Tuesday, January 28, 2014

Live Like a Warrior

I regularly post music videos that have meaning...this one spoke to my autism-warrior-parent....





I happen to like Matisyahu's music too, just in general....here's some of my favorites.








Then there is this one he did for Friendship Circle:



Love how they totally rock a  Stars of David Israeli keffiyah. Read about it at Jewlicious...



He changed his look recently too....




Yes its the same singer. Matisyahu.  Guess it's the beard that makes all the difference in the look.



Elise

Sunday, January 26, 2014

Holocaust Memorial Day

This picture haunts my dreams.

Read: Will the Jews Ever Be Forgiven for the Holocaust?


January 27 is the annual Holocaust Memorial Day. This date was chosen by the United Nations because it is the anniversary of the liberation of the Auschwitz death camp.  Social Acceptance, Humanity and Autism was written to commemorate this day and Holocaust Memorial Day (Yom HaShoah) in the Jewish calendar. It is worth another read.

Please go the United States Holocaust Museum and Yad Va'shem websites for more educational information.

It is important to remember that before the Nazis came for the Jews, they tried to eradicate the disabled in their midst. So for me this day has a dual meaning, for my boys were twice threatened by this evil society and the complacency of the world...sadly with the lack of respect for the disabled that still abounds and the growth of antisemitism worldwide, particularly the growth of Holocaust denial and Holocaust inversion,  it seems that ignorance and hate never does end. But it doesn't mean we give up the fight for understanding.

On these days of remembrance I remind myself that we are dedicated to the idea that "we do not fight the fights that are easy, we fight the fights that are worth fighting....."

As a side note: one in five German highschool students do not know that Auschwitz was a death camp.

KADDISH is the Jewish prayer for the dead. From The Jewish Virtual Library:

The Kaddish is a prayer that praises God and expresses a yearning for the establishment of God's kingdom on earth. The emotional reactions inspired by the Kaddish come from the circumstances in which it is said: it is recited at funerals and by mourners.

The word Kaddish means sanctification, and the prayer is a sanctification of God's name.

The opening words, yitgadal t'yitkadash, were inspired by Ezekiel 38:23 when the prophet envisions a time when God will become great in the eyes of all the nations. The response of the listeners to the first lines of the mourners is a public declaration of the belief that God is great and holy: Yehei Shmei rabba mevorakh l'olam ul'almei almaya (May His great Name be blessed forever and ever). This response is central to the Kaddish and should be said out loud by all present when the prayer is recited.



 

My recommended books on the Holocaust:

Older Elementary/Middle School:
Number the Stars
Devil's Arithmetic (also a movie with Kirsten Dunst)

Teen:
Diary of Anne Frank
Night by Elie Wiesel (Nobel Laureate)
Maus I and II

Adults:
Mila 18 by Leon Uris

A really good movie is Judgement at Nuremberg. I know that there have been dozens of Holocaust movies since then, but this movie makes more of a statement with its words than most movies do with their pictures.





Until next time,

Shalom.


Elise

Friday, January 24, 2014

The Importance of Privacy

It is very disturbing to those of us with special needs children when uneducated individuals decide what should be and should not be made public about our children. Case in point: The columnist for the Boston Globe, Jeff Jacoby's 16-year-old son Caleb went missing last week. Not only did his school in Boston, and the Boston community, turnout to help look for him, but there was alot of social media attention and a twitter storm to keep people looking for the 16-year-old. (He was later found in Times Square in NYC.) We actually saw this online advocacy when Avonte went missing in New York as well. (Sadly Avonte was recently found deceased.) Today there is a blog in The Forward ( a Jewish-themed newspaper) that basically says for the good of the Jewish community the Jacoby's should divulge what the problem was that caused their son to run away.You can read it HERE if you wish. This is what I wrote:

What selfrighteous poppycock. As a special needs advocate let me tell you, the last thing the family and especially Caleb, needs right now is the nonsensical crap in this article.It is not your business why this child ran away.There are some privacy lines that do NOT and should NOT get crossed by the public. One of them is issues surrounding juveniles.
That the community did what it was supposed to do and help search for Caleb is a good thing. But it is NOT the community's business why he ran away or what the issue happens to be.Nor is it the Jacoby family's responsibility to be the poster-family for any issues associated with this event simply because the father is a well known author. When Caleb grows up and is an adult, he and he alone will make the decision about disclosing the issues in this event. Until that time mind your own business. 


