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Archive for April, 2010

PBS’ This Emotional Life and Autism Speaks Present: “Growing Up With Autism”

April 26, 2010 7 comments

TUNE IN – “Growing Up with Autism” webinar
Tuesday, April 27, 1-2 p.m. EDT

Join a panel of scientists, parents, and individuals with an autism spectrum disorder (ASD) to learn what it is like “Growing Up with Autism.” Dr. Geraldine Dawson, Ph.D, the Chief Science Officer at Autism Speaks and Research Professor at UNC Chapel Hill will lead a discussion with  Connie Kasari, Ph.D. (UCLA), Holly Robinson Peete, and John Elder Robison, to address the challenges that face individuals with an ASD and their families as they are initially diagnosed, navigate peer interactions and age out of services as they enter adulthood.

The panelists will also focus on the different needs and abilities individuals with an ASD have in the hope of generating acceptance and support in the community.  This poignant webinar will combine professional experts with personal experience to offer unique insights and perspectives that will be valuable to all who are touched by this increasingly common spectrum of neurodevelopmental disorders.

To register for the free webinar, please visit https://www1.gotomeeting.com/register/563407008.

Stay informed about “This Emotional Life’s” on-going webcasting events with thought leaders in the fields of mental health and wellness by signing up for their bi-monthly newsletters.

If you miss the webinar, we will have information soon about how you can view it. Please stay tuned!

TUNE IN: “Frontline” on PBS

April 26, 2010 1 comment

Tune In to “Frontline” on PBS
Tuesday, April 27 at 9:00 p.m. (check local listings)

Tomorrow evening “Frontline” on PBS will present an episode called The Vaccine War. The show will address the controversy surrounding vaccines and the differing perspectives of the general public, scientists, and public health officials. Visitors to Frontline’s website can interact with medical experts identified by Frontline who will be responding to comments and answering questions. Visitors can also take a survey featuring five key questions about their attitudes toward vaccines, and find out how well their responses match responses from a nationwide survey.

Learn more about the episode and check your local listings here.

To learn more about Autism Speaks’ position on vaccines, please read our policy statement and an interview with our chief science officer, Dr. Geri Dawson.

An Even Sweeter 16

April 23, 2010 28 comments

My name is Meghan des Groseilliers and I’m a sophomore at Ursuline Academy in Wilmington, Delaware. My 10-year-old brother Robby was diagnosed with PDD/NOS eight years ago. Over the years, living with autism has deeply impacted me.  I have watched my brother both struggle and succeed daily in most everything he does. Because of this experience, I wanted to make a difference for children diagnosed with autism and their families. I  have walked for Cure Autism Now and subsequently, Autism Speaks. So the choice of this organization, which is near and dear to my heart, as the recipient of a fundraiser was a simple one. For my “Sweet 16” birthday party on March 20, I invited 150 of my friends to a dance party at a local fire hall. Instead of receiving birthday gifts, I asked my friends to make a donation to Autism Speaks and we raised $3,200. There were three key reasons for doing this, the first of which was to help Autism Speaks help families like mine.  But the other two reasons were just as important. First, the party helped raise awareness of autism with teens in my community.  It was remarkable to see the number of raised hands when Christina Carty (Greater Delaware Valley Regional Walk Director) asked how many people had a family member or knew of somebody affected by autism. This is important because we need to know that there are others out there to talk to about our common feelings and struggles. The video and statistics shown at the party gave us a clear picture of the proliferation of autism and the limited funding it receives. Finally, this party was an incredible lesson in giving and I hope other kids will do the same with a charity of their choice. In the end, we all had a great time socializing and dancing for a wonderful cause. Even Robby danced and enjoyed the party as well, showing my friends that even though he’s on the spectrum, he’s no different than them – he’s a kid who wants to have a great time in support of a great cause.

Meghan des Groseilliers with Autism Speaks' Christina Carty

Autism in the News – Friday, 04.23.10

Study shows extremely preterm children are 3 times as likely to have psychiatric disorder (Washington D.C.)
Significant advances in the neonatal intensive care have resulted in increased survival rates of children who are born at less than 26 weeks of gestation, so termed “extremely preterm children”. Notably, however, improved survival rates have been accompanied by a higher risk for later cognitive, neuromotor, and sensory impairments in these children. Read more.

