Tuesday, February 25, 2014

The Fascists of Massachusetts....Can what is happening to the Pelletier family, happen to you?

One of the greatest unspoken fears that any parent of a special needs child lives with is that the State decides that they know better how to care for your child then you do. That when you disagree with doctors or hospitals, they in turn will call in the child welfare authorities and rip your child out of your arms. This scenario is playing itself out in Massachusetts with the Pelletier family.

Their 15 year old daughter, Justina, like her older adult siblings, has been diagnosed with mitochondrial disease. She, like her siblings, was being treated for that rare illness. Her disease was diagnosed by Tufts Medical Center doctors. One of the top hospitals in the nation. On a trip to Massachusetts, from their home in Connecticut, she became sick and was taken to Children's Hospital in Boston. Where upon a neurologist decided that her diagnosis was all in her head and refused to treat her for mitochondrial disease. The parents hearing this insisted on a second opinion, whereby the doctor and hospital called in child welfare services when the parents went to take their then 14 year old home. The hospital immediately went to court and had the girl committed to their lockdown mental institution where she has been for over a year.

Her parents were only allowed minimal contact, once a week visits, and two monitored phone calls. In fact the Girl had to devise a way to tell her parents what was going on in the institution in secret, because when she told them about events with nurses listening, she said she would be punished by staff after her parents left. The father has been on television, radio and in the newspaper trying to garner support for their position. The hospital actually went  to court and demanded a gag order on the proceedings, which the father violated. He said, its his daughter and he will talk about her case if he wants, despite any court sanction. Apparently  in this brave new world, if the state can take away your child, they can deny your freedom of speech to talk about your child and your legal proceedings as well. Of course the Massachusetts judge who ordered the gag has brought criminal charges against the father.

Meanwhile, for the past year Justina has received no medical treatment for her mitochondrial disease. Instead she is being treated with psychiatric medication and behavioral intervention therapy.  She is without a doubt medically fragile according to her parents and their advocates.

Yesterday in a court proceeding, where the parents thought they were going to get their daughter back, the judge instead deemed them unfit parents and moved their daughter permanently into foster care. She is to be moved from the mental institution within 48 hours to an unknown foster care location on Boston's North Shore. So this Massachusetts judge has ordered the severing of ties between this Connecticut citizen (someone with no ties whatsoever to the state other than she was on a vacation trip at the time of her illness) and her parents. Her mother had to be hospitalized after the proceedings.

Meanwhile, I wonder what the State of  Connecticut is doing to protect the rights of its citizens in this case? Anybody? Anybody?  Has someone ever spoken to the Connecticut Attorney General about this situation? Afterall, this family sought treatment for this child at home and obviously sent her to school in Connecticut. What does the school district have to say about what happened? I am hard pressed to believe that Justina did not receive some kind of accommodation for her education considering the nature of her disease. Are those persons in Connecticut that are attached to this girl, either as educators or doctors, now accepting the fact that according to Massachusetts they are accessories to child endangerment and abuse? Are they accepting the fact that they are now liable under law and can possibly be brought up on criminal charges, never mind losing their professional licenses?

This is not China, the Soviet Union or a totalitarian nation. This case is happening right here in the United States in the State of Massachusetts. A state that has one of the most liberal-progressive governments in the country. A state that is held up as a symbol of proper government and true humanitarian reality. But for the Pelletiers nothing could be farther from the truth. The Pelletiers are living through a true dystopian nightmare with the health of their daughter caught between the egos of doctors, hospitals and self-righteous judges.

Here is an article from Boston.

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When MrGS was very little, we had had a huge disagreement with his diagnosing psychiatrist about a medication. He had prescribed risperdal for him.  After two days of taking the drug Mr. GS, as a 9 year old, said he felt like he was going crazy. We immediately threw the medicine in the garbage.  At the time one rare side effect of this drug was psychosis, which it actually seemed had effected MrGS.  (Recent lawsuits have proven that there are other harmful side effects to this medication that can occur.) The doctor was rather incensed that we stopped the risperdal without his permission. (He would have insisted we keep him on the med to see if the side-effect passed.) In fact, he kept trying to get me to put Mr.GS back on that medication. I flatly refused. Then after some other unpleasant incidents, where I called him on not following through on promised supports and therapies for MrGS,  this psychiatrist told me to go to another doctor, which I gladly did. But what would have happened if he had called the child welfare authorities because of our disagreement, saying I was abusing my child because I wouldn't listen to his diagnosis, follow his medical advice and wanted to talk to another doctor? What would have happened if someone in his office had done the same? At the time it had never occurred to us that anyone would threaten our parental rights in any way when it came to medical decisions for our children. It truly seems that times have changed.

Over the past two decades I have gone up against educators, doctors and therapists when it came to both of the boys. We had been told more times than not that the boys cannot do something because of their autism. I have had social workers, psychologists and educators tell me that my sons were inadequate, incompetent or emotionally unfit for certain realities like partaking in the school play....you know since those with autism can't act; or they shouldn't go to law school because its to social; or that MrGS should be an archivist since he liked history, it had minimal contact with other people, and that his anxiety was too debilitating for law. They seemed to have no out-of-the box-idea and only pushed computer science, since they all thought that this field was the only place for the aspergean mind and was best because it has minimal social interactions. (FYI, Mr GS decided to study computer science because coding makes him feel like a wizard. Meanwhile we have subsequently learned that it is also a majorly group work, aka social, oriented profession.)

