On Blue Light Bulbs

I’ll never forget that moment.

We entered a major home improvement store as we always seemed to be doing as homeowners. It was early spring and the Autism Awareness campaigns were in full swing. My then pre-adolescent son saw it first. It was a sign encouraging customers to “Light it Up Blue” by purchasing blue light bulbs.

He said, “Look, Mom! They are celebrating Autism.”

His face changed as he continued to read on. The sign said autism was a “crisis.” It explained how proceeds would benefit Autism Speaks search for cures and prevention of autism.

My son understood the word cure enough to know it implied he was sick. He looked at me despairingly and asked why they thought he was sick. I told him what I believe – Autism Speaks is absolutely clueless about the life of an autistic person and people are fearful of what they don’t understand. He looked puzzled. He wanted to know why they didn’t just ask autistic people. I explained how Autism Speaks refused to allow autistic people to have a voice in the organization. He shook his head and said how wrong that was.

Then he asked me the question I feared. What did they mean by prevention? Why would they prevent autism? My head was spinning. How could I explain this to my beautiful, perfect child? I blurted out that they cannot prevent autism because it is not a disease, that this was just a way to get more money.

Though not the full story, I could not bear to tell him the rest – that Autism Speaks was heavily funding research that would encourage families to terminate pregnancies. That they were hell-bent on discovering genetic clues so as to advise families against becoming pregnant. That this heavily funded organization wanted to eliminate people like my son from existence through eugenics. That this billion dollar organization intended to find a magic pill that would change my son into something less than, not him.

My heart sank like a rock into the pit of my soul. My son was devastated and deeply hurt and once again, I could not protect him. We left the store that day without what we came for. And we left with a little less hope for the future of humankind.

An Open Letter to a “Feminist” Blogger

Dear Feminist Blogger,

I couldn’t help but notice you posted a very public Facebook status that sarcastically criticized a marginalized group of people. I couldn’t quite look away when you said that people advocating for their own rights was called “jumping the advocacy shark.” And I certainly couldn’t walk away when you continued to denounce a civil rights movement to which you do not belong.

No feminist ever said that men know better to determine what women need. That’s outrageous to a feminist. But here’s the thing…if you say that “you,” as a woman (mother, grandmother, etc), know what’s best for a group to which you do not belong (even if your own flesh and blood belongs to that group), you have played the part of oppressor – like the sexist who knows what’s “best” for you. You don’t get to decide who is worthy of human rights. That’s what sexists do.

As women, we belong to more than just ourselves. We intersect with LGBT, racial minorities, those with disabilities, and more. Women will never be treated equally as long as other groups are oppressed.

“Women will never be
treated equally as long as
other groups are oppressed.”

If you decide to join the oppressors by claiming to speak on behalf of a marginalized group, well, you’re not really a feminist after all. Please take your toys of privilege elsewhere because we, in the feminist sandbox, have a lot of work to do.

Sincerely,
Feminism

Feminism

  • is not about burning your bra.
  • is not about refusing to shave your legs or wear makeup
  • is not about encouraging women to be pro-abortion
  • is not about ruling over man

Feminism

  • is about autonomy and equality
    is about leaving decisions about our own bodies up to the individual
  • is about equal rights for all people, not just women
    having the same rights as the most privileged group

Why the Autism "Community" Can’t Get Along

The idea of a “community” in autism activism is a farce. This is because many who are deemed to be part of this community have opposing goals. From my experience, three completely different groups exist. Though there is crossover between some of the groups, the ends are polarized and cannot unite. Below is my perception of the groups, though more groups might exist that are less well-known.

Vaccine-injury Conspiracists

This group believes that autism is a preventable injury. Though no science supports this theory, they hold on to bogus research claims and snake oil. The bulk of this group believes that the pharmaceutical industry has created dangerous vaccines as a way to make more profit (by using cheaper but harmful additives and ingredients or creating unnecessary vaccinations). Others take the theory a little further and believe that the industry is purposefully poisoning the people. Regardless of how extreme, this group tends to believe in pseudoscience and promotes sometimes dangerous “snake-oil” treatments in attempt to cure autism. Groups such as Talk About Curing Autism and Age of Autism are examples of this group’s mentality.

