Autism Speaks Walk

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Autism, or Autism Spectrum Disorder, refers to a broad range of challenges with social skills, repetitive behaviors, speech, and and nonverbal communication. There are many subtypes of autism, and any person with autism can have unique strengths and challenges. Most are caused by a combination of genetic and environmental influences, and many are accompanied by medical issues such as intestinal issues, seizures, and sleep disturbances.

 

 

 

An estimated 1 in 59 children in the United States is on the autism spectrum.

 

 

 

For many years, I have been a supporter of Autism Speaks, and my husband, Frank, and I have participated in many Autism Speaks Walk events. This year, the Autism Speaks Walk on Nantucket is on August 18th. Taking compassionate action is what makes a real difference in the world. It’s compassionate action that has allowed Autism Speaks to make great strides forward in research and support for children and families affected by the disorder.

 

 

 

Last month, Autism Speaks launched a $1.5 million funding opportunity for treatment studies, with an emphasis on physical and mental health conditions that accompany autism.

 

 

 

I’m a fervent believer in the work of Autism Speaks, which is why I wholeheartedly support what they do. I’ll be walking this year with Frank and my two little Bichons, Tuffy and G.G. The Walk leaves from Sandbar Jetties Beach at 9:45 a.m., with opening remarks at 9:30 a.m. Registration begins at 8:30 a.m.

 

 

Start a team, join a team, or come on your own! For more information, contact Eden E. Carr at 617-726-1515.

Walk Now, Act Now, for Autism Speaks

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A recent letter from Suzanne and Bob Wright, co-founders of Autism Speaks, included a quote from Vietnamese author Thich Nhat Hanh: “Compassion is a verb.” Taking compassionate action is what makes a real difference in the world, and that kind of active support has allowed Autism Speaks to make great strides forward this year.

 

 Humayun’s Tomb in Delhi

A few of the organization’s achievements:Fifty thousand people honored loved ones with autism on April 2nd for World Autism Awareness Day, with rallies, candlelight vigils, and awareness games at professional sports events. The United Nations held a special panel on autism. As night fell, more than 18,600 monuments, buildings, places of worship and homes glowed with a beautiful blue light in 142 countries on every continent for Light It Up Blue.

 

There’s a genome project with Google to provide more data to scientists. The ABLE Act (Achieving a Better Life Experience) is now underway in all 50 states. The Autism Cares Act was passed and signed into law by President Obama in August 2014. And the first global conference on autism was held at the Vatican with an audience afterward with Pope Francis, where he called upon every Catholic to accept and support all people with autism.

 

 Pope Francis with Bob and Suzanne Wright at the Vatican

I’m a fervent believer in the work of Autism Speaks, which is why I wholeheartedly support their important work. I’ve written before about autism (you can read my posts here, here and here), and as a sponsor, I’ll be walking with my husband, Frank, and our three little Bichons, Tuffy, G.G. and Ellie again this year on Nantucket.

Walk Now for Autism Speaks begins at Jetties Beach on Saturday, August 15. It’s a two mile walk and community resource fair with lots of family and child-friendly activities, in addition to raising much needed funds for autism research, and generating awareness about the increasing prevalence of autism.

 

If you’re not on Nantucket, then go to this site to find out when there’s a Walk Now event in your area.

Autism Speaks.It’s time to listen.

Light It Up Blue!

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An organization that has always been close to my heart is Autism Speaks, and their fabulous month-long campaign called Light It Up Blue.

I’ve supported Autism Speaks for years, alarmed by the rapid increase in children affected by the disorder. I have written about autism every year since I began this blog in 2011. My most recent post is here.

Autisim Walk with Frank

My husband, Frank, and our Bichons at Walk Now for Autism Speaks

Autism is a general term for a group of complex disorders of brain development. One in 68 children per year are diagnosed with disorders on the autism spectrum today, a forty fold increase in the last ten years. For boys, the rate is four to five times that of girls, at one in 42. The rate for girls is one in 189. I’ve walked on Nantucket to raise money and awareness (Walk Now for Autism Speaks: there are walks all over the country–check it out!), and in 2013 created a very special holiday tree to honor the families who struggle with autism and to help bring attention to their search for a cure.

autism tree

Nantucket Whaling Museum’s Festival of Trees, 2013

World Autism Awareness Day is on April 2, 2015, and kicks off a month of autism awareness with Light It Up Blue. Light It Up Blue (LIUB) asks everyone to honor people with autism worldwide. Buildings, landmarks, hotels, concert halls, schools, and thousands of homes will light it up blue. This year, even the Great Pyramid in Egypt will Light It Up Blue!

Here’s how you can help:

  • Light your homes, businesses and schools blue! Change outdoor and indoor light bulbs to blue bulbs.

 

  • Wear blue: ties, scarfs, shirts, shoes! Ask your family and friends to wear blue, too.

 

  • Post blue. Use Facebook, Twitter, Google +, Instagram and Pinterest to share your support for Light It Up Blue. Use the hash tag #LIUB.

