Saturday, September 7, 2013

Stress Kills

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


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" (

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" ( ).
"...caregivers are less likely to engage in preventive health behaviors than non-caregivers and thus neglect their own health" (
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" ( ).
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 (

And our country, as a whole, isn't doing enough to ensure it's people have access to social supports.(

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.

Friday, August 16, 2013

How Not to Abuse the Abused

It's my day off. I need to get away from this bleepity-beep computer. But more importantly, I need to write something about a situation I have been observing. It is a situation where people are locked in an endless battle because of impositions about how someone with PTSD (post-traumatic stress disorder) should behave (feel, really) regarding a situation.

Imposing values or feelings on someone is a dangerous business if one wishes to maintain any semblance of a peaceful relationship. It is even more dangerous, however, when someone attempts to impose feelings or behaviors on a person with PTSD.

These are some rules I believe we should all attempt to live by in general, but especially when we are interacting with someone who has experienced trauma.

  1. We do not get to determine how someone should behave or feel regarding a situation.

    We get to try to control our own feelings and actions regarding a situation. We can never presume, however, what it feels like to be another person in that person's situation. Applying our own logic, values, or feelings to the situation is passive-aggressive abuse of a person with PTSD.

  2. Winning an argument is unimportant.

    Every person subjectively views their world. Our memories are tainted by perspective and individual experience. It is a fallacy that there are "always two sides to every story." There are actually as many sides to a story as there are people who tell it. There is no universal truth.

  3. If someone with PTSD feels harmed, apologize!

    Express real remorse. Even if we did not intentionally hurt the person, the person is hurting. Defending our actions based on principle is going to continue to hurt the other person. So even if we don't fully comprehend how our original actions hurt someone, continuing to defend those actions are blatantly harmful.

  4. Helping someone with PTSD feel safe is the only thing that matters.

    People with PTSD live in a world that is viewed as threatening. Simple tasks most view as benign or take for granted are considered high-risk situations for the person with PTSD. For example, walking across a large parking lot, though does have some risk, is considered safe by most people. For someone with PTSD, this action can be viewed as an inherently dangerous act. Reassurance in the form of understanding and empathy helps - do it! Arguing that the situation is safe or benign is harmful - just don't!
I truly don't know if those who need to see this will. But it is good practice for all of us to follow. Perhaps this can even be applied to the political climates in the world. A little understanding and humility go a long way. 

Tuesday, April 30, 2013

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.

Tuesday, April 16, 2013

From Radical Neurodivergence Speaking: Rhapsody is a Kitty & He Needs Help.

From: Radical Neurodivergence Speaking
Rhapsody is a Kitty & He Needs Help.

I hit my wall very suddenly & unexpectedly and was crying about missing my cat & wanting to go home to my cat, & Rhapsody's human, Jim Sinclair brought *a* cat--Rhapsody. And Rhapsody allowed me to cuddle him while kind of crying so hard I was shaking and it's totally not a cat's favorite at all, to be loved on by someone melting down, right? But he cuddled and purred and probably saved my next 12-24 hours.
Well, now Rhapsody needs help. He's been having scary episodes of respiratory distress and has spent time in the kitty ER. 
Read more here.

Thursday, April 11, 2013

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 and help us tell your story!

Wednesday, April 3, 2013

My April Vow

This April, I vow not to make Autism Awareness about me. I vow instead to make Autism Acceptance about Autistics, like my son. 

I am allistic, a parent, an observer, a bystander. 

I will not "light it up blue."
I will not promote "puzzle pieces."

I will let the people who wear the autistic label define their disability. Nothing about them without them.

Let April be about truly supporting people with disabilities instead of advocating for the families - the parents. 

This has never really been about me. 

Join me and take the pledge to only attend, speak at or otherwise participate in autism panels, conferences and events that meaningfully involve Autistic people.