Eugenicists

This group consists of those who seek to eradicate the possibility of new autism births. They seek to find a prenatal test that can identify the likelihood of having a child on the autism spectrum so that families may be given the opportunity to terminate an at-risk pregnancy. They also seek to find ways to keep the so-called disorder from happening – presuming autism is a preventable defect (think Fetal Alcohol Syndrome). They hope to find a “cure” for those they believe are “suffering with autism.” They throw millions of dollars into “awareness campaigns” that stigmatize those who are on the spectrum. They also fund research that might further their goals. A good example of this group is Autism Speaks.

Neurodiverse

This is where the self-advocates, often identifying as autistic, tend to flourish. This group believes that disability is natural and that autism is a neurological difference and a variant of human diversity. This group vehemently opposes that autism should be prevented or cured. Led by disability activists, this marginalized group has been compared to the civil rights movements of the past. Their motto is “Nothing about us, without us!” This group promotes “acceptance” rather than awareness. Most of this group consists of those identifying as autistic. In the recent past, however, many non-autistic (aka allistic) allies have joined in support of the neurodiverse message. This group has been notoriously labeled by other groups as “too angry.” Others have attempted to discredit the movement by insinuating the members are not truly disabled and are NLMC (not like my child). A couple examples of this movement are the Autistic Self Advocacy Network and the Autism Women’s Network.

You may already be able to discern why these groups cannot converge. Here are a few ways they do and do not.

Convergence

Eugenicists and Conspiracists
These two groups agree that autism is potentially preventable and treatable. Both tend to infantilize autism as believing it only affects children (somehow magically disappearing in adulthood).

Neurodiverse and Eugenicists
There is very little agreement between these two groups. Both groups do support scientific research about autism but the support for research focus is very different.

Conspiracists and Neurodiverse
I am at a loss to find any common ground with these two groups.

Divergence

Eugenicists vs. Conspiracists
The eugenicists represent legitimate (albeit ethically questionable) science. The conspiracists do not.

Eugenicists vs. Neurodiverse
The neurodiverse are strongly against cures and prevention for autism and consider autism a natural human variant. The eugenicists are strongly for cures and prevention and consider autism a disease or affliction. Eugenicists seek social awareness while the neurodiverse seek social acceptance.

Neurodiverse vs. Conspiracists
Conspiracists believe that all cases of autism are preventable injury and fight to stop this so-called injury. They promote treatments that are often harmful and dangerous. Neurodiverse do not support questionable treatments for autism nor do they support the idea that autism is caused by a preventable injury.

It is probably not so hard to see why there is little community behavior between these groups. It is unrealistic to believe that they will ever converge because they simply do not share the same goals. Community generally refers to common ground. It is not only unrealistic to infer we should all “just get along,” it is offensive. What most really mean by that statement is that the marginalized group should be silenced.
I won’t deny that there are people who do not fit neatly into any of the three groups. Often we hear those who say they support the neurodiverse message but still seek a cure for some. These statements are in disharmony and make little sense. Realistically, these people are supporters of the eugenics or conspiracists groups but do not want to identify as such. You simply cannot be for finding a cure for autism and at the same time believe autism is a natural part of human diversity.
For those who read my blog, it is probably easy to see that I am an ally to the neurodiversity movement. My belief is that those who are labeled – are living with a disability, should be calling the shots. I believe that people on the spectrum should have a voice no matter whether their voice is through augmentative communication or their vocal chords. I cannot possibly imagine that I, an onlooker, should have more say than this marginalized group of people. I don’t get to determine how they should think and feel anymore then they do for me. This is their battle and I proudly stand beside them in support. As a parent, I stand beside my autistic son and let him be my guide.

Stress Kills

People – real children, adolescents,and adults with disabilities are dying by the hands of mothers, fathers, and trusted caregivers.

THIS IS UNACCEPTABLE!


We cannot stop the madness, however, without first having a conversation about a system failure. But that broken system may not be about what you think it is.