What was most disturbing to me about the article is the cavalier attitude taken towards Caleb's privacy. The author isn't interested in what really happened to Caleb. If she was, she would know that mental health, sexual orientation and even abuse in the household, are issues that are not the purview of society as a whole. Personal issues need to be dealt with on a quiet level so that the child in question can work through the causation that led to his running away. But after reading the article it plainly seems what this "author" actually cares about is scoring some kind of points against a politically conservative author, hoping to find juicy gossip to discredit his political views.

Privacy is a huge issue, the elephant in the room so to speak, when dealing with special needs children. There is a modicum of respect that is needed when it comes to mental health and developmental issues that seems to be absent in today's society. If someone can actually write about the "good of the community" as opposed to the "good of the child" (which was done in the article above) you can rest assured they are missing the quintessential element in the equation- the child his or herself. There seems to be that  "respectful wall" that is missing when talking about someone else's child, especially the child of a celebrity. At one point children were off limits for stalking and photography by the paparazzi. It is sad that that reality no longer applies.

In today's media frenzied world there is a no-holds-bar attitude toward those in the public sphere. If a celebrity, as Toni Braxton, John Travolta or Holly Robinson Peete did, wish to go public with their children's autism then that is their choice. But it is also the choice of a family to not go public with information about their children, and you do NOT have a right to know about any mental health or familial issues simply because there is a famous person in a particular family.  Ultimately a child of famous or nonfamous parents is a child, and they are entitled to enjoy the benefits of anonymity and deal with their realities in the way that is best for them, not how society decides it should be done.

Privacy in fact is why when writing this blog I use a pen-name, and acronyms for the boys. Now that they are adults and can do as they please when it comes to their autism they can tell whom they please and explain it as they see fit. But that is THEIR right to make that choice. It is not up to me to "tell" who they are, mostly because their autism is not about me or the autism community. It is, and always was, only about them. By the way I did ask them if it was OK to write this blog as long as I kept it anonymous as best I could. They told me to go ahead. Also note, I don't necessarily write everything that has happened in their lives or to them. Some things are too private, even for a pseudonymous blog.

Privacy and respect go hand in hand. Choice is a human right. Choice to tell the world about yourself is the right of every adult. No one has the right to make that choice for anyone else, including parents making that choice for their children. Strangers most definitely do NOT have the right to make that choice for another person's child or for someone else's family. I can't decide whether the author of The Forward article is simply ill informed about the legal rights of children, self-righteous about how communities work or such a political nincompoop that she can't see the really important issues in life anymore.



Elise




Thursday, January 16, 2014

Speech out of sync for many with autism



OK, now tell me something I already didn't know. Perhaps a new revolutionary way to support them. The video game idea seems fine for younger children, but for adult aspergeans/autistics, already out in the world, they need something more immediate. Something that will help in college, graduate school or at the job.

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Some real world supports we have used for the boys due to their auditory processing issues:

-This is why oral instructions need to be broken down to more manageable pieces. No more than 3 steps at a time (if that many at first) or they should be written down.

-Loud noises cause pain for many of our children. Don't yell ever. Gym, the lunch room, music class, can all have very negative effects on those with autism. It's why managing a big city, like New York, is very hard for them. They can get confused and overwhelmed. (Heck its why MrGS needs the support to navigate the City to get to his college. Even as a small child he told us he preferred grandmas in the country to the City. We had no idea why until he was finally properly diagnosed.The quiet allows him to think and process the world around him.)

-School accommodations should also include note takers, recorded lectures, or the written lecture itself, so that they don't miss important information. Even a change in classroom instruction can cause consternation. Since they rely on written syllabi or schedules to make sense of their day, they can get thrown if there is a change in plans. If teachers change homework or assignment instructions it is best to make sure that it is gone over and to make sure your child understands the change completely.

-Para support and the creation of social stories to facilitate social interaction since conversational skills are behind. Not necessarily because they don't want to be social, but they do not get the rhythm of conversations. And once they figure out what is being said, everyone else has moved on to the next subject. Also if you are behind in figuring out conversations and how to react, your social skills do suffer.

For more ideas go to page:

Schedules; Social Stories; Pragmatic Speech Skills


Elise


Tuesday, January 14, 2014

Entitlement, Privilege, Reaching for the Dream: Teaching the differences to your child is called parenting

One of the issues that we face in raising our children is trying to create that line where they understand that the life they lead is because they are lucky enough to be in a privileged household but that they are not as of by right entitled to anything that they are given.  Funny in America today most families would not define themselves as privileged, but in reality and in the scheme of the world they really are. "Privilege" afterall, is also a matter of degree. To the third world, even the poor in the United States live a privileged existence, what with electricity, running healthy water, cell phones, televisions, free education for their children, SNAP, welfare and medicaid. So you need to understand that life is also a matter of perspective. (Yes I sound like Obi-Wan in Return of the Jedi.) What we consider average and in some cases even poor in the first world, is actual wealth in the third world. We have a standard of living billions can only dream about.