We had been told to push them in one direction educationally simply because they had autism or even due to their generalized anxiety disorder, instead of where they wanted to go. These "professionals" decided to judge the children by their disability and not by who they actually are. You can bet if we didn't agree with a recommendation it didn't get done. We, as their parents, had the final say on what was best for our child. Or at least I thought we did. Luckily, they are both adults now and there is no fear of some stranger making life altering decision for them or us. They, with our guidance (luckily), make their own daily decisions concerning their health and their future. They decide what they want to study, what goals they want to accomplish in life, what they believe (religiously, morally, ethically and politically) and what direction they want for their life.

Now unfortunately there are also stories that circulate every year about school districts that also threaten parents with child welfare services if they bring lawsuits or refuse what the educators have decided is best for the child.  It is beyond appalling to threaten a parent for demanding their child's civil rights be respected and in many ways such threats could be seen as criminal (conspiracy to deny someone their civil rights). These scenarios are terrifying. Not the least because we have challenged our district on a number of occasions due to the  incompetence of several educators. (Yes even in my district, which is a terrific place to educate your child, there are always bad apples.) And we know the uphill battle it is in the first place to fight this fight. I couldn't imagine how hard it would be to have this despicable threat hanging over your head as well.

One memorable experience (I could give you chapter and verse about each and every event), was when CM2 was in second grade and we had to actually threaten a lawsuit against the district. Apparently lo and behold the new special education teacher they hired that year had "cured" CM2 of his disability. He decided, along with the new Vice Principal of the elementary school (who had hired him of course), that my 7 year old autistic child didn't need any more special education services and should just be monitored for issues. No special education, no para and no collaborative program. They were going to put him in a regular classroom without any kind of assistance whatsoever. In fact they had decided that since the IEP at the time didn't mention specifically that CM2 had aspergers, even though all the testing did indicate autistic-like issues, and I had told them that he had been diagnosed with the disability, that he didn't have it and they didn't have to act upon it. The district director was none too pleased with that revelation when I told her about it.

The reality was, in fact, that CM2 had gone backwards in his functionality since this idiot of a teacher had taken over his program. CM2 had lost social skills, had no ability to understand simple instructions without support, had terrible comprehension issues, was decidedly less independent, and had an anxiety level that was off the charts. His inability to function was so bad in truth that the regular education teacher was the one who had given me the heads up as to what  the special ed teacher and vice principal were trying to do so I could stop them.

This self-important jackass of a teacher had decided he knew better than everyone else who had ever worked with my son, including the highly regarded autism specialist from first grade who had created CM2's behavior and education program in the first place. He dumbdowned CM2's program and goals (that is why I am always adamant that goal setting should be a challenge for the child and not something easily mastered), against my wishes and in violation of the IEP. He had decided that since my son could do his rote math facts and spell at an incredible level that he had no reason to be designated. Now if we lived somewhere other than our little hamlet, it is quite possible that  instead of listening to me about what was the truth of the situation, the district director could have simply backed up their teacher and vice principal (as many do right or wrong) and called child welfare on us, or at the very least threatened  to have the boys taken away if we didn't follow their "sacrosanct" ideas.

Instead this was the general reality in our district: "Fighting the Good Fight Part II- Starfleet We Have Engaged the Borg"

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Honestly, I don't know what is going to happen in the case of the Pelletiers. I pray that there is justice in this case and that Justina gets to go home and receive the real medical care that she needs. I find it, as many do, simply incredulous that one doctor and one judge can take your child away simply because they have a disagreement with other medical professionals and that you, as the parent, don't get to choose, with which perspective you happen to agree.

Many question if there are ulterior motivating factors in this case. But I truly can't speculate. The reality is that Justine comes from a loving family that was trying to do the best for her, as they had done for her siblings, who  by the way are thriving. With all the children that are in fear for their lives and in danger of true unmitigated abuse, it really seems a waste of Massachusetts' time, energy and above all the State's  limited resources to destroy this family. Something does seem very rotten in Massachusetts.


Elise


Ask Marion regularly updates Justina's health. Justina is in extremely poor health, the port in her colon is infected and she is suffering from sepsis, which apparently the DCF was not treating until her mother demanded intervention.

NOTE: I just read about this case in Alaska, where a 27 year old man was taken from the care of his parents and put into state custody. The article does not say if the man in question was a person with a special need or a typical adult who simply had some very bad reactions to medication and was unable to make medical decisions for himself at the time. However, this goes back to one basic CAVEAT I always tell parents when their child reaches 18-years-old. Even if your child is not going to go into a custodianship you need to have them sign a healthcare proxy designating YOU as the person to make medical decisions for them if they cannot. In this Alaska case when the parents went to court to seek healthcare rights for their 27 year old son the hospital intervened and the court sided with the doctors claiming the parents were a threat to their adult child. I have always told people that simply because they are the parents does not mean the doctors nor the courts will side with them when your child reaches their majority. Like in the Justina Pelletier case, the issues began when the parents questioned the treating physicians and wanted a second opinion. Something, by the way, which is your right under law and something your insurance companies always tell you do to in the first place.

UPDATE 2/26/14: From The Blaze

Justina will not be transferred from her facility in Framingham to a foster care facility in the North Shore. The facility refused to take her citing the publicity surrounding the case.  Additionally, Republican law makers in Massachusetts are circulating a resolution that would have DCF return Justina to her parents.

State Reps. Marc Lombard and Jim Lyons, both Republicans, announced on Wednesday that 12 representatives have already signed on to support the resolution.

“The self-stated goal of the Department of Children and Families is to strengthen the link between families. Removing a child from her family is reserved for only the most egregious circumstances where evidence of malicious intent, negligence or the blatant inability to care for the child is present. No such findings are present in this case,” Lombardo said in a press release.

