Columbia Parkinson Support Group Meeting--This Sunday, the 21st...

Our next meeting is Sunday - July 21, 2013 at 3:00 pm until 4:30 pm

Topic: "Helping caregivers and patients to make critical decisions that affect their quality of life"

Speaker: Debbie Kelly - A licensed social worker, Debbie Kelly is the principle owner of Geri-

Advocates Care Management, LLC. With more than 15 years combined experience in behavioral

health, managed care, geriatrics, and hospice social work.

Care Managers can assist by helping problem-solve when coping with the needs of aging persons

with physical and / or cognitive impairment or decline, living alone in the home or in assisted living /

nursing care. Care managers can do a comprehensive needs assessment including medical and

mental status, environmental, safety, financial, legal and social / spiritual needs. [A note from Dottie

- This meeting will provide valuable information that may be needed now or in the future to manage

the care of PD patienst and/or the family of the PD patients.]

Where: Lexington Medical Center Park 1 - Auditorium - 2720 Sunset Boulevard, West Columbia, SC 29169 --- We suggest that you print out a copy of the map attached to the end of this newsletter.

Time: 3:00 pm until 4:30 pm Cost: FREE - Please Bring Guests. We always welcome any guests to come to attend our meetings. The more family, friends, neighbors, business associates, or anyone who has an interest in Parkinson's disease can learn about Parkinson's disease, the more support they can provide to the Parkinson's patient. We always welcome students from our universities and colleges - and professionals from the medical community! Meetings are open to anyone regardless of race, color, and national or ethnic origin. We welcome anyone afflicted with Parkinson's disease; anyone who has an interest in Parkinson's disease; as well as all visitors, family, friends, and guests to our monthly meetings. There is no cost to attend our meetings.

To Contact Us:   Please call us between the hours of 10:00 a.m. until 8:00 p.m. Eastern Standard Time Zone - Because we screen our telephone messages, please leave a message on our answering machines, and mention "Parkinson" -or- you can send us email

            Dottie Gantt, President - Email: contact@columbiaparkinsonsupportgroup.org - Telephone: 803-604-0061

            Carol Baker, Vice President - Email: caroltbaker@bellsouth.net - Telephone 803-781-6193

We look forward to seeing you at any of our meetings!

Regards,

Dottie

--

Dottie M. Gantt, President

Columbia Parkinson's Support Group

Email contact@columbiaparkinsonsupportgroup.org

http://www.columbiaparkinsonsupportgroup.org/

Telephone 803-604-0061

High air pollution areas linked to double the risk of autism

High air pollution areas linked to double the risk of autism

U.S. mothers-to-be exposed to high levels of air pollution while pregnant were twice as likely to have a child with autism, researchers say.

Lead author Andrea Roberts, research associate in the Harvard School of Public Health Department of Social and Behavioral Sciences, said exposure to diesel particulates, lead, manganese, mercury, methylene chloride and other pollutants are known to affect brain function and to affect the developing baby.

Two previous studies found associations between exposure to air pollution during pregnancy and autism in children, but those studies looked at data in just three U.S. locations, Roberts said.

"Our findings raise concerns since, depending on the pollutant, 20 percent to 60 percent of the women in our study lived in areas where risk of autism was elevated," Roberts said in a statement.

The researchers examined data from Nurses' Health Study II, a long-term study based at Brigham and Women's Hospital involving 116,430 nurses that began in 1989.

From the group, the authors studied 325 women who had a child with autism and 22,000 women who had a child without the disorder. They examined pollution levels and exposure. They also adjusted for the influence of factors such as income, education and smoking during pregnancy.

The study, published in the Environmental Health Perspectives, showed women who lived in the 20 percent of locations with the highest levels of diesel particulates or mercury in the air were twice as likely to have a child with autism as those who lived in the 20 percent of places with the lowest pollution levels.

Other types of air pollution -- lead, manganese, methylene chloride and combined metal exposure -- were associated with higher autism risk as well, Roberts said.

The study found pregnant women who lived in the 20 percent of locations with the highest levels of pollutants were about 50 percent more likely to have a child with autism than those who lived in the 20 percent of areas with the lowest concentrations.

To learn more, please click on the above title.

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Autism Speaks and National Black Church Initiative seek to reduce age of autism diagnosis

Autism Speaks and National Black Church Initiative seek to reduce age of autism diagnosis

Autism Speaks, the world's leading autism science and advocacy organization, and the National Black Church Initiative (NBCI), today announced their new collaboration seeking to reduce the average age of diagnosis and to increase access to high-quality early intervention for children with autism spectrum disorder (ASD) in the African American community. The collaboration will be piloted in 150 churches in the greater Atlanta area as part of the Autism Speaks Early Access to Care initiative. Outreach into these congregations will increase awareness of the signs of autism and inform congregants, their extended families, and community of available resources and services.