Entitlement is the idea that you are by right and virtue of your existence supposed to be given rewards or endowments that someone else has earned. While we talk about self-esteem, ad nauseum in our society, we have forgotten that not all attributes of the "trophy generation" are positive. To think that you are ENTITLED to a trophy for just showing up is ridiculous. It takes from the child the incentive to learn, persevere and work.

You also do not have to be "privileged" to have a belief of entitlement. The concept of entitlement is a mentality not an economic strata. You are not entitled to success because of your financial class, your religion, your race, your gender or your creed. Your child is not entitled to that "A" without doing the work and if they have issues in school, it is up to you, their parent, to help solve the problem. Either with tutors, after school help or sitting down with the teacher and figuring out the issue. And yes it is your responsibility as the parent to make certain that school goes well, that your child behaves and that they are engaged in their own future.

It is also important to acknowledge that not every offspring is another Einstein, Gates, Jobs or Wall Street Wizkid. The irrational belief that somehow you are entitled to perfect and excellent children is epidemic in our society. That your child can do no wrong hurts the child and their ability to function in the real world. For a parent to hold the world and not the child to a level of expectation provides the child with the sense of entitlement that they will never have to work for anything in their lives and that the world is waiting for them; that their existence, and that existence alone, deems them superior to everyone else. These children will never succeed and never function on a healthy level.

Privilege, on the other hand, is in fact the reality that you or those in your inner circle just have it a little financially easier than then next person. That there is the money for the extras that life has to offer. The nicer car, nicer clothes, the tonier school and the fancy-shmancy vacation. There is nothing wrong with that. We, as parents work so that our children may have it easier than we did. So what? Is it really necessary that a child struggle and fight and do without? I do not think so. I am tired of people apologizing for giving their children a leg-up on the rest of the world. I am tired of people, particularly those without children, telling our generation we give our children too much. Well too bad. You bet we give our children more than we were given. First off there is more to give.There is better food, medical care, education and quite frankly life is easier with all manner of gadgets, innovations and labor saving devices.

But the other side of the equation is that with all that our children are given, society does expect more from them. They need to know more. They need to produce at a higher level. They need to function on an international scale, not just on a country, state, county or local district arena. Our children are waging a life battle against the rest of the world. They need skills and abilities in order to stand tall and if this means they get to be adolescents a little longer so be it. Adulthood is hard in our world today. Competition is intense and at times overwhelming. Letting them grow into it slowly is helpful and productive. And no I don't care what other milestones another nation creates for their young in order to promote adulthood. We are entitled to our culture and that culture, by the way, has made us the wealthiest, most innovative, most forward thinking and freest nation in human history. To paraphrase former British Prime Minister Tony Blair on the demise of the United States: A nation's greatness is judged by how many are trying to get into that country not by how many are trying to get out. Millions worldwide still strive to be part and parcel of the USA. That speaks volumes about the US' standing in the world. The USA is anything but finished. In fact it has yet to reach its full potential. Yet embarrassingly for our society, so many of our young people are left dramatically behind, and no one is willing to own up to this failure. It's pass the buck and time to play the blame game of discrimination and the dumbing down of education.

Being entitled and being privileged are two different ideas that do not necessarily mirror each other. A child of privilege does not have to be entitled and can be taught to appreciate what they are given. Moreover a child of poverty can believe that they are entitled to what others produce. Children can be taught to understand that they have a responsibility to those less fortunate, just as they have a responsibility to take care of themselves. Furthermore,  they are ALLOWED to be financially successful without apologizing for it or having a government think that a citizens' work product belongs to the  government first and only through the ruling classes' largesse do we get to keep what we earn. People are ENTITLED to want to work hard, to achieve the status of "privileged" without being denigrated for wanting more than an ordinary life.

Americans want to work and they are willing to work hard. It is in our nature. How many stories have you read of the thousands who stand in line for a few job openings? Only recently did it become de rigueur to decide that we should all be equally poor instead of striving to better our world in every way in every generation and to castigate those who try to achieve. Remember that life is about equality of opportunity not necessarily equality of outcome.