  • It is not about finding better treatment for disabilities. 
  • It is not about finding cures for disorders. 
  • It’s not even about finding better supports for the disabled.
  • It is certainly not about pity for caregivers.
Mental health and social supports for managing stress are missing or inadequate, especially in the United States, and that needs to change. 

Mismanaged stress is causing caregivers to kill their loved ones; it is not really about the victim at all.

“Care recipients may also be at risk for encountering abuse from caregivers when the recipients have pronounced need for assistance and when caregivers have pronounced levels of depression, ill health, and distress” (http://www.apa.org/pi/about/publications/caregivers/faq/well-being.aspx).

Stress is not always a bad thing, despite public perception. A little bit of anxiety can actually improve performance, for instance. It is when stress hits a certain threshold that it becomes detrimental to our health. When stress becomes chronic our health and well-being are in trouble.
US culture ingrains that we should be autonomous – self reliant and sufficient. Add to this mess a stigma applied to mental health issues. US culture uses the word “stress” like we use ketchup – it’s applied to everything. But when someone is chronically stressed, the subject suddenly becomes taboo.
So what do we do? Do we continue to blame the victim – a very disturbing current media trend? Do we continue to blame the non-specific “system” for failing to prevent the murder? No, we need to take ownership of the problem – we ARE the system.
We (you and me) aren’t doing enough to learn how to manage stress and care for our own health.

Ineffective “sedentary behaviors like listening to music (48 percent), reading (40 percent) or watching television or movies for more than two hours per day (34 percent) are strategies used for managing stress” (http://www.apa.org/news/press/releases/2013/02/stress-management.aspx).

“…caregivers are less likely to engage in preventive health behaviors than non-caregivers and thus neglect their own health” (http://www.apa.org/pi/about/publications/caregivers/faq/well-being.aspx)

Health care professionals are not doing enough to help identify and treat those with chronic stress.

“Overall, 53 percent of Americans say they receive little to no support from their health care provider in managing their stress” (http://www.apa.org/news/press/releases/stress/2012/report-summary.aspx).

Health care insurers aren’t doing enough to ensure people have realistic access to care for managing stress. Some insurers are skirting the new Affordable Care Act’s Parity Laws (http://www.apapracticecentral.org/update/2011/03-31/parity-law.aspx).
And our country, as a whole, isn’t doing enough to ensure it’s people have access to social supports.(http://www.ncbi.nlm.nih.gov/pubmed/22824248).
It is time to change the conversation to one of which is about all of us. It is time to take ownership of our own stress as well as the “system” in which we all play a part.

Only then, will the madness cease.

This Raving Mother from Hell celebrates 1000 Ausome Things #AutismPositivity2013

My thirteen year old ausome son…

  • knows more about plant and animal biology than most college students
  • is more protective of earth’s precious plants and animals than most conservationists
  • takes more seriously performing in a play or concert than most adults
  • is more decent to humankind than it often deserves

I hope someday to be half the amazing person he is.

What You Don’t Know

As the Pennsylvania Legislators continue to examine bills related to funding PA’s Public Cyber Charter Schools, many families like ours sit on pins and needles waiting to find out the fate our children’s education. Much of the public likely has little opinion on the matter other than – save us taxpayers money. So it’s not exactly front page newsworthy to the media. But there are some really important things that families who rely on these schools, need you to know. Our children will have no schools to attend should these bills pass.

Cyber Schools do not cost taxpayers any additional money. In fact, it works like this. Only a portion of school taxes that are collected through property tax is passed along to the cyber schools. The tax money you pay now (whether you have a child enrolled or not) is sent to the local district who then takes a portion of that and gives it to a cyber school. That is, if a district student transfers to a cyber school, the school district takes a portion of the per pupil funds it’s collected and pays the cyber school for that one student. No additional tax revenues are collected from the public. Noteworthy is that the districts still keep a good portion of the per student tax revenue. Only a portion is sent to the cyber school who has to supply all that student’s educational needs.

Most, if not all, cyber schools in Pennsylvania are non-profit organizations. They are not for profit. Cybers, like districts, however, purchase curriculum from other companies. These curriculum companies, like Pearson Education Inc., Macmillan/McGraw-Hill, and K12 are typically for-profit. Though cybers may have fewer options than districts because of the instruction model, the companies that sell the curriculum are not reflective of the school’s administrative business model. There is little to no difference between a district buying Pearson’s curriculum and a Cyber buying K12’s curriculum.

