500 walkers and raised approximately $10,000 for The Autism Society.
“My son, Trevor, was diagnosed at age 5,” said Cindy Johnson, who marched in the walk and was one of the coordinators of the Festivus 5K. “He had difficulty making eye contact and a hard time talking to his peers. I remember having him in the pediatrician’s office asking if he was just a shy child or if there was something more, when he saw a ripped piece of paper on the floor. He looked at it and said, ‘Mom, that’s Idaho!’”
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Like many on the autism spectrum, Trevor Johnson exhibited narrow and deep interests in a number of highly technical subjects at an early age. But unlike many, he always found a loving and accepting community.
“Trevor went through a phase where he was very into studying transit maps,” Johnson said. “All our friends, family members, and Trevor’s friends, whenever they went on a trip, would bring him back transit maps of Paris and England. People have embraced our family with such kindness.”
Nonetheless, great strides must still be made, both in the attitudes of people who are not aware of the needs of those on the autism spectrum, and in the services made available to them.
“You definitely have to be a warrior parent,” Johnson said. “There’s a level of complexity that comes with raising any child, and it’s compounded when you have to fight to make sure that schools are providing services, that the help is actually getting to your child.”
Even more pervasive, however, is the tendency to marginalize those on the autism spectrum as sufferers from a disease. This is a charge that has even been leveled against one of the largest autism charities in the nation, Autism Speaks, which coined the “Light it up Blue” program and which autism advocates say places undue emphasis on finding a “cure” for what many believe is a valuable and intrinsic part of their personalities.
“To me, the blue lights and World Autism Awareness Day are bigger than any one organization,” Schild said. “They are about increasing acceptance and improving the quality of life for those on the autism spectrum.”
Many of the solutions advocated by adults on the autism spectrum who joined the walk are changes in disabilities and law enforcement procedures that would benefit both autistic individuals and the community at large.
“One of the biggest problems is the difficulty autistic people have in applying for disability benefits under the ADA,” said Sarah Chan-Aldebol, 25, who lives in Salem. “It’s not like a broken leg. You can’t always see it. But it completely affects the way you interact with the world.”
After experiencing a lack of understanding from peers, Chan-Aldebol was homeschooled before attaining a degree in sociology from UMass-Lowell.
“I was lucky in that I got early intervention. Not many in my generation did,” Chan-Aldebol said. “Even today, autism can be presented in TV ads as something that is wrong with kids, that parents complain about. The key is being supportive of kids.”
Ryan Tilton, 26, said that another key change in the lives of autistic young people in Salem would be the adoption of the Mason alert, a police tool that would add crucial information to Amber alerts in the event of a missing autistic child.
“Unlike other kids, autistic kids won’t wander to a friend’s house,” Tilton said. “The alert would provide police departments with photos, descriptions of whether the child is verbal or nonverbal, how well they respond to verbal commands, and locations where they are likely to wander to.”
Tilton also argued for increased access to service dogs for autistic people.
“Dogs can calm autistic people during situations of sensory overload, which makes it possible to attend more public events,” Tilton said. “Dogs are life-changing.”
The full spectrum of services required by individuals on the autism spectrum differ with each specific case, but of importance to all, attendees at the walk stressed, was the support and acceptance of friends, family, and community.
“We’ve had Alex in thousands of hours of applied behavioral analysis, social and speech therapy since he was 2 1/2. He’s done so well that he barely even needs the services we once sacrificed so much for. I couldn’t be a prouder parent,” Schild said. “I would not change a single thing about my son, who is the kindest, sweetest boy I have ever known. My deepest hope is that the world – which is so often so cruel – will be as kind and accepting.”
For more information on Saturday’s Autism Awareness Fair, visit salem.com.

Showing the faces of autism – This Just In – Salem, Massachusetts – Salem Gazette http://www.wickedlocal.com/salem/newsnow/x846079260/Showing-the-faces-of-autism#ixzz2PbaEQdOh

No-Tech Autism Awareness

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I saw this after I dropped Mike off at school this morning. Props go to MacArthur High School in Levittown, NY for this no-tech approach to Light It Up Blue For Autism Awareness!!!

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Is Today Any Different?

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Today is, as you may have all been told, is the Fifth Annual World Autism Awareness Day.  Is it any more special than yesterday? After all, April Fool’s Day has been around a long time…

Yesterday too, was the start of Autism Awareness Month, wherein we get to deluge our friends and neighbors with urgings to ‘Light It Up Blue‘,

To families on the Spectrum, today holds no special meaning; no more than yesterday, and no more than tomorrow.  We will love and care for our children, all our children, the same: inequivocably and without end.  I did not love my wife and sons any more, or any less yesterday than I will tomorrow.  My pride in their accomplishments, their sacrifices and their growth is the same today as it was yesterday, and will be the same tomorrow: boundless.

Families on the Spectrum live with, and live through Autism everyday; one day blurs into the next. 

There is a saying: “Once you have met one Autistic child, you have met one Autistic child.” Unfortunately, you will undoubtably meet more, all unique unto themselves: Earth-bound snowflakes all.  World Autism Awareness Day is designed to focus everyone’s attention on a disorder that is not going away; it is a hallmark, intended to shine the brightest of beacons onto those unaware, and those with the power to do more.

So, is today any different? Not to those affected everyday by Autism.

Everyday is Autism Awareness Day.