It is also not the big things that you do or how you instruct your child that will facilitate compassion and understanding. But it is the little almost inconsequential events in life that have the most effect. This past weekend, the boys worked at a homeless shelter. They served dinner and cleaned up. Next week, on Martin Luther King weekend they will participate in a service project, as they have done since they were little.They have been taught charity and compassion, the concept of hard work and responsibility. But they also know about the "good" things in life and they want to achieve these aims as well. They are allowed to be privileged. They are ENTITLED to reap the rewards of their hard work.They used to call this the American dream. Sad that there are so many in today's world who have forgotten just what that dream entails. Sad moreover that so many think that that dream has died and blame everyone for their failures but themselves. If your dream dies, you and you alone have let it die, and have no one to blame but yourself.

Self-Esteem, It's Not a Trophy It's Reality
Entitlement, Self-Esteem, Self-Importance
Chores and Preparing for the Future
Some Straightforward Parenting Advice
Id, Ego and a Sense of Self
Social Stories, Purpose and Use




Elise

Monday, January 13, 2014

Ariel Sharon

At times this blog diverts from autism to deal with many other issues. Today I post the eulogy by Tony Blair at the funeral of Ariel Sharon.






Arik's main issue was the survival of the Jewish people. No, everything he did was not perfect. No everyone did not love him. Some hated him beyond reason. Some even blood libeled him for the evil that others perpetrated. But for me, and in our house, Arik was, and will always be, a symbol of Jewish strength and survival.

Watch Bret Stephens of the Wall Street Journal discuss the legacy of Ariel Sharon HERE.

When Ariel Sharon decided to disengage from Gaza, and MrGS watched Jew fight Jew, as the IDF removed the Israeli settlers from Gaza, he was confused and upset.

"Why is the Israeli army fighting other Jews?" he asked.

I tried to explain that at times, peace is even worth angering your own.

To me that is the legacy of Ariel Sharon. That when push came to shove, where peace was concerned, Arik was willing to take chances that no other world leader would even dream of doing. To me that was his  bravest moment.

I am also very proud of the picture below. My beloved father (RIP) listinening to Arik explain Israel's reality.








Elise


Thursday, January 9, 2014

Employment: What is too much support and what is not enough

I came across this POST at the blog by law professor Anne Althouse BLOG. 
The issue concerns the amount of support an employer is required to offer someone with aspergers and/or depression under the Americans with Disabilities Act. Here is the comment I left:

As the parent of two young men with aspergers and a volunteer autism advocate I am going to add my two cents in here. Society has a way of demonizing those with invisible disabilities. Mental illness and developmental disabilities are horribly misunderstood and we can thank the media hype and ignorance for this state of affairs.

On the other hand it is because of law suits like this one that employers do NOT hire those otherwise highly competent individuals with aspergers or mental illnesses. And this is why most keep their disability a secret. While it is important that employers understand and support persons with disabilities, it is up to the individual to learn to function in the real world and to learn how to behave and function in an appropriate manner. You MUST be able to do your job like others notwithstanding your disability.

Recent studies have shown that adults on the autism spectrum have been fired from jobs that they have done competently due to social interaction and corporate political reasons. More training for those on the spectrum is necessary as is social awareness of the problems faced by aspergeans and how to help those on the spectrum.

From what I read here the school did try to support the professor by sending him to seek counseling and discussing his issues with him ad nauseum. However, it is ultimately up to the professor to have seen to his own well being, as any adult is required to do. He should have sought out counseling on his own to help him with his social interactions and self-help techniques in dealing with highly anxiety prone situations and how to interact with his students. That there should have been a go-between for him with the administration or human resources is truly stretching the ADA. If he had seen a therapist his therapist could have acted as his go-between. Infact the therapist and the school could have worked together to help the professor do his job properly. But it is a joint effort, not simply an effort for the school. There does not seem to be any effort on the part of this professor to seek any form of joint private/employer support.

Remember: His job is to teach not to berate and destroy his students.
Whenever an employee's actions places the employer in a situation of being sued due to their behavior or incompetence, the employer is not required to place its entire livelihood at risk for this person as long as the employer made a good faith effort to try to support that disabled individual.

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On another point: there is a tremendous amount of disinformation about aspergers and autism in this thread and I might add in this post. Persons with aspergers are not necessarily devoid of emotional attachment, misunderstanding of other's feelings nor have the inability to function appropriately in the real world. This is an outdated and outmoded way of thinking. If anyone is interested in learning more about autism and aspergers please go to my blog Raising Asperger's Kids at http://asd2mom.blogspot.com. You can also email me if you have any questions.

Professor Althouse: Thank you for posting this comment.


