This raving mother from hell? You bet!

Autistic Hoya: Tired

2012-01-12T10:27:00.000-05:00

Autistic Hoya: Tired: Trigger warning: This is mostly about ableism and a response to other, very triggering things, as well as including lots of direct quotes of...

Emergency Care Centers - Keeping our pets healthy and safe or abusing our furry loved ones?

2012-01-01T19:21:00.004-05:00

After experiencing a rather horrible day at a regional emergency care veterinarian's office, I've been thinking about how our pets have no guaranteed quality emergency care options. While most local veterinarians are good doctors, they are not usually available for after hours or holiday care. And when the vets are closed, we have to turn to urgent care centers that seem to have little in mind, other than charging triple and even quadruple fees.

Why aren't there better options for our beloved pets? No pet owner should ever have to make their pet suffer and die painfully because they can't afford the entire cost of treatment that day. These centers will make no payment arrangements - such as a percentage now, a percentage later. Nor will they consider knocking off a few dollars to save a pets life. They will point you to a credit company who, if approved, charges to the tune of 30% interest. But a lot of people in this economy, don't get approved.

Physician's take the Hippocratic oath. Hospitals generally guarantee emergency care treatment even to those who can pay nothing. But when it comes to our pets, it seems Veterinarian's have no responsibility. We are given no options - pay upfront in cash or watch your furry family member die in agony. And when you cannot pay 100% of the bill, they tell you that there is nothing they can or will do for your pet. It seems to me this is a form of extortion bordering animal abuse.

Today's animal advocacy organizations (such as spay and neuter and adoption agencies) should also work towards better and more cost-effective urgent care for our pets. While it's understood medicine costs money, there is very little reason these centers cannot work payment arrangements for a pet who without care, will die. But they won't. And those pet owners must walk away with their suffering pet in hand and watch them die in a cruel and heartless way.

That is just so wrong.

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anecdote: Our cat Morris had a urinary obstruction - which is fatal within 12-24 hours. We were told that it would cost nearly $2000 for treatment, payable immediately less than one week after Christmas. When I tried to explain we didn't have that much cash on hand, I was told "You need to pay for the procedure or he will die a painful and horrible death." They refused to work out any payment arrangements. They told me I had to "decide" what I wanted to do. But there were no choices given as we simply didn't have that kind of money available. In the end, they agreed to do an outpatient treatment for nearly $500. But they were very sure to tell me multiple times that this would probably not save his life. He is still kicking today. I'm hopeful he will recover albeit touch and go. But I will never ever forget the horrible way I and my beloved, Morris, were treated that day.

1-2-2012 Update - Morris is doing pretty well today. Going to his regular vet for some REAL care at 3:15 EST. Will keep you posted.

Merry CHRISTmas! If Jesus was born today, in the United States. A speculation.

2011-12-21T12:21:00.000-05:00

If the Christmas story happened today, in the United States...

Conservatives would demonize the girl for her loose values and would not expect Joseph to stick around for someone else's kid. They would pressure Mary to consider adoptive options because an unmarried teen mother is surely unfit to raise a child.

Mary would be considered a teen mom and might be offered a slot on the MTV reality show. She would be turned down, however, once she told the story of the immaculate conception - can you say CRAZY? After this, she decides not to talk about the Father.

Jesus would be born in a hospital where no one but immediate family and close friends could visit. Because her family is shamed, she is alone.

As a single mother, Mary would live in a poverty stricken area. Mary would take a minimum wage job working as many hours as she could to make ends meet.

Due to lack of access to nutritional foods, Jesus would become an obese and sickly child. Because he is an ethnic child, he is discriminated against and bullied in school, often being labeled a "Middle Eastern Terrorist."

Jesus would not be taught a trade. Instead, he would take a night job working at the local 7-11 while attending high school during the day. His academic grades would suffer and eventually he would drop out by age 16.

The rest of the story is pretty much what one expects of a child raised in poverty who does not complete his education.

We should all stop and think before we pass judgement on those less fortunate, especially during the Christmas Season.

I'd Like to Forget

2011-09-11T10:11:00.001-04:00

I write this because it's September 11th, now some sort of weird celebratory memorial of something horrendous that happened 10 years ago. I "do" remember it vividly - I was mildly traumatized by the events having been a new Mom with a kiddo at daycare and seeing jets fly over my house in Western PA like Armageddon had begun. To this day, I believe I witnessed Flight 93 flying over our home then in Sharon, PA. It truly was a horrific for people everywhere - our illusion of security was brought to the ground - literally.

But what is more memorable to me is the events that followed. When we watched the Presidential addresses that would follow, it became clear the attacks were being used [abused] as a smokescreen to wage war. This sticks out in my mind more vividly than anything else that happened. Rather than secure our borders and make our nation safe, we would wage more pain and suffering on what was now "the enemy" (defined as anyone who didn't support our war mongering). But in effort to suppress our insecurity, the president would create a puppet cabinet from which the director, Tom Ridge, would eventually resign when the incumbent asked him to raise the nation's terror alert right before the elections, presumably to help secure a second presidential term. The Department of Homeland Security became laughable as our "Terror Threat" remained "yellow" with no real measure of reason.

When Iraq was formally brought up as a source of Al Qaeda, it became crystal clear that our nation's leadership was no longer concerned with "we the people."

Today, thousands more have died and are still are dying. This to me, is what we should never forget. One day's tragedy has turned into a lifetime of suffering and loss for people all over the world. I will never forget September 11 because today, the horror of its aftermath still continues.

From Cafe Press - Autism Awareness month update

2011-04-09T08:10:00.001-04:00

Autism Awareness month update: "Over the past 24 hours we’ve received messages from the community expressing concern for our decision to donate a percent of proceeds from Autism related products to Autism Speaks. The response we’ve received takes us a bit by surprise, as this is our third year partnering with Autism Speaks and the first year we’ve heard [...]"

How to Profit from Your Enemies - by Autism$peaks

2011-04-06T18:00:00.007-04:00

NOTE: 4-8-2011 Update Follows at End of Article- Cafe Press' Response

During my morning Facebook check in routine, I stumbled on a post by a fellow advocate, Paula C. Durbin-Westby. The post stated simply,

If you have a Cafe Press site and have the word "autism" in your product name or line of products, 10% of the final sales purchase will be donated to Autism Speaks. If you don't like your site being used in that way you can contact Cafe Press.

For those unfamiliar, Cafe Press is reseller of personal logo-wear and accessories. Every day "joe's" can upload their logo and have their own store front. Cafe Press keeps the profits, but stores are encouraged to mark up prices as to make a small profit on everything they sell. As a member of non-profit who hosts a logo shop at Cafe Press, I was a bit curious as to how this Autism Speaks campaign could possibly work. I went to their blog where they give the details http://blog.cafepress.com/2011/04/05/a-voice-for-autism

Here you find the details of the promotion.

* An amount equal to 10% of the final purchase price for all products tagged with “autism” and sold through CafePress.com Marketplace during April 1, 2011 through April 30, 2011 will be donated to Autism Speaks

Key in the promotional guideline is this - for all products tagged with “autism." Store owners use tags to help market their products. For instance, if you search for autism at the site, Cafe Press will return results with this tag. I probably do not need to tell you that anyone can use any tag whether its to help or hurt a cause.

Perhaps Cafe Press is unaware of the millions of dollars Autism Speaks rapes from the people in the name of helping those with Autism. Thing is, they are a grassroots organization in name only. They do not "give back" to the communities who fund them. They profit and divvy that profit up among their high paid executives. In 2009, Autism Speaks paid out more to their internal employees than all that they spent on research and advocacy. Their IRS 990 form is here. I'm no mathematician but thankfully others are better. Here's a nice breakdown of how Autism Speaks spent their money from a fellow blogger:

http://www.bothhandsandaflashlight.com/2009/08/14/autism-speaks-salaries-gone-wild/

That's just the tip of the iceberg, really considering they have now surpassed popularity of other Autism organizations who preceded them. I can only imagine what 2010's 990 will look like.

But lets look at a bigger problem. Autism Speaks does NOT support self advocacy. Autism Speaks has gone as far as to sue a 14 year old Autistic teen over a blog that denounced them. That story can be found here:

http://autisticbfh.blogspot.com/2008/01/autism-speaks-silences-autistic-child.html

The gist is that a teen made a parody site called NT Speaks that denounced intolerance. And though she did not use Autism Speaks logos, she designed the site to be similar in look and feel. And though this is not considered a copyright infringement according to law (parody sites are exempt), their high-powered attorney used intimidation and threats and made her destroy the source code for the web site.

There's more. Over the years, Autistics have been trying to sit on Autism Speaks board of directors. They will NOT allow someone with Autism to infiltrate the organization. That says it all to me. Autism Speaks who has been notoriously vocal against the very people it supposedly supports, has found a way to profit from them.

So, if you shop at a store that promotes Neurodiversity you are inadvertently donating to Autism Speaks. If as a store owner you have tagged any of your items with "autism," they are getting 10% of the sale.

I posted a rather to the point comment on their blog that has been awaiting moderation for roughly four hours and counting. I'm not the only one. Others have posted comments that are either being ignored or sat on until the smoke clears. [update: Cafe Press did not approve my comment as of 4-7-2011, it's no longer pending or there. No one else's comments exist either].