Grandparents Often Help Support Kids With Autism (NPR.com)
Having a child with autism can turn parents’ lives upside down. But it can also profoundly affect the lives of grandparents, according to an online survey by the Interactive Autism Network (IAN). Read more.

Sirius XM To Broadcast Doctor Radio Reports: Understanding Autism (SiriusBuzz.com)
Ever wonder what that little blue puzzle piece is on Mel Karmazin’s lapel? It is his way of showing that he supports autism awareness. I myself have one, as do many people across this nation. Read more.

Attorney for parents of special needs kids accused of practicing without license (Washingtonpost.com)
Life for parents of special-needs children can be challenging on its best days and crushing on its worst, some parents like to say. The parents of kids with autism, learning disabilities and other problems band together to share stories of frustration and success, and to swap the names of the best schools, the best psychologists – and the best lawyers. Read more.

How, When Child Develops Autism May Determine Outcomes (U.S. News & World Report)
Children with autism whose social and communications skills regress around age 3 tend to have more severe autism than children who show signs of the neurodevelopmental disorder at younger ages, new research finds. Read more.

Man shares story about growing up w/ autism (Los Angeles, Calif.)
Growing up through your teenage years is hard enough, but for those with autism, those challenges are multiplied. But one young man showed me how he turned those obstacles into opportunities, and has a lot to share about growing up with autism. Read more.

Hope Network opens state’s 1st all-inclusive autism center; open house today (Kentwood, Mich.)
Hope Network leaders open The Hope Network Center for Autism today, the state’s first all-inclusive center devoted to treating the fastest-growing developmental disability in the U.S. Read more.

Son’s autism leads to innovation (BBC)
The father of a child with severe autism has developed technology to help him communicate. Read more.

Judge in Odgren case asked to explain insanity verdict details (Woburn, Mass.)
John Odgren’s lawyer asked the judge overseeing the teenager’s murder trial to detail to jurors the process that follows a verdict of not guilty by reason of insanity, saying that a general misunderstanding of the procedure could influence the jury’s deliberations. Read more.

Walk Now for Autism Speaks: Los Angeles (Los Angeles, Calif.)
Take an important step in the fight against autism and join ABC7 and Autism Speaks for Walk Now for Autism Speaks: Los Angeles, Saturday, April 24, at the Rose Bowl in Pasadena. Read more.

In Their Own Words – Petting Cows and Skydiving

April 22, 2010 33 comments

The boys and I were hanging out in Sean’s room, winding down from the day. Sean (my son who has autism) was getting into his covers and his brother was sitting at the end of his bed. I turned off the lights to get Sean ready for bed and he said sweetly, “Can you talk to me, Mommy?”

I sat down on his bed, the room dark, and he said quietly, “Sometimes I have good dreams.”

“You do?” I said, surprised. Most of the time, when I ask him what he dreams of he says quickly, “Nothing.”

“Yes,” he whispers.

His older brother, curious asked, “What do you dream about, Sean?”

He pulled the covers over his face and said happily, “Farms. And petting cows. And sometimes I am skydiving.”

His older brother laughed kindly and said, “Yes, Sean. Sometimes I dream that I can fly, too. It’s so awesome. Maybe you’ll have a dream that you are skydiving and you parachute down into a barn and you can pet the cows.”

“I love petting the cows in my dreams,” he said, his voice softened with the memory.

His brother said, “Yeah, I love the good dreams. I don’t like the bad ones. Sometimes I dream that someone is chasing me and I can’t scream for help. And one time I dreamed  that a bad man took Sean and I couldn’t stop him.” his voice scared.

Sean said, “I have bad dreams about zombies.” his voice shaky. “I don’t like those dreams.”

I smoothed his hair and kissed him on the forehead, “No bad dreams tonight, pumpkin. Think of skydiving. Dream of the cows.”