Lyons argued the Pelletier case is a “dispute between conflicting medical opinions” and treatment decisions should be left to parents, not DCF.

My question: Why aren't Democratic law makers incensed about this case and why aren't they signing onto this resolution? Do Democrats really think that parents are unable to make medical decisions for their children or that children belong to the State and not their families, as some leftist pundits have said? Could it be that they are really more interested in supporting the Democratic controlled government administration (Deval Patrick), which appoints the head of and administers  DCF,  than "Justice for Justina" and protecting the rights of families? Afterall it is an election year and it is Party uber alles isn't it? Apparently there has been a resignation demand by the GOP put forth against the head of DCF. But this does not come because of Justina. The DCF is embroiled in another controversy where they actually lost an endangered 5-year-old who is now presumed dead. 

And yes before you say anything, the Republican resolution may be part of the present election cycle as well, but at least it would actually help Justina and her family instead of perpetuating the cycle of incompetence that surrounds DCF. So while the GOP too may have ulterior motives, in the end, if they can force the issue with DCF, the immediate outcome will be good for the Pelletiers and also reestablish some semblance of parental medical decision-making rights in Massachusetts. Which will be good for individual liberty as a whole.



Monday, February 24, 2014

Inclusion for those with Disabilties Requires Educating Society

My new post up at Times of Israel

Last week in Tel Aviv someone fired shots into a house that is the residence for people with intellectual disabilities. The government is investigating and every politician emitted the proper soundbite. But no one actually talked about the underlying cause of the incident…lack of education, a refusal to understand how inclusion works and an accepted pervasive ignorance about persons with disabilities. 

Society, all societies, not just Israel, can talk about inclusion and acceptance of those with disabilities, but until you learn to educate the general population with the truth about those who are different, incidents like what happened in Tel Aviv are going to continue everywhere.  Whether those who thought nothing of endangering these vulnerable people actually understand what an intellectual disability means or how those with disabilities function in society is not immediately important, of course. They committed a crime. They should and must be punished.

Yet it would behoove society to try to learn and rethink how it views those with disabilities. I am reminded of what actually happened when they brought my oldest son back in district in our little hamlet in the USA. He had previously been assigned to an autism only program. It truly was a good situation for him and helped him get over some debilitating hurdles. In the meantime he had progressed and grew as an individual and that placement was no longer appropriate for him. It was time for him to be included in a regular classroom.

Now here in the USA there are many different manifestations of classroom organization when dealing with students with disabilities. Our school district devised a collaborative teaching program with one-to-one support for him and several other autistic children. This means that at any given time in a class of 20 students there were at least 3 adults in the room; the main teacher, a certified special education teacher and one paraprofessional (there could be upwards of 3 paraprofessionals if needed). Meanwhile there could never be more than 5 students with disabilities in that classroom, so everyone received the needed attention, and those students without educational issues would receive the education that they were also entitled to receive. You might assume that a thinking parent would be overjoyed with the added adult support in the class. Well you would assume wrong.

Needlesstosay, all hell broke loose among our very liberal-progressive neighbors. The “not in my backyard syndrome” reared its ignorant and ugly head. Meetings with the school district were called. Lawsuits were threatened. My highly educated neighbors called my son names you don’t call an adversary, never mind a disabled child. Luckily here in the USA there are education and civil rights laws to protect children like my son. The district was in their right to include him in a regular class setting. So my son’s right to an education was protected. But the people that live in the district never forgave him for having the nerve to stay here to be educated. Parents made sure to exclude him from every aspect of childhood and did their best to alienate our family. (We stayed because the school district itself was doing right by our children.)

Read the rest HERE.

Saturday, February 22, 2014

Skills, Skills and More Skills

An interesting event happened the other day for MrGS. He met with the professor in charge of an "internship" program at his college. What happens there is that work assignments are given to groups of students and they have to collaborate on getting the projects done. It sounds perfect for him. He gets to use what he is learning in school in a practical way, and also learns how to function in a group setting, which has some very real world applications. We sent in his resume and are waiting to hear back. Hopefully everything will start this coming week.

One of the fundamental issues we are beginning to face, and its a real world issue and not one simply for those on the autism spectrum, is that employers want to see how well a person would function in an office, before they actually get to the office. Grades say one thing, but showing that you are capable in a work environment is an entirely different animal. Problem is that if you don't have the chance to show how you would function by actual employment, you have to think of ways to show how you would function in an office. Of course, Mr.GS does have some office experience, but its the usual entry level basic job. It doesn't show that he is any different than anyone else his age. Luckily those jobs have been computer-related, just not computer-sciencey. I say it shows he is able to have a job, hold a job and do it well.  But it's a rather interesting catch-22 and one all our 20-somethings are facing daily (not just aspergeans).

In fact, last semester when Mr.Gs went to a job/internship fair, the first thing one of the presenters wanted to see was his "portfolio," or a list of jobs he has done or projects he has worked on. Honestly since he just started in computer science there is nothing that he has done outside of taking some courses. Everything he has on his resume is related to history. Not that that is bad. In fact his thesis is a huge accomplishment and shows an ability of stick-to-it-tiveness and also that he is also a hard worker. Something, I am certain employers would respect.

