Saturday, September 28, 2013

Forgetting about Reality

Reality set in last week and I can honestly say I was happier in my delusional state. Don't worry nothing bad happened,  just some disappointment on my part. As the boys seem to be doing so much better every day and functioning really well at school, I had convinced myself that somehow we could find an activity that would be considered "typical" for someone their ages.

Over the years hubby laments that no matter how well the boys do, there is nothing in their lives that is "typical." They did not go away to college. They did not drive at the allotted age and still don't drive (of course for MrGS it has to do with seizures, but that is another story.). They still need one-to-one support in school. They have no friends. The list goes one....

So I decided that there was one thing that they could do that all the young people their age was doing and that was going on the Birthright trip to Israel. Birthright has become a right of passage for Jewish-American young people. After the bar or bat mitzvah, the next step in their Jewish education is to go on these trips to Israel where they can have a tactile relationship with their Jewish heritage. So many of the boys' peers have gone on these trips and the reports are fantastic. For students who have even spent their junior year abroad traveling around Europe, nothing compared to this trip to Israel I have been told.

The best part was that the Birthright organization even established a trip geared towards those with aspergers syndrome. I figured it couldn't get any better than that. A trip all their peers were going on, chaperoned by people that actually understood their needs and their issues, with other students that were just like them. And yes, I know several young people with aspergers who had even gone on the regular Birthright trip and had a blast..... Then the reality hit.

I actually had applied to the trip. Sent in all the paperwork and discussed with the boys about going. Now MrGS and CM2 were nervous of course. Not because its Israel, but travel for them is tough at times. Then hubby mentioned to me a truth that I just wanted to ignore...

If the boys still need support in school, and we don't even let either of them travel alone into our small town center, how are we going to send them halfway around the world? Honestly I had figured that  it was an aspergers support trip so they would know how to help and handle the boys, plus if we were in Israel ourselves at the time of their trip that was an added safety-net if they didn't do well on the trip. We could just collect them.

However, not only weren't there any airplane tickets left for that time of the year, well reasonably priced ones at least,  (it is not smart to try to go to the Holy Land at the last minute the week of Christmas- and yes, planning such a trip in September is last minute) plus the hotels that were left unbooked were also exorbitant. So no, hubby and I would not be "in-country" if the boys went.

Then my mother had a point too. She reminded me that even with aspergers there is a huge disparity in functioning level. That there are those with aspergers that are alot more independent than the boys and that is probably who is headed for this trip. I had to agree. The trip is planned so that those with aspergers are more comfortable (slower schedule, more downtime than a typical Birthright trip), but I am certain that the organizers expect a certain level of independence that the boys simply have not reached as yet.

So I called and removed their names from consideration.

Then I went into a big funk.

For all the success in school and even in their daily lives, the boys have yet to reach that level of "typical" that you want for your child. And yes you want "typical" so that they are independent, happy and self-sufficient. You want to know that they are going to be able to take care of themselves and get along in this world just like everyone else. I just wanted something that the average person their age did.  Is that so terrible?

I suppose the reality is what hubby said a few years ago.... the boys still need us too much. We can't die yet. Or as I wrote under the hashtag #youmightbeanautismparentif   You have a will and a guardian all picked out, but know that u can never ever die......

I keep that reality in the back of my head and recognize the fear that something will happen to us before the boys are fully ready to take care of themselves. Hubby is still worried that that day of self-sufficiency will never come for the boys. I suppose so am I.  Independence and self-sufficiency for the boys is our greatest goal and the one we work towards. Right now its baby-steps but at least we are going forward, just not as fast as I would like sometimes I guess. I unfortunately forgot my own advice- stop projecting about the future and take each day as it comes. Then one day when you look back you will see just how much progress your child has made. Of course, you still need a plan, goals and an endgame.

In truth, I think I just wanted to forget about "autism" for awhile I suppose. I wanted to fool myself into believing that there was less to worry about than was real. I wanted to pretend that we have less work to do then we need to.

Somehow there are times, when reality still gets the better of me, even after all these years.



Elise

Friday, September 20, 2013

The Surprising Science of Happiness

Just thought this was a very interesting lecture about what truly makes us happy. Yes the brain is very involved. Query: I wonder what the outcomes of such a study would be if the subjects were autistic. Since the autistic brain is wired so differently the question would be does it take "more or less" to make an autistic person happy?

Watching the boys as they grow up I can identify what makes them happy. Material things not so much. Yes they like their video games and yes they like their computers. But they don't need to shop at Abercrombie or American Apparel. They don't care about cars or travel. They also have no problem earning "money" for what they want as well. They don't expect everything to be handed to them and they do work for that school grade too. They make no excuses and what the world requires of others they require of themselves.

I think what makes the boys ultimately happy is when people are simply kind to them. But then again, isn't that what makes all of us the happiest, when other human beings treat us with respect, honor and dignity?

