“We cannot, and we must not, balance the budget on the backs of our veterans. And as commander in chief, I won’t allow it,” President Obama told more than 5,000 legionnaires gathered in the Minneapolis Convention Center for the American Legion’s 93rd national convention, this week.
Tuesday, August 30, 2011
Monday, August 29, 2011
I joined the ACT Today! team during the quarterly rush to organize all of the applications before the Grant Committee would meet to discuss grant winners. It was a whirlwind of a few weeks, but I learned so much in the process. Primarily, this was because I had never knowingly met anybody on the autism spectrum, and (as I am sure that people familiar with autism agree) I found many of the available resources confusing or contradictory. Furthermore, reading about a medical diagnosis is one thing, but hearing the personal stories of families that have struggled through it is completely different.
During my first week on the job, Laura, Director of Programs and Development, warned me, “Be prepared to cry.” She was right. Every time I read the brief story that applicants are permitted to include or spoke to a parent on the phone, I was horrified at the conditions some of the families were forced to live in and awed by the strength that they all showed in the face of such obstacles.
I can remember a woman calling to ask for help in getting a pram for her triplets with autism so that she could get on the bus to get to therapy. They had already been left at bus stops on days so hot that all three children passed out with heat stroke. Financial constraints and the lack of disability-friendly prams for triplets stood in her way of improving her children’s lives.
Moreover, one application that sticks in my mind was sent in by a single mother with several children on the spectrum. She couldn’t work because there was no one to take care of her children, so they lived off of social security and food stamps. She just wanted to get some treatment for her children since she knew that it was so much more likely to be effective when they are young. “I just want them to one day be able to be independent,” her application pled.
Isn’t that what every parent wants? It makes me sick to know that the laws of our beautiful country do not allow these parents to provide opportunities for their children, despite their best efforts.
After a few depressing weeks of reading hundreds of applications, the best part of my job arrived: I was given the pleasure of calling all the grant winners. I swiftly experienced a variety of reactions: from tears to laughter, from suspicion to disbelief. One mother burst into tears and didn’t stop for several minutes; another refused to believe me and insisted on finding the office number and calling us herself, just to make sure it was legitimate.
The impressive part of the whole experience was talking to the providers of the services, treatments, and materials. ACT Today! gives our grants directly to these providers, not to the families, so it is necessary to liaison with them as well. Every time I spoke with one of these providers, I would ask if they could offer any discounts. Without fail, at least 70% were either already providing discounts to the families or were willing to give additional therapy sessions, free deliveries, or even up to 40% discounts. I was overwhelmed by the goodwill that these people showed for those in need.
As the summer came to a close, I spent the last few weeks working on a presentation that would be used at ACT Today!’s Denim and Diamonds 2011 event. As you may have heard, all the proceeds from the paddle auction will be going to 12 children that are in desperate need of Autism Therapy Dogs. This project was “my baby,” and I can’t wait to hear about how Denim and Diamonds’ attendees’ generosity will make so many children happy.
Working at ACT Today! was a wonderful and eye-opening experience. It was truly a privilege to work with the organization and I will certainly continue to follow it on Facebook and keep in touch with everyone I met and worked with. From the bottom of my heart, I would like to thank ACT Today! for the amazing opportunity. To all of the donors out there, thank you for your generosity and compassion; I cannot even begin to explain to you how much good you are doing. And finally, to all of you who are struggling with an autism diagnosis, keep your head up and don’t lose hope! Everything can (and will!) get better, and you are not alone!
Friday, August 26, 2011
Here's the recent FOX televised report, and below that is the most recent article in the New York Times (8/25).
Vaccine Cleared Again as Autism Culprit
By GARDINER HARRIS
Published: August 25, 2011 - New York TimesYet another panel of scientists has found no evidence that a popular vaccine causes autism. But despite the scientists’ best efforts, their report is unlikely to have any impact on the frustrating debate about the safety of these crucial medicines.“The M.M.R. vaccine doesn’t cause autism, and the evidence is overwhelming that it doesn’t,” Dr. Ellen Wright Clayton, the chairwoman of the panel, assembled by theInstitute of Medicine, said in an interview. She was referring to a combination against measles, mumps and rubella that has long been a focus of concern from some parents’ groups.The panel did conclude, however, that there are risks to getting thechickenpox vaccine that can arise years after vaccination. People who have had the vaccine can develop pneumonia, meningitis or hepatitis years later if the virus used in the vaccine reawakens because an unrelated health problem, like cancer, has compromised their immune systems.The same problems are far more likely in patients who are infected naturally at some point in their lives with chickenpox, since varicella zoster, the virus that causes chickenpox, can live dormant in nerve cells for decades.Shingles, a painful eruption of skin blisters that usually affects the aged, is generally caused by this Lazarus-like ability of varicella zoster.The government had asked the institute to review the known risks of vaccines to help guide decisions about compensation for those who claim to have been injured by vaccines. Legislation passed by Congress in 1986 largely absolved vaccine makers of