Innovative Autism Awareness Month Initiatives

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Autism Speaks, Online and Tech Leaders Team Up with Innovative Autism Awareness Month Initiatives

Autism Night Lights

 
Microsoft, Twitter, Google, AOL, Barnes & Noble, and Others Help Celebrate Global Light It Up Blue Campaign and World Autism Awareness Day with New Resources, Tools
 

NEW YORK, NY – Autism Speaks, the world’s leading autism science and advocacy organization, today announced a series of digital, mobile and technology initiatives involving a range of corporate and philanthropic partners that will take place throughout Autism Awareness Month in April as part of its global Light It Up Blue awareness campaign. 

Autism Speaks is also leveraging its online community of more than 3 million Facebook fans, Twitter followers and e-mail subscribers to create a groundswell of activity on its flagship Light It Up Blue website, www.lightitupblue.org. The website features an interactive photo gallery, personal fundraising pages and mobile applications for both the iOS and Android platforms.

An Autism Speaks text messaging service will support the online Light It Up Blue campaign. By texting “LIUB” to 30644, users can get access to additional content, information and news. Autism Speaks has also launched a video blog, hosted by a young man on the autism spectrum, Kerry Magro. The Kerry’s Korner video blog features music by Kyle Cousins, a musician who is also on the autism spectrum.

“We are excited to announce the online component of our Light It Up Blue campaign and grateful to all of our tech and digital partners for participating throughout Autism Awareness Month,” said Marc Sirkin, vice president of social marketing and online fundraising, Autism Speaks. “Thanks to their support, our online presence will continue to grow and reach new audiences with our message of compassion and the importance of early screening for autism.” 

In addition to participating in the Light It Up Blue campaign, several of Autism Speaks’ online and technology partnerships feature new resources and tools for families affected by autism. “The tech community has demonstrated a genuine commitment to addressing this growing health crisis through the development of innovative software and applications for families and individuals affected by autism,” added Sirkin. Online and technology partners include:

  • Microsoft has released a series of free office templates based on the Autism Speaks 100 Day Kit for families of individuals with autism. These templates can be found on the Autism Speaks partner page on Office.com. Templates include a contact form, request for information on Special Education Letter, a phone log and several other forms.
  • Twitter has donated an online advertising campaign to encourage the world to Tweet about Light It Up Blue via the hashtag #LIUB.
  • Google is participating in Light It Up Blue by lighting six of its buildings blue — including buildings in Seoul, Los Angeles and San Francisco — on April 2 to bring awareness to autism.
  • AOL is highlighting both the organization and World Autism Awareness Day by featuring Autism Speaks on AOL.com April 2nd, providing a free placement on the AOL Mail Log-in screen for a day, and spotlighting Autism Speaks on the AOL Impact site, encouraging consumers to Light It Up Blue in support  of Autism Awareness.
  • Barnes & Noble will Light It Up Blue online by creating a special landing page at www.bn.com/autism and will provide an opportunity for its customers to join the campaign. The BN.com landing page will feature curated items that relate to autism.
  • Technology provider Blackbaud will light the fountain outside its corporate headquarters blue and will focus on autism awareness among its employees throughout the month.
  • Outfit7, creator of the popular Talking Friends characters and apps, will be participating in the campaign by providing free in-app Light It Up Blue virtual t-shirts for Talking Tom on both iOS and Android. Outfit7 will also donate advertising on its digital network.
  • CareZone, a completely private place to organize and care for loved ones, is donating FREE accounts ($180 value) to those challenged with autism. Parents can claim their accounts at carezone.com/autism, and share access to them on any device.
  • Careverge, an Audax Health digital health platform which inspires and engages consumers to be healthy with personalized tools and community, will light its homepage blue on April 2. Careverge invites members and caregivers to learn more about autism, and share support in its online autism community.
  • HandHold Adaptive, which makes iPrompts and AutismTrack, premier apps for autism on mobile devices, will offer its AutismTrack app for free on April 2. AutismTrack is a powerful, handheld data collection app that helps parents track medicines, diets, therapies and behaviors, and report on progress to doctors.
  • Lamar Digital Advertising has donated all available digital billboard space to Autism Speaks for three months, including April, to help increase participation in Light It Up Blue and the organization’s Autism Awareness Month initiatives. Digital billboards supporting Autism Speaks initiatives began running nationwide in mid-March and will continue through May 31, 2011.
  • The Social Express™ is an engaging, interactive software application designed for children with autism, Asperger’s, and ADHD. Its software teaches children how to think about and manage social situations through video modeling, thus enabling them to build social-emotional skills and develop the meaningful relationships they need to navigate life. The Social Express will offer a special 75% discount on April 2.
  • In collaboration with production company Bodega Studios, advertising agency Goodby Silverstein & Partners will be releasing a documentary, I Want to Say, that chronicles the lives of real young people with autism, in particular, their challenges and breakthroughs through the use of touch technology. The film brings awareness to the vast improvements that touch technology has made for nonverbal members of the autism community. Hacking Autism, an initiative recently adopted by Autism Speaks, aims to bring this same attention to an online community devoted to people sharing their stories of hope through emerging technologies.

About Autism
Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and environmental influences. These disorders are characterized, in varying degrees, by social and behavioral challenges, as well as repetitive behaviors. An estimated 1 in 110 children in the U.S. is on the autism spectrum – a 600 percent increase in the past two decades that is only partly explained by improved diagnosis.

About Autism Speaks
Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Mr. Wright is the former vice chairman of General Electric and chief executive officer of NBC and NBC Universal. Since its inception, Autism Speaks has committed over $173 million to research and developing innovative resources for families. Each year Walk Now for Autism Speaks events are held in more than 95 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org