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Another elected official we can get behind! Our new state senator has supported looking into the vaccine autism connection. And before the anti-vacciners get upset with me, I'm not against vaccines. I just think a new born baby should not be given a Hep B vaccine on his first day of life. Is that asking too much?
I don't think our former president even uttered the word autism during his 8 years. And to think day one Obama addresses screening putting us ahead of other medical issues... well I did get teary eyed. All address needs in our community but life-long services gives me hope that when my guy becomes an adult, we will have more help from the government. Or at least a reduction in paper-work. Thank you President Obama for noticing!
Autism is a spectrum disorder. Which means what is happening in my house and what is happening in the house in this article both qualify as autism. I read this article with a heavy heart.. but also understanding because i faced some of these situations when Taylor was little. He has grown out of the screaming and the throwing himself on the floor but I recognize a family that only goes away by renting a house. We do that too. We don't fly to a vacation spot because I always need to have an out. Probably the reality of that attitude is over, but once you have that ingrained in you, it's hard to get out of the habit. So this is a reminder to all of us in autismland, we each have different stories to tell. My heart goes out to the family that reads this and says "that's my life."
The last time I saw her we were in Wegmans and she was wearing this cute floppy hat. Taylor kept looking for her hair.. he has to have hair to play with.. but instead he touched the hat. She gave him that WOW smile. I know she couldn't believe the boy she met at 3 years old who only wanted to be picked up and thrown on a bed was now standing .. taller than her.. in the bakery department at wegmans. I told her daughter how much her mom had helped our community and how proud she has to be of all that Nan accomplished.
It has been a tough day for me. I believe that good things come to good people. Our Nan shouldn't have been taken from us so soon. Her family has lost their light. We have lost our light in the special needs community. Please say a prayer for her husband and children. The world is a little darker tonite. But heaven has a new star.
Parlez-Vous Autism?
Speaking the Same Language Between Home and School
Thursday, October 2nd
7:00pm – 9:00pm
Jowonio School - Community Room
3049 E. Genesee Street, Syracuse
Join us as Bud Cooney, Ph. D., Associate Professor of Special Education at LeMoyne College discusses strategies to help parents and school teams successfully work together to achieve a common vision. He will be touching on communication, how things can be misinterpreted, differences in how families envision success for their child and what schools consider to be success, and establishing a common ground.
Dr. Bernard "Bud" Cooney received both his Ph.D. and M.S. in Special Education from Syracuse University and a BS in Economics from Spring Hill College. His professional activities and research interests include teaching children and youth with autism in the inclusive classroom, co-teaching and differentiated instructional strategies, and transition from school-to-adult life. Besides teaching in higher education, Dr. Cooney provides workshops for teachers and administrators, and consults extensively in public schools throughout central NY, on effective teaching strategies for children with autism.
We hope to see you there!
Mark Your Calendar for Future CNY ASA Events
Monthly Meetings - November 6, December 4, February 5, March 5, April 2, May 7 and June 4
"Unlocking the Mystery" – 3rd Annual Gala: April 4
"one piece at a time" Autism Awareness Walk: April 26
Website: www.cnyasa.org E-mail: cnyasa@yahoo.com Phone: 315-447-4466
dee
Parents of Special-Needs Children Divided Over Palin's Promise to Help
By Jennifer Steinhauer and Amy Harmon tinyurl.com/5n8dmq
Amid the barbs and hockey banter Wednesday night, Gov. Sarah Palin directed an emotional appeal to the hearts of millions of parents with children who have special needs, promising they would "have a friend and advocate in the White House" in a McCain-Palin administration. As she spoke, the camera panned to her baby, Trig, who has Down syndrome.
Ms. Palin's offer of friendship sparked hope in many parents, advocates and lawyers as the often-marginalized subject of disabilities rights took center stage. "We need one, that's for sure," wrote one blogger, Rhymerchick, a Phoenix mother with an autistic child, adding, "I am tempted to vote for them just because of that promise."
In animated debates in blogs, chat rooms and classrooms across America, others wondered what such advocacy would entail. But the governor offered no details, and Maria Comella, her spokeswoman, would not elaborate on what Ms. Palin would seek to accomplish for disabled children as vice president. "She is going to be an advocate in the White House on multiple levels," Ms. Comella said in an e-mail message Friday, "because she understands the issue, what's needed and what works."
To those in Alaska who work with children with special needs, Ms.
Palin's pronouncement was surprising; the disabled have not been a centerpiece of Ms. Palin's 20-months in office or any of her campaigns for office.
She signed legislation that would increase financing for children in Alaska with special needs — though she was not involved in its development — yet that state is the subject of two lawsuits that allege inadequate services and financing for those children, particularly those with autism.
"I never heard Governor Palin say as governor, `You have an advocate in Juneau,' " said Sonja Kerr, a lawyer specializing in disability law in Anchorage.
What lawyers, advocates and parents are seeking now, Ms. Kerr said, is to learn. "What is behind the announcement?" she said. "An advocate is someone who pleads another's cause, so what is her plea going to be? To get rid of Medicaid wait lists so we can get kids services? To quickly pass the American with Disabilities restoration act? That is what I haven't heard."
Alaska, both by dint of its sparse population and lack of resources, has often struggled to provide care and educational services for its roughly 18,000 children with physical and emotional disabilities.
For years the state shipped thousands of children out of state for mental health services, a problem so acute that Ms. Palin's predecessor created a program intended solely to get enough services in the state to bring the children back; from 2004 to 2007 the number of children sent out of state fell to 300 from about 600.
While the state made a decision to close down mental health institutions in the 1990s, it has been unable to provide alternative services for children with mental health issues.
The rural makeup of the state outside Anchorage (where half the population resides) makes services all the more difficult.