As a note: the professor is from Harvard and the students in the study were from Harvard. You can draw your own conclusions about that particular variable as it relates to the study's outcome as well....(snark)

Meanwhile according to an international study the happiest nation on the planet is....no... not the Untied States, not anyone in Europe or Asia but ......Israel. Yep, that little nation, no bigger than the state of New Jersey, which is constantly under attack, being threatened with genocide by her neighbors, the victim of rampant antisemitism and Jew-hatred, all while she is maligned internationally for daring to defend her right to exist, is the happiest place on Earth. Hah, and you thought it was Disney Land.



Elise

********

From TED





Dan Gilbert believes that, in our ardent, lifelong pursuit of happiness, most of us have the wrong map. In the same way that optical illusions fool our eyes -- and fool everyone's eyes in the same way -- Gilbert argues that our brains systematically misjudge what will make us happy. And these quirks in our cognition make humans very poor predictors of our own bliss.

The premise of his current research -- that our assumptions about what will make us happy are often wrong -- is supported with clinical research drawn from psychology and neuroscience. But his delivery is what sets him apart. His engaging -- and often hilarious -- style pokes fun at typical human behavior and invokes pop-culture references everyone can relate to. This winning style translates also to Gilbert's writing, which is lucid, approachable and laugh-out-loud funny. The immensely readable Stumbling on Happiness, published in 2006, became a New York Times bestseller and has been translated into 20 languages.

In fact, the title of his book could be drawn from his own life. At 19, he was a high school dropout with dreams of writing science fiction. When a creative writing class at his community college was full, he enrolled in the only available course: psychology. He found his passion there, earned a doctorate in social psychology in 1985 at Princeton, and has since won a Guggenheim Fellowship and the Phi Beta Kappa teaching prize for his work at Harvard. He has written essays and articles for The New York Times, Time and even Starbucks, while continuing his research into happiness at his Hedonic Psychology Laboratory.

Read more about Dan Gilbert on the TED Blog »


 

Living in a Booth, Not so Fast



No I have not decided to vacate my home. Last Wednesday started the Jewish holiday of Succot or the Feast of the Booths. Nope I kid you not. It's actually a commemoration of the time the Jews pissed off God at Mt Sinai and were forced to wonder for 40 years in the desert until they could enter the promised land of Eretz Israel. You think we Jews have long memories, just think how long God's memory happens to be.

I had actually forgotten about this fun video made to celebrate the holiday:




Now the etrog, or that rather big lemon seen in the video, is a specialized fruit grown in the Middle East. They actually have etrog farms in much the same way here in the USA we have Christmas tree farms. Etrogs are so specific in how they have to be grown and how unblemished they have to be that some will cost upwards of hundreds of dollars. In fact there is such a demand for etrogs in Israel that they have to import them from Morocco.








You also see the singers waving around what looks like a palm branch but it is actually three species of trees. the lulav, hadas and aravah. HERE Traditionally the four species (branches of trees and etrog) reflects the four species of mankind. They are held together because we are all part and parcel of the world. It is up to each of us to learn how to live with each another:

etrog: person with both wisdom (learning) and who preforms good deed
hadas (myrtle tree): person who preforms good deeds but lacks wisdom (learning)
lulav (date palm): person who has wisdom (learning) but does not perform good deeds
aravah (willow tree): person who has neither wisdom (learning) nor performs good deeds


There is also another interpretation of the four species, and that it quite personal:


Relationship With Self
Another way to look at the Lulav is mentioned in "Sefer Bahir," a kabbalistic work almost 2,000 years old. It describes the four species as four parts of a human being:

  1. The Esrog represents the heart, the seat of our emotions.
  2. The Hadas (myrtle) has leaves shaped like an eye.
  3. The Lulav (date palm) represents the spine, from where our actions emanate.
  4. The Aravah (willow) represents the lips, our speech.
The four species must be taken together as a unit. So too, to achieve happiness, one must use all of his faculties in unison. You cannot say one thing and feel another. We must unify our feelings, our actions, our speech and our outlook. With all of these working together, we are well on the path to self-esteem, tranquility and joy.  From aish

Technically we are supposed to eat our meals inside the succah and there are people who even have set it up as a complete living environment for the 7 day holiday. Yep, they sleep in the succah too. Now in parts of Israel that may be an easy thing to do. But here in the northeast United States where there is frost on the ground at night...I will stick to my bed and the inside of my house.


when you live in an apartment building creativity is the name of the game



 

Meanwhile here is a tongue-in-cheek look at what succah booths mean in the politically charged atmosphere of the middle east 
(PS its meant to laugh)


*****

As far as any autism issues during this holiday are concerned, there are none. That's right, none. Mainly because we actually don't build a succah nor make the boys eat in one. And as for sleeping in one, that would so never happen. When the boys were younger we had friends who built a succah and we would go to their house for a party to celebrate the holiday. Our former Temple of course, had a succah, and we would go there for a holiday blessing. Their college used to also put up a succah and I would take the boys there, have them take a bite of an apple, say a blessing and be done with it. 