"Studies clearly demonstrate that signs of autism can emerge as early as six to 12 months and that there are effective tools to screen children for autism risk as early as one year and to provide a reliable diagnosis as early as 24 months," stated Autism Speaks Assistant Director of Public Health Research Amy Daniels, Ph.D. "Yet, children in the African American community are typically diagnosed even much later than the four to five years of age which is the average age of autism diagnosis in the United States according to the CDC."

While early detection is critical to initiate early intervention therapies for optimal outcomes, many parents have very little knowledge about autism and its symptoms. When children with ASD are treated with appropriate early intervention services between the ages of three and five years, approximately 20 to 50 percent of those children may be able to be mainstreamed.

"NBCI is honored to work with Autism Speaks on this critical health issue, which hits close to home for the African American community. Racial disparities in early detection and access to care and diagnostic information are a real concern for the black church, and NBCI pledges to serve as a tireless advocate and community leader to raise awareness on these issues," said Rev. Anthony Evans, President of the National Black Church Initiative. "We look forward to working with the experts at Autism Speaks and our Atlanta member churches in the coming weeks and months for the sake of our children's well-being."

Through this collaboration, Autism Speaks will provide written and other collateral materials which can be used by these churches to help their congregations understand developmental milestones and the possible signs of autism.

Parents will be provided information regarding standardized screening tools used to assess if a child is at risk for ASD and provide guidance to parents on how to speak with their healthcare provider. Information provided by Autism Speaks will be given on where and who to contact for further evaluation and early intervention services. Children under the age of three are eligible for evaluation provided at no cost through the state's early intervention office. Local Atlanta-based resources include Babies First, the Marcus Center, the Emory Autism Center and the CDC.

Should a diagnosis of ASD follow, parents can find extensive information on the website AutismSpeaks.org – starting with the Resource Guide which helps families find links to local services and then through a series of Tool Kits that offer guidance from the first 100 days after a diagnosis through adulthood.

"We continue to make significant progress in autism research," added Autism Speaks Chief Science Officer Robert H. Ring, Ph.D. "It is critically important to put science into action, to have the research we support work for the community and make a real difference in people's lives. We hope to make a significant difference by substantially lowering the age of diagnosis for so many children at risk."

Following this pilot phase in Atlanta, Autism Speaks and NBCI will assess progress and outcomes before expanding it to other regions across the United States. For more information about the collaboration visit the NBCI website and for information about the Autism Speaks Early Access to Care initiative, visit:http://www.autismspeaks.org/early-access-care.

In addition to Early Access to Care, Autism Speaks and the Ad Council recently launched the "Maybe" campaign, a new series of public service advertisements (PSAs) designed to reach African American and Hispanic parents. The PSAs, which were distributed to media outlets nationwide last month, show some of the early signs of autism and encourage parents to take immediate action if their child is not meeting standard developmental milestones.

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How To Make Museums More Inviting For Kids With Autism

Last January, Noelle Murphy and her family were on their way to the Please Touch Museum for children in Philadelphia. Right before they arrived, 3-year-old Dylan had an accident.

"He wet himself," Murphy said, "And we were thinking, 'Oh no, how are we going to deal with this?' "

Dylan has autism, and his mom, Noelle, tends to choose at-home activities over unpredictable outings like a day at the museum. If Dylan becomes overwhelmed by his surroundings, he might yell loudly, or drop to the floor and refuse to get up. For Noelle, that's not out of the ordinary. But when strangers around them are added to the mix, it can make for an embarrassing scene.

But that day at the museum was different for the Murphys.

They took advantage of Play without Boundaries — an hour of museum time for kids with special needs. No weirdness, no awkward explanations, just families with other families who understand the challenges of being in public with kids who are on the autism spectrum.

"When we got there, they had a pair of hospital scrubs in his size, they took his dirty pants and washed them," Murphy said. "It was an extremely different experience than what we are used to."

A study released Monday by the American Alliance of Museumsfinds more and more of these centers for learning and preservation are also places where health awareness is on display. The Please Touch Museum is one of over 30 museums in the U.S. that has responded to the special needs of visitors with autism.

"My first reaction in the car on the way home was to cry," Murphy said. "My husband asked why I was crying, and I said it was so nice to finally take him somewhere other kids go without having to worry about an unpleasant experience ... for us and those around us."

But it's not always easy to take a kid with autism out into the world, especially a museum. A recent tally found that 1 in 88 children in the U.S. is somewhere on the autism spectrum. For these youngsters, if a place doesn't have appropriate accommodations, museum-going is a no-go for much of their childhood. That's because so often, what seems like a fun diversion ends up causing feelings of anxiety and sometimes panic.

That's why some museums have made special accommodations. "During those hours the museum looks different," said Leslie Walker, Please Touch Museum's vice president for community learning.

Flashing lights are dimmed, and booming music is turned down. Kids who want a sense of security about their visit are encouraged to create custom schedules and maps beforehand. And museum employees who will teach kids about the exhibits go through sensitivity training to learn what needs a child with autism might have to interact like their peers.