the risks of being sued for vaccine injuries and forced those who suffer injury to petition the government for compensation.The government generally restricts compensation to cases involving children who suffer injuries that scientists deem to have been plausibly caused by vaccination, including seizures, inflammation, fainting, allergic reactions and temporary joint pain. But battles have raged for years over whether to expand this list, with most of the fighting revolving around autism.Many children injured by vaccination have an immune or metabolic problem that is simply made apparent by vaccines. “In some metabolically vulnerable children, receiving vaccines may be the largely nonspecific ‘last straw’ that leads these children to reveal their underlying” problems, the report stated.For instance, recent studies have found that many of the children who suffered seizures and lifelong problems after receiving the whole-cellpertussis vaccine, which is no longer used but once routinely caused fevers in children, actually had Dravet syndrome, a severe form of epilepsy. The flood of lawsuits over the effects of the whole-cell pertussis vaccine was the reason Congress created the national vaccine injury compensation program in the first place, and children who suffered seizures after getting this vaccine have been among the most well-compensated.In retrospect, the whole-cell pertussis vaccine may have played little role in the underlying illness in many of these children other than to serve as its first trigger.The Institute of Medicine is the nation’s most esteemed and authoritative adviser on issues of health and medicine, and its reports can transform medical thinking around the world. The government has asked the medicine institute to assess the safety of vaccines a dozen times in the past 25 years, hoping the institute’s reputation would put to rest the concerns of some parents that vaccines cause a host of problems, including autism. It has not worked.Sallie Bernard, president of SafeMinds, a group that contends there is a link between vaccines and autism, said the latest report from the Institute of Medicine excluded important research and found in many cases that not enough research had been done to answer important questions.“I think this report says that the science is inadequate, and yet we’re giving more and more vaccines to our kids, and we really don’t know what their safety profile is,” Ms. Bernard said. “I think that’s alarming.”Dr. Clayton said: “We looked at more than a thousand peer-reviewed articles, and we didn’t see many adverse effects caused by vaccines. That’s pretty remarkable.”A version of this article appeared in print on August 26, 2011, on page A19 of the New York edition with the headline: Vaccine Cleared Again as Autism Culprit.
By GARDINER HARRIS
Published: August 25, 2011 - New York Times
Thursday, August 25, 2011
"I just saw the PSA today on Fox News and I HAVE to do a story on your organization! AMAZING! Are there any families here in the Norfolk/ Hampton Roads area you are working with that would be willing to help us gain some more attention to the group?
Again, I HAVE to let this area know about it! All of my contact information is below. I hope to hear from you soon! Read my Married to the Military Blog at www.wtkr.com. It's all about the good, the bad, the ugly, and THE PRIDE of Military Life. Find resources and support all in one spot."
Tuesday, August 23, 2011
The 6th Annual Denim & Diamonds for Autism Honorary Committee, includes: Grammy Award-winning recording artist Michael Bolton, Olympic Gold Medal champion skater Kristi Yamaguchi, actor John Ratzenberger, TV host Brooke Burke, actor Kyle Massey, singer Drew Lachey, actor Chris Massey, actress Florence Henderson, NFL Hall of Famer Lawrence Taylor, NFL Super Bowl XL Most Valuable Player Hines Ward, and retired astronaut Buzz Aldrin.
Saturday, August 20, 2011
On Friday (8/19) my husband Read, son Wyatt and I were invited to be a part of FOX News Network's "Real American Stories" shoot.
Wednesday, August 17, 2011
I just read this article in the Los Angeles Times that I thought you should know about and enjoy..."The Lion King" on Broadway will be the first major New York show to host a performance geared specifically for individuals with autism.
The performance, scheduled for Oct. 2, is part of a new pilot program from the Theatre Development Fund called the Autism Theatre Initiative, whose goal is to make theater accessible to children and adults on the autism spectrum -- including those with Asperger's syndrome -- and their families.
"The Lion King," based on the popular Disney animated movie, has been running on Broadway since 1997. It won six Tony Awards, including for best musical and director Julie Taymor.
Monday, August 15, 2011
Here's a "news you can use" Associated Press article by Medical Reporter Lindsey Tanner. Please read it and share your thoughts in the comment section. We (ACT Today!) work with many families who have multiples with autism.....A new study suggests nearly one in five children with an autistic older sibling will develop the disorder too - a rate much higher than previously thought.
Researchers followed 664 infants who had at least one older brother or sister with autism. Overall, 132 infants or about 19 percent ended up with an autism diagnosis, too, by their third birthdays. Previous smaller or less diverse studies reported a prevalence of between 3 percent and 14 percent.
"We were all a bit surprised and taken aback about how high it is," said lead author Sally Ozonoff, a psychiatry and behavioral sciences professor with the Mind Institute at the University of California at Davis.
The highest rates were in infants who had at least two older siblings with autism - 32 percent of them also developed autism. Also, among boys with autistic siblings - 26 percent developed autism versus 9 percent of girls. Autism is already known to be more common in boys.
The study involved 12 U.S. and Canadian sites and was published online Monday in Pediatrics. Earlier studies were more local or involved fewer sites.
Ozonoff said parents of autistic children often ask her, "How likely am I to have another child" with autism? She said her study provides a more up-to-date answer.