Now...forget about it.

Truth be told the issue with the succah has nothing to do with "autism per se," but has to do with the comorbid issues and phobias that are associated with their autism. The biggest issue is flying insects. No matter what we have done to try to help them, the issue while it has gotten better, is not worth purposefully provoking. And yes they still get upset if there are flying bugs in the house, classroom or in their near vicinity. Yes they can help out at the Audubon society picking weeks and working in the garden (as long as they have bug repellent one), but the idea of actually sitting outside and eating is anxiety provoking. Picnics do not happen in this family. Eating outside at a restaurant does not happen. Thankfully the porch is fully screened in or they would never ever go sit outside.

Hubby and I made a decision years ago that the boys will practice their Judaism as well as they can without becoming overwhelmed. It's why we never went to Temple on High Holy Days and our Passover Seders are at most 30 minutes long (Usually we are lucky if the Seders last ten minutes before the boys get into a knock down dragout about the existence of God alltogether). We make our religion home-centered, as Judaism requires anyway. 

The idea is religion is something that should not be a burden but a pleasure. It should give you succor and joy. To make something that is supposed to give a person happiness odorous, is to deprive that person of what religion is truly all about. So we have always modified religion for the boys. We give them the basics and then as much of the traditions as possible.

But above all, we try to instill in our children that no matter what you do in life you are entitled to be comfortable, happy and content. Autism may forestall certain religious practices, but the boys also know it doesn't stand in the way of them learning about their Jewish heritage. We have basically  autismified our Judaism. (Yes I just made that word up.)

In life you have to learn to pick and chose what battles to fight. We have chosen to fight the battles required for the boys to be properly integrated into society. But I refuse to battle religion itself.  Considering our offerings to God still come with an open heart,  God is going to have to accept them the way they came. That is what a truly loving God would do anyway.



Elise



Monday, September 16, 2013

A Variation on Normal

There is an on going debate about the definition of "normal" in society. Many special needs advocates complain that there is no such thing as normal, simply because normal should be defined by your existence and not someone else's. I find that reasoning rather devoid of any understanding of how society functions. What is a normal way of living for some does not mean that society taken as a whole finds it "normal." Normal means average. Does the average person live this way? How does the average person interact? How does the average person learn? What are the average social conventions?  There are markers and baseline understandings in life for everything.

Society needs to establish parameters. Furthermore, without an understanding of normal, society would have no compunction to find a way to create rules that help those that fall outside the normal understanding of functionality. Honestly I still don't understand what is so wrong with the word "normal." There are normal ways of being and there are abnormal ways of being. There are social conventions that need to be followed and there are taboos that need to be avoided and in some cases corralled and obliterated altogether.

By the way, I have never lived a "normal" existence. I have defined my life according to my own rules. I held my own beliefs and ideas. I did not look for society to accept what I needed to do nor did I flinch in my responsibility to my children. Yet at the same time I worked within the rules, aka  the norms. (Parents in my town were not happy when Mr.GS was brought back in district and placed in an inclusion setting. Societal norms here is to alienate those that do not fit the accepted mold. I could have removed my son and sought an alternative less best education for him. But I decided early on that I did not need the community's acceptance to do what was best for my children. I decided to live an unconventional life in a "normal" setting.)  Listen it is important to not conflate these two concepts....."normalcy" is needed for society to function but independence of thought or being unconventional, is essential to understand your own humanity and to grow as an individual and at times do what is best for those you love the most. In fact, it is the unconventional that change the world. Steve Jobs and Bill Gates come to mind.



Now for many the idea of "normal also indicates simply one type of development and one type of understanding. That is not necessarily so. There is an interesting medical term called "variation on normal." There is a recognition that normal does not mean one absolute. There is a length and breath of what normal happens to be. It is the average in society and it is how society bends to function within that range of what is accepted as normal.
 
Truly, there is nothing wrong with an idea of normal, or even the concept of variation on normal. Yes we do live our lives for what is normal for us. But normalcy is more than about how we personally live our lives. Normal is how society functions and what it expects from each member. A definition of normal also indicates when someone somewhere may need society's help. If there were no concept of normal then when would anyone need help?

Take for example the psych and education testing that the schools require. The largest level is the average or "normal" functioning parameters. This level goes from 25% to 75% of correct completion. Under this concept of normal, every child that falls within this percentage of testing is not considered in need of educational support under the IDEA. (The vastness of that level of normalcy is also a discussion for another time.)