I stood up and took his brother to his room, his hockey posters and medals hanging on his walls. I pulled back his NFL covers and tucked him in.

“What are your good dreams, mom?” he asks, burrowing his body into the blankets.

Do I dare tell him that everyday I dream that Sean will come to me, with promise and hope in his eyes, words like honey dripping from his lips, his conversations on-topic and his body free of the impulses and hopping and the strange noises that he often makes. That he will be the boy I have always dreamed of – a boy who can run and play easily with others, who can read books and comics, who doesn’t cry or scream when things don’t go his way and who can live in a world that doesn’t feel like it is swallowing him whole.

But I don’t. I tell him that my favorite dream is that I am flying, my arms stretched, scraping clouds and blue sky with my fingers, looking down over green hills and pastures of wheat below, and my heart beating electric.

And I don’t share with him the nightmares I have had either. The one where he and I are playing with Sean near a river, the water clear, cold and rushing with purpose. I look away for the briefest moment and when I turn back, Sean is falling into the river, his body disappearing, the river water turning muddy, almost black. I frantically reach my hands, my arms into the freezing water, searching for his little fingers, a shoulder, a hand but pull out only smooth rock and silt. I yell at my oldest to help me, his small arms, shaking and panicked, hot tears on his cheeks and his hands surface with nothing, nothing but river water and sticks and pebbles. And I cry, my fingernails digging into the earthy riverbed and yell until I am sitting up in my bed, a scream caught in my throat, my armpits damp and I finally wake. It’s not real. He is sleeping soundly in his bed. It is not real. I haven’t lost him.

But I cry anyway because this nightmare (and I have had it several times) seems too real to me. And because the metaphor of this dream, that I’m losing my child to autism, haunts me, not only during the daytime, during the tough moments, but also the fear stays with me at nighttime, penetrates my sleep and plays itself out in my dreams.

Sometimes this dream takes place at the ocean or a swimming pool, but it always ends the same, my oldest son and I are crying and searching for the little boy who has been stolen away from us, trying to touch his skin, hear his voice, trying so hard to keep him with us, in our arms, our relieved sighs against his sweet red hair.

I don‘t share this with my oldest. I am sad that he is even in this terrible dream, that he is standing next to me, frightened, doing his best to save his brother, doing all that he can to save me from such despair and not being able to do so.

Then I am reminded that my favorite dream is realized. It’s the luck of a good husband, of two little boys who teach us everyday that all we can do is just love them simply and kindly. So I try to push the bad dream out and replace it with the one where my beautiful boy is laying in the hay, the sun warming his shoulders, his cheeks and he is with his beloved cows, petting their soft, shiny coats. He is happy and he is laughing and he is safe.  And yes, he dreams. My boy has dreams.

This week’s “In Their Own Words” is by Katie Bevins. You can read more of Katie’s writing at http://autism–tearsofaclown.blogspot.com.

Autism Speaks U Celebrates Autism Awareness Month

April 22, 2010 2 comments

Autism Speaks U

Autism Speaks U, an initiative of Autism Speaks, focuses on engaging the young philanthropists of the world and connecting college students with the autism community. Autism Speaks U kicked off Autism Awareness Month with fundraising events led by college students nationwide.

On April 10, 2010 the fifth annual “We Are…Curing Autism Now” 5k race/3k walk presented by Beta Sigma Beta, Alpha Phi, Alpha Sigma Alpha, Pi Beta Phi and Sigma Delta Tau took center stage in State College, Penn. More than 1,200 participants joined in on the day’s fun.  The event, co-hosted by Penn State football’s play-by-play announcer, Steve Jones, and Drew Shannon of 105.9 Qwik Rock, featured a performance by the Whiplash dance team. With nearly $100,000 raised this year, the event has raised more than $650,000 since its inception in 2006.

The following weekend, the second annual “Fear the Turtle, Find a Cure for Autism” 5k race/3k walk took place on at the University of Maryland. To start the event, PandemoniUM, the University’s most eclectic co-ed a cappella group, sang the national anthem.  Presented by the brothers of Sigma Phi Epsilon and the sisters of Sigma Delta Tau, the event brought together over 220 members of the campus and community to help raise both funds and awareness for autism. Raising nearly $20,000, the event looks to break the $50,000 mark in just two short years.