Cybers are not failing to make AYP (annual yearly progress) any more than many districts are. In fact, it is not feasible to compare districts scores and progress with large multi county cyber schools. A school district is measured on a scale that uses grade spans: 3-5 for elementary schools; 6-8 for middle schools and 9-12 for high schools. Only one of the three grade spans needs to hit the testing targets for a district to make AYP. Cyber schools do not get to span grades. Therefore, all scores are tallied for the cyber and it’s pass or fail – no in between. The other problem is this. Small districts do not have the diverse demographics that larger schools, such as cyber schools have. When a district only has a few students under a certain demographic, they do not have to report those students scores under a performance target. Cybers and large districts inevitably always have enough enrollment that they must report all scores for all demographics. So while District X and Cyber Y may both have low scores for a special education population, only Cyber Y gets it counted against their AYP.

Children do not sit in front of a computer all day. That is a myth. These kids are doing hands on education. Especially at the early elementary level, students  are provided with a multitude of books, math manipulatives, art supplies, science tools and more. Until they are older, very little is done on the computer by the student. Rather, the parent uses the computer as a teaching guide. As they get older, students attend live classes in a virtual classroom. Though not in the same room, these children get to know each other through the virtual class. They interact with each other and the teaching staff. These students are required to read novels, write essays and research reports, and do hands on science experiments.

Families who choose cyber schools typically do so as a last resort. Face it. Bringing your child home to learn is a huge commitment. Many have to quit jobs so they can stay home for their child. We are not typical home schoolers. Typical home schoolers don’t want the rigidity of a public education. Cyber schools are public charter schools and must follow all the same laws and more as the local districts. Our children are in cybers for a variety of reasons, but almost all of those reasons point to deficiencies in our local districts. Many of these children have special healthcare needs and/or are academically gifted. These kids were not getting what they needed to be successful in the district program. Many families try with blood, sweat, and tears to work with their local districts before making such an immense decision – to bring their child home.

Passing bills that reduce cyber school funding will ensure that the cyber schools shut down. As you have already read, these are non-profit public schools. They are not money making machines. The proposed bills all point to speculation about how much it “should” cost to provide distance education. There has not been one cost study done, however, to see what the actual costs are. So since they are pulling numbers out of the air, the legislators added verbiage that encourages districts and intermediate units to set up their own cyber schools. If districts do this (some of them already have them – though I have yet to hear if anyone is enrolled because they limit who can enroll), the districts don’t have to pay tuition to another cyber school. Well, at least not most of it. The bills call for massive reduction to cyber school tuition plus a 50% reduction after the massive cuts. No school can survive on less than half tuition. And most families cannot financially afford to pay that 50% tuition. Thousands of Pennsylvania’s children will lose their schools.

If we want to talk about reform, the public needs to know that what is going on in the public education brick and mortar sector, is far from on the up and up. Just in the last month two Pennsylvania Intermediate Units have been caught up in financial scandals. One North East former administrator is going to jail. The other Northwest IU was caught  using $11.7 million in funds marked for special education for buying multiple company cars. More recently, another IU administrator is on leave for breaching the Right to Know law. The point is this. If we want reform, it has to be fair and it has to be across the board. Picking on cybers makes little sense when brick and mortar charter tuition costs far more. And what of the corrupt use of funds by the intermediate units? Where is the public outrage there? And when was the last time a full audit was done to the local districts to make sure they weren’t using funds earmarked for instruction as ways to buy the administrative staff a new Lexus? Other districts have been caught cheating on the PSSAs, the tests that determine if they make AYP.

I challenge the legislators to take on the problems that have driven families to chose a cyber school. If you want to shut these schools down, you must first fix the problems that brought us here. Enforce the laws and hold all public schools accountable. Everyone should question why only one type of public school is being attacked. It is nothing more than a money game.