There is a huge variation on normal when you look at those educational statistics. Do we think that someone who functions at a 75% completion ratio as opposed to a 25% completion ratio are equal in function and lack of need? Absolutely not. But society has determined that all these children fall within the concept of "normal." Hence there are those in society who actually need help that do not receive the support simply because they fall within the recognized parameters. This is when the concept of "normal" needs to be reevaluated. When "normal" allows for members of society to flounder than that is when there is something wrong with the concept of normal, not simply because the concept of normal exists.

"Normal" also includes creating laws and rules of functioning. It is the societal contract that is recognized between people on how they agree to live together. It is this concept of normal that imbues humankind with a desire to help those who fall without the boundaries of society and to support those who quite frankly are incapable of helping themselves. It is the proviso of the safety net for society. Without an understanding of "normal" there would be no understanding of the need for charity, goodness and obligation to your fellow humanbeings, all of which are based on helping the helpless and the needy.

Yes, over time certain aspects of society change. Yes, what was considered "normal", aka acceptable, hundreds of years ago is no longer acceptable today. Yes, society can and does redefine normal on a continual basis. In fact depending upon which nation you happen to be  living in, your definition of normal may be entirely different. But the idea is that there are baselines and accepted modes of behavior that dictate how a society functions and how people need to live within the parameters of that society.

Without this aspect of normalcy there would simply be anarchy, or the governing by the will of the strongest, the wealthiest or the most evil. Sure you could have government by the kindest or the most moral. But in truth, while our goal is heaven on Earth, that does not exist anywhere and is not, quite frankly, in the works anytime soon.

There is nothing wrong with defining normalcy, as long as that society makes room for the most vulnerable and finds a place for them as well. It is when this normalcy or variation thereof, is used to destroy and marginalize those that dare live outside the proverbial box, that it can and has become a dangerous issue. There are those societies that destroyed members that lived outside the norm. Homogeneous, racist, societies existed throughout human history and still exist today throughout the world. They are characterized by brutality and tyranny. This is when "normal" becomes a weapon of destruction instead of continuance. Hence, in truth,  normal alone cannot define society. There has to be a moral underpinning to the world when normal is discussed. Ethics and morals, an understanding of right and wrong, are essential in any society. Normal is only one aspect of the societal contract.

Within our world we always will have what are "variations on normal." There will always be rules that govern society and helps society function in the most efficient way possible. Society is not and cannot be a haphazard form of alliances existing merely until a better offer comes along. Society, even on an intentional scale, needs rules and modes of normalcy in order for the world to function. These goal posts cannot and should not be moved to accept the most egregious forms of barbarity even though to some  it is "normal" in their world. That is why there are human rights treaties, conventions of the use of weapons in war and intentional trade agreements.

Normal, "variation on normal," exists. For a society to be stable we need to learn to live within the bounds of normal and help those who fall without the variations of normal to join the world in which we live. Social conventions, the very normal human aspect of interactions, are essential for any society to survive.



Elise

Thursday, September 12, 2013

The Inclusion Confession

This is reblogged from Zeh LeZeh (For One another)
I was thinking of writing a post about inclusion, Yom Kippur and atonement. But I came across this post and there is absolutely nothing I could say that is better than the following: 




By: Rabbi Rebecca Schorr
 
The central section of the Yom Kippur liturgy is the public confession known as the “viddui.” Originally patterned after the priestly narrative of Yom Kippur in Leviticus 16, the current iteration, with its poetic catalogue of sins, is the work of our rabbinic sages, who believed that the best way to have mastery over our behaviors is to recognize, name, and internalize our wrongdoings. Only then can we hope to overcome them. Following the traditional rubric, this new viddui is meant to help us recognize, name, and internalize the many ways we continue to exclude those in our community whose abilities differ from ours.


For the sin that we have sinned before You under duress and willingly; and for the sin we have  sinned before You through the hardness of heart.

For the sin that we have sinned before You by failing to include every member of our community.

For the sin that we have sinned before You by making it difficult for those who are different to find their places in our synagogues, schools, and organizations
and for the sin that we have sinned before You for thinking that we are doing all that we can.

For all these, O God of mercy,
forgive us, pardon us, grant us atonement.

For the sin that we have sinned before You by building ramps without widening doorframes.

For the sin that we have sinned before You for dedicating seats for those with mobility difficulties without constructing accessible bathrooms.

For the sin that we have sinned before You for installing assisted hearing devices and allowing speakers who believe themselves to have loud voices to speak without using the sound system
and for the sin that we have sinned before You for believing we are being inclusive when we don’t truly include all.

For all these, O God of mercy,
forgive us, pardon us, grant us atonement.

For the sin that we have sinned before You by using words to tear down rather than build up.

For the sin that we have sinned before You by not removing words from our vocabulary that are outdated, outmoded, and unacceptable.