"The reason they have so many problems is lack of resources," said Gary Mayerson, a lawyer who represents children with autism in 30 states. "We once went to Kodiak Island, where there are probably more bears than people, to see a kid with autism who needed a behavioral consultant. They literally have to fly these people in on float planes. So I can't exactly fault a school system for not having a speech therapist, but I do fault the district for not bringing them in or sending children out of the district for those resources."
Ms. Palin recently signed legislation that rewrote the state's school financing formulas, in the process dramatically increasing the budget for school districts that serve children with extreme special needs.
"She had no role whatsoever" in the development of the legislation, said its author, Representative Mike Hawker, a Republican. "Her role was signing. She recognized the importance of what we did and endorsed it."
Democrats have pointed, sometimes correctly, sometimes erroneously, to items in the state budget for the disabled that Ms. Palin cut.
According to state documents, she cut the state's Special Olympics budget in half.
The central concern of many parents with children who have special needs is the financing to fulfill the decades-old federal mandate requiring public schools to offer educational services to their children — or pay for them in nonpublic school settings.
The law, the Individuals with Disabilities Education Act, passed in 1975 with bipartisan support, called for the federal government to pick up 40 percent of the state cost of teaching children with special needs. The federal government pays less than half that, though more under the Bush administration than under President Clinton.
Mr. McCain voted to reauthorize the law, but voted against a measure, with nearly every other member of his party, to increase financing through a reduction in tax cuts for the wealthy. Mr. McCain has been a proponent of school vouchers, denounced by many advocates for children with special needs as draining public money away from special education programs; Ms. Palin is a school-choice advocate, her spokeswoman said.
Mr. McCain also opposes proposed federal legislation that would help pay for states to move people with special needs from state institutions into other living arrangements, but he has said he supports updating the Americans with Disabilities Act to offer more protections.
Ms. Comella, Ms. Palin's spokeswoman, would not elaborate on Ms. Palin's decision to make special needs children a centerpiece of her acceptance speech. But Ms. Palin's personal appeal held enormous emotional pull for parents who rarely see a public official who can personally identify with the same parental challenges as they do.
Ms. Palin's effort to rally parents of children with disabilities has also prompted reaction among those who fear that her idea of advocacy might really mean preventing abortions of fetuses with Down syndrome, rather than lobbying for the early medical and developmental assistance that is so crucial to their children's well-being.
New technology is enabling more women to learn in earlier stages of pregnancy whether their fetus is affected by Down syndrome. About 90 percent choose to terminate pregnancies. Parents of children with disabilities have sought to educate prospective parents on the emotional rewards of having children like their own. But many say they know better than anyone else how crucial it is that they be given a choice.
"Surely she understands that it can be dark and difficult sometimes," Sarahlynn Lester, whose daughter has Down syndrome, wrote on her blog this week about Ms. Palin. "Having been in the same position, I simply do not understand the desire to legislate (rather than educate) women into making better choices."
Nancy Iannone, a Democrat and mother of Gabrielle, 3, who has Down syndrome, said that she was so thrilled to see Trig on stage that she had to remind herself: "I am a liberal. I am a liberal. I am a liberal." Ms. Palin, she said, "has a child with a disability, but that doesn't mean her party is disability friendly."
The last time a candidate explicitly appealed to families of the disabled at a national convention, advocates said, was 20 years ago, when the presidential nominee, George H. W. Bush, endorsed the Americans with Disabilities Act — and got a 10 percentage point bump among voters who identified themselves as having disabilities, according to Andrew Imparato, president of the American Association of People with Disabilities, a lobbying group.
On Thursday, Mr. Imparato said he and other advocates received an e-mail message from Senator Barack Obama's campaign outlining the disabilities issues that the Democrats had addressed at their convention.
"They certainly must be aware of the effect Palin is having on this community," Mr. Imparato said.
This is what radio has become? Put the loudest bully on the air and let him rip? Let him convince his listeners that autism is a discipline problem? The hardest part of Taylor's autism was the LOOKS we would get at Walmart and Carousel. He would tantrum or yell or act out and rude folks everywhere would look or even say, "you have to get that kid under control." This was in 1998 before the word was out. Since then we've done so much hard work educating people that children having tantrums may be something OTHER than misbehavior.. all now down the drain as this idiot's listeners think our kids just need a good spanking. All the fathers who remain in their children's lives are supposed to be failures according to this loser?
So I wrote a note to the station I called home for 10 years. I love WSYR will all my heart. It stands for so much in this community and I was there when it was recognized by the NAB for it's public service. The Edward R. Murrow award and the Crystal award both reside at 500 Plum St.
Here is the note I wrote WSYR's GM Joel Delmonico. Please put your own thoughts down and write Joel. I can not emphasize enough that Joel is a good man and he loves this community. But he needs to know that Savage has no place on WSYR. Write Joel at joeldelmonico@clearchannel.com
here's what I wrote:
Hey Joel…
I know you must be overwhelmed hearing from everyone about what Michael Savage said. I promised myself I would take my time before emailing you because we know each other and it would be unfair for me to send a canned email from the many autism outlets that have written notes for the masses.
But at this point I can’t imagine why WSYR would stand by this hateful man. I know all the good works you have done in this community and I also know how much you support children with special needs. Please look at this show and decide whether it is worth standing by a person who has no clue what autism is and what it does to a family. You know me, you know Taylor and I know you know the many faces of families and children that autism has touched. WSYR has always cared about our community. Do not let this man spout hate from such a respected outlet in Syracuse. Michael Savage doesn’t deserve the time slot that WSYR has given him. He has aligned the station with hateful speech towards the children who need your help the most!
Thanks for listening.
dee
A Statement from Wendy Fournier, NAA President
For the last week, our community has been completely enveloped in the Michael Savage controversy. It infuriates me that this one man has managed to take away so much of our already limited time and energy by forcing us to defend ourselves and our beloved children against his vile remarks.