Cyber schools are not for everyone. It takes a very patient and dedicated family team for this model to work. But for some families, cyber schools are our only choice when our children are “left behind” by a lackluster and even sometimes, corrupt district. Please don’t take away our children’s only opportunity for a public education.

Are you a cyber schooling family? 
Share your story with PA Families for Public Cyber Schools!
Cyber schools are helping our children.  Now here is your chance to tell the story of how cyber schools are working for your family. Please go to http://www.pacyberfamilies.org/sharestory and help us tell your story!

Links:
http://scrantonpoliticaltimes.activeboard.com/t47932005/fred-rosetti-former-director-of-neiu-indicted-maybe-there-is/ 

http://www.goerie.com/iu-hires-new-leader 

http://sharonherald.com/local/x2015912914/Unit-IV-director-placed-on-leave 

http://www.newsworks.org/index.php/local//philadelphia/43024-evidence-shows-state-test-cheating-in-philadelphia-schools-likely-far-worse-than-previously-revealed

Return of the Salem Witch Hunt

Mass Hysteria: Anyone with Mental
Health Issues is a Dangerous Killer

I couldn’t help this week but to draw a parallel to the witch trials with the mass hysteria caused by the irresponsible and unethical media. The people are now shouting from their social media rooftops – “hang them – they are killers!” If that were not enough, hate mongers posing as religious zealots are lighting other’s torches preparing for the hunt.

Much like the days of the Salem witch trials, people want a solution to end the wickedness (violence) society has brought upon itself. And our sensationalized media has been delivering by offering a scapegoat – people with developmental disabilities and mental health disorders. Let the burning and hanging begin.

No amount of real data can deter these convinced witch hunters. No, anecdotes and speculation are all the proof they need. “My friend’s sister’s cousin works with these people and she says they are just dangerous.” So it must be true. And then of course, some Bloggers also chime in with their pained stories of how hard it is to parent these awful children – “don’t you feel sorry for MEEEEEEEEEE?” I mean, if it’s on the internet, it must be true, right?

(The answer would be no. No, it’s not true. Data doesn’t lie – but people do.)

Ironically, those with mental health and other developmental disabilities are less likely to commit violent crimes than typical folks. But you’ve heard this before. Yeah, I know – your BFF’s dogsitter’s sister-in-law said….

Some statistics from the American Psychological Association regarding the mental health of the United States:

  • Published studies report that about 25 percent of all U.S. adults have a mental illness and that nearly 50 percent of U.S. adults will develop at least one mental illness during their lifetime. (CDC)

That’s a lot of people who are potential killers. And well, 50% pretty much means either you or someone in your home will eventually have a diagnosable mental health disorder if not already. That number doesn’t account for the developmental disabilities also being accused. Better take cover or warn your spouse – you might be living with the Devil’s Spawn!!!

In all seriousness, this hysteria must stop. Remember what happened to a society who bought into the witch trials? It is happening again for people with disabilities. Real people are being targeted this week. They are being told they are killers, and worse – that they should be killed. Children are shouting horrible things to their disabled peers in school. People in store check out lines are viciously discussing how we need to lock them all up.

Each one of us is susceptible to being labeled with a mental health disorder in our lifetime. That does not make us more likely to commit premeditated murder. In fact, it makes us all the more likely to become victims by the hand of an otherwise sane individual.

This is not to say that mental health should be ignored. Far from it. Our society is less likely to seek help for mental health issues because of the stigma associated with a diagnosis. That needs to change. People should not fear seeking help from a psychologist anymore than they fear obtaining an eyeglass prescription from an optometrist. As the statistics show, half of us will need to seek help for our mental health at some point in our lives. HALF. Though I’d guess more than half need eye correction, that’s still a lot of people.

Take a deep breath. Clear your mind. We don’t need to figure out why this happened. We do, however, need to take active measures to stop it from happening again. But that doesn’t start with creating mental health concentration camps or institutionalizing people based on labels. It starts by changing the way we as a society tolerate violence for entertainment. It starts by rethinking weapons laws and accessibility. It starts by realizing we are all human and not infallible. And it starts by letting the families in Connecticut grieve without fear that their loss started the biggest witch hunt since 1692.