For the sin that we have sinned before You for standing idly by while our family, friends, neighbors, and co-workers use words like “retard” or “retarded” to describe a person or situation
and for the sin that we have sinned before You by not speaking out when these words are  bandied about by rock stars, sports figures, and pop icons.

For all these, O God of mercy,
forgive us, pardon us, grant us atonement.


Courtesy of B'nai Amoona Synagogue, St. Louis
Courtesy of 2013 Ruderman Prize in Disability B’nai Amoona Synagogue, St. Louis


For the sin that we have sinned before You for staring at the child having the public tantrum and assuming he needs better discipline.

For the sin that we have sinned before You for judging that child’s mother rather than offering her a sympathetic glance.

For the sin that we have sinned before You by accommodating those with physical limitations while not making accommodations for those with developmental limitations
and for the sin that we have sinned before You by not providing support and respite for the parents and caregivers.

For all these, O God of mercy,
forgive us, pardon us, grant us atonement.

For the sin that we have sinned before You under duress and willingly; and for the sin we have sinned before You through the hardness of heart.

For the sin that we have sinned before You turning away from those who seem different.

For the sin that we have sinned before You by putting those who seem different into categories such as “less able” and “undesirable.”

For the sin that we have sinned before You for failing to recognize a piece of You in every soul.

For ALL these, O God of mercy, forgive us, pardon us, grant us atonement.

Ordained by the Hebrew Union College-Jewish Institute of Religion, Rabbi Rebecca Einstein Schorr is a CLAL Rabbis Without Borders Fellow, a contributing author of The New Normal: Blogging Disability, and the editor of the CCAR Newsletter. Writing at her blog, This Messy Life, Rebecca finds meaning in the sacred and not-yet-sacred intersections of daily life. Engage with her on Twitter!


*****

For all my Jewish friends may your fast be an easy one.  Tzom Kal
For all good and descent people worldwide, "May you be inscribed in the Book of life for a good year."  G'mar Hatimah Tova





Elise

Tuesday, September 10, 2013

September 11.....Never Forget....STAND UP BE PROUD

The morning of September 11, 2001, was a beautiful morning. Hubby and brilliant-computer-sis were supposed to be at the World Trade Center that morning for meetings. Luckily, their meetings had been canceled the day before, but who would have thought to tell me about something so esoteric as canceled meeting......I will never forget the terror of not knowing if they were alive or dead for hours....I will never forget the feeling of needing to stand-tall...and being proud that I am an American.













People jumping from the Trade Center 9/11








I haven't forgotten that al-Qaeda did this...I haven't forgotten that al-Qaeda is an offshoot of the Moslem Brotherhood, the  group Obama supports in Egypt and throughout the Middle East....I haven't forgotten that a large part of the rebels in Syria are al-Qaeda.





We do not have to side with evil simply because the other side is also evil.......


The World? Is "Offended" by the use of Chemical Weapons  ......

Obama, Islamist and the New Middle East




Elise
P.S. If you can't handle reality I don't really care. If you don't like my politics I really don't care either.....

Thursday, September 5, 2013

Stop Saying You did Everything You Could

The following post is admitting something I have never talked about before.....


Guess what, I am going to go the non-politically correct route. I know you are shocked, shocked you say....Once again we read of a tragedy involving a parent trying to murder their autistic offspring. I do not know this Michigan family. I had only heard of them this morning. This sadly, though, is merely the last in a string of desperate parents who feel they have no out but to murder their children. And no, I am not saying "poor parent" as opposed to realizing that the true victim in these situations is the autistic child. I am NOT making any kind of excuses for the parents whatsoever. I am indicting those around the family....

Over the years I have had limited experience with families in crisis as a volunteer advocate in my area. There is one thing that these people have in common. A refusal to recognize and accept the reality of the crisis. And this does not just mean the parents. Sometimes it is the parent that is in crisis afterall. It could be friends, grandparents, aunts, uncles and even coworkers who refuse to see the obvious. It is this circle of friends,  the distinct group of supportive people, that refuse to see and deal with what is right before them.

I am very tired of hearing how everyone around the effected person did all that they could. Sorry, but no you did not. You did not do everything you could if these persons in crisis succeeded in killing themselves or harming another. We can always fool ourselves into believing that we did everything we could. That we were there the best way we knew how, or that somewhere in the recesses of our minds there was nothing else we could do.

Many try to claim privacy laws. Or the fact that their adult children wouldn't get help and they couldn't force them to get help. But did these people go to a lawyer and talk about how to fight the courts? Did these people go so deeply into debt that you couldn't possibly ever extricate yourself to help your child or that family member? Did you ever review how you ignored the issues your child had growing up and chalked everything up to adolescence and today's culture wars?