"They know now to bend down and get on that kid's level, and to wait awhile before following up if they ask a question," Walker said.

At museums that acknowledge not every kid craves raucous, stimulating sights to have a good time, parents of children with autism find public places where they can be themselves. And they don't have to miss out on experiencing another childhood pastime with their kids, like getting lost in a museum.

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Diagnosing autism: The earlier the better

Diagnosing autism: The earlier the better

When five-year-old Walt Deriso finally made it to the top of the waiting list at the Marcus Autism Center, he spoke only three words. He wasn't toilet trained. Distraught, often enraged, he threw tantrums. He ran away.

"Anna and I had loved him since he came into our family at five days of age," says his adoptive father, Walter Deriso III, "but we had no relationship with him."

When the therapists and staff at Marcus first encountered the young boy, they encouraged him to put the things that interested or scared him on paper. Although seemingly disengaged, he drew happy scenes from a recent family vacation at the beach, perfectly spelled out words from a favorite video, and portrayed faces that showed different emotions. The therapists used the drawings as a springboard to work on Walt's lack of speech and behavioral issues and to help his parents build a relationship based on what their son was curious about.

"Our challenge," says his father, "the challenge of all parents of children with autism, was to figure out how to connect with him, to make him care enough to come into our world so we could help him use his gifts."

When intensive applied behavioral therapy did open that world to Walt, it turned out that he had a lot of emotional and intellectual gifts on which to draw. Four years later, the energetic nine-year-old is quick to grin, chatter, tell his parents he loves them, and enthusiastically hug visitors. In fact, the lessons in expressing affection have worked a little too well, and his parents are working to fine-tune the behavior. "He has to learn not to embrace every pizza delivery man!" says his mom, Anna Deriso.

The world fascinates Walt, even if in a very different way from his younger brother Henry. A typical five-year-old, Henry shares his parents' love of sports, closely following the Atlanta Falcons and all the teams at Vanderbilt, the family's alma mater. Little Walt's current passion is vacuum cleaners, on which he is an expert. Last year, to his parent's complete bewilderment, UPS delivered a new vacuum cleaner to their doorstep. Their oldest son, who only three short years earlier was unable to talk, much less read, explained how he had used his mom's credit card to order the vacuum cleaner on amazon.com. He had selected the one with the highest rating and asked for one-day delivery.

Walt attends school at the Marcus center five days a week, six hours a day, in addition to private speech therapy, occupational therapy, and special swimming exercises—"more hours than most adults work per week," says his dad. And if Walt works hard, so do his parents. Walt Deriso III is senior vice president at Atlanta Capital Bank, where his father and Walt's granddad, Walter Deriso Jr., an Emory Trustee, is chairman. Anna Deriso is a nurse practitioner. Having a child with autism is the third job in the family—requiring hours of therapy and mountains of paperwork. But since Georgia is one of the states that covers little in the way of autism care, neither of Walt's parents has the luxury of not working.

The Derisos also feel a commitment to help others as they have been helped. Every week, they talk by phone or in person with parents who have a child who may have autism. They are active in the national nonprofit Autism Speaks, and they raise money for scholarships at the Marcus Center, where Walt III serves on the board and where tuition for one-on-one treatment costs more than a year at Harvard.

It's hard, admits Deriso, but "it's worth every minute, seeing the progress that Walt is making."

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An Airport Rehearsal For Children With Autism

An Airport Rehearsal For Children With Autism

Over 70 people from Connecticut attended Wings for Autism, a social learning experience for children and teens with autism, hosted by Autism Families CONNECTicut (AFC) at Bradley International Airport. Families encountered the sights, sounds, and activities of a traditional airport experience by participating in check-in and security lines, waiting, boarding and sitting on the plane, arrival, and baggage retrieval.

"For a child with autism who may have extreme sensitivities to noise and commotion, it provided an invaluable way for them to practice a process that otherwise may result in sensory overload," said Leah Moon, president of AFC.

Wings for Autism is a program created by the Charles River Autism Support Center and was presented in partnership with AFC, Connecticut Airport Authority, Bradley International Airport, Southwest Airlines,Delta Airlines, JetBlue, and the Transportation Security Administration.

Jackie Procyk, mother of a nine year-old boy with autism, said her family reaped the rewards of practicing the airport experience through Wings for Autism. "Traveling by plane had previously felt off limits to my family. It wasn't until Wings for Autism that we built the confidence to book a trip to Disney World."

Autism Families CONNECTicut is a nonprofit organization formed by parents and families of children with autism spectrum disorders (ASD). The mission is in the name. We CONNECT individuals with ASD to each other and the community by providing recreational opportunities, social activities and educational information. Visit our website http://www.autismfamiliesct.org or find us on Facebook and Twitter @AutismFamCT.

Wings for Autism was created by the Charles River Center, an affiliated chapter of The Arc, in collaboration with the Massachusetts Port Authority. For additional information about bringing Wings to an airport near you, please email wingsforautism@thearc.org.

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