Perhaps Cafe Press is now scrambling to undo the mess. Or perhaps they have a vested interest in Autism Speaks. But I for one, am considering cutting business ties with them. No matter how or why they chose this campaign, it was in bad form to presume that their clients would happily contribute to an organization.

4-8-2011 Update
I received this response from Cafe Press regarding the issue:

Thank you for your blog comment; we appreciate you taking the time to share your thoughts on our Autism Awareness program. Over the past 24 hours we’ve received many other messages expressing concern for our decision to donate a percent of proceeds to Autism Speaks.

The response we’ve received takes us a bit by surprise, as this is our third year partnering with Autism Speaks and the first year we’ve heard concerns voiced about specific organizations or their approaches. That said, as a community-based business we feel it is important to listen and respond to our users’ concerns. You helped us to understand an adjustment to this program is needed. We have learned a lot about Autism in the process and feel privileged to be a part of the national conversation about supports for individuals and families facing the challenge of Autism.

For this year we’ve already made a commitment to Autism Speaks, and we do not want to go back on our promise to them, but we do want to add another charitable organization to split the money donated and balance our support to other Autism related good works. We’re asking our community to choose the specific Autism support charity that will receive ½ of the money raised through sales of Autism related goods.

If you’re interested in voting on this additional charitable initiative, or want to suggest one not on our list, please visit http://www.surveymonkey.com/s/X8QNK3N.

While we know this may not answer or solve all of your concerns, we hope it helps to show our commitment to the community and to a dialogue about Autism support. Please know that we have nothing but the best intentions with our Autism Awareness donation plan and we hope you find our changes to the program palatable.

Best,
CafePress

Avoiding Scams, Haters and Bullies on Facebook

2011-03-20T11:55:00.001-04:00

A recent "war" on a common Facebook group prompted me to write my own PSA (public service announcement) based on my findings and experience. About five years ago, I was approached by a scam artist who claimed to be a powerful lobbyist and the father of an Autistic child. My contact happened due to a Yahoo group. That was just the beginning of much more to come.

Once Facebook came to be the popular media it is now, this scammer appeared under so many different fake profiles, I lost count. Today, he still continues this crime while preying on desperate families and their wallets.

There are at least a couple of "real" parents of Autistic children who on their real profiles, advocate. Yet, they too, have fake profiles where they stalk, bully and badmouth others. Why? I can only speculate - mental health issues themselves, anger at life in general? Who knows.

There's another trend on Facebook. People with odd fetishes can be found faking their identity in order to find individuals who will play into their hands (aka fetish fantasies). Often these folks disguise themselves as being disabled or a big fan of something in order to infiltrate a group. They attempt to engage others in odd fantasy. Often, these folks appear to have personality disorders and like to stir up controversy. They choose very hardened sides and claim to be victims of the other side. This method works wonders at getting people to interact with them (I'm so sorry so-and-so is treating you this way. I'll be your friend!). The victim thinks this person is really hurt and tries to help. What the victim doesn't know is that he/she is playing right into the hands of a scam or fantasy seeking individual.

Then of course there are the real people, with real anger who thrive on controversy. These people spew hate speech and blame others for their own plight. They often libelously label real people. They slant truths and propagate lies. These are severely unhappy people.

Others are what I refer to as "the collective." They are desperate to find answers, seek understanding and are easily sold snake oil. They throw away their past values and thinking and exchange it for the ideals of the group. The more the group discusses issues, a phenomenon called Groupthink happens. Groupthink is defined as a mode of thinking that occurs when the desire for harmony overrides a realistic appraisal of the situation. This phenomenon is fed by overconfidence of group members, conformity, self-justification and polarization. When a member of the group questions the ideals of the group, they are usually ostracized from the group or punished in some social manner. To explain the toxic behavior of the previous innocent member, psychology also notes "the foot in the door phenomenon." This is the tendency for people who have first agreed to small requests (i.e. do not associate with group x any longer) soon will comply with larger requests (i.e. badmouth group x members publicly). This phenomenon explains how seemingly typical parents can often become venomous when the ideals of their group (collective) are challenged.

What can you do to protect yourself from the above?

Fake Profiles

Be wary that fakes are out there. Do not blindly accept friend requests on Facebook. Do a little research first. You can often see the Facebook Walls of scammers - they rarely lock down their fake profiles. What's on their wall? Most real persons will have conversations about more topics than just one. We often comment on the weather, the week we had, something exciting in our lives. We often have friends and family commenting on mutual subjects. What we do not have is narrowly focused posts on one topic.

Fakes often have a lot of friends making them seem legitimate. Even some mutual friends. Do not be fooled. These people put a lot of time into creating fake families with real photos. They often accumulate friends by playing Facebook games and of course, asking for friendships to anyone and everyone with a common interest (Autism, for example). When in doubt, do not "friend" someone. Better safe than sorry.

Once you find a fake - block them! Do not engage them. They are for sure, looking for any interaction, positive or negative. Remember, any public feedback whether negative or positive makes them appear so much more real.

Haters

Click - Account - Privacy Settings - Edit Block List. Add them. Enough said. You will not, cannot and certainly should not try to convert these people.

The Borg (aka Collective)

Just steer clear. There is little you can do here as well. They have found an "accepting" group who has promised to love them as long as they fulfill the group's mission. If they become toxic, do not respond. Block them if necessary. Do not friend them or remove them if they are already on your friends list.

Conclusion

There are multitudes of scams, fakes and haters on Facebook. Responding to any of them, in any manner only helps their agenda. We can effectively stop Facebook bullying by ignoring it. Though they may be spewing misinformation, engaging them will only help them further their mission. Fight misinformation with real information. But do so in a way that does not engage the person who misinformed.

My mother always said "kill them with kindness." I say, "kill them with apathy."

Save the Inhabitants of Planet Earth

2011-03-13T12:53:00.002-04:00

The year 2012 has all sorts of mystery surrounding it. Though it has apparently become "much ado about nothing" as far as scholars are concerned, the public has held fast to theories from Biblical end of days to a visitation by our alien ancestors. And really, who could blame us for anticipating a change of such grandeur? The world is a mess. So here is my proposal to change the outcome of 2012. Let's quickly fix the mess we're in and stop the end of the world or an alien revolution. We obviously can't fix everything alone. But if each one of us takes on once small piece of responsibility, things will change.

This is my list of things (in no particular order) that I feel must change in order for us to coexist on this planet for longer than the impending nine months.

Treat People Like You Want to Be Treated

Sound familiar? It should. And no, the left-wing liberals did not create this saying. Though it is usually associated with he Christian Bible's Book of Matthew, it has been around much longer. The history on this way of thinking goes back to ancient Babylon. Here's the Wiki on it for you diehard historians. Bottom line is, if we all stopped to think for just one moment about treating each other decently, 99% of our world problems would cease to exist. Stop comparing your life and choices to others'. Everyone's situation is different. Period. Stop looking at others as lazy or defunct just because they are different. Just stop. Focus on your own problems and deal with them.

Reality Television

These televisions shows glorify stupidity, human suffering, exploit children and cause our brains to shrink. These shows desensitize us to human suffering and make exploitation exciting. Some exploit the mentally ill. Others value people as no more than a casual prize. Criminally negligent parents parade their three years old's in makeup and bathing suits to win pageants. "Can you say pedophile, Virginia?" And by all means, stop following Charlie Sheen! The man needs mental health help. It's sad, I know. I'm not talking about documentaries, talent competitions and adventure or educational shows. I'm talking about the shows that exploit people. The ones who follow housewives, bachelors and tiara wearing toddlers. These shows vote people out in some sort of sick human competition or worse, simply follow dysfunction around to entertain us. Stop watching these shows. They are hard to resist. For some reason, watching others suffer in unrealistic existences can often help us forget our own problems. But there are other ways to find entertainment. Ah, but you say "that's all that is on TV now!" There's a catch. If we stop watching, the networks will stop airing. There's no rocket science involved. Read a book, rent a movie, or heck..play a board game with the family. Not so hard.

The News Media

Everything we see is tainted. It tainted with opinion, speculation and formatted by whomever pays the media the most. Stop believing everything you hear. Think rationally. Think for yourself. Instead, read the newspapers and journals. Compare slants on stories and formulate your OWN opinion instead of taking on someone's perspective. Yeah, it takes more time. But if you are living in a virtual reality, what's the point of living?

Stop Worshiping Money

There's just not a whole lot more I can say about this. Money is a necessity in life to a point. But we've lost sight of the real meaning of life. We don't "need" HD televisions, digital TV, smart-phones, movie rental subscriptions, or luxury cars. We do need food, water, shelter, oxygen and sunlight. Choose your needs over your wants.

To sum it all up, I'm hoping humankind can redeem itself. I'm hoping that by 2012, we'll have seen the light somehow. If not, then bring on the aliens. I'm ready for some earthly enlightenment.

Overcoming the Stigma of Vaccination

2011-02-12T19:30:00.001-05:00

Public health organizations are doing a poor job of advocating for vaccination. Conversely, anti-vaccination groups are successfully spreading misinformation and discouraging vaccination. In Michael Willrich's New York Times editorial, Why Parents Fear the Needle, he argues that health organizations are doing little to counter misinformation and reassure the public about safety.^¹ It is possible that his argument is valid. Though a 2009 study showed immunization of U.S. infants remained at about ninety percent^², in 2010, forty percent of U.S. families postponed or declined vaccines for their children.^³ Fear is usually the driving force behind refusal to vaccinate and is mostly caused by ignorance. Lack of clear and accessible information about the real risks of vaccines increases suspicion and makes the public susceptible to deceitful practices. The absence of good information appears to cause families to depend on more readily available nonsense.