A person does not "snap." That is a movie hook to enhance drama. A person doesn't suddenly become mentally ill. Yes circumstances and traumas lead to mental illness in adulthood. PTSD is one mental health issue that comes to mind. In truth, there is help for that too. But for most, their problems start young and they progressively get worse. It is up to parents to figure out what their child needs. Schools are not going to butt in if the child is producing passing grades and is not a behavioral problem. They are not going to put themselves out on a limb. So don't take it as a good sign that a school district refuses to do anything for your child.

Years ago when MrGS was little our pediatrician, who by the way, is a developmental pediatrician, didn't see his autism. As he got older, some nursery schools did see the autism, and they did try to tell us. I refused to see it because they went about it in the wrong way. I felt attacked instead of feeling that they wanted to help. Friends of my in-laws saw the autism, but I refused to listen. The grandparents didn't want to hear it and backed me up. I did not want to see what was right in front of me and it was my child who had to go on for years without the help he needed until he reached a breaking point that he should never have had to endure. And yes I blame myself. And I should.

Luckily I learned my lesson with CM2. I saw the autism. Others, including family and the new pediatrician, said he was just copying his big brother (lining up of toys, obsessive behavior). He didn't talk because he was a second child, etc, etc, etc. But I knew better. This time I got him help long before he fell apart. No, its not been smooth sailing by any means, but he received the help he needed at a much earlier age because I learned from my mistake. I remembered the detriment of ignoring what was right in front of me and it was a lesson well learned.

Also at one point, unfortunately, we had a terrible problem with the new school district. The special ed teacher along with the new vice principal of the elementary school were trying to undesignate CM2 as a 2nd grader. They wanted to make themselves out to be heroes to say they "cured" him of any issues. I knew better what was to come in school, having an older child with autism, and I knew that I had a huge fight on my hands. But what it did, was send me into a tailspin.

After the trauma that we had gone through to get help for MrGS, after the cruelty and evil, horrible people that we had endured in the NYC pubic schools and the Jewish pre-school world, I had hoped that we had found an oasis of calm for our family. It was a psychic shock that the school district I was relying on to help my children, the one that had so helped MrGS, was in fact trying to do damage to my younger son. It sent me to my bed. One morning I refused to get up. I had no where to go. What was I to do if this district didn't help CM2?

Hubby didn't yell at me. He didn't cajole me. He didn't bribe me. He immediately called the psychologist with whom we had been working. He knew that I was in crisis and I needed help and support. Yes, I got the help I needed. I spoke to the doctor and got out of bed. I received the medical help I needed and created a support system made up of psychiatric, medical and special education personnel. So not only do the boys have a village, but I did too for awhile.

Hubby and I, as lawyers, also sat together and put a case forward that basically shoved a red-hot-poker up that 2nd grade "special ed teacher" and vice principal's respective asses. Besides severe IEP violations, there was an ignorance about his testing and the requirements to come. We put together a seven page outline of a lawsuit that left the district director quite annoyed at her personnel. I saw them all get together in a huge meeting by the end of the week. CM2 got every support that I wanted for him for the following year and then some.

Honestly, winning that battle, did alot to get me past my depression and trauma. Now we have been through alot of periods of being and feeling overwhelmed through the years, most of which I have detailed on these pages. Most of which was dealing with incompetent school personnel too. But I can honestly say that I have never ever felt so alone as when we were fighting with the school district about helping CM2.  But at least I had hubby for support and we fought the fight together. He helped calmly, rationally and with his usual finesse. We were also lucky that the district special education director understood the issues, especially the legal issues, and that we had the law on our side. We were also lucky that she didn't want to support her personnel, right or wrong, to the point of going to court. The children's needs were her concern, not the people that worked under her.

The point is that the people around you need to be aware of what is going on. They need to see what is right in front of them. If I had listened about MRGS in the first place and not heard what I only wanted to hear; if I had followed my instinct that something really was wrong before he fell apart; if I had not been so insulted by the way the nursery schools handled MrGS; he would have been helped earlier (And no, don't tell me its OK, since he is doing splendidly now, because you know what its not. For your child you have to buck the tide and grow up.) I luckily remembered, and was independent enough,  to get CM2 the help he needed when he needed it. And the hubby saw that I needed help and insisted I get the support I required before I tailspinned totally out of control.

Funny its been 13 years since I began to fall apart that one morning and was pulled back from the brink. But I still remember how it felt. I still remember the hopelessness and the feeling of isolation. I still remember the fear and the feeling that I simply could not fight anymore. I still remember the desire to avoid anymore trauma in fighting the world. But  I also remember how with support and love I came back to myself and saw that there was a future for everyone. Lucky for me that the hubby loved me enough to see the truth of the situation.

So when I see someone who goes into that dark tunnel and doesn't come out,  and that there are those  IRL who say they did all that they could...well sorry, no you did not. Am I adding to your guilt by saying this? Too bad. Am I being judgmental? Well,  I've been there, on both sides of the equation and as an advocate as well. I don't think that people take the easy way out, it's just that sometimes the reality is so painful and so hard to deal with that it is easier to make up excuses why you didn't help or why you didn't see what was right in front of you. Sadly that doesn't help those who are in crisis and it doesn't eliminate the responsibility that comes with being a friend, relative and part of humankind.