When I first became aware of Savage’s comments, I immediately got in touch with Mark Masters, the CEO of Talk Radio Network and Savage’s boss. Mark was aware of the comments but had not yet listened to the show. We spoke for a long while and I quickly came to realize that I was speaking to a kind and compassionate husband and father. Mark said that while he hadn’t yet heard the tape, he suspected that Savage was talking about one of the issues that bothers him most, the over-diagnosing and drugging of children in America, and that it was possible that his remarks were being taken out of context. Having dealt with the media and having seen the ridiculous way members of our own community have been edited to look like crazy, desperate parents, I was open to the idea that Mark’s suggestion may have been a possibility. Mark promised to speak with Savage and to give us the opportunity to refute his comments on the air.
On Monday evening, Mark fulfilled his promise and I was able to speak with Savage on his show. Leaving the door open to the chance that he was indeed taken out of context, I pushed my anger toward him aside and discussed with him many of his views about healthcare in America and the sad reality that families affected by autism face. Savage has several problems with the medical community in general that I personally agree with, the most frustrating of which is the over-zealous desire to drug our children.
However, when it came to Savage’s views on Autism specifically, he was completely misinformed and off the mark.
He believes that autism is being over-diagnosed. There may be a relatively small number of children who are wrongly diagnosed with an ASD, but for the most part, an autism diagnosis is not something that is given lightly. Those of us whose children have been through the evaluation process know that it is extensive.
On the subject of diagnosis, our kids are diagnosed based on observation of skills and behaviors. All the while, the medical community completely fails to investigate what might be causing those behaviors. This needs to change. We need research to turn away from number-crunching epidemiological studies and the search for the elusive Autism gene, and start looking from a biological standpoint at the children who are currently affected. Your child may very well meet the current diagnostic criteria for Autism, but what if he or she is really suffering from heavy metal toxicity or auto-immune encephalopathy, for example? Those illnesses are known to cause symptoms of Autism. If your doctor kept digging to find the cause of your child’s neurological dysfunction, you would likely come out on the other side with a treatable illness and hope for the future, not to mention health insurance coverage for treatment. But instead, you are told that your child has autism, there is no treatment, hurry to get on a waiting list for behavioral therapies. Mainstream physicians need to start recognizing and treating the underlying medical issues that are causing the symptoms we collectively observe and diagnose as autism, only then will we start to make some real progress. My hope is that one day, no child will be diagnosed with “Autism”, that all sick children will be properly diagnosed and successfully treated for the illnesses that they truly suffer from.
Back to Savage and his misconceptions, this one is almost amusing. He actually thinks that having a child with autism opens the door to free medical treatment and services from the government, suggesting that parents might actually push for a diagnosis in an effort to screw the government and our fellow taxpayers. Those of us in the trenches know that the word “autism” is the last thing a parent wants to hear. Savage’s implied freebies are nowhere to be found. The minute your child is diagnosed, you need to fit yourself with a suit of armor, a shield and a big-ass sword, because you have just taken the first step into a never-ending fight to get the services and medical care that your child needs. Our kids are placed on waiting lists for services that can be years long, our health insurance companies turn their backs on us, and our overwhelmed and under-funded school districts force us to fight for even the most basic services to help our kids. The number of families facing bankruptcy and losing their homes to provide their children with the care they need is staggering.
Savage also thinks that greedy lawyers are somehow involved, looking for ways to milk the pharmaceutical companies for families who claim that vaccines caused their child’s regression. He is completely ignorant to the fact that manufacturers are protected from all liability on vaccine injury claims thanks to the National Vaccine Injury Compensation Program. I tried to point this out to him, but he pushed on with this false assumption. What I didn’t realize until hearing the show later, was that my phone line was completely muted when Savage was speaking. There were several times when I tried to interject and disagree with him, and I was simply not heard. This is misleading and my silence could be interpreted by some of his listeners as agreement. I’m not happy about that.
Savage’s producer asked me to have several other guests from our community standing by to be interviewed during the show. I did that, and not one of them was included. The callers who were put on the air appeared to be hand-selected to participate in the show with the sole purpose of allowing Savage to backtrack and basically cover his own behind.
Savage claims to be an advocate for children’s health. One might think that instead of ranting about bad parenting, he would be questioning why we have so many sick children in this country. Coinciding with the increase in recommended vaccines, we’ve had an increase in chronic diseases including Asthma, ADD, ADHD, Juvenile Diabetes, and yes, Autism. Why do our government health agencies refuse to compare the overall health outcomes of vaccinated versus unvaccinated children? Why do they continue to inject our babies with substances that are known to be toxic to the developing brain and immune system? Why is our government being allowed to treat an entire generation of children like lab rats, by requiring an ever-increasing number of vaccines and conducting absolutely no safety studies on their cumulative effects?
Last night, I received an email with a link to a new website, savageonautism.com. He’s got a website for this now? On this site, there is a link to an audio clip of my discussion with Savage. It noted, “Savage speaks with Wendy Fournier, President of the National Autism Association who says that she has much common ground with Savage”. Again, misleading. I do not appreciate the implication that I am in any way on his side and I will not be used as a pawn in his attempt to backtrack on his comments. I contacted Talk Radio Network about this and the reference was promptly removed.
Mark Masters from TRN has offered to air public service announcements on their nationally syndicated shows in an effort to educate listeners on the reality of autism. For that I am very grateful. I hope that it will undo some of the damage that has been done.
That damage is very real, and it frightens me for our children. I just got a phone call from a 74-year-old lady from California who was literally screaming at me, saying that we are a bunch of hysterical mothers who refuse to discipline our kids. She could barely catch her breath, and she’s calling us hysterical? I ended up hanging up on her and she’s called back 6 times already - that’s how fired up and anxious she is to criticize us as parents and the children we love. This is the damage that Mike Savage has done, whether he meant to or not is completely irrelevant. There are people out there who are taking his words at face value and his message is one of hate.