In fact, the interviewing professor said that he could tell that MrGS is a very hard worker and very responsible too. Which, quite frankly, is the truth. He is quite driven, as several of his computer science profs have already commented. In fact they said they have not seen someone so young so driven before. In truth, Mr GS has always been driven. It has been his saving grace. He set his mind to functioning in the neurotypical world and he has been working on it since he was a little boy. He doesn't give up. It's an old story but one I like to tell. When he was in second grade, his teacher mentioned to me that I should let doctors study MrGS to see what the "spark" was that makes him function in the real world. You need to understand that MrGS' PDD was very debilitating up to this point. He had gone from an interactive child to a withdrawn boy with many severe-autistic-like characteristics. She felt that understanding what happened and how MrGS became so integrated into the world would help so many others. I responded, its him, simply him. He set his mind to being able to function in the world and that was what he was gong to do. So yes he has always been driven. Honestly, I think he has always been lucky as well. Therapies, educational supports and medication really have worked to help him.

Meanwhile, back to the issue at hand, as with everything else in this world, even computer science internships are very very competitive. So I am hoping that this ups the ante for him in a good and positive way. He would also see how everything he is learning can be applied and then the biggie of course is the collaboration. The hubby looked up information about careers in the video gaming industry (because that's what the boys want to do, along with getting them interested in cyber security, because that's where the jobs really are right now) and every book or article emphasized that its a very interactive field. Collaboration is the mainstay. Well that shocked us for certain. And I think that would shock most people.

Our perspective on computer nerdlings is that that they are all anti-social introverts working away for hours at a terminal without a care about other people. Funny that, it's just the opposite. Collaboration and social discourse is a huge part of the process. Being able to bounce ideas off of other people, seeing how others react to your work and whether an idea is viable is a very interactive process. No one can function alone in this society and even computer geeks know that. In fact, if you think about it, it makes sense. No great science has ever happened in a vacuum. Every major development along the way had hundreds of hands and thousands of human-hours inputted. No one idea is truly the work of one lone person. No, even genius doesn't work alone, ever.

So the next time someone tells you that your aspie would do well in a computer related field because there is minimal social interaction tell them they have no idea what they are talking about. Everything they do is related to how they function with others. In fact, its more of a job requirement than being able to write code and redesign a website.

It's interesting really, how as the society becomes more and more dependent upon technology and technology makes our lives so much better, we are not really the social misfits that many in the psychology and sociology fields would have us believe. In reality, the use of technology makes us more interdependent than ever. As our world becomes "flat" and we accept the fact that we need each other on a global scale, we are required to learn to work together in more and interesting ways. In truth, what technology has done is actually taken us out of our selves and turned us outward toward the wider world. It's an interesting time. We, as parents, just need to make sure, that for those who have trouble with social interact, like our aspergeans, that they learn the necessary social skills so as not to be left behind.

And yes, the para will be going with MrGS, so as to facilitate any social issues that may arise. That is also part of job coaching. It's a needed avenue that has to be explored. In fact during an autism conference last year for the Jewish Federations, the Autism Science Foundation did a presentation talking about how adults on the spectrum needed more job coaching and supportive environments in the world place. That the one thing that tripped up those autistics who lost jobs, was the social aspect of their office. The work they could do, but its the human nuances that they simply didn't get. Anyone with experience in the autism world knows that supports and teaching doesn't end when the aspergean stops using that yellow school bus. Each new experience has its own issues of social development and that our children will always need that little extra support to help them understand the world around them. Yes, one day they may be able to work it through themselves, but that is an individual advancement, much like autism itself. Autism is not the same for everyone, and their employment/social development won't be the same as for another aspie either. So remember, as I always tell parents,  do what is best for YOUR child, or YOURSELF, and don't worry about what someone else (especially if that someone has no idea about autism and is just a pendajo), thinks, ever. Yeah, I know, advocacy never ever stops. It's simply the nature of the beast.

By the way, the professor in charge of the program didn't even blink an eye when the para showed up with MrGS. He just took it as a given. And the prof, in good form, talked to Mr GS the entire time. The para was superfluous during the conversation, as in reality he should be. But that means you also have to have an understanding boss, accepting compatriots and a workable environment for an aspie to be successful. Happily, the one thing the para told me is how inclusive and understanding the professors and other students are at this school. It's what you hope for when you talk about inclusion and understanding for those with autism. I don't know if it's because everyone is a little different when it comes to the STEM world or if they simply don't care about someone's issue. They simply care about a persons' smarts. It's not a beauty contest but a brain contest. So when MrGS has an anxiety attack or gets overwrought because he doesn't understand something at the speed at which he thinks it should be understood, they don't care that the para is there is help him reason it through (again part of life and job coaching). They accept him for who he is and for what he can accomplish.

So we shall see what happens next week. Since MrGs didn't hear from the professor about his resume, he needs to send a follow-up email about next week and when to show up and where. This too is a skill that needs to be taught, and not just taught to aspies. Job search etiquette is something everyone needs to learn. It's why there is job training for everyone through all career centers on every college and university campus today and why "job counselor" is a growing field.

For a better understanding how the boys' minds and personalities work, and why there is the need for the para right now, read Id, Ego and a Sense of Self. 

and


Employment: What is too much support and what is not enough 
Job Interview Skills, and an Unexpected Epiphany



Elise

Friday, February 21, 2014

Unconditionally

Another song that speaks to me of how much I love my sons.



I love them unconditionally; without hesitation, with my entire body and soul and would walk thorough fire to ensure their future. Lets see the world try to stop me.....


Elise

Wednesday, February 19, 2014

What is an Autism Spectrum Disorder and What is Aspergers Syndrome?

From the National Center for Learning Disabilities




This informative Ask the Expert video offers top line information about different disorders that fall under the Autism Spectrum (ASD) classification. Learn about the core features of ASD and become familiar with the specific areas of challenge that are hallmarks of this category of disabilities at http://www.LD.org/autism. For more information about each of the specific ASD conditions mentioned, or to build knowledge and access resources about learning disabilities and related disorders of learning attention and behavior, visit http://www.LD.org.