Other recent Autism Speaks U events included New Mexico Highland University’s first run/walk, with 150 walkers raising approximately $2,200, and Curry College’s “Work Out for Autism” event which raised $1,300 with 50 students participating.

The team at Autism Speaks U supports students in planning and executing awareness and fundraising events. Together, we build awareness about autism and raise critical funds to help all those affected by autism. To get involved with Autism Speaks U, contact Sarah Caminker at sarah.caminker@autismspeaks.org and become the next student leader at your school.

Check out photos from these Autism Speaks U events below!

Autism in the News – Thursday, 04.22.10

Santa Cruz Police search for missing autistic man (Santa Cruz, Calif.)
Santa Cruz Police are searching for a missing, at-risk autistic man who has not been seen since 2 a.m. Wednesday. Read more.

Cops make arrest in break-in at Elm Park’s Eden II School for autistic children (Staten Island, N.Y.)
Police say they have one piece of the puzzle in the March break-in at the Eden II School for autistic children in which heartless thieves made off with video games, toys — even Star, the kids’ pet hamster. Read more.

Workers with Asperger Syndrome or autism can fill workplace needs (Kansas City, Kan.)

Do you need a worker who pays attention to detail? Who will do tedious data entry job? Who won’t waste time gossiping? Read more.

Autism Speaks helps parents through first 100 days on the spectrum (Los Angeles, Calif.)
Autism Speaks, a national organization, raises money and awareness for families with autistic children. Bob and Suzanne Wright founded the program in New York five years ago after their grandson was diagnosed. It has quickly spread nationwide and now raises money to fund research, develop advocacy and help families. Read more.

Rodney and Holly Robinson Peete tell story of autistic son and their journey together (Los Angeles, Calif.)
He played football, quarterbacking games in the NFL. She starred on a couple of popular TV series and has films to her credit. Read more.

Akron: Mother of dragged autistic student demands better training (Akron, Ohio)
The mother of a high school student with autism says her son’s ordeal points to the need for better training in Ohio for school employees who deal with special needs students. Read more.

Parents criticize autism insurance coverage (Richmond, Va.)
A group of 30 parents is complaining to Virginia insurance regulators that health plans are deceiving consumers about coverage for autistic children. Read more.

Cuts hurt programs for disabled (Ft. Wayne, Ind.)
Announcements of school closings and teacher layoffs have resounded across the state as Indiana continues to deal with tax revenue losses and an ongoing recession. Other state-funded services, including those for people with developmental disabilities, are taking substantial hits as well. Read more.

New Research Raises Hope That Autism Effects May Be Reversible (Medical News Today)
A new study by researchers at The George Washington University School of Medicine and Health Sciences’ Department of Biochemistry and Molecular Biology raises hope that autism may be more easily diagnosed and that its effects may be more reversible than previously thought. Researchers have identified potentially removable chemical tags (called “methyl groups”) on specific genes of autistic individuals that led to gene silencing. They also observed these changes in cells derived from blood, opening the way to molecular screening for autism using a blood test. Read more.

Ups and downs make ‘Fashion Speaks’ a catwalk to remember (The Daily Princetonian)
If the standing-room-only crowd that packed into the Rockefeller College Common Room last Friday night came to glimpse some of the hottest bodies in Princeton, it certainly found them. The student models’ chiseled abs and exposed cleavage has always attracted an audience to “Fashion Speaks,” Service in Style’s annual charity fashion show, just as much (if not more than) the clothes they are wearing – and this year was no exception. Read more.

Psychiatrist says teen was anxious on day of killing (Woburn, Mass.)
A child psychiatrist testified in the murder trial of John Odgren yesterday that the mentally disturbed teenager had an obsession with violence and viewed the date he killed a fellow student, Jan. 19, 2007, as ominous because the number 19 was a recurring sign in a Stephen King thriller series. Read more.

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