To the fine people who are sending me hate mail about freedom of speech, you can stop. I’m all for it. You can say anything you want to in this country, but if you choose to attack our kids, be ready to defend your comments. We’re already suited up and are getting pretty good at wielding our big-ass swords.
In closing, I have listened with an open mind to Savage’s claim that he was taken out of context. My personal conclusion is that he was not, he’s lying to us. There are several reasons why I don’t believe him, but I keep coming back to one very significant quote. Savage claims he was talking about the “misdiagnosed”, not kids that truly have autism. But during his deplorable rant he said, “What do you mean they scream and they’re silent?” He was talking then about children who are silent, children who are non-verbal, children who are severely affected by autism, children like my beautiful little girl.
Michael Savage, take your father’s advice. Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Whether you actually meant to hurt suffering families or not, the simple fact is, you did hurt us. And for that alone, you should man up and apologize.
Wendy Fournier, President
National Autism Association
wendy@nationalautism.org
Model Transition Program sponsored by the Central New York Training Coalition
Presenters Susan Young, Ann Miles and Patty Ordway-Bennet
with representatives from Onondaga Community College and Onondaga Community Living
May 28, 2008 9 am- 12 pm.
Enable
1603 Court Street
Syracuse, NY 13208
The mission of transition services is to work with students, parents, teachers, agencies, employers, and colleges to help create an appropriate and meaningful transition plan.
Model Transition Program activities will:
provide VESID informational meetings
conduct world of work career exploration workshops, occupational tours and interest screening
assist in scheduling college visits
provide more students with the opportunity of real work experiences, including job shadowing, after school and summer employment
increase communication between school and community through Transition Advisory Council composed of employers, parents, students educators and community organizations
Registration by May 21, 2008. A fee of $25.00 per person will be charged. Registration is limited and will be handled on a first come first serve basis. Make checks payable to Central New York Training Coalition and Mail to CNYTC, P.O. Box 6303, Syracuse, NY 13217....For more information contact Tiffany Teeter at 424-1845
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An Invitation from Commissioner Hogan
2008 Forum and Dialogue
Improving the Mental Health and Wellbeing of
Children and Families in NYS
May 28, 2008
10:00-3:00
3:00-4:00 Youth Dialogue (see attached)
Renaissance Syracuse Hotel
701 East Genesee Street
Syracuse, NY 13210
Welcome and Personal Perspective- OMH Parent Advisor and Family
Remarks and Presentations- Commissioner Michael Hogan &
Deputy Commissioner David Woodlock
Public Dialogue-
• The dialogue portion of each meeting will encourage questions of and conversation about the Children’s Mental Health Plan. To learn more visit: http://www.omh.state.ny.us/omhweb/engag
• Your Suggestions and Recommendations will help shape the Children’s Mental Health Plan
How can my voice be heard?
• Come, Listen,
• Ask questions and share your insights using the “Comment Cards”
• If you cannot attend, send your comment cards to Elizabeth Pease @ dialogues@omh.state.ny.us or Office of Planning, New York State Office of Mental Health, 44 Holland Avenue, Albany, NY 12229.
• Hold a community meeting to review and discuss the developing Children's Mental Health and submit group comment cards to Elizabeth Pease @ dialogues@omh.state.ny.us or Office of Planning, New York State Office of Mental Health, 44 Holland Avenue, Albany, NY 12229.
• Comment cards available at: http://www.omh.state.ny.us/omhweb/engag
***Wear GREEN for Children’s Mental Health
****Encourage others to participate
Help NYS Build a Stronger, Family Driven Children’s Mental Health Plan
For Registration and Special Accommodations contact Mary Rathbun
CNY Field Office: Phone: (315) 426-3930 Email: ocadmmr@omh.state.ny.us
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National autism expert to speak at SUNY Upstate April 7
Martha Herbert, M.D., a pediatric neurologist and autism researcher who directs the Cure Autism Now Foundation's Brain Development Initiative, will speak on a whole body systems approach to autism and its implications for treatment and research April 7 at 4:30 p.m. in the Medical Alumni Auditorium, Weiskotten Hall, 766 Irving Ave. The presentation, part of the E. Gregory Keating Global Health Lecture Series, is free and open to the public.
Herbert, a member of the Harvard Medical School faculty, also serves as co-chair of the Environmental Health Advisory Board of the Autism Society of America.
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FEAT FAMILY CONNECTIONS MEETING
Our next family connections meeting is approaching fast. Its Wednesday April 9th from 6:30 to pm at the North Area YMCA on Wetzle Road in Liverpool. Remember that childcare is available, but RSVP ASAP to get a spot!! The new contact information for childcare is: Cheryl Walker and she can be reached by email at cwalker@northareafamilyymca.org. RSVP is a must!! Hope to see you there!!
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Enable has started it's STARS social skills program up again.
They are seeking older teens to young adults to start a group for this age range. THIS IS GREAT NEWS!!!!
Contact Joe Smith at Enable 455-7591 (Tues-Thurs) jsmith@enablecny.org or Monica Cappa also at Enable (Mon-Fri) mcappa@enablecny.org for more information.
They also have programs for children starting at age 7. The class for 7-14 year olds for this spring is full but they are taking names and beginning intakes for the fall class.
For the older teen/young adults there is also:
Young Life CAPERNAUM, faith-based friendship group, meets one Sunday
a month from 3-5 PM at Liverpool United Methodist Church in the village of Liverpool. YL staff lead this group. HOPE.network partners with YL to provide this opportunity for individuals with special needs, ages 14 and up, to enjoy music, food, games, a Bible lesson, and fun with special buddies! Contact Darryl or Becca at 761-2929. Dates: 3/9, 4/13, 5/4, and 6/8.
and the ARISE Central Square Social Club:contact Vicki Affinati vaffinati@ariseinc.org and
the Arise Teen Group:contact Heather Lee
hlee@ariseinc.org
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Visual Spatial Workshop
Lights, camera, TY, video games and computers! Our children are growing up in a visually exciting world. The schools¢ curriculum is largely auditory, sequential and getting more difficult every year. How can we bridge the gap in these different styles to make learning easier for our kids? This workshop will provide definitions of learning styles and implications for enhancing learning by optimizing the use of visual teaching strategies.