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(This is a repost from July 2013)




This Ask the Expert video provides an overview of Asperger's Syndrome and offers insights into the characteristics of individuals and how they differ from, or overlap with, other disorders that impact learning, attention and behavior. Visit the http://www.LD.org site for more videos and helpful information about LD.

Tuesday, February 18, 2014

Assimilating the Guilt

Guilt. It’s a really interesting emotion. Jewish guilt has provided hours of fodder for comedians, and paychecks for therapists and rabbis. Jewish guilt especially has an unusual way of creeping into the daily life of parents. But until you have a child with a special need you have no idea how all consuming guilt could be. You continual second question everything you did during pregnancy and beyond. 

What did you eat? Did you take enough prenatal vitamins? Why did you have to take that Tylenol and could you have done without that antibiotic for your bronchitis? Did you avoid enough caffeine? And why oh why did you listen to your doctor and allow yourself that one glass of wine a week?  Was it the pregnancy yoga or Pilates that caused the glitch in your child’s development? Should you have just walked instead? Or should you have biked more, ran longer or tried the latest exercise fad? Should you not have had that epidural, or should you have had that epidural? Should you have used a midwife instead of a doctor? Have a home birth instead of a hospital? Should you have breast fed longer, not breast fed so long, used a different formula or had a better feeding schedule? Should you have used a different brand of baby food, not been so lazy and made your own, or maybe you shouldn’t have listened to your grandmother about when to start the baby on solid food? Was your child’s disability really caused by the fact that you live in a city, or that you waited until you were in your thirties to get pregnant?




Monday, February 17, 2014

God, Society and Autism: Can you assimilate the anger? Do you even want to try?

I have written on occasion about the anger inherent in learning that your child has an autism spectrum disorder. Whether you rail against injustice, nature,  God or man's disrespect for the environment, you know that your child did nothing in their short little lives to deserve having to deal with a developmental disability. You know that you have done nothing so evil that God should feel fit to punish you through your child. Yes, we all have had moments when we sin, afterall that is what makes us human, our fallibility. Yet with the overabundance of evil in this world, you could possible chalk your sins up to a missive or an oopsie daisy on the scale of the things that would piss off the Almighty. So at some point we make our peace with God, or sometimes we don't, that of course is a personal decision. Personally, while I remember the exact moment I let go of my anger at God, it happened to be a Yom Kippur years ago during a illness scare I went through, I have not forgiven him for the trials he decided to put my sons through.

I think one of the most annoying statements people tend to say to you when they are confronted with your reality is,  "God only gives you what you can handle." But those of us who live in the world of special needs actually understands that no, no he does not. Sometimes he pushes you to the breaking point and as a human being you do break. We are not all Jacob fighting the angel of God through the night and winning. We cannot all be renamed Israel, God's chosen. We are not all prophets being able to assimilate the meaning of visions or understanding the purposes of God.

In all honesty I think at times, God is just an ass if he really exists at all. For that I point to the story of Job. Betting the devil that Job would not abandon him and allowing the devil to destroy Job's life is a real putz move. To think that God's abandonment of Job is forgiven simply because Job can be given more money, and another family is ridiculous. All that is new doesn't bring back or remove the heartache and devastation that God permitted.  In my book anyone who continues to believe in, or honor someone, or something, that is so abusive towards  those they love and gave life (for God gave humanity life) needs a good therapist and some self-esteem therapy.

There may be the concept of free will, but I have yet to meet anyone of quality who wishes disease, death and terror on the innocent. I know that Christianity, unlike Judaism, assuages this human need for an answer by creating an explicit afterlife, where those who are truly evil spend eternity in hell, and those with pure souls, especially the children go to live with God. Sorry, but that just doesn't suffice. And not simply because I am Jewish. The idea that a loving God would be so cruel doesn't fit in with my purposes of human existence. It is the lazy person's way to answer that which is unanswerable. It is the lazy way of dealing with the idea that God is simply at times a real schmuck.

I am tired of people telling me not to blame God for evil. Oh and don't tell me about the devil either. They are merely  different sides of the same coin. An unreasonable answer to unanswerable questions. The idea that God made mankind and that mankind is solely responsible for the outcomes of their lives, but we are still beholden to this omnipotent being is illogical. The reality is that human beings are responsible for the choices they make and for the lives they lead. You can pray all you want, but there is no answer forth coming that you do not create yourself. Society chooses which path it is going to take, and a God, or God, has nothing to do with it. So I see no reason to worry what God has to say on the matter of choices.

Then of course comes the next level of anger which is completely directed at society. When we started our family's journey through the world of autism it was not easy. Society was cruel. The world that we had built for our family crumbled and those around us were the reason. The schools, the synagogues, the doctors and even the civil rights groups abandoned our child and considered him unworthy of their largess. It is hard to remember those days. It is hard to forgive those adults who thought nothing of being evil to a very disabled little boy. Sometimes I dream that they actually would be rewarded with the life that they deserve. But I doubt it. I don't think in many ways life works that way. It's almost as if the more evil you are, the more sought after aspects of life, life gives you. When you have former Nazis collaborators who become billionaires, who actually control the politics and attitudes of societies, while manipulating monetary policies, you know for a fact that there is no justice in this world. When oligarchs, tyrants and mass murderers walk away unpunished, while running human rights committees and actually get to redefine human rights for the world, you know there is no justice in this world. When terrorists are lauded as saviors, heroes, given stipends and have towns in Europe named for them you know that evil wins.