As Willrich points out, vaccines have always been a subject of public scrutiny. The smallpox vaccine, developed in the late 1800s, began a surge of fearful and angry anti-vaccination groups. The concept of injecting a living disease into a healthy person seemed a foolish way to fend off illness. Anger was largely due to government health organizations forcing vaccination on the public without assuring public safety.^⁴ These organizations did not tell the public about benefits and risks, yet forced them to submit to vaccination. Adding to public fear, a handful of citizens contracted tetanus after receiving the diphtheria vaccine in 1901. This caused a nationwide panic and a halt to vaccination for some time. Later, it was found the infections were due to an exposure to tetanus at the injection wound site.^⁵ Though found unrelated to the actual vaccine ingredients, the outbreak added to the public's already damaged perception of vaccines.

Willrich fails to mention two important issues affecting today's vaccination rates. Complacency and boundless exposure to media opinion have contributed to the anti-vaccination movement. Most citizens no longer fear contracting deadly epidemics such as polio. Numerous serious diseases have ceased to exist thanks to vaccination. Immunity, however, has caused the public to become over-confident and forget.^⁶ Complacency and media exposure create a perfect mix for conspiracy theorists. Many believe there is a conspiracy to poison citizens in the name of profit. Despite this seemingly new trend, however, celebrities and media have long been a source of anti-vaccination rhetoric. In the 1900s, George Bernard Shaw publicly declared vaccines a "filthy piece of witchcraft." ^⁷ After the premier of the smallpox vaccine, political satirist, James Gillray, published a cartoon depicting vaccinated people morphing into cow-like creatures.^⁸ In more recent times, actress and former Playboy model, Jenny McCarthy faulted childhood vaccinations as the cause of her child's Autism. McCarthy co-authored a book on the matter, entitled Healing and Preventing Autism.^⁹ Though not completely new, misinformed celebrities and complacency have endorsed the anti-vaccination mentality.

Another aspect, Willrich seems to omit, is the power of the anti-vaccination groups. Such groups continue to perpetuate fear using arguments very similar to those of the 19th century's groups.^¹⁰ Today, however, these groups are highly visible thanks to the Internet. The multitude of deception on the Internet has increased public suspicion. Deceivingly harmless advocacy organizations, such as Age of Autism and the National Autism Society, have an expansive presence on the World Wide Web. These anti-vaccination groups thrive on misinformation and label scientific study, that does not support their mission, as tainted. Groups sometimes accuse families who vaccinate of being part of a large conspiracy. Groups such as these appear to prey on desperation, confusion and ignorance. In some cases, groups use deceit and fear for profit. Corrupt groups often promote alternative and sometimes dangerous treatments with hefty price tags. In most cases, treatments are not medically approved and hence, not covered by health insurance. Families frequently shell out thousands of dollars in a month to receive questionable treatments, unproven herbal drugs, and other alternative medicine. These families are led to believe they are healing vaccine injury.^¹¹

Misinformed and corrupted science also adds to current fears. Fueling the fire for the anti-vaccination movement, in 1998 British researcher, Andrew Wakefield claimed to have found a clear link to the MMR (measles, mumps and rubella) vaccine and Autism. Though countless scientific studies around the globe could find no correlation, Wakefield declared to have proof. Since no other researcher could duplicate his results, Wakefield's study was highly scrutinized. It was this intense examination that uncovered a falsified report. Soon after, Mr. Wakefield's motives became apparent. He had been working on developing his own variety of the MMR vaccine. Add to this, he hand-picked his test subjects using anti-vaccination groups who not only financed the study, but had planned grandiose litigation once the study was complete.^¹² Despite the very public exposure of Wakefield's crime, one in five parents still believes that vaccines cause Autism.^¹³ His crime left a legacy of misinformation and helped increase the public's fear of vaccines.

It is clear that a good deal of information exists to help us understand the reason for public fear of vaccines. On the other hand, as Willrich notes, reputable and clear scientific information on vaccination risks and benefits is not as available. In the recent past, the heath organizations have mostly remained silent and relied on health care providers, such as pediatricians, to persuade their patients and families to vaccinate. While on the surface this appears a reasonable approach, a recent survey showed that though eighty-seven percent of doctors said they talked about vaccination with all their patients, forty-seven percent of patients claimed their doctor never mentioned vaccines.^¹⁴ This leads us to wonder how confident even the doctors are in recommending vaccination to their patients. It is obvious, the health organizations need to take a firm step toward better education for all the public, including health care providers.

The health organizations need to use an accessible approach to teach the public about vaccine safety. Willrich affirms that they must use the power of the Internet. And though the health organizations may argue that they do, the current information on the World Wide Web is mostly incomprehensible to the average citizen. At the Center for Disease Control and World Health Organization websites, documentation reads much like a sophisticated medical journal. In order to foster a better understanding, the health organizations must use language that clearly and effectively gives citizens a chance to comprehend the benefits and risks of vaccination. These organizations must find ways to make information accessible for all walks of life. Until the health organizations prepare and widely distribute information that is accessible, the conspiracy theorists and anti-vaccination groups will continue to grow.

Health organizations have begun fighting misinformation with more rhetoric as another ineffective way to promote vaccination. Willrich says it very clearly. "Why waste another breath vilifying the anti-vaccination minority when steps can be taken to expand the pro-vaccine majority?"^¹⁵ Indeed it appears, that rather than ignoring the misguided messages of the anti-vaccination movement, the health organizations seem bent on fighting fire with fire. Opinion pieces do little to make the public feel safer. Better the health organizations should promote scientifically proven risks and benefits of vaccination. Another problem with this method is, by acknowledging the misinformation, they are also lending some validity to the argument. As Shakespeare's Queen said, "The lady doth protest too much, methinks."^¹⁶

Michael Willrich sums up the argument, nicely. "Until officials realize that, and learn how to counter such deep-seated concerns, the paranoia - and the public-health risk it poses - will remain."^¹⁷ Lack of accessible information, complacency due to eradication of many deadly diseases and public suspicion will continue to keep some from vaccinating. Until the world health organizations change their methods to an educational approach, ignorance and misinformation will continue to reign.

1Michael Willrich, "Why Parents Fear the Needle," New York Times, January 21, 2011. http://www.nytimes.com/2011/01/21/opinion/21willrich.html.

2"CDC Survey Finds Childhood Immunization Rates Remain High," U.S. Department of Health and Human Services, September 16, 2010, http://www.cdc.gov/media/pressrel/2010/r100916.htm.

3Michael Willrich, "Why Parents Fear the Needle," New York Times, January 21, 2011. http://www.nytimes.com/2011/01/21/opinion/21willrich.html.

4"Smallpox: Resistance to Vaccination," U.S. National Library of Medicine, October 2002, www.nlm.nih.gov/exhibition/smallpox/sp_resistance.html.

5Joseph Mcfarland, M.D., "Tetanus and Vaccination.1- An Analytical Study of Ninety-Five Cases of this Rare Complication," J Med Res. 7(4), (1902): 474–493.

6Senier, L. , "Risk Balanced by Trust: Parental Perception of Vaccine Risks", 2005-08-12, http://www.allacademic.com/meta/p22083_index.html.

7"Smallpox: Resistance to Vaccination," U.S. National Library of Medicine, October 2002, www.nlm.nih.gov/exhibition/smallpox/sp_resistance.html.

8Ibid.

9Jeffrey Kluger , "Jenny McCarthy on Autism and Vaccines," Time Magazine, Apr. 01, 2009, http://www.time.com/time/health/article/0,8599,1888718,00.html.

10Robert M Wolfe, "Anti-vaccinationists past and present," BMJ., 325(7361), (2002): 430–432.

11Blue Cross and Blue Shield Association, "On shaky ground with alternative treatments to autism," http://www.bcbs.com/news/wellness/on-shaky-ground-with-alternative-treatments-to-autism.html.

12Brian Deer, "How the case against the MMR vaccine was fixed," BMJ , (2011): 342:c5347.

13Michael Willrich, "Why Parents Fear the Needle," New York Times, January 21, 2011. http://www.nytimes.com/2011/01/21/opinion/21willrich.html.

14Steven Reinberg, "CDC Report Finds Adult Vaccination Rates Still Lagging," HealthDay , November 17, 2010, http://health.msn.com/health-topics/articlepage.aspx?cp-documentid=100266932.

15Michael Willrich, "Why Parents Fear the Needle," New York Times, January 21, 2011. http://www.nytimes.com/2011/01/21/opinion/21willrich.html
.

16Macrone, Michael. "The lady doth protest too much." Brush Up Your Shakespeare. Cader Company, 1990. eNotes.com. 2007. 12 Feb, 2011 http://www.enotes.com/shakespeare-quotes/lady-doth-protest-too-much-methinks.

17Michael Willrich, "Why Parents Fear the Needle," New York Times, January 21, 2011. http://www.nytimes.com/2011/01/21/opinion/21willrich.html.

Adventures in Psychology 100 and Human Development 129

2011-01-21T21:37:00.000-05:00

So, because this inferno infused mother didn't have enough on her plate [insert sarcasm], she decided to go back to school this month. And of course, because I live in a house of psycho-babble, it was a natural choice to select Psychology as my focus.