Barbara Ward, who has over 30 years experience as a special educator in the Baldwinsville School District is the presenter. In her workshops she strives to identify forces that may be interfering with the teaching/learning/growing process and provide strategies to build bridges between the learner and the learning
This workshop is being sponsored by HOPE.network and will take place April 8th from 7-9 PM at Northside Baptist Church ,
7965 Oswego Road , Liverpool , NY .
There is no charge for the workshop but registration is necessary to ensure that there are enough handouts for participants. Please respond to this e-mail with your intent to attend or contact Lory at 652-3160.
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ARISE AT THE FARM Camps 2008
Summer is coming quickly, and the staff at the Farm are gearing up for summer camps. Anyone who's participated in the past can tell you these are lots of fun, and spots fill quickly. Spaces are limited, and are filled as they arrive at the Farm. Please deliver applications to the Farm mailbox in the downstairs copier room, or mail to ARISE at the Farm, 1972 New Boston Road, Chittenango, NY, 13037.
Kids camps ages 6-21
June 27,30, July 1,2,3 9am-3pm There will be transportation from 635 James Street to the Farm and back during this week. The bus will arrive at 8:15 and return
around 3:45 each day.
August 11-15 9am-3pm There will be transportation from various pick-up points around Madison County. Where possible, door-to-door transportation will
be available. Pick up and drop off times will vary.
August 18-22 9am-3pm There will be transportation from the Oswego ARISE office to the Farm and back during this week. There will be transportation
from various pick-up points around Madison County. Where possible, door-to-door transportation will be available. Pick up and drop off times in Madison County will vary.
ARISE at the Farm day camps are designed to be integrated, and are open to children of all abilities. There is limited transportation available, as well as some scholarships. Cost of the camp is $350. We offer horseback riding, high and low ropes course, a petting zoo, fishing, bicycling, crafts and games. We have a nurse on staff for these camps.
Soccer camp:
July 7-10 9-noon
This is our first ever soccer camp, and we are so happy to be offering it! We will have drills, scrimmages and lots of fun! Children must have their own shin guards. $100 per child
Parent/ Child Horsemanship camp:
July 28-31 9-noon
Parents and kids can learn together how to care for and ride a horse! Moms and daughters, Dads and sons, or any combination of adults and children in a family. $200 per pair
Tot camp:
August 4-7 9-noon ages 3-5
Horseback riding, fishing , crafts and games!! $125 per child
Please note: Call the farm at 687 6727 with questions regarding any of our offerings. We are always looking for new volunteers (at least 13 years of age). Training will be offered prior to the start of the camp season.
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Dan Olmstead has done it again with another great report about who knew what when. If you are interested in the vaccine connection and what our government knew... please give this a read.
dee
Jenny McCarthy was on Larry King for Autism Awareness month. She does such a great job. It's very much worth watching. She is a passionate advocate for our kids.
dee
Lights, camera, TY, video games and computers! Our children are growing up in a visually exciting world. The schools’ curriculum is largely auditory, sequential and getting more difficult every year. How can we bridge the gap in these different styles to make learning easier for our kids? This workshop will provide definitions of learning styles and implications for enhancing learning by optimizing the use of visual teaching strategies.
Barbara Ward, who has over 30 years experience as a special educator in the Baldwinsville School District is the presenter. In her workshops she strives to identify forces that may be interfering with the teaching/learning/growing process and provide strategies to build bridges between the learner and the learning
This workshop is being sponsored by HOPE.network and will take place April 8th from 7-9 PM at Northside Baptist Church, 7965 Oswego Road, Liverpool, NY.
There is no charge for the workshop but registration is necessary to ensure that there are enough handouts for participants. Please respond to this e-mail with your intent to attend or contact Lory at 652-3160.
I just posted my thoughts on the situation in Liverpool. It is a sad situation and we are all working to try and create a solution. Get the details here:
http://syracuseautism.com/speedminu
dee
Central Square ARISE Social Group
Next meeting is on
March 27th
6:30 PM-8:30 PM
at
Two Guys From Italy
Route 49 West Monroe
Join us for pizza and fun!
For more information please call:
Vicki at 668-4231 ext. 2108
Youth eat free
Adults 26 and over-$4.00
The Social Group is for youth who
are between the ages of 13-25
have any type of disability.
Washington Office:
Phone: (202) 225-3701
Fax: (202) 225-4042
Main District Office:
Phone: (315) 423-5657
Fax: (315) 423-5669
Here is Michael Arcuri's info:
Web Site: arcuri.house.gov
E-mail: Contact Via 'Web Form.' (you'll need to go to his website)
Washington Office:
Phone: (202) 225-3665
Fax: (202) 225-1891
Main District Office:
Phone: (315) 793-8146
Fax: (315) 798-4099
NAA ACTION ALERT
Join Jenny McCarthy - call the White House on Monday!
Forwarded from the Age of Autism Blog - www.ageofautism.com
JENNY McCARTHY: JULIE GERBERDING MUST GO!
By Jenny McCarthy
I’m asking all parents and autism groups to join me in demanding Julie Gerberding’s immediate resignation as Director of the CDC.
On Monday, March 10th, beginning at 9:00am Eastern Daylight Time, let’s all start calling the White House and ask President Bush & Laura Bush to demand Julie Gerberding’s resignation for incompetence during the autism epidemic. The White House switchboard can be reached at:
202-456-1414
Also, on the same day, please call your local Congressperson and Senators from your state and ask them to call for her resignation, too.