It's the same with those that bullied MrGS in school. They went on to good schools, college and sports scholarships and even national acclaim on occasion. It is difficult to watch these horrible people be lauded as some great human being when deep down inside you know just how despicable they happen to be. And no I don't forgive them because they were simply children or teens. By the time you are old enough to drive you know enough about right from wrong and know enough not to be cruel. When a teen chooses cruelty that is who they are and who they will always be. (The enlightenment of the character of Penny on The Big Bang Theory, when she understands finally that she was a bully, is not reality. It is the wishful thinking of some hopeful parents that is all.) You know these bullies will be showered with money, friends, jobs and the protection of society with ease. Meanwhile, you fight for everything you child has and continue to fight for their rights to just be considered human.

This is actually where I have trouble assimilating the anger.  I know it does me no good to dwell on how unfair this reality happens to be. I know it does my children no good when I obsess. But would I not be a descent parent if I wanted my children's torturers to be punished in some way for what they did? Not that I have the power to punish those that hurt my sons. OK yes I wish I did. I know every parent understands what I mean. I suppose that is why I always felt closer to the Sith then to the Jedi. Does that make me evil, or does it simply mean I, like everyone else on the planet, including my sons, are human? We want those who hurt us punished and if society doesn't do it, we want to find some way to do it ourselves.

I know ultimately the idea of forgiveness is for your betterment, not for those that hurt the ones you love. But I am not ready to give up that anger. I think channeling the anger helps in many ways to try to prevent society from closing in and taking from the boys their God given right to be considered human beings first and foremost. (Yes I get the irony here. But then again I never said I didn't believe in God, I just think he's a schmuck.) I know channeling that anger makes me a better civil rights defender and a better advocate for the boys. Does channeling the anger make me a better parent? It makes me more protective and more attuned to those who would subvert the boys' progress. It gives me the strength of character to stand up for what I believe in and to push the envelope for them as well. Does it take me from a touchy-feely kind of motherhood? One where I lament and cry and woe-our plight? Thankfully in many ways yes. But it doesn't mean you aren't there to do what is best and right for your children.

In fact I think it directs your energy where it needs to go to do the best by your children. When you let the anger guide you, it means you no longer trust the world around you and when you don't trust society you are never sideswiped by the cruelty and the lack of caring and the hypocrisy. This way you will be strong, ready and prepared to do what you need to do so that your child doesn't actually need society's blessing or largess to exist. Your child's existence will be a positive one not because society has finally decided that they are allowed to be considered people, but because they have been taught how to fight for themselves in the world's arena. You, as the parent, will have given your children that strength of character needed to succeed and strength of purpose to make for themselves the good life that they deserve merely by virtue of their existence as human beings.



Elise

Saturday, February 15, 2014

Happy







Because........


Make sure for more fun go to Pharrell's 24 hour video.....




Come on clap!!!!!!



Elise

"Can't Remember to Forget You,"... This is not female empowerment

Watch the new Shakira and Rihanna duet. They are both tremendous talents. The song's got a great beat and a terrific vibe. Just don't get the need for the raunch. And yes sex sells I know. But there comes a time when a successful woman should really be able to say "no," and produce classy art instead of giving into the baser instincts of objectification.




And yes Shakira is known for her belly-dancer-like-hip movements, and Rihanna has always been just a little over the top, its their signature styles. But they also would have done young women a better service if they used a different theme to sell this song.


By the way, I had the same issue with Britney Spear's last video. She claimed that the director kept pushing her to be more sexy.  So she ended up with a sado-masochistic video that actually debased her as a person. What truly self-possessed woman thinks that being a dominatrix is healthy, fun and empowering? I find it simply sad and quite emotionally nullifying. Who thinks allowing someone who wants to be intimate with you, call you a "bitch," is part of romance and seduction, or makes the act of sex an equal partnership?

Just so you don't think that I have it in only for successful women artists who denigrate their own gender, I have no love lost for Robin Thicke and his rapey music either.

Also what is it with women-friends calling each other "bitch," as if it has some kind of positive connotation? Our young women need to stop buying into today's music culture and we need to teach our young men what respect for women, self-respect and honoring those around you, happens to mean. We cannot  allow our children to use this modern society's  soul sucking debasement of females, the glorification of irresponsibility, and denigration of hard work, self-respect and human ingenuity, guide their future.

Yes I know I talk about embracing your "inner bitch" to get what your child needs. But it's an in your face look at the world. A turn about is fair play use of the misogynistic acumen that women are thought of as either subservient/docile or bitches (no in between demeanor allowed) to your child's advantage.

Moreover, what's wrong with young successful women today? Didn't anyone ever teach them to use the word "no?" For an interesting answer to that question watch the video, Feminism 2.0 .



Elise

Wednesday, February 12, 2014

See the Human Being First Not the Disability

My first post up at The Times of Israel

*******


I am asked over and over what is the hardest thing about raising a child with special needs. Undoubtedly, the biggest issue is that when you deal with a person who has an invisible disability, like autism, society can be very cruel. The world talks a big game about acceptance and respect for differences, but in the end, “square pegs cannot fit into a round hole” and society punishes them for their divergence. 

Invisible disabilities are greatly misunderstood. I suppose it’s easy for society to get a handle on someone with physical limitations. Society has concrete methods in dealing with access and modifications of surroundings for those unable to use conventional methods to get around. But when society is confronted with an able bodied individual, who functions with a different brain-operating system (autism), society simply shuts down and shunts them away. Pushes them to the fringes. Out of sight out of mind.