Elise

Addendum:

By the way, you could also add "to refusing to see what was in front you,"  what happened last year with my father. He was diagnosed incorrectly with TB as opposed to lung cancer. We were all really happy that it wasn't cancer because we thought TB to be a curable disease at least. We didn't suggest to my parents to go for a second opinion. When the pain started, and with lung cancer there is alot of pain, the doctors even dismissed it as part of the TB. We discussed how he probably was going to get sicker before he got better. But the pain just kept getting worse even as he took all the TB meds. Finally when the CDC called (they apparently follow everyone ever diagnosed with TB) and told him he was incorrectly diagnosed we just chalked it up to a different form of lung infection. I tried to get him to go to the doctor earlier than a scheduled appointment, but I did not go to my parents house and force them to the doctor or the hospital. Meanwhile all his doctors happened to be on summer vacation at the time and no one bothered to call him back even after he went for a CT scan of his lungs (It apparently showed stage 4 lung cancer). His pulmonary doctor's appointment was weeks away.

We don't live anywhere near my parents and visited periodically. We had seen my parents about 6 months before my father died. He looked pretty good at the time of our visit. He had just gone through a hernia operation and was actually quite chipper. (Funny they said there was a cloud on his lungs before the operation, but no doctor followed up on that. We didn't either. But he was using an inhaler alot at the time of our visit and told me he had COPD.) Three months after our visit, was when he was diagnosed with the TB. At the time of diagnosis, it was recommended that no one come visit them as the infection might spread. Infact my father wasn't really allowed to leave the house for several weeks and my mother had to be tested periodically to make certain she had not caught the infection. My parents didn't use facetime or any other kind of video-chat just yet.

But then one day brilliant-computer-sis did get them to go online and my father had changed dramatically. Sis and I even discussed it. How terribly ill he looked. That weekend I had a dream and woke up, called my mother and told her she had to take him to the hospital right away. I was coming down to Florida to help. He died four days later from lung cancer.

Did I do everything I could have for my parents? No I don't think I did. I could tell myself that I did. But I know better and it is something I am going to have to live with. I will have to learn to make peace with that as well. But I think there is a lesson learned here:

Never take the doctor's word for anything. Second opinions are so important even if the diagnosis is something you want to hear. Be realistic. Don't ever settle. Doctors make terrible mistakes. (Just as there were those developmental pediatricians and speech therapists, who didn't see MrGS' autism) While my father would probably not have lived due to the lung cancer, at least he might have been kept more comfortable and not in so much pain. We also might have had the opportunity to have seen him and his grandchildren would have had spent some last moments with him. Yes we were robbed of all of that. Yes I blame the incompetent doctors for everything...the misdiagnosis, the pain they let my father live with, the lost time together as an extended family, but I also blame ourselves for not following through on our instincts and being happy to take their word for everything. Having been involved with the medical community for over twenty years, I should have known better.

Yes guilt is a mighty force to recon with. But it is also a mighty motivator. Just learn from the mistakes of your past and teach others to seek out the right answers. That is the legacy I will pass on from my father's painful death. It's all I can do now for him.






Wednesday, September 4, 2013

Practicality: A New School Year and New Ideas for Support

The semester has begun. That was one of the shortest summers on record. Everyone was so busy I think I could have used another few weeks off. Vacation basically began just as the summer was ending. We, as a family, really needed to sit still and do nothing. Both boys had school this summer and it is quite interesting to try to fit an entire semester worth of learning into 5-6 weeks. There is no rest and no respite. They study all the time.

In actuality it was really good for both of them.  CM2 got his foreign language requirement out of the way. MrGS dashed off his bridge-requirements before starting his masters program.

It was also an eye opener as to how to help CM2 a little bit more with his schooling. He did really well at Spanish, but there was an added feature that we are working through right now. Since he had school every day for 5-6 hours, with only Wednesday off, he had to be really really organized. The para helped with that. He made certain that CM2 was on target. That he had the lessons done. He helped him through the labs and helped him see how things all fit together. In fact, on Wednesdays he didn't stay home. He went into school to work on homework, organization and meet with the professor for extra help.

CM2 was doing so well, that a few times he even corrected the para's Spanish, which wouldn't be a big deal except that the aide is an Hispanic-American. He had actually immigrated from a South American country as a child. So I find it really funny that CM2 was correcting his Spanish. Honestly so did the aide. It did give him a chuckle. In fact, CM2's Spanish was so good that he was able to talk to some of the cafeteria workers in Spanish. The aide relayed that the staff was so impressed because CM2 not only spoke well, he spoke with a good accent.