Julie Gerberding has led the CDC for 6 years during a time when the autism epidemic has only gotten worse. Despite tens of thousands of children who declined just like Hannah Poling, Ms. Gerberding stood before cameras yesterday defiant, cold, and defensive. Where is her humanity in the face of such tragedy? Why couldn’t she have said, “We at CDC want to make sure what happened to Hannah doesn’t happen to any other children, we want to make vaccines safe”?
Rather than listen to the heartbreaking stories of so many parents, you can be sure that Ms. Gerberding is spending her time right now trying to get the Spin Machine up and running to minimize, confuse, and deceive the American public.
The autism epidemic won’t end until we fix the vaccine schedule by reducing total vaccines, separating shots, waiting until our kids are older to begin shots, greening our vaccines, and screening for at-risk kids. Ms. Gerberding has stood by and watched self-interested parties more than triple our vaccine schedule and I’m certain her inactivity to help our kids will continue.
The chances of Ms. Gerberding taking the radical steps to reform the CDC and reform our vaccine schedule to make it kid-safe are zero! We need a new CDC Director who is an open-minded reformer and who recognizes that we are experiencing an epidemic of autism, which Ms. Gerberding has never publicly admitted.
Please, parents and national autism organizations, let’s all help make our voices heard on Monday.
Thank you,
Jenny McCarthy
Ah ha.. so here it is! Thank you Jim for doing a nice job of condensing our long conversation. I'm sure you got WAY more than you were looking for.
Two notes..
One - I pretty much write about autism in Syracuse on this blog.. not just the vaccine controversy. Not a big deal!
Two - I LOVE that the major headline in the paper is "Vaccine No Sure Link To Autism." I know Jim doesn't write the headlines or decides where these articles go. Notice the "Parents Still Suspect Vaccines" headline is on the back page. When my husband brought the paper in and said you were quoted in this article.. i almost fell off my chair. But the "Vaccine No Sure Link.." article is the national piece written to assure all you parents out there to keep getting your vaccines. Why should anyone question what the government says?
As David Kirby says in his piece.. just google "vaccines + autism".. you will see what parents are saying. The question doubters ask is where is the science? The question we parents ask is "where is the science that is not paid for by a vaccine maker?"
Our government needs to invest in studies done by researchers who work independently from any drug company. Until that study is produced, follow the money on the studies that are out there. There is no question that everything that has been produced so far is tainted by the very people who stand to benefit by keeping the vaccination program status quo.
Drug companies do a lot of good here and around the world. Bristol Meyers Squibb is a great company working to help people combat cancer and arthritis. I have so much admiration for the scientists who work there and dedicate their lives to solving the questions of diseases. I'm not about to ask that these companies be put out of business. I'm looking for answers not blame. Once we find what causes autism, we become so much closer to stopping this tidal wave of children lost to this devastating diagnosis. I long for that day.
dee
For those of you who aren't "autism parents" you should know that NONE of us want to see the end of the vaccination program in this country. We're not that stupid. What we do want to see is a test developed that would either rate a child's immune system or vaccinations would be based on a family's immune history. The children who develop autism clearly have a weakened immune system and can not protect themselves from the load we inflict upon them. I think this is intelligent and a well thought out compromise.
Jim asked me a question that is so telling and I've never thought about it. He asked me when was Taylor's first vaccine. I started to say three months.. because that's the vaccination schedule. But I remembered.. he was vaccinated on his first day on this earth. It was a hepititus vaccine. You only get hepititus from needle sharing or unprotected sex. Which of these actions was my newborn baby going to be doing??? What were we protecting him from? Do you think I was going to bath him in Onondaga Lake?
But the government and the pediatrician's union (The American Academy of Pediatrics) say we must stay on schedule or parents will not vaccinate their children. They don't want to give an inch. I hope this court case gets them thinking that MAYBE they should. But I imagine they're all too busy arguing with ABC about the TV show "Eli Stone" to think about that.
So here's why I love David Kirby. He continues to speak eloquently about our fight and he doesn't have a child or family member on the spectrum. We love reporters like him and others who have taken the time to understand what is at stake. Read his post.
dee
http://www.huffingtonpost.com/david-kir
(Bill inserted legislation making all vaccine cases against the major drug companies null and void into a bill that authorized money for our troops... it was shameful and it was done.. here's a link: http://thinkprogress.org/2006/05/08/vac
This does not make good for all the years that people whispered behind our backs that we "vaccine parents" were crazy. Maybe I should be the statesman that Al Gore is.. after years of saying "the earth is melting the earth is melting" we finally came to believe him. Well folks here it is 9 years after I first heard about vaccines and autism and finally the AJC believes! Vaccines cause autism. Not for everyone.. but for some children. And the 1 in 150 is on the government's conscience. I remember when the number was 1 in 250.. then 1 in 166.. now 1 in 150. We've been debating this fact for years and as every year has gone by the amount of children with autism has increased. FOR WHAT???? What was more precious than American children's mental health?
It took a long time to prove us right. I'm not the only parent who knew this and spoke the truth. There are others. And we're mad as hell and we're not going to take it anymore! Let the firestorm begin. - dee
http://www.ajc.com/health/content/healt
By ALISON YOUNG
The Atlanta Journal-Constitution
Published on: 03/06/08
In a move autism family advocates call unprecedented, federal health officials have concluded that childhood vaccines contributed to symptoms of the disorder in a 9-year-old Georgia girl.
While government officials continue to maintain that vaccines don't cause autism, advocates say the recent settlement of the girl's injury case in a secretive federal vaccine court shows otherwise.
The U.S. Department of Health and Human Services has concluded the family of Hannah Poling of Athens is entitled to compensation from a federal vaccine injury fund, according to the text of a court document in the case. The amount of the family's award is still being determined.
The language in the document does not establish a clear-cut vaccine-autism link. But it does say the government concluded that vaccines aggravated a rare underlying metabolic condition that resulted in a brain disorder "with features of autism spectrum disorder."
In an interview Wednesday with The Atlanta Journal-Constitution, Hannah's parents, Jon and Terry Poling, said the government's concession in the case will help pay for the numerous therapists and other medical experts their autistic child needs — now and for the rest of her life.