What I've found in just a couple weeks of study is pretty interesting. First of all, we can pretty much write off all those surveys and correlation studies we see everyday. Correlation does not equal causation. What a simple concept that is so completely ignored by modern media. You might find it reassuring knowing that our children's TV viewing habits likely did not "cause" ADHD and divorce probably does not cause our children to commit suicide. Correlation does not equal causation!

As far as surveys are concerned, it is clear that wording can lead the participant to select a premeditated answer. For instance, a question such as "Did your child experience any Autistic symptoms after receiving the MMR vaccine?" could lead a lot of parents to answer "yes" despite showing any correlation. The question didn't ask if parents noticed those Autistic symptoms before the MMR vaccine and doesn't note how long after they noticed. The end result might show 100% of parents noticed their child was Autistic after the MMR vaccine. Yet, perhaps 95% noticed symptoms before or only years later. Surveys are easily manipulated using wording strategies.

So, I'm thinking that 5th dentist may have really been onto something. I mean 4 out of 5 chose Trident for their patients who chew gum. But what about those who don't chew gum? And what was the other choice? Ju-Ju Fruits? Sugar Cubes? Broccoli? I can only imagine that dentist #5 may have thought that chewing gum with saccharine(as it was back then) was worse for your body than the other choices. Who knows?

But more intriguing to me is how infantile the study of human development and psychology is. Psychological theories are changing every few years. Even more fascinating, is how some of the antiquated theories are still in practice today.

Behaviorism and Psychoanalytic theories are old school. We now know that a persons personality has multidimensional influences such as biological, cognitive, social, and cultural. But today we still see behaviorism in practice in Applied Behavioral Analysis (ABA). While behaviorism does gives us some insight to purposeful behavior, it nowhere comes close to understanding the cognitive, environmental, social and cultural aspects of behavior. Nor does it take into account actual neurobiological differences in cognition. For this reason, it's no longer a current theory. But it still being used on Autistic's everyday.

Psychoanalytic is mostly associated with Freud. You know, "Tell me about your mother". But even more so, it's about looking backward to figure out the beginning. Freud's theory was based on Adults he studied. Yet the theory was that these adults were "ruined" by their parents during infancy and preschool years just by how the parents reacted to the young child's sexuality. Yeah, you read that right. Infantile sexuality. Moving on.

Yet today, we do hear some claim Autism is a form of an attachment disorder - Mom didn't hold the baby enough, Dad wasn't responsive to baby's needs...blah blah blah. While attachment disorders do exist and some symptoms overlap, most people with Autism do not have this disorder. Attachment disorders are primarily found in children who were orphaned during infancy. Most children who are adopted at birth, attach to the adopted parent.

So why are we so backward? Why is science moving forward, yet the common implementation is years, sometimes decades behind? I can only speculate that "old habits die hard." I, for one, plan to use my newfound knowledge of what is considered scientifically useful, for good.

Special Education Services in U.S. Public Schools, Part 1

2010-11-16T14:09:00.000-05:00

United States public schools are those which are funded by the federal government, the state and often your local taxes. These schools are all held to the Federal Legislation called IDEA or the Individuals with Disabilities Education Act. In addition to IDEA, public schools are also held to Section 504 of the Rehabilitation Act of 1973. This Act was established to ensure that individuals with disabilities cannot be discriminated against in the United States.

What this really means
All children with known or suspected disabilities qualify for special education testing in United States Public schools. This qualification stands regardless of a students grades or academic achievement. Furthermore, IDEA also includes a component called “Child Find” which requires states to identify, locate, and evaluate all children with disabilities, aged birth to 21, who are in need of early intervention or special education services. This means that schools “should” be requesting parental permission to do testing without prompting. However, many times, this is not the case.

Special Education Services Verses Special Education Classrooms/Schools
Special education is not defined as a special classroom or school. In fact, the law states that school districts are required to educate students with disabilities in regular classrooms with their nondisabled peers, in the school they would attend if not disabled, to the maximum extent appropriate. What this means is, the district must provide necessary supports, accommodations and supplemental aides and services to make this happen. The only exception to this rule is if after using all the above accommodations and supports, the student would not benefit educationally, other settings can be entertained. However, it is always up to the IEP team, which includes the parents of the student to determine placement. This is not a unilateral school district decision.

My Child Has a Disability. Now What?
Schools are required to perform multi-disciplinary educational testing upon request from a parent or legal guardian of a child with a disability. However, while some schools may acknowledge a verbal request, it is recommended that the parent or legal guardian place this request in writing.

What's a Multi-Disciplinary Educational Evaluation?
Multi-Disciplinary is defined as: composed of or combining several usually separate branches of learning or fields of expertise

What this means specifically to each child is different. For an example, a student with a cognitive, neurological or developmental disability might require testing in the following disciplines: Speech and Language, Social and Emotional Reciprocity, Fine and Gross Motor skills, Academic Achievement (Reading and Analytical skills), Intelligence Quotient Testing, etc. Each student might have specific weaknesses and/or strengths that need measured. Parents should also be given an opportunity to add data to the report, either from outside evaluations or standard checklists provided by the school.

Regardless, it is wise to have all children with known disabilities tested for special education services in order to determine if there are unmet needs to address with specially designed instruction.

According to law, testing must be completed within 60 days. Unless otherwise specified, this is generally calendar days and not school days. Check with your state for more information on interpretation.

Once the evaluation process is complete, a report should be available to review prior to any meetings with the school. In the report will be scores for standardized testing and observational data by qualified evaluators. The final summary of the report might indicate a recommended placement or may indicate that there is no need for specially designed instruction. Either way, a meeting is held to discuss the findings.

The Post Evaluation Meeting
At the meeting the report will be discussed by those who participated in the process. This includes the parents. At the meeting the entire team decides whether or not special education services are appropriate, what type of services if any, and where those services will take place. If the team is in agreement that special education services are appropriate, the Individualized Education Program (IEP) will be written as a team. If the team decides special education services are not appropriate, the team should then consider creating a 504 Plan which allows for modifications and accommodations for the student. It does not, however, allow for specially designed instruction.

What is Specially Designed Instruction (SDI)
1“Specially designed instruction means adapting, as appropriate to the needs of an eligible child under this part, the content, methodology, or delivery of instruction to address the unique needs of the child that result from the child's disability; and to ensure access of the child to the general curriculum, so that he or she can meet the educational standards within the jurisdiction of the public agency that apply to all children.”

In other words, SDI means adapting anything and everything necessary so that the child can be a successful student. This can include, but is not limited to the following:

Social Skills Instruction
Cognitive Behavioral Therapy
Physical Therapy
Speech and Language Therapy
Specialized Math and Reading programs
Occupational Therapy

In addition to SDI, the IEP allows for unlimited accommodations for the student such as:

Extended time for tests
No timed tests
Fewer problems/questions on a test
Minimized distractions in the classroom
Assistive Technology such as word processing, speech to text, calculators, communication systems, etc.
Preferential seating in classrooms
Minimize or eliminate homework
Daily visual schedules

The list can go on and on. There is nothing that cannot be “considered” by the IEP team. While the team may not agree on all suggestions, the team must “consider” any suggestions brought forth.

1 IDEA 2004 Regulations §300.39 A

Published with Permission from DANMC

Toxic Midnight Bloggers Who Spew Hate

2010-10-16T19:00:00.001-04:00

One of the most fabulous things about the USA is our freedom of speech. I love that I can come here and write whatever is on my mind. Unfortunately, this can also stir up a lot of controversy. If opinions differ, it indeed can be difficult. Tempers and nostrils may flare. However, the intelligent reader knows they can simply look away, stop reading or chose not to visit my blog at all.

But what about those “burning the midnight oil” toxic bloggers who constantly scour the Web looking for a “story?” These toxic bloggers distort and manipulate truth in order to have something to talk about. In the process, toxic bloggers defame and slander those who veer anywhere near their path.

Toxic bloggers pick targets, most often innocent victims, and spin webs of deception and deceit. They handpick victims who have differing opinions than themselves over politics and social issues. Much like the Tabloids who distort half truths in order to make juicier gossip about celebrities, the toxic blogger continually posts falsehoods and colorful lies. However, once in a while the toxic blogger finds a golden nugget - a real story. And when they do, look out! The toxic blogger takes that nugget of truth, polishes it up into a juicy tabloid and dangles every past victim from it. It is as if all past prevarications are somehow connected to the real story - six degrees of separation, and then some!

Behavior analysts have learned through intensive research that unfavorable behavior is the end result of unmet needs. So what are the toxic bloggers needs? What does this toxic blogger get from spewing such hatred? It is something in which we can only speculate.

For example, the blogger-parent of a differently-abled child can feel empty when the parent has been unable to adjust to the child's differences. Because modern society has not evolved to fully accept or tolerate differences, it can be very difficult for the parents. When life hands you a different card than what your compadrés hold, life can be distressing. Add to this hardship a lacking support system and parents can often feel isolated and bitter.

We can speculate that the venom builds over time and then just bursts into a siege on those who seem to be handling it all in stride. Perhaps we can only see darkness while turning a blind eye to the light from within. Or maybe the toxic blogger is just evil. I'd like to hope that no one is beyond salvation.

One thing is for sure. The toxic blogger has freedom of speech and we have the choice to ignore them.