Oh society pats itself on the back that they have done a tremendous thing allowing persons with disabilities into their schools, professions or legislates their right to live in neighborhoods. Yet no one really ever takes the time to try to understand persons with autism. They do not take the time to understand the idiosyncrasies of who they are and why they are just this little side of different. Because “different” scares people. This fear is then passed on to their children. And, society teaches children to shun those that are dissimilar. In reality, when someone is a little different, we keep him or her at arms length and turn them into that boogeyman from our childhood. The result is to malign, ignore and alienate those with invisible disabilities. Society ends up seeing only the disability, forgetting the human being before them. In the end, society’s disenfranchisement becomes an actualized form of bullying.

Tuesday, February 11, 2014

TED-Ed Lessons Worth Sharing

Ted-Ed

An interesting innovation in on-line learning. Here TED presents snippets of information and supplies lesson plans to be used by an educator, a parent or for someone just wanting to expand their ability to think, understand and  enjoy the world around them.

Here is a sample lesson:

How to build a fictional world.....



If you click on the link at the beginning of the video it takes you to the entire lesson plan. There are four categories:

Watch
Think
Dig Deep 
Discuss

Each with its own agenda and purpose.

*******

Here's the history of the world in 18 minutes...



Get the entire lesson, including the four categories of questions and ideas HERE.


Explore.

Learn.

Enjoy.


TED-ed  is actually a very interesting idea. One definitely worth sharing.



Elise

Be Sure to Not Always Jump to Conclusions

If you had read my previous post you would know that I was fairly upset about a meeting the MrGS had had with the career counselor at school. I left a rather convoluted message for the director of career services and she called me back later that afternoon. Of course I fumed and fussed all weekend about this meeting. Imagining all sorts of insult from the counselor. Well, it turns out, I was wrong.

Yeah I know. I really didn't get the jist of the original meeting and when talking to the director I grew to understand what the purpose of many of the suggestions happened to be. It wasn't that she looked down on MrGS because of his disability, but was trying to give him advice on how to boost his resume for the jobs he was interested in attaining. One of the issues that MrGS has is the fact that he doesn't have any computer science related job experiences.

Of course, being that he just started his career in computer science, that is not unexpected. However, he needs to find a way to show potential employers, and even those looking for interns are potential employers, that he has the ability to work on computer projects. He needs to show that he can take what he is learning in class and apply these concepts in the real world.

So there is something that his university does for its students by having those looking for help with short-term projects hire from the student body. This way start-ups can get some inexpensive labor and the students can add experiences to their resume. And yes, even though most of the students doing this are undergraduates, it is something that MrGS should be able to do and able to access.

Also I discussed all the odd changes to the resume, which she chalked up to style by each different counselor. To each his own sort to speak. For those we will simply do what we want. The director also told us about a listserv that MrGS could apply to, as well as networking possibilities. The truth is the information that he was given was not bad, it just didn't make sense how it was presented to me. Which means it wasn't necessarily presented properly to MrGS and the para either. But we all live and learn.

It turns out that the career services isn't like a headhunting firm that hands the resume over to potential employers. They help students create a resume, practice interview skills and point them in a good direction. But in the end it is up to the student alone to get a job. That really isn't bad. Now that we understand that, we can work towards the employment goal ourselves.

But as I said, I jumped to conclusions about someone's attitude towards my son, based upon what I perceived to be disrespect for a person with a disability. It turns out, that that was not necessarily the case. While there is still some misunderstanding about a particular recommendation that had been made to MrGS, it does seem that in general the counselor was on target and didn't treat him any different than anyone else.

So just be sure that when you go in, when you think your child has been disrespected, before you start to get your hackles up, make certain you know the entire story. Otherwise you may actually put off someone who was only trying to help and who didn't discriminate against your child at all.


Elise

Sunday, February 9, 2014

A new equation for intelligence: Can it lead to better inclusion?

from TED

This presentation is a little dry, but I think it offers an interesting perspective on intelligence and its inception. In fact I watched it and kept thinking about our children. If we redefine intelligence, where it comes from and its ultimate capacity, this will undoubtedly lead to society's better understanding of those with special needs.




You may think that society is happy to include our children but in reality what I am finding lately is actually a dearth of respect. I am tired of the pitying attitude of society towards those with disabilities (along with the subsequent self-pat on the back for their magnanimous acceptance of our children) It is time that society did see the entire person first and only later the disability. It really is time that our children are not defined by their disability but by their humanity.

Of course when you have an invisible disability, the issue actually becomes one of rejection once the idiosyncrasies come to the forefront. It is terribly disconcerting when a person is allowed into the arena but then kept out once issues arise. Basically our children are kept out due to other's complete and utter ignorance.

Case in point: MrGS went to the career counselor at school last week. Her recommendation to him was to look at a site that promotes employment for the physically handicapped. Apparently either this dope didn't know the purpose of the website or even worse, she thinks that all disabilities are the same. What's even more insulting is she thinks that all he is, is his disability. Instead of looking at him as a graduate student in computer science she only saw an individual with a disability and whatever that entailed in the recesses of her tiny brain. Furthermore she recommended a program for him to join at school that is meant for undergraduates. I can't tell if she thinks he's stupid or incompetent. Then she reworked his resume in contravention to everything his career counselor did last semester. Yes a call to her director will be forthcoming Monday morning. I am also going to call the disability director as well.