"At least we have some commitment from the government to take care of Hannah when we're gone," said Dr. Jon Poling, a neurologist.
But the case also thrusts the family into a national spotlight in the controversial public debate over whether vaccines have played some role in the growing number of U.S. children diagnosed with autism. Of particular concern to some families is the mercury-based preservative thimerosal, not used in child vaccines (except for some flu shots) since 2001.
Hannah's case was one of three vaccine-court test cases alleging that thimerosal caused the children's autism. The other cases go to trial in May.
Suspicion of vaccines is fueled in part by vocal advocates — including radio shock jock Don Imus and actress Jenny McCarthy — speaking out on radio and TV shows such as "Oprah" and "Larry King Live."
Even Republican presidential candidate Sen. John McCain said on the campaign trail that "there's strong evidence" that a preservative in vaccines is fueling the dramatic rise in autism cases across the country.
As many as 1 in 150 children in some communities have autism disorders, says the Centers for Disease Control and Prevention.
"We need to recognize this is a national crisis," Jon Poling said.
Autism is a lifelong neurological disorder that causes problems with communication and the ability to have normal social interactions. Autism and related autism spectrum disorders cover a range of symptoms that can vary from mild to severe. The cause is unknown, but scientists believe genes may play a role.
Pediatricians and public health officials worry that this case may cause fear among some parents and prompt them to refuse to vaccinate their children, and put them in real danger from measles, whooping cough and other diseases.
"The risks of diseases are real risks," said Dr. Melinda Wharton, deputy director of CDC's National Center for Immunization and Respiratory Diseases. Numerous large studies don't support a relationship between vaccines and autism, according to the CDC and the Institutes of Medicine.
The Georgia girl's case – and its implications in the vaccine-autism debate – raise more questions than it answers, experts say.
Some medical experts say it's difficult to fully assess the case because the federal vaccine-court documents are sealed from public view.
"It raised a lot of questions for us," said Dr. David Tayloe Jr., president-elect of the American Academy of Pediatrics. The national medical group's leadership has been seeking more information about Hannah's vaccine-court case since last week when a sealed vaccine-court document detailing the government's settlement was posted on the Internet by an autism book author, then circulated widely among autism groups.
The pediatrics association has been trying to get access to official documents in the case so medical experts can delve into the science, assess whether there are implications for other children and answer questions from doctors and families.
"Our responsibility is to make sure the public is given good information and make sure the hype doesn't distract from public health," Tayloe said. "I still would not think that we're going to have evidence showing a role of vaccines actually causing autism."
According to the leaked document posted online, the government's Division of Vaccine Injury Compensation concluded that five shots Hannah received in July 2000, when she was 19 months old, "significantly aggravated an underlying mitochondrial disorder" and resulted in a brain disorder "with features of autism spectrum disorder."
Sallie Bernard, executive director of the national autism advocacy group SafeMinds, called the case "unprecedented" in that a link between vaccines and autism is being made public. Federal health officials "have insisted there is no link at all between vaccines and vaccine components and autism. And apparently that is not true," she said.
The case also is significant because other autistic children have mitochondrial disorders, Bernard said. "The question is: What is the proportion?"
Robert Krakow, a New York attorney representing other autistic children in vaccine court, said the significance of the case is "potentially explosive." He said he has several clients with similar histories.
Hannah requires one-on-one care at all times, said her mother, Terry Poling, a nurse and lawyer. The Polings described how Hannah was a normal, verbal toddler until she received several vaccines during a well-baby visit. Within 48 hours of the shots, she developed a high fever and inconsolable crying and refused to walk. She stopped sleeping through the night. At 3 months of age, she began showing signs of autism, including spinning and staring at lights and fans. For a while, she lost her ability to speak.
When Hannah was 6 months old, as the family came to grips with the likelihood that she was autistic, they turned to leading experts in neurology. "I had to know. My daughter didn't just suddenly develop autism for no reason," Terry Poling said.
Hannah's father co-authored an article about her case, which was published in the Journal of Child Neurology in 2006.
Hannah, who has two older brothers, continues to have mild to moderate symptoms of autism. The family says early and ongoing intensive therapy has been critical for her.
"The biggest question right now for the public is: How unique is Hannah's case?" said Jon Poling. Poling said he suspects there are other children like Hannah.
Cliff Shoemaker, the Polings' attorney, said the family has filed a petition with the vaccine court to unseal all of Hannah's records and allow both the family and the government to fully discuss the case.
Despite this, a spokesman for the U.S. Department of Justice, which reprersents the government in court cases, would not grant interviews or explain to the AJC why it isn't releasing the records. HHS officials, who administer the vaccine compensation fund, also declined to be interviewed, citing the court's confidentiality requirements.
Shoemaker said the government's November concession in the case is public, but the government's reasons aren't. "I'm not aware of any other conceded autism cases," he said.
Congress created the National Vaccine Injury Compensation Program in 1988 after widespread lawsuits against manufacturers and health-care providers stemming from reports of side-effects of a version of the diphtheria-tetanus-pertussis vaccine used in the 1980s.
With companies getting out of the vaccine business for liability reasons, Congress established the program and a trust fund to serve as a no-fault alternative for resolving certain vaccine injury claims.
The average injury compensation to an individual in vaccine court has been about $1 million. In fiscal year 2007, more than $91 million was awarded to people harmed by vaccines.
MARCH 2008 is "Disability Awareness Month"
Thursday, March 6th, 7-9 PM--Central New York Chapter of the Autism Society of America (CNY ASA) meeting at Jowonio School Community Room, 3049 E. Genesee St., Syracuse. www.cnyasa.org
Saturday, March 8, 10:30-11:30 AM--FEAT OF CNY’s Autism Preschool Playgroup will meet at Trinity United Methodist Church, 8396 Morgan Rd., Clay, 13041. Admission is free! Join us in discovering the world of Autism. Autism is Beautiful, Capable and Lovable. For more information, contact www.featofcny.org or Darcy Smithers at 652-3826.