It's One AM in New York and Midnight in Chicago

2010-10-12T21:13:00.008-04:00

Which brings up a great question. What does this have to do with the price of tea in China? Or more importantly, what's this got to do with an advocacy blog?

Your guess is as good as mine. In fact, advocacy is far from the word that comes to mind. It does present a dilemma though. Who are the real advocates and who are those who would pose as such to take your hard earned money? And how can you tell the difference?

My personal tips are these:

If an organization refuses to share their Federal or State Tax Identification, you can bet they are not legitimate.
If an organization is selling something and not divulging exactly how the profits are spent, back away slowly.
Check with a local trustworthy organization if in doubt (Better Business Bureau, etc.)

And speaking of scams...

Notorious scam artist Michael E. Robinson, Sr. (aka Mike Robinson, Michael Robinson, Jr) is on the move again. While he's buried his tracks from his past fraudulent organizations "Getafape.org" and "The Office of Autism Advocacy", he's created a new venture on Facebook called "The International Voice of Autism". He identifies himself there as "Mike Robinson". We're asked to believe that he is working with other parents on his "new" mission-This time, en Français as well as English.

Mike, as he's known by at this time, ventures around preying on families affected by Autism and Epilepsy. He posts numerous articles, makes comments under multiple identities and then attempts to take credit for helping on nationally known advocacy issues.

At face value, he's a pretty believable guy. He seems very knowledgeable about Autism, especially. He claims to be a parent of an Autistic child. But when you dig further, things become less plausible.

His claims range from being a "Registered United States Lobbyist", working for the US Department of Defense and a retired NASCAR driver. He claims to have helped hundreds of families win special education due process hearings. Wow! He's done an awful lot.

The problem is, none of the claims are verifiable. A Freedom of Information Act request was put through to the US Lobbyist Registrar. Mike is not and has never been a Lobbyist. Interestingly enough, there is a Michael E. Robinson in Washington DC who is a high powered Civil Rights attorney.

Mike must not have been a very noteworthy NASCAR driver. Because again, there's no record of him anywhere. Further he claims to have had a serious accident during a NASCAR race - yet another claim that cannot be substantiated. At one time, he was touting his familial relationship to legitimate NASCAR racer Shawna Robinson, claiming to be cousins. When approached, Shawna Robinson refuted this claim.

Mr. Robinson is also a very "traveled" man. One week he claimed to be residing in California. The next week, he lived in Hawaii. And during the time of his international moves, he's been photographed in New York City (if we are to believe his outlandish claims) and Paris, France.

And if this wasn't enough to get your warning bells a-chimin, Mike was once in business with known scam artist and now felon, Raymond G. Parenteau of Arizona. In fact, Mike and Raymond together created the GetaFape.org organization. I even had the esteemed pleasure of being "behind the scenes" of some of the initial work as Mike emailed me and asked me to be a part (prior to knowing that either man was a scam artist).

Meet Ray....we shall be in touch as we get this all coordinated.. we're still in that 'set up' zone and getting ready to pull in corp sponsors and grants will be much after that.. so at this time we do have a 75.00 an hr. charge.. however.. cases are comp'd down to only 20 percent.. or 15.00 an hour if they parents don't qualify. go to the site and check out the intake process for new parents.. I think you will be impressed by the intensity of the work Ray has done there... he is the Dir. of Advocacy .. so you would be working with both of us and alot with him.. pelase make contact w/each other. Michael

Thankfully by the time I received this, I had realized Mike was not legitimate. However, another parent has come forth as the person who signed on to work in the above mentioned capacity. Mike used her as a "case manager" who was assigned the task of finding clients (aka desperate families). She, herself, paid GetaFape and exorbitant amount of money to help on her child's case.

This mother worked day and night to promote the organization. She found clients who were willing to pay. However, as she would find out personally, Mike failed to provide anything to those families regardless of how much they paid him. In fact, he didn't show to meetings he was scheduled for sighting "more important" matters at a National level. It wasn't long after this mom also broke ties. But that wasn't to be the end of her contact with Mike. Mike stalked her online sending threats.

Go ahead and post all over, if you degrade my name any further I will come forward in a way you will not like

He even went as far to send her PayPal bills for more money.

Money Request Details

Amount: $100.00 USD

Note: Since your husband is not going to pay and you have shown no want to pay your balance at all, would you mind terribly going on a payment plan ? I'm putting all those that have getafape contracts and balances due to OSEA on payment plans if they can't pay their balance. Thank you

Mike's been laying a bit low since Advocates Against Fraud in Advocacy investigated him. He was asked to state his side of the story and provide credentials, should they actually exist. However, he refused to provide any proof. Additionally, instead of attempting to clear his name, he went on a smearing campaign against the reporter who broke the story.

I bring this up again because though the authorities have been alerted, he is still in action. Facebook, MySpace, Yahoo and Google groups can all be wonderful places for advocates to meet up. Just remember that it's really easy to fake credentials and talk the proverbial talk.

Go with your gut and be warned. No matter what time it is in Chicago, it ain't got nothing to do with advocacy!

Pinned down: Palm Beach County schoolchildren subdued with risky restraint

2010-10-10T12:01:00.006-04:00

Pinned down: Palm Beach County schoolchildren subdued with risky restraint

Prone Restraint

Joshua, who also has autism and cerebral palsy, had refused to go to art class and would not move from the school courtyard.

Joshua was subjected to an especially harsh form of prone restraint, a maneuver in which the child is held face down until he stops struggling.

So risky that six states have banned it outright in schools, prone restraint remains legal in Florida: Palm Beach County schools have used it on disabled students more than 1,500 times since 2007, according to a Palm Beach Post analysis. Most were elementary schoolchildren. Some were in pre- kindergarten.

HELP FAMILIES OUT OF POVERTY AND ENABLE THEM TO BE SELF SUSTAINED!

2010-10-04T11:17:00.000-04:00

Pepsi Refresh Project

Mercer County PA advocate Olivia Lazor has been able to secure a spot in the Pepsi Refresh Project contest for Circles of Mercer County. You may be familiar with the contest after the Conneaut Lake Park Blue Streak received a $25,000 grant based on votes by community members like yourself.

Currently, Olivia volunteers much of her time to this extremely worthy cause. The program has become so popular that they find themselves in need of expansion. This grant will help them do, just that.

It takes very little of your time to vote. Those who have Facebook accounts, can vote simply by logging in with the Facebook Account. For those who do not, it's a very simple form. Pepsi is not spamming those who sign up and vote.

In order to secure the grant, Circles of Mercer County and Community Action Partnership must place within the top 10 of ideas. There are hundreds of competitors for the funding. For this reason, they need your daily votes! You can vote every day, including weekends. The more votes, the higher up the place.

Please consider taking a minute of your time each day to vote. It's a really wonderful cause that benefits everyone in Mercer County and beyond.

Please consider using one of your Pepsi Refresh Votes to help this wonderful cause!

Amy Gould Caraballo’s True Colours

2010-09-25T10:29:00.005-04:00

Amy Gould Caraballo
Amy Gould Caraballo
Amy Gould Caraballo
Amy Gould Caraballo
Amy Gould Caraballo
Amy Gould Caraballo
Amy Gould Caraballo
Amy Gould Caraballo
Amy Gould Caraballo

Amy Gould Caraballo is a mother and advocate to a son with Asperger's Syndrome. After dealing with the local school district's inability to educate her son, Amy has become a devoted advocate to all children with special needs. She is her son's educational coach for his Cyber School program through the Pennsylvania Virtual Charter School, a public charter.

Since November 2009, Amy Caraballo has been writing for the Examiner.com as the Pittsburgh Special Education Examiner where she reports on Special Education issues as they pertain to the Western Pennsylvania region. Recently, she has started the Disability Advocacy Network of Mercer County (DANMC).

DANMC is a registered business in Pennsylvania working on Not for Profit status. DANMC provides free services to those in and around Mercer County, Pennsylvania. Currenlty, Amy Gould Caraballo is seeking advocates and board members who wish to volunteer their time to work with DANMC. If you are interested, visit www.disabilityadvocacy.org for more information.

In the past, Amy Gould Caraballo has worked with the following advocacy groups:

The Autistic Women's Network (AWN)
Advocates Against Fraud in Advocacy (AAFA)
ARC of Pennsylvania Systems and Governmental Affairs
Early Childhood and Education subcommittee member
Pennsylvania Gaskin Settlement Agreement Overall Implementation Committee
PA Right to Education Local Task Force
Green Grannies and Friends for Clean Air
Healthy Kids committee
Mothers of Asthmatics Member (AANMA)
American Lung Association Parent Outreach
Pennsylvania Families Together for Autism
Autism Society of America Member
Autistic Self Advocacy Network (ASAN)
Families Against Restraint and Seclusion (national)

In her spare time she enjoys singing with the Shenango Valley Chorale and participates in community theatre.

Amy Gould Caraballo, Amy Caraballo, Amy C. AWN, Autism Women's Network, AAFA, Advocates against fraud in advocacy, ASAN, Autistic Self Advocacy Network, Advocacy, aspergers, autism, amy-caraballo, amy-gould-caraballo, philanthropy, When good advocates go bad, ravingmotherfromhell, raving mother from hell, caraballo, amy

When Trolls Attack, Throw Bear

2010-09-15T09:56:00.003-04:00

The game by Will Crowther's and Don Woods's called ADVENTURE was one of the first RPGs on computer written in Fortran. It was all the rage on college campuses in the 1970's. And thanks to

my Facebook buddy Phil, I've decided that this is indeed a good approach for online serial trolls – just Throw Bear.

throw bear:The bear lumbers toward the troll, who lets out a startled shriek and scurries away. The bear soon gives up the pursuit and wanders back.