*********************************************************************************

Truthfully this article once again raises the real-world questions of "what do to and how to prepare" your children for the adult-working world when they have an invisible disability. While anyone who reads this blog knows that we are still providing para support for the boys through college and graduate school, we are not quite sure how to proceed when it comes to employment realities. We are more than happy to offer job coaches for the boys and to send someone with them when they do go out into the adult-sphere.

But the question remains will an employer be amendable to that reality?
Will they take the chance to hire a person that is in need of that kind of support?
And what is someone who needs job training and support but can't afford it, to do?
Is it up to the employer to provide the job coach? They do have diversity experts come in and they do have human resource persons teach about sexual harassment in  the work place so why not support for those on the spectrum?
Is it up to the employer to provide a go between and a therapist on staff, so that anyone with  any kind of issue has someone to reach out to?
Is the employer supposed to sublimate their bottom line and perhaps put in danger the jobs of every other person who they employ, to keep on someone who cannot appropriately function in a corporate environment?

Truth is that the answers to these questions will eventually be forthcoming. Lawsuits are in process, like the one linked to at Althouse. But in the end I am not certain that that helps our children. As I mentioned in the comment, the fear of these lawsuits is why our children do NOT get hired. I am concerned that these lawsuits do not do our children any favor in the short or long term. If the employer is forced to put more money into human resources for persons on the spectrum then they will simply find a way to NOT hire aspergeans by asking pointed questions in the interviews to figure out who they are.

No the boys do not tell anyone about their aspergers until after they are hired, but there are those little idiosyncrasies, and speech cadences, that come out in the interview process that anyone with any kind of awareness can tell that the boys are on the spectrum. In fact during a job fair, one of the presenters, after talking to MrGS, mentioned that they hire those with disabilities. And no, he did not hear back from anyone of the presenting companies.

So as we go into the spring semester and begin to apply for internships and summer jobs, I am full of questions, trepidation and numerous plans. Of course, first they need to get jobs/internships. Then we will figure out the next move.

We can offer to send a job coach and offer to work with the employer so that everyone has a good summer. This does not preclude the pre-job work that needs to occur so that they know how to talk to people, work in a corporate environment and deal with little stresses and "curve balls" that are part and parcel of any adult world. And yes, I know the way they learn best is dealing with the issues as they occur. So for that we are going to have to find some truly compassionate employers who will work with the boys, the job coach, the therapist and us.

Now I need to tell myself to Breathe......

I think at this point its all we can do.


Elise

Thursday, January 2, 2014

Promising New Israeli App Helps the Nonverbal Communicate

From the Algemeiner....there is a new app from Israel that facilitates communication for nonverbal persons.

I am not certain if this app is available in the US yet. But it sounds like something parents should watch for.

Elise

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A new Israeli application, the first of its kind in the world, is allowing people who cannot speak to communicate with people everywhere, Israeli daily Walla reported.

Ola Mundo (“Hello World ” in Spanish) is an application that transmits instant messages using symbols for people whose speaking or writing ability is severely impaired. The technological breakthrough was developed by Ophir Harel, a Project Manager at an Israeli high tech firm who is also the father of a 10 -year-old autistic child, named Adam, Walla reports.

Harel created the application out of a profound sense of frustration: “I had no intention of developing an app. However two years ago, Adam’s therapy – which included speech and occupational therapy – wasn’t progressing. The few words Adam did say we had to coax out of him.” After researching possible alternative therapies for his son, Ophir realized that there was simply no solution for kids such as Adam who communicate primarily through the expression of emotions, Walla said.

Necessity being the mother of invention, Harel developed an application that allows children and adults who do not speak and write to communicate with the world around them by way of a new language comprised solely of symbols. Ola Mundo’s big leap forward is that its use is not dependent on proximity since the user of the application communicates by way of instant messaging.

After an incubation period that included the assembly of a dream team comprised of, among others, a former CEO of an Israeli start up that specializes in instant messaging technology, Ola Mundo finally went from being one man’s bright idea into an exciting reality.

Recently, Apple’s App Stores have begun selling Ola Mundo. In Israel, the version of Harel’s technological innovation that is being marketed is compatible with any iPads that are second generation or newer, as well as the iPad Mini. Due to heightened demand, it is currently possible to download the application for free – until the middle of January – and get a free one year trial.
In the near future, Ola Mundo is expected to be sold in the United States for an annual fee of 80 dollars.

According to Harel, parents are the driving force behind the growth of Ola Mundo. Therefore  “…we invite parents to get involved as one community in shaping the future of our children, by way of the Ola Mundo platform,” he said.

Read the original HERE.