3/9-3/15
Sunday, March 9, 3-5 PM--Young Life CAPERNAUM will meet at Liverpool United Methodist Church. Come for fun, food, music, Bible lesson, and FRIENDS!!!! RSVP to 761-2929 (Darryl/Becca) or www.cusecapernaum.org. (New friends must complete Young Life information packet, preferrably prior to participation). Free event for age 14 and up!
Tuesday, March 11, 1-2:30 PM—CNY All-Inclusive Care for Children Coalition will be held at HOSPICE OF CENTRAL NEW YORK, 990 7th North Street, Liverpool. Agenda to include: A review of agency updates from attendees; Select '08 meeting dates/guest speakers; Case Review - bring your questions/concerns for peer discussion! Lunch will be served. For more information, please email Alicia Colangelo at alicia.colangelo@lifetimecare.org or call her at 315-477-9596.
Wednesday, March 12, 6 PM-- Familycapped will present "Nativigating the System" with Nick Cappoletti, Executive Director of Familycapped. Admission is free, held in the Familycapped offices @ Casey's Place, 228 Lafayette Road, Syracuse. RSVP: Carol Gentry 469-9931. 8 PM--Support group meeting with discussion of all topics welcome.
Wednesday, March 12, 6-8 PM--"Autism Spectrum Disorders and Mental Retardation" with Jud Staller, M.D. This is for Pediatricians and Primary Care Physicians and is part of the Child Psychiatry Community Consultation Education Program. Call Darlene Black to RSVP at 464-3265 or email blackd@upstate.edu.
Wednesday, March 12, 6:30 PM-- FEAT OF CNY AUTISM support meeting at North Area Family YMCA, 4775 Wetzel Road, Liverpool, 13090. Childcare is provided by YMCA staff (please RSVP to Mary Mollica at 451-2562). For more information, visit www.featofcny.org or call Darcy Smithers at 652-3826.
Thursday, March 13, 4:30-8:30 PM-- CNY Coalition For Young Children With Special Needs Pizza Series Workshop: "Differential Diagnosis: Dyspraxia and Developmental Coordination Disorder." Sookie Kayne, P.T., North Syracuse Early Education is NDT certified and is trained in the DIR approach, sensory integration, neuro-rehabilitation, cranial-sacral therapy, and developmental coordination disorder. $25, paid in advance, includes pizza & salad. Held at Jowonio 3049 East Genesee St., Syracuse (enter by rear parking lot). Call 445-4010. RSVP online http://www.cnypreschoolcoalition.org/wo
Friday, March 14, 5-9 PM-- Eastern Hills Bible Church, Manlius, is sponsoring "SIBSHOP," a program for kids 8-15 years of age, who have a brother or sister with special health or developmental needs. Pre-registration is required. Will also be held on the following Fridays: 4/4, 4/25, and 5/16. 682-5008
Saturday, March 15, 10 AM–12 NOON--"Autism is Beautiful, Capable and Lovable…" FEAT of CNY monthly KidsGroup for school-aged children is being held to at Trinity United Methodist Church, 8396 Morgan Rd, Clay, NY 13041. Admission is free! See www.featofcny.org or call Darcy Smithers at 652-3826.
Saturday, March 15 (TIME TO BE ANNOUNCED)--OSWEGO CINEMA has partnered with ARC of Oswego County to present a special showing of Dr. Seuss’ HORTON HEARS A WHO. This event is for children with special needs. Contact ARC of Oswego for more information at 598-3108.
Saturday, March 15, 12-4 PM-- Oswego County ARISE & Parents of Special Children will host "Sibshop" Oswego Armory on West 1st St. in Oswego. Free; limited spaces. RSVP to Lisa at 342-9347 x208, or PSC at 598-7672. Other dates are: May 17 and July 19. www.pscoswego.org.
3/16-3/22
Wednesday, March 19, 8:00 AM-- (Lecture starts @ 8:30 A.M.) until 3:45 P.M.--"Section 504 in New York: A Closer Look" will be held at Holiday Inn, Carrier Circle, East Syracuse, for those working in a K-12 setting. Section 504 coordinators, administrators, regular and special educators, counselors, psychologists, social workers, nurses, speech-language pathologists, occupational therapists and physical therapists will find this seminar invaluable and are strongly encouraged to attend. Each participant will receive written materials prepared by the speaker, Ed Sarzynski. Fee charged.
3/23-3/29
Tuesday, March 25, 6:30-8:30 PM--Self Determination Social Group, for individuals, families and support staff interested in the Self Determination process, will meet at Exceptional Family Resources, 1065 James Street, 1st Floor Conference Room. Amy Mesch will share information about College for Living, Passages, and New Visions. RSVP to: Dru Nordmark, Parent-to-Parent of NYS North Central Region Coordinator, at 478-1462, ext 322, or by email, at dnordmark@contactefr.org.
Wednesday, March 26, 12-2 PM--HOPE.network will host Richelle Mackey and Laura Little from ARISE who will discuss recreational programming. RSVP to Lory at 652-3160, especially if you need childcare. Held at Northside Baptist Church, 7965 Oswego Rd., Liverpool. Refreshments served.
March 27-29--5th International Conference on Positive Behavior Support at the Hyatt Regency O'Hare in Chicago. www.apbs.org/conference/chicago.
Saturday, March 29, 11 AM-12 PM--Families for Effective Autism Treatment of CNY (FEAT of CNY) invites you to a book signing with Jayne Lytel at Barnes & Noble on Erie Blvd. From Syracuse, author Jayne Lytel has written, Act Early Against Autism: Give Your Child a Fighting Chance from the Start. For more information, visit www.featofcny.org or call Darcy Smithers at 652-3826.