Now of course, I don't have a pet bear that I'll literally throw at those who intend to harm or defame others in the name of personal gain. But I got to thinking of how funny that visual would be; here catch this bear. Suddenly, the whole thing seems dang funny and I'm laughing it off.

So the next time someone threatens or posts blatant lies about you, just think about throwing them that bear. Guaranteed to make you smile.

AAFA, Advocates Against Fraud in Advocacy

2010-09-02T11:07:00.004-04:00

On the coattails of Dave Wilde, I thought I'd give some information about AAFA (Advocates Against Fraud in Advocacy). As an investigative member of this team, I am very vested in outing fraudulent activities of “so called” advocates who take the money and run and even blackmail their clients into silence.

For years, I've watched some of these suspicious people taunt and torture innocent families. Finally, after reading a publication online about one known “scammer” I found it time to really do something about it. After speaking with a few other legitimate advocates, we decided to form an organization. More can be found at: www.advocacyfraud.org

AAFA does not formally investigate anyone. We aren't police or detectives. We use our Internet know-how and informally interview people who are associated with suspected frauds. We run background checks and attempt to match up claims with real documentation. In the end, if we suspect that the claim of fraud is true, we turn over all our findings to the proper authorities. After that, there is little we can and will do unless the authorities call upon us for more information.

We do not take on every case. We've had requests by those who dislike someone and want their name smeared. When we find evidence of flame wars, we walk away. But if an advocate is out there making grandiose claims about their conquests, that's where we come in.

What can you do to protect yourself?

Most real advocates do not “advertise” their cases. If an advocate is tooting their own horn, you probably want to do some research and verify that this person is for real.
In today's social network world, its very easy for scammers to take on multiple personalities claiming to be clients or victims of advocates. Look for real proof – not just someones words. If the advocate or victim won't send you legitimate proof, it's probably a lie.
Additionally, look to organizations who have legitimate licenses with their State to do business. If an organization doesn't have a Federal Tax ID (in the US), they are likely not very legitimate. Tax IDs are public information and can be requested from the IRS.
Lastly, if you aren't sure, you can request AAFA to do some research. We do not charge for this service. And while we are in the process of becoming Not for Profit, we only hope to obtain grants to cover the costs of our research.

Perspectives Anthology launches August 22, 2010

2010-09-01T09:43:00.004-04:00

Perspectives Anthology launches today - Long Island autism | Examiner.com

Marc Rosen

Long Island Autism Examiner

Over the past several months, two men gathered, selected, edited, and compiled poetry from over fifty poets, from three continents, to bring forth the first-ever anthology specifically dedicated to poetry about autism and other neurological, psychological, social, and communicative disabilities. Today, that effort has finally come to fruition, and Perspectives Anthology: Poetry Concerning Autism and Other Disabilities is now available for purchase online. The editors, when asked, expressed their excitement and exhaustion, but hope that people see the message they have attempted to put forth with this work, as they said in their mission statement, "...no matter what our differences, we are all human." The anthology will also have a book tour from September through to December, consisting of live readings from the anthology by the poets who wrote the works as well as book signing opportunities, with the first event being on September 16th at Dowling College. To purchase your own copy, you can attend one of the tour events, or see the link below:

http://www.lulu.com/product/paperback/perspectives/12313168

When good advocates go bad

2010-08-28T10:06:00.004-04:00

Most advocates are born through adversity. They have first hand experience of the wrongs they seek to “right”. There is a fire in the belly of these advocates.

These advocates experience years of fighting for their own family or selves. They've often been betrayed by supposed trustworthy individuals. All of this can lead to paranoia and general distrust of every person that crosses the advocates path.

For example, advocate Ellen Bradley* has a child with severe disabilities. She's fought the systems for years and years to help her daughter. Ellen has been through it all.

Setting out to help others like herself, Ellen Bradley found a partner Trent Thompson* and began a venture to promote awareness and help other families like herself. Together the partners formed a company Eleven-o'clock-in-Atlanta (EIA)*, an informal business that set out to promote awareness through art and music. Ellen and Trent blogged about their work, advocacy efforts and news related to disabilities. Realizing that there were expenses to be paid, Ellen and Trent began selling their wares to help fund their efforts.

But one day, things took a different turn. Suddenly, instead of blogging about advocacy, Ellen began seeking to find fraud in others. Her blog posts began to name other legitimate advocates, some who had never even heard of Ellen or her advocacy company. In the posts, she accused other advocates of numerous slanderous activities. Ellen wrote about these folks as if she'd personally worked with them or had direct dealings with them. However, in many cases, these advocates had never had any contact with Ellen, Trent or EIA. In fact, most of the accused were completely oblivious to any of Ellen's advocacy efforts.

Little by little the accused advocates became aware that their name was connected to Ellen's blogs. In effort to “clear the air”, they attempted to contact her to find out if it was mistaken identity and/or what had caused Ellen to post these slanderous remarks on her blog. Soon, the legitimate advocates learned that Ellen took anything they said and used it against them. She took snippets from emails and conversations out of context and manipulated words to look like threats. She'd then post them on her blog as proof the advocates were criminals, bullies and frauds.

The more the legitimate advocates fought back, the more Ellen used it as fuel to post horrendous things about them. Ellen began paying for criminal background checks on individuals and posting their driving records for all to see. She'd dig up whatever she could on each legitimate advocate as if to “prove” those with a misdemeanor or driving offense on their record must be bad people.

Advocates soon learned that fighting back was futile. Ellen would only use their words against them.

What happened to Ellen? When did it go so very wrong that she stopped helping and began hurting others in the name of her justice? One can only speculate that her convoluted past of fighting for her child, dealing with double agents who promised to help her and the general disdain society has for those with disabilities all attributed to Ellen's plummet down the dark path.

Today, Ellen and Trent continue to blast advocates through their blogs on EIA. Random advocates are featured as low life frauds and scam artists in her weekly rants. In addition to new victims, Ellen continues to use the names of every advocate she's slandered in the past. One can surmise that it's an attempt to stir up more controversy.

Ellen's story is such a sad testimony to how badly more support is needed for those fighting for better services, supports and general social acceptance in society. We need more good advocates in our world. And Ellen surely could have been one if the world was different to her.

*Names have been changed.

Advocacy fraud alert - Michael E. Robinson, Sr.

2010-06-03T11:14:00.000-04:00

Advocacy fraud alert - Michael E. Robinson, Sr.

PDE admits Special Education Complaint Investigation Reports are no big deal

2010-06-03T11:13:00.001-04:00

PDE admits Special Education Complaint Investigation Reports are no big deal

Pennsylvania schools are under heavy scrutiny by the Senate

2010-06-03T11:13:00.000-04:00

Pennsylvania schools are under heavy scrutiny by the Senate

Western Pennsylvania Intermediate Units and Rosa Parks

2010-06-03T11:12:00.001-04:00

Western Pennsylvania Intermediate Units and Rosa Parks

Segregation in Western PA - special education articles

2010-06-03T11:12:00.000-04:00

Segregation in Western PA - special education articles

Tolerance

2010-04-09T19:03:00.004-04:00

Tolerance is often under represented by society as a whole. And this certainly comes as no surprise to those in the disability communities. Today words like “retard”, “schizo”, “sped” and “gimp” are used as everyday slang. It is no wonder tolerance for differences seems to be such a far away goal. But one might think that the communities would at least have found tolerance amongst themselves. That perhaps the advocates, families and those with disabilities themselves would be tolerant of others. Sadly, that is often not the case.

There are huge rifts caused by a multitude of issues between differing advocacy groups. Many disputes are over competition for grassroots funding. When there is only a little in the pot to share, groups can become extremely competitive. But probably more pervasive is the theories about what is best for those with disabilities that causes the most problems.

Ultimately, this rift can been seen in full action by watching the Autism community. Because to date, there is no valid medical test to determine what Autism is, those affected by it are left to choose sides with one of the theorists. The two most powerful groups in the Autism community are those who attribute Autism to a curable disease or vaccine damage verses those who consider Autism a neurologically diverse evolution of the species. There are extremists on both sides and many, many more folks in between.

Those in between folks are left to chose sides or remain neutral. As politics go, remaining neutral does little to help make any advancements on either side of the debate. So many pick a side just so that they have something to work with.

With both sides having dug their feet in so deeply, it is hard for either to make advancements. There is no tolerance given to either side.

How can we expect the rest of society to have tolerance for our differences when those who are living with the differences cannot even tolerate each other? How can we expect to ever advance as a species if we refuse to even acknowledge the other side is human and deserves to be treated respectfully?

While many middle ground folks can see the validity on both sides of the debate, it's not enough to bring the community together. Until we successfully bridge the gap between all those affected, it is arrogant to request that the rest of society tolerate our differences.

Raving Mother is Raving Mad Today

2010-03-29T18:16:00.005-04:00

I've been scouring the web today reading all sorts of horrendous things parents of Autistic children are saying about Ari Ne'eman, self advocate, founder of ASAN, and presidential nominee to the National Council on Disabilities.