So what was different about this summer and the past few semesters? Apart from the fact that we finally figured out the medicine issue, the organization issue was also taken care of. The aide working with CM2 every day, helped him with his executive functioning skills. He showed CM2 what he had to do and the best way to go about it.

We had always wondered what happened with CM2 during the semesters. He is a very bright youngman. Very on the ball. There should really be no reason that he can't do the coursework and do it well. Happily we think we now have the real answer.

Listen we had always tried to help CM2 organize his life. We had him make up schedules. We had him show us what needed to be done. We have copies of his syllabi. But at some point in his studying he would get lost. He would drift. He would take that road less traveled, but just never come back to the main thoroughfare and get back to where he needed to go.

At first we decided to remove him from his office when he needed to study, but didn't need to use the computer. Take the temptation of the electronics away from him and his skills should get better. He would go up to my bedroom and sit on my bed. Nope it didn't help. He invariably fell asleep. (You remember how comfy mom and dad's bed happened to be.)

Then we moved him to the main diningroom table. He could spread out. There was no distraction, except for his iPhone and the twitter push notifications. (which presented another all new issue.) At least it also wasn't comfortable like my bed. He had to sit in a good chair and concentrate. IPhone off to the side. Volume turned down so he couldn't hear the dings. It worked for awhile. It remains the go to place for studying on the weekend.

But ultimately we realized that the best place for him to study is at school. In a cubby. In the library. Surrounded by his fellow students. The para helps him go over what needs to be done. They sit at the table which has become his "spot." In fact the librarian knows which desk CM2 prefers and even mentioned one day when he was sitting somewhere else. And miracle of miracle, the work gets done. He goes over his reading. He works on his papers. He even interacts with other students. He is gone from early in the morning until late in the afternoon. Coming home just in time for dinner. (Personally neither hubby nor I could study at school and was most successful working at home. So, no, your children do not always take after you, including when it comes to school.)

So far, CM2 is organized. He is productive. He is tired, but he is successful.

Next step, since we have figured out the "place" issue, is tackling the issues with executive functioning skills. CM2 can schedule with the best of them. He just needs that little oversight still and that ever so slight little push. He needs to not feel overwhelmed by the assignments and he needs to be shown how it all will work out. He simply needs to be shown that he can juggle his video games, school and talking to other students too. It's that OCD, time management catastrophizing aspergean  issue that has haunted him his entire life. Fear of too much work. Fear of not knowing where to begin. Fear of having to give up every fun aspect of his life. The anxiety paralyzes him at times. Hopefully this new executive functioning regime will help him see things a little clearer.

Meanwhile, he is also meeting people. Here's hoping that being on campus so much leads to a friendship or two. He never has to go to parties, but it would be nice if he realized that he can make friends and have peers like him as well. After his best friend in high school decided to stop being friends, he sort of had given up on friendships. But he does like to interact with those his own age, especially when they talk about video/computer games. Especially if they are feminine, smart, pretty and blonde. Making friends is a hard skill to master for anyone unless you are naturally inclined to be an extrovert. But happily as long as he is on campus he is at least learning and trying in every aspect of his life including the social. Which is a huge accomplishment all on its own.



Elise

Tuesday, September 3, 2013

Welcome 5774, The Jewish New Year, May the World Find Peace




Apples are the symbol of life and honey...well that's self explanatory.....



This week marks the celebration of the beginning of the universe. According to the sages it was 5774 years ago that God in his infinite wisdom decided to create life. It should be "Creation Week" on TLC. I mean they do run "Shark Week" and that odd program about real-life mermaids.

Meanwhile, science tells us that the universe is actually billions of years old. But despite the disconnect between disciplines, the lessons of Rosh Hashana should not be lost upon humanity. For this holiday is about introspection. We are challenged to think outside our own lives and try to figure out how to make ourselves better people.

Each year humanity is called by the sound of the shofar to awaken out of its slumber. We are challenged to become more than we thought we ever could....


It's 5774: What Do You Stand For? Street Shofar treks across Israel -- from Jerusalem's Old City to military bases, from Bedouin villages to posh suburban parks and hot Tel Aviv night clubs -- bringing the shofar's eternal message of PEACE, UNDERSTANDING and NEW POSSIBILITY. What do YOU stand for? www.ikar-la.org


The meaning of Jewish New Year explained by some hip-hop yeshivaniks....some play a mean guitar







And here's my perennial favorite....





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Considering what is going on presently I  am not so certain we will see the world at peace this year. But there is always hope isn't there?

Influential Israeli rabbi writes prayer for the Syrian people

The World? Is Offended by the Use of Chemical Weapons

The Idiots Guide to the Middle East

Obama's Bread and Circuses



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May God write all innocents into the Book of Life for a good year....

Shana Tovah Umetukah






Elise
h/t Anne's Opinions for some of the videos