However, Ozonoff noted that 80 percent of siblings studied did not develop autism, and that the prevalence rate was an average. It may be different for each family, depending on other risk factors they may face.
Autism has no known cause but experts believe that genetics and external influences are involved. Research is examining whether these could include infections, pollution and other non-inherited problems. Ozonoff noted that siblings often are exposed to similar outside influences, which could partly explain the study results.
Infants in the study were enrolled before they showed any signs of autism, such as poor eye contact and little social interaction.
The study is an important addition to autism research and "has critical implications for families who are deciding whether they'll have another child," said Catherine Lord, director of the Institute for Brain Development at New York-Presbyterian/Weill Cornell Medical Center. Lord was not involved in the study.
Kathleen Lanese of Kings Park, N.Y., says having one son with autism didn't make her think twice about trying to have another child, even though she knew there was a chance the second would be affected, too.
"We wanted another child and we were going to take whoever we got," said Lanese, who was not involved in the study. Still, when her younger son was a baby, she says she "watched him like a hawk" for autism signs. He was diagnosed with autism at 16 months, earlier than her older boy.
Ozonoff said the study should prompt families and their children's doctors to be vigilant with infants whose older siblings have autism. Early diagnosis is important because experts say behavioral treatment has the best chance of working if started early.
"Pediatricians need to listen and make a very focused plan for how to monitor those things, rather than taking a wait-and-see attitude" toward children with autistic siblings, Ozonoff said.
Alycia Halladay, a research director at the advocacy group Autism Speaks, said the study provides a more robust, accurate prevalence estimate than previous studies, and strengthens the idea that family history is a risk factor.
Her group, the National Institutes of Health and the Canadian Institute for Health Research are among those who paid for the study.
American Academy of Pediatrics: http://www.aap.org
National Institutes of Health: http://health.nih.gov/topic/Autism
AP Medical Writer Lindsey Tanner can be reached at http://www.twitter.com/LindseyTanner
Check out the video below.
It was so much fun, and we look forward to participating next year! Thanks to all the families and friends who came by to visit us at the event!
Thursday, August 11, 2011
Actor Joe Mantegna Hosts ACT Today!’s 5th Annual Charity Golf Classic Benefiting Children with Autism
"ACT Today! is thrilled to have the support of the prolific actor and humanitarian Joe Mantegna, as well as the local business community for the event,” said Nancy Alspaugh-Jackson, Executive Director of ACT Today!.“The goal of this year’s golf tournament is two-fold: to increase autism awareness and to raise funds in order to help our families receive the resources they need for their children with autism."
Monday, August 8, 2011
ACT Today! Honors Philanthropists Tom Bergeron and Rebecca Grossman at 6th Annual Denim & Diamonds for Autism Event
“ACT Today!’s mission is to provide resources and fund grants for care and treatment to children whose families can not afford the necessary tools their child needs to reach their full potential," says Nancy Alspaugh-Jackson, ACT Today! Executive Director.
“We rely heavily on our supporters to help us help these children. When it came time to select this year’s ACTivist and Golden Cowgirl, there was no doubt in the minds of the board of directors who those two should be. Tom Bergeron and Rebecca Grossman are passionate about spreading autism awareness, and the fruits of their labor this year have really helped us (ACT Today!) tremendously, as we were able to fund a record number of grants to families.”
“This is such a great event for an even greater cause,” says singer Drew Lachey of 98 Degrees and event presenter. “I am proud to be a part of this year’s Denim & Diamonds. I think what ACT Today! does and what Tom Bergeron is doing to help children with autism inspire me to want to do more.”
Wednesday, August 3, 2011
|Eddie and Lisa Guardado|
Talk about Christmas in July!
|Max holding his ipad|
We are so thrilled and grateful that Max's wish for an iPad2 was granted to him! We have downloaded many wonderful apps that help him with reading (Make a Word, The Story Mouse), math -- a tough subject for him (Math Series) and telling time -- another concept he has trouble with (It's Learning Time). Academics are hard for Max, but we have found a way to make them a bit more fun (always a plus)! Despite years of different therapies, Max still struggles with his play skills, but the iPad has sparked his imagination with creative apps (Draw the Stars, Fluidity, Connecting the Dots is Fun, Spin Art) and has become quite the social tool. He uses the iPad as a conversation starter by showing others photos he's taken, movies he's made or games he'd like to play with you. And he has figured this all out himself; I never showed him how to navigate the iPad.
Max's speech therapist also gave us a large list of apps for Apraxia and Communication, which has been very helpful. Overall, it seems like the possibilities for what he can do with this amazing computer are endless. We believe that Max, like his new iPad, has limitless potential. Thank you for helping him reach it.
|Max and his mom|
I received this email from one of Dustin’s therapists shortly after our visit...
I saw Dustin yesterday and was excited to see him in action with his new iPad! He was so excited to show me how to use it. I love that it is an easy way to help him communicate, but hadn’t even thought about the appeal of the fun apps on there in terms of motivating his peers to interact with him! he showed me how he can use to help him talk and then we played some games. I have known Dustin for 6 years and have never seen him so excited. Thank you!!!!
Taira Lanagan, MS, BCBA
That is a gift that money can’t buy.