From calling him a mentally ill sociopath to calling him a fraud, I cannot believe how vicious people are. The irony of the situation kills me. These parents are desperate for their children to be as functional as Ari. Point in case, Kim Stagliano of Age of Autism is quoted as saying

He has stated categorically that autism does not need a cure and that the treatments I use, that have helped my children function, are not worthy of study. He does not represent my children's needs. Without these treatments, my girls are unlikely to achieve any of the goals of the council.

Firstly, Ari has never stated that treatments are not worth studying. Far from the truth, he has stated that more funds need to be funneled to supports and services. Supports can appear in many forms, and treatments are supports. Ari and ASAN have been vocal about supporting those on the spectrum NOW and using some of the grassroots funds for such purposes.

Secondly, does Ms. Stagliano not see the irony in wanting her child to function as well as Ari? If Ms. Stagliano succeeds in helping her daughter be cured, does that then, make her daughter less worthy to speak on behalf of other children with her diagnosis?

Most importantly, why do these parents who insist on "curing" their children of Autism think its ok to speak on my behalf? They criticize Ari for speaking on their behalf. What about mine?

I'm just sick to death of it. Really.

This "if you aren't with me, you're against me" mentality is getting old.

Countering Age of Autism: A K and K Duet: Now What?

2010-03-28T21:14:00.000-04:00

Countering Age of Autism: A K and K Duet: Now What?

Chicago Special Education Examiner: (Part I) Child abuse in our schools: Restraint and seclusion in boy's special education classroom

2009-06-08T17:37:00.003-04:00

Chicago Special Education Examiner: (Part I) Child abuse in our schools: Restraint and seclusion in boy's special education classroom

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A Brave New Education

2009-05-20T19:39:00.006-04:00

Yesterday, the GAO Education Committee held a hearing on Examining the Abusive and Deadly Use of Seclusion and Restraint in Schools. I watched with bated breath. Our story was one of the hundreds that congress was hearing about for the first time. Thanks to grassroots efforts by a bunch of angry parents in a Yahoo Group someone was finally listening. COPAA, The Council of Parent Attorneys and Advocates created a document for the committee.
UNSAFE IN THE SCHOOLHOUSE: ABUSE OF CHILDREN WITH DISABILITIES
Our case is #C26

Between kindergarten and first grade, the student was regularly put in seclusion as a result of "behavior" issues, sometimes for hours. There was no positive behavior plan in place, and IEP accommodations were not implemented in classroom. In first grade, he was routinely restrained by 1-3 adults and placed in seclusion-- multiple times per month. At one time, when the seclusion room was occupied, the 6-year-old was pushed face first into a bean bag chair by the aide. Student was also restrained for not behaving in seclusion, coming home with bruises. School routinely ignored therapist's advice that child receive routine sensory breaks as part of a systematic behavior plan.

That's the really abbreviated version. Much much more abuse happened - both psychological and physical. And now nearly 3 years later, our son who has Asperger's Syndrome is starting to remember. The memories are Tsunamis in his brain.

The outcome of the hearing will have little direct effect on us. Our son now has Post Traumatic Stress Disorder added onto his seemingly endless list of medical and psychological diagnoses. But I push on to advocate for the thousands of children this is happening to right now - right here - in the great USA. Where animals and criminals are treated better than children.

Yet I do feel a small sense of validation. There are others. We are not alone. And perhaps that should help me feel better. But because the common bond we share is crisis, I am only saddened. There are thousands of children abused by the hands of those we "legally" must entrust our children to everyday. And despite the possibility of stricter laws, I critically question whether any legislation will prevent school abuse. There are already laws that make child abuse illegal. It's the lack of enforcement or consequences to public agencies that lets it continue behind closed doors.

These children have lost their innocence, childhood and lives in a system gone terribly wrong. I thank God he was not one of the many children who were murdered by the system.

But I keep on advocating. There is much much more work to be done.

The Sad State of Pennsylvania's Special Education

2009-02-14T09:58:00.004-05:00

Should we be surprised that Pennsylvania's system for funding special education is completely broken? Not if you have a child currently receiving services in that system.

Families with children in PA special education are well aware of the deficits. Lack of trained staff and lack of resources plague our children.

However, for the first time, it appears that the study also makes some great points that should grab the attention of all parents - not just those with kids in special education.

From the study:

Key Points
The costs for special education were analyzed as part of the 2007 Costing‐out Study by the General Assembly.
The Study found that providing a basic, quality education for Pennsylvania students eligible for special education requires, on average, more than twice the costs of teaching students without any special needs.

Under‐funding special education has significant consequences for academic achievement and life‐time independence and employment for individuals with disabilities.

Inadequate resources for special education compromises teaching and learning for all students.

Yes folks, it's true.

"If you light a lamp for somebody, it will also brighten your path.", Buddhist saying

You see, helping these children become successful, independent, working adults is key to reducing poverty and our over dependence on the governmental welfare systems.

So here it is in simple terms for those "what's in it for me" people: Invest now and reap the savings later. It's really that simple.

The Coalition for Positive Behavioral Interventions and Supports: Special Report: Disability Rights Network of North Carolina Refuses to Investigate Restraint and Abuse Allegations

2009-02-12T10:08:00.000-05:00

The Coalition for Positive Behavioral Interventions and Supports: Special Report: Disability Rights Network of North Carolina Refuses to Investigate Restraint and Abuse Allegations

No Child Left Behind (AKA: Test them until they implode!)

2008-10-01T08:51:00.019-04:00

It's not breaking news by any means. GWB signed that optimistic legislation in 2001 - a piece of legislation that sounded so absolutely wonderful, who could not buy into it? Finally, ALL children would receive a quality education.

Hmmmmmmmmmm.....................

For those unfamiliar with what NCLB actually looks like in practice, here's a tidbit.

(A) use the State academic assessments and other indicators described in the State plan to review annually the progress of each school served under this part to determine whether the school is making adequate yearly progress as defined in section 1111(b)(2);

Key words above are "State academic assessments".

If you haven't had a child or grandchild who has been subjected to the assessments yet, think back to the good old SATs you took in high school.

For many of us, the SATs were complete stressors. For those, like myself, test scores were rarely indicative of actual abilities (I had severe test anxiety and undiagnosed, ADHD). But, thank goodness we only had to take them once or twice.

Today's children, as young as 8 years old are taking State academic assessments on an ongoing basis, regardless of the anxiety such tests invoke.

What does this mean for our schools? It means that Mrs. Jones who used to be a creative teacher must put away her proven methods. She must stop making learning fun. She must now "teach the test". Failure of her students to achieve adequate scores on State academic assessments indicates that she is not an effective teacher. It also means her school could lose Federal funds.

Now lets take into account the fact that some kids do test well. That's just great. But they too, must continue to "learn the test" despite being excellent testers- add boredom and general disdain for school here.

But what about the child who is exceptional? How are those with learning and other disabilities affected by these tests? Some of that is determined by individual State regulations. However, NCLB requires that all children take these assessments regardless.

In Pennsylvania, there are some pretty rigid guidelines about accommodating children with exceptionalities. The code is non specific:

(j) Children with disabilities and children with limited English proficiency shall be included in the State assessment system as required by Federal law, with appropriate accommodations, when necessary. As appropriate, the Commonwealth will develop guidelines for the participation of children with disabilities in alternate assessments for those children who cannot participate in the State assessment as determined by each child’s Individualized Education Program team under the Individuals with Disabilities Education Act and this part.

Appropriate accommodations is the key phrase. What is appropriate? Let's dig further.Below are some of the allowable accommodations.

Braille
Large Print
Magnification Devices
Screen Magnification Software
Sign Language
Human Reader (Mathematics and science PSSA tests only)

Billy has Dyslexia. He is in 3rd grade Math, Science, etc. However, for reading, he is in a special remedial reading program. PA schools are not required to acknowledge a reading disorder in students until they reach age 7 and often put that off longer. Billy is now 8 and has started this program. He is only reading now at a pre-kindergarten level.

Billy will test at 3rd grade level for both Math and Reading despite his disability. He may have someone read his Math questions to him. However, for the Reading Comprehension tests, Billy is on his own. Billy fails the reading portion, miserably because he cannot read at this level yet. His comprehension is 0%.

Mary has an Autism Spectrum Disorder and ADHD. She is a "math wiz" when presented with numbers and patterns. However, due to her disabilities, she has poor executive function skills which interfere greatly with her ability to sequence steps for problem solving. In school, Mary uses preprinted graphic organizers to help her break down the steps necessary to solve word problems. These organizers are papers with prompts in steps such as:

What do we already know?
What do we want to know?
Draw the problem in pictures.
What type of problem is this?
Show your work.
Check your work.

These organizers remind Mary to break down the problem in sequential steps so that she can accurately process the information and solve the problem. However, during the State assessment, Mary is not allowed to have these organizers. She is on her own. Ironically, she is allowed to have a blank sheet of paper which she can then create her own organizer, were it she could remember the steps. Mary fails to score well on the math portion of the test due to the multitude of word problems.

So this brings to mind a very huge question. Why aren't these children tested at their own level? Why aren't they allowed tools to help them with a manifestation of their disability?

We all want our children to succeed in school. Yesterday's special education was merely "life skills" for those with cognitive disabilities. Today's expectations are much higher and rightly so. But, we have to acknowledge the efforts our schools ARE making to help these children learn. And we have to acknowledge that you cannot "teach the test" to these children.