Elise

Friday, February 7, 2014

When told they can't use the word "bitch," watch some male heads explode


 Cross-posted at Liberty's Spirit

Do you want to see some inadequate men absolutely loose their minds? Then call them out for using the derogatory term “bitch” during an argument. After reading about Stephen King’s rather, shall we say “bitchy,” take on the Dylan Farrow letter, I wrote this in the comment section:

Calling a woman a “Bitch” is the last bastion of an inadequate man who has lost his palpable ability to argue with reason and intelligence. It is the purview of the narcissistic self-deluded male who needs to go in for this ad hominem attack, which is supposed to disarm and denigrate their female opponent. Little do these spineless neanderthals understand that when they use that word, or its sister the “c” word, that it only empowers us to fight harder and actually lets us know the true underlying nature of the useless man before us.

Needlesstosay many of the male commentors took exception to my characterization of those who use this term against a woman. Told me I was name-calling. So not only did they miss the major point of the discourse, but they whined, having  felt violated by my comment. What they also failed to see was that their screeds actually proved my point.

Questions have been raised by sociologists about the type of men we are raising in the United States. In fact, much has been discussed about education itself and how it is anything but conducive to the male way of learning. What many call the feminization of education has led to a dearth of males in higher education and has led to a dearth of acceptable marital partners for the next generation.

Meanwhile,what it has also led to is males who continually blame women for their problems and issues, while never seeking to improve their own lot in life. Hence the need to call a woman a “bitch” or denigrate a woman’s success. Yes it is part and parcel of the new American catechism of lack of responsibility. But it is also part and parcel of old world misogyny. A confluence of ideas, perceptions and theology, so to speak, that makes it easier for some to disavow their own ineptitude.

This attitude is an interesting reflection of American culture as it evolves or in this case devolves. A man’s future is no longer absolute. They are challenged by women for control of society. They are challenged in every aspect of their daily lives by women who ask questions and demand answers. Women no longer just accept maleness as an excuse for actions and demand responsibility from men for their choices.

Truth is, that in past generations manliness was about taking responsibility and taking care of those you loved. It doesn’t seem that that is the accepted case anymore. In fact there seems to be very little direction for males in American society except to have it pointed out that no matter what they do, they are wrong. That is definitely not the way to raise healthy and functioning adults. It is as if society is telling men they are not allowed to be, well, men.

If you expect your son to grow into a man who is capable and strong for some reason society deems that wrong. Yet if you allow him to wallow that is even worse. There is no happy medium for males in America anymore. Strength and fortitude are looked down upon. Many deem these characteristics as part and parcel of patriarchy. Yet it doesn’t have to be that way. A self-realized man, who understands the new parameters of society and who is willing to work alongside a female partner is someone we should be raising. A man who understands that his goal is life is to enable his partner to choose their own path, while they chose theirs. This “man” is strong, able and focused on life. It doesn’t mean they are controlling or an adherent to the concept of pater familias

A truly strong man is not to be feared, maligned or shunted aside. But is someone we all hope our sons will become and hope ourselves that we choose for a life partner. He is a helpmate, a partner, your ally against the world. He is there to support you in your moments of terror and share your happiness when you succeed. And ultimately your offspring mean even more to him, then either of you could ever mean to each other.

Unfortunately many men in society today though, instead of expanding their horizons and instead of actually deciding to figure out the rules for the future, socially inept men, who have no way of thinking outside their little boxes, decide to bully females with denigrating characteristics meant to disarm, fluster and “put the woomen-folk in their place.” These men employ any negative characterization of females to demote strong, self-actualized  women on the cultural class scale. By the way, don’t make the mistake of assuming that a financially successful male doesn’t fit into this paradigm. It is not about the size of bank account, but a way of thinking and perceiving the world.

While America was always thought of as a classless society, in the sense that England has  a noble and a common class, we have always had an economic sense of ourselves. It is how we judged ourselves. That was our power indicator rather than inherited titles. In America today, that power dynamic is changing merely because more and more women are becoming economically self-sufficient. Society has evolved over the past decades to give women the choice of how they run their lives. This choice may not include males and if  it does, then women require and demand an equal footing in the relationship. This reality threatens many males in our society, who are not, and never would be the equal to any woman.

Truly, a person (male or female) of self-worth has no issue with a shifting power paradigm and perspective. They have no issue understanding that what they have earned is fleeting if they don’t have a way to hold onto what they have created. They understand that they will be challenged by others in life, from both genders. A person of self-worth does what is necessary to retain their success without denigrating those who challenge them. In fact, in many cases, a person of self-worth actually learns from the challenge and betters themselves and their environment.

In reality, using the word “bitch,” is no different from a racial or ethnic slur, which was always used to lift up the user in their own minds eye, against a group of “others” that they feared. Using the word “bitch” is no different from calling someone “retarded.”  It’s purposeful use is to cast a grievous insult, which results in dehumanizing both those with intellectual disabilities, as well as the bullied. Just as the word “bitch” is meant to dehumanize a woman. Males who are losing their power and have decided that the tide of societal change is unwarranted, unfair or completely stacked against them, resort to the most basic of slurs in order to assuage their own egos and their own failures.

Now are these males the ones to blame for their psychology? Are they to be pitied for their own inadequacy? Well in the immediate, yes, on both counts. People make choices about how they deal with discord. Sadly, it is true that these misogynistic men may not have the ability to deal with the requirements of the new social reality where their perspectives are challenged, and need to lash out against their own loss of power. Yet that does not mean they should be allowed to bully, malign or denigrate others. On the other hand they should be pitied in some respects, for society will, and should, leave them behind as it evolves into the next better sphere.

An extremely important note: one of the most wonderful of God’s creatures is a female dog, aka a “bitch.” She is fierce, loyal and brave (not unlike her male counterpart). Remember to never attack her pups or you will be taught exactly what the word “bitch” really means. Don’t Yell Just Embrace your Inner-Bitch