 

  • Distribute information about autism and Light It Up Blue in your community.

 

 

 

The Cleveland Clinic is doing their part, too. Beginning Monday, April 13th through Sunday, April 19th, 43 participating Panera Bread bakery-cafes in Northeast Ohio will bake a specialty puzzle piece shortbread cookie and donate 100% of the proceeds to the Cleveland Clinic Children’s Center for Autism. Not in northeast Ohio? You can purchase a virtual cookie here. 

 

Battling the Autism Epidemic

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I’ve written before about my concern for for the 70 million people affected by autism worldwide, and their families. 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 communication difficulties, social and behavioral challenges, and repetitive behaviors.

boy with autism

The numbers are rising, as confirmed by the Centers for Disease Control’s new statistics: 1 in 68 children, 1 in 42 boys have autism. It is an urgent public health priority that requires increasing global awareness, services and research. World Autism Awareness Day (WAAD), celebrated each year on April 2, was adopted by the United Nations in 2007 to shine a bright light on autism as a growing health crisis. Autism Speaks recognizes that day with its international Light It Up Blue campaign.

 

Thousands of communities participate, with iconic landmarks, businesses and homes across the globe uniting by shining bright blue lights in honor of the millions of individuals and families around the world living with autism.

Autisim Walk with Frank

I’m doing my small part by helping to spread the word through my blog and Facebook page, as well as providing financial support and participating in Walk Now for Autism Speaks. The Nantucket Walk will take place this year on August 16th, starting from Jetties Beach. Each year Walk Now for Autism Speaks events are held in more than 100 cities across America. Please visit Autism Speaks here to find a walk in your area!

 

Autism Speaks is a worldwide organization co-founded by Suzanne and Bob Wright. They are tireless in approaching autism from every avenue, and transforming lives, one person at a time. A new documentary, Sounding the Alarm, has been produced. The film follows autism families as they follow tangled rules and regulations, and steadfastly fight to find and afford the right care and treatment for their loved ones throughout their lives.

 

Watch the trailer here. It’s available now on Netflix.

The Power of One

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I often speak about my belief in the Power of One, the power each of us has to make a difference in this world.  Sometimes the problems we face as human beings can seem insurmountable, but they are not.  Together we can create a better world and a kinder planet, but someone has to take the first step.  The second step is easier, the third step easier still.  That’s when you find other people following you.

Here are a few of the things that inspire me to take a step:  Earth Hour;  Light It Up Blue for Autism Speaks;  Her Haven, a new organization I’ve joined as a board member; and sharing what I know about eco-conscious living.

EARTH HOUR 2013

 

Dare the World to Save the Planet.  Switch off your lights on Saturday, March 23rd at 8:30 p.m. your local time, and show the world what you’re willing to do.  The world is using the equivalent of one and a half planets to support life on earth today.  Earth Hour is the single, largest, symbolic mass participation event in the world.  Born our of a hope that it could mobilize people to take action on climate change, Earth Hour now inspires a global community of millions of people in 7,001 cities and towns across 152 countries and territories to switch lights off as a massive show of concern for the environment.

There is no doubt that the world is facing some of the most critical environmental challenges in history.  That may make a sustainable future seem difficult to imagine, but it is possible.  Change this big needs you.  It needs every one of us. Join the global community at Earth Hour to see where change is already underway.

 

 

Light It Up Blue, annually observed on April 2,  is dedicated to raising awareness of Autism Speaks, the world’s largest autism science and advocacy organization. This initiative is intended to raise international awareness of autism as a growing public health crisis in support of World Autism Awareness Day and Autism Awareness Month in the United States.

Iconic landmarks around the globe – including the Empire State Building in New York City and Willis Tower in Chicago along with the CN Tower in Toronto and Kingdom Tower in Saudi Arabia – as well as airports, bridges, museums, concert halls, restaurants, hospitals, and retail stores, are among more than 100 structures in over 16 U.S. cities and nine countries around the world lthat lit up in bright blue on the evening of April 1, 2010 – the first night of Autism Awareness Month in the United States and the eve of World Autism Awareness Day (WAAD).

Here are a few ways you can help in 2013:

  • Wear your Autism Speaks puzzle piece pin every day throughout the month of April, and tell people about autism if they ask about it. To purchase your pin and other Light It Up Blue items, visit the shop at autismspeaks.org
  • Wear blue clothing and ask your friends, co-workers and schools to wear blue too.
  • Take a group photo and upload it to www.lightitupblue.org
  • Purchase blue light bulbs and lanterns from Home Depot and replace your outdoor lighting with these blue bulbs, or you can buy blue lighting filters to cover existing lighting.
  • Buy a Light It Up Blue yard sign to show your support throughout your community
  • Visit www.lightitupblue.org and download the free Light It Up Blue iPhone application so you can add your photos to the Light It Up Blue website.  Visit the website for lots more ideas!