State academic assessments are subjective, discriminatory and poor indicators of a school's performance or a child's abilities. And in this Mom's opinion...they are unnecessary stressors for our already stressed out kids.

Adventures in Education - Our Story

2008-08-14T19:36:00.002-04:00

In 2002 our son attended his first preschool. It was a wonderful experience. But, he was constantly sick and missed a good bit of it. He was diagnosed with Reactive Airway Disease which soon became Asthma. We were in and out of Emergency Rooms and doctors offices. His list of medications was exorbitant. But at 2 years of age, he was showing signs of extreme intelligence. He knew all his colors. He knew shapes, such as Octagon and Hexagon. And that's not because we, his parents, were pushing this stuff. He was so inquisitive - he had to know everything. So when we spoke to his doctors about his behaviors and somewhat delayed motor skills, we were "poo-poo'd" with things such as "But just listen to his vocabulary" and "He's on so many medications"....

In 2003 we decided it was time to find out why the "Terrible Twos" came on at 12 months and still hadn't left at age 3. He was starting to have extreme behaviors and could almost never sit still. He was chewing on things, despite being way too old to teethe. Most of his board books were devoured. He was jumping and jumping and jumping where ever he was. Even one time his jumping landed him at the ER with a goose-egg on his head and a nice scar when he slipped and hit his head on the way down.

The developmental pediatrician we saw also did not pick up on his diagnosis. She felt that, if anything, he was showing signs of giftedness and perhaps ADHD. But she was loathe at the time to diagnosis him with anything. However, she sent us to a family therapist, who picked up on his Sensory difficulties.

From there, we started Occupational Therapy and soon after Physical Therapy. It was at that office, I was introduced into the world of Autism Spectrum Disorders.

I began to see the similarities in the other children in the waiting room. While many of these children were not verbal, the behaviors were so familiar. One day, our son had such an explosive episode another Mom said to me, "Asperger's Syndrome"? And I said in a pleading voice, "I don't know".

That day, I got online and went to town on my research. Suddenly I had found it. Asperger's Syndrome. THAT was exactly our kid. I called up the Developmental Pediatrician who squeezed us in for a full Psychological Evaluation. We walked out with the diagnosis.

By this time, Preschool was well aware that we were trying to find answers. He, of course, was having behavioral issues there. But the teachers were really patient and understanding since they knew we were doing all we could. We were in the process of getting him some one on one supports when a new parent threatened to pull funds from the program if our son was allowed to continue there. I received a call that day from the teacher who was mortified. Her boss (an administrator who had never even met us) told her to call us and tell us we couldn't come back. I was sick.

We found another preschool, which was very accepting and accommodating. By this time, our local education system was getting him into an early intervention program. He continued in private preschool for three half days per week. He attended Early Intervention 2 days per week for a couple hours at a time. It was all going pretty well.

Enter the local school district.

In the Spring of 2004, we had a formal meeting to transition our son from Early Intervention to School Aged. At the time, we thought this was going to be our IEP meeting. Upon arrival, we were told that it was not an IEP meeting - but a transition meeting. We were given papers to sign him out of Early Intervention and a paper which stated our intention to enroll him in the district Kindergarten program. Assuming this was the process, we signed papers and went on our merry way.

In the summer of 2004, our local district offered us a summer school program that would allow him to become familiar with the Kindergarten rooms and school in general. We jumped at that chance knowing that familiarity was good. We couldn't have been more wrong. It was a horrendous disaster. The program was called "Success by Six" but it was really "Weed out by Six". The program was a sly way for administration to figure out which kids were going to be "problems". The goal was to break the wild ponies before fall. The summer teacher, who was a regular kindergarten teacher, was not allowing our son any accommodations. There was no tolerance for his quirks.

With the problems ensuing, I contacted the school district to find out about an IEP meeting. The district administrator told me that we didn't need any meetings - his Early Intervention IEP would carry through and we should "wait and see". BUT...she slipped and said he was not getting Physical Therapy. I hung up the phone and it dawned on me. I was very green on educational law. But I knew that they couldn't change the IEP without a meeting - which is what she insinuated had happened by removing PT.

I contacted our state's educational consult line first to find out if I was right. What I found out was MUCH more than I had expected. You see, that meeting where he was removed from Early Intervention was also supposed to be an IEP meeting for his school aged IEP. The school just ignored that and thus took him out of special education with no intention of ever telling us. I supposed they figured we'd be "none the wiser".

Talk about feeling bamboozled. BUT, we thought, okay...maybe they are just really screwed up and didn't KNOW what to do. We took the high road.

I formally called an IEP meeting in writing. Two weeks before the start of school, and IEP document was written. I was still fairly green, but had done enough research to make sure that we wrote something based on needs. Since there were no school evaluations done, I provided outside psychological reports, OT reports, you name it, I included it. I found a really nice document outline to give teachers about your child and customized it. I emailed and mailed copies to the team members in advance and had copies to give everyone at the meeting. The documents were never even so much as opened or glanced at.

Despite this, we walked out feeling pretty ok with things. Everyone seemed so nice. They assured us things would be great. Talk about being naive.

By the second week of school, the principal sent our son home for "behaviors". By the third week, he was threatening to expel our 5 year old. By week four, I was being told they were going to change his placement. I hired an advocate.

We found out that his IEP was not being followed because it was not a legal IEP. Our son never had a school evaluation to show a need so therefore, it was just a dummy document to shut us up. There was a plot to transfer our son out of the Autistic Support and into a emotionally disturbed classroom which was just full of problems.

Our Autism therapist (who works at a notorious Autism clinic) received a call from the school psychologist who attempted to persuade her into turning against us. The therapist questioned the school psych as to why they felt he wasn't on the spectrum. The school psychologist started rattling off behaviors that our Therapist advised were indeed indicative and quite common for Asperger's. The school psych, unhappy with that answer, said "We don't see it that way" and hung up on her. I was told this first hand by our therapist.

In the meantime, our son's anxiety was off the charts and he was becoming dark and withdrawn. He started talking about wanting to die. Finally, we had to have him admitted for his own safety.

We called the school to the plate. Do a Multidisciplinary evaluation and get this kid some supports. The school complied, although missed time lines. But in the meantime, his current teacher was really taking the high road and working with us, despite her administration. We also had a private one on one who made the rest of that year tolerable.

Summer was somewhat non eventful until two weeks before school start. We received a call that his one on one was taken off our case. The explanation was given that she wanted off. In the meantime, she and I had become close. I called her and she had no idea that they pulled her off the case. She put in a call and was told she'd lose her job if she pursued it. We soon figured out the school had "gotten" to our one on one's agency. He started first grade alone.

Within a few weeks, we found a new one on one via a new agency. It was going "okay" as far as we knew. By December, we had a different story. He came home with bruises from an Aide assisted by the Principal. We soon found out he had been put in seclusion and restrained while there in a very illegal prone restraint almost every day that year.

We pulled him out immediately, filed due process and enrolled him in Cyber School. He's been in Cyber for two years now and just flourishing. But in March of 2007 he had to do another inpatient stay due to depression.

It's been a ridiculous saga to get our child an education. But we've finally found a home with our Cyber Charter School. I've since learned what special education "should" look like. His school granted him extended year services this summer and sent him to an 8 week day camp to work on social skills. He made friends there. We are so thrilled.

That pretty much summarizes our story, leaving out a lot of gory details. I hope you take away something from it. Amy C.

No WIRE Hangers!

2008-08-14T17:23:00.000-04:00

And not because I work hard to buy those beautiful plastic jobs at Wal-Mart, but because they leave icky wrinkles on your pants...

I could not think of a better way to start off this blog than to bring up Mommy Dearest, aka Joan Crawford (played here by Faye Dunaway).

Why you may ask? Because years ago Autism was once blamed on Refrigerator Mothers (emotionally frigid) such as the mother portrayed here. Things have changed dramatically since then. Autism is now recognized as a neurological disorder by the world. And while the various causes remain controversial, it has been established that Mother's have nothing to do with it.

But I didn't just quote Mommy Dearest to focus on the past. There's a method to my madness.

Enter the 21st century. The increase of Autism Spectrum diagnoses is at an all time high. So are the instances of other neurological and mental health disorders. And well, in general, medicine is getting better at recognizing the signs. However, much of society in effort to ignore the issues, often likes to point blame back at good ol' Ma.

Recent public statements like that of a Radio Talkshow Host telling the public that most Autism cases are complete frauds - the kids just need a good old fashioned whipping, are what we hear. People like this get us all fired up. But folks, that's not the what we should be fired up about.

Better we should be concerned that this mentality is lurking behind closed (school, church, kids clubs) doors everywhere. And it lurks so silently that many of us don't know it exists until it's too late. It lurks at the administrative level at public schools. It lurks in the minds of church congregations. And it lurks right next door to you.

That truly is scary. Because ignorance breeds misinformation. And misinformation spreads so much faster than any good information ever could (just look at how fast Hollywood rumors propagate).

Parenting a child with special needs is no easy task. And while that in itself can be challenging, it's nowhere near as difficult as raising a child in a society who thinks that YOU (Ma and Pa both this time) are the only reason your child behaves differently.

Well, at least I'm no refrigerator mom...Now I'm just a plain old bad parent.