 

HER HAVEN

 her-haven

I recently was invited to join the board of a wonderful charitable organization called Her Haven, dedicated to giving women in need a serene and comfortable space for themselves, Her Haven aims to honor women who are inspiring, deserving and giving by redesigning a room in their home or work environment. I’ll be providing information on sustainable design and keeping it “green” for the clients helped by Her Haven.  Visit their website here to find out ways that you can help us in our mission to design a difference.  

SPREADING THE WORD

Debbie Phillips, founder of the fabulous organization Women on Fire, a membership organization of women dedicated to making a difference in the world,  interviewed me on Monday, February 18th.  She wanted me to share my passionate belief that A Healthy Home is the Ultimate Luxury with her 3,000+  dynamic followers.  We talked about the fact that when we begin to embrace the idea of change and holistic living, we must first start in our own homes. 

My website, blog, Facebook page and personal outreach efforts are all dedicated to helping people understand the importance of sustainable design and healthy lifestyles.  I hope if I’ve been able to help you learn more, that you’ll pay it forward by sharing my social networking sites with your friends and family.

It all begins with education.  I’ve also been asked to work with a Sustainable Design class at Keane University, and will be skyping with them on March 27th.  I’m excited by the opportunities I’ve been given to share the knowledge I have gained in my years of living an eco-elegant life, and sharing it with my clients, friends and followers.

Theodore Roosevelt said to “Do what you can, with what you have, where you are.”  That’s what I’m doing.  I hope you’ll do it, too. 

 

 

 

 

One in 88

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I recently had the privilege of hearing Suzanne Wright, grandmother of a grandchild with autism and co-founder of Autism Speaks, as she talked about this serious developmental disorder.  What she said both shocked and saddened me, and made me determined to help spread the word about the critical need for more research into the causes and prevention of autism.  Kathy Roberts, executive director of a renowned school for children with autism called Giant Steps and mother of a daughter with autism, was also invaluable in helping to provide a greater understanding of the problems we must face together.

 

 Here are some things I learned:

 

  • Statistics tell us that one in 88 children born today will have Autism.  If we look only at boys, the numbers are more alarming, at one in 54. (Autism is four to five times more common in boys than girls.)
  • Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.
  • Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age.
  • Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify a 78% increase in six years. Careful research shows that this increase is only partly explained by improved diagnosis and awareness.
  • By way of comparison, more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.

 

 

What does it mean to live with autism?

 

Each individual with autism is unique. Kathy Roberts says “when you meet one child with autism, know that you’ve met one child with autism.”  That being said, there are some skills and behaviors that are often exhibited in people with autism.

Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means.

Many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world, and have made significant contributions to their fields, perhaps because of their ability to see “differently.”  Great artwork and advances in science have been brought to life through the centuries by people who look, think, and act differently.

One of those “different” people today is Temple Grandin, an American doctor of Animal Science and a professor at Colorado State University.  As a person with autism, she has done much to help the public understand the disorder and is known both for autism and animal welfare advocacy.

 

She has a wry sense of humor about her disability, and says, “What would happen if the autism gene was eliminated from the gene pool?  You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.”

There is sweetness and joy and laughter in the lives of families who struggle with autism, but the issues are real.  Among the worries many parents face is who will care for their adult with autism when they are no longer here to do so?  The responsibility will often fall to a sibling, who may or may not be prepared to undertake it.  As Ms. Roberts tells me, “there are no tests to predict what a three year old will look or act like at twenty or thirty years of age.”  But we must continue to work toward better diagnosis and early intervention for best outcomes.

Science currently indicates that the cause of autism is both environmental and genetic, which makes the complex work of teasing out a way to prevent it all the more challenging.  That’s why we need to work together and keep the focus on this very important topic. “Bob and I founded Autism Speaks to provide hope for individuals and families affected by autism,” said Suzanne Wright.  “Together, we can find the answers and make a difference–Autism Speaks and the Nantucket community is listening.”

Please take a moment to learn more at www.autismspeaks.org. or www.giantstepsct.org.

You can also find a world of information at www.templegrandin.com, as well as a fascinating blog published by Psychology Today Online called Asperger’s Diary  written by a woman with Asperger’s syndrome.

 

 

 

 

 

 

 

Nantucket Walk Now for Autism Speaks

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The people of Nantucket Island are known for their generosity and warmth of spirit, and never do they show it more clearly than each year when hundreds of people walk to fund vital research for autism.  This year, Nantucket Walk Now for Autism Speaks takes place on Saturday, August 18th at 9:30 a.m.(registration at 8:30 a.m.), beginning at Jetties Beach. With a distance of only 1.5 miles, it’s something I hope we all can try to do.

Every 11 minutes, another family receives the devastating news that their child has an autism spectrum disorder.  The Walk, founded by islanders Bob and Suzanne Wright, is one way to help change the future for all who struggle with the challenge of autism.

Come join me, Frank and our three Bichons, Ellie, Tuffy and G.G.!  Learn more at www.walknowforautismspeaks.org/nantucket, or call 646-843-6675.