Monday, January 31, 2011

Autistic Child Banned From Xbox LIVE Apparently DID Cheat

Just in case you didn't see this update. This boy apparently did cheat and his mother then used his autism to try to get his credits back. This is without a doubt a disgusting use of the boy's disability. Not only does it not teach him right from wrong, it casts doubt on anyone who actually does have a claim of discrimination based upon their autism. (I suppose in much the same way we are always afraid that with each false claim of rape, those who are truly sexually assaulted will not be listened to.)

On top of everything else, this story caused a huge fight between my boys. Collegeman was obsessing about what would be the best way to help the 11 year old boy. Meanwhile,  HSB insisted that XBox would not have labeled him a cheater if it were not true because everything is investigated thoroughly. Of course a fight ensued with accusations of inhumanity, lack of empathy and various forms of name calling between the boys. Furthermore, I was so upset that I contacted brilliant-computer-sis to see if she knew anyone who could help. Luckily she did not. Could you imagine the professional embarrassment in going to bat for a lie?

On the other hand, it was also an interesting association for the boys. Collegeman wanted to help another person with autism because he felt that that person had been wronged. Empathy as I have said, is a huge part of who he is. HSB while not totally empathetic, understands how XBox works and the machinations they go through to keep the games honest. He was not empathetic because he said if XBox said the boy was a cheater that meant that he was. Remember, we have taught the boys that their autism is no excuse for wrongdoing of any kind, including lying and cheating. Additionally, we, as a family, did learn that when it comes to games, computers and the world of the Internet we should really listen to HSB more than we do.

All in all we did come to more of a realization about who we are and what we are capable of in this house; what our perspective happen to be and the kind of people the boys are turning into. I am proud of both of them as a matter of fact, well not for the fighting part, but for the internal need to help and the ability to take information they know and apply it to a real situation. However, I am afraid that in the long run episodes like this one, where people abuse the system in some way, will cause society to look askance at real claims of abuse and discrimination when it comes to autistics and their needs. Remember our children are just in the beginning of their life experiences and the fight for their rights is already an uphill battle.

Until next time,


Elise

Sunday, January 30, 2011

February Happiness Project-Love

Always Romeo and Juliet.....




Love of country.....



Love of a child's laughter....



Love of Earth....




How about just love...




Until next time,


Elise

A Lego Computer First Created in Ancient Greece

This has to be one of the most amazing uses of Legos that I have ever seen. The Antikythera Mechanism is an ancient machine that was created over 2000 years ago in Greece. It laid buried until the yearly 1900s,  however it is only with the advent of imaging technology that it could  be studied properly. Until recently no one could see inside the mechanism or figure out what it was used for, even though theories abounded. Truly, there are things that the ancients understood about our universe that have been lost to time....




Meanwhile from another perspective, perhaps aspergers is not such a new disability after all...Just some food for thought, as they say...

Until next time,

Elise

Thursday, January 27, 2011

Response to the Tiger Mom

The news has been replete with discussions about the book by Amy Chua, Battle Hymn of the Tiger Mom.  Needless to say her style of parenting has been met with contempt and charges of abuse. Here is the original article in the New York Times that started the brouhaha. I just watched Professor Chua on Fox and Friends explaining her style of parenting and attempt to resurrect her reputation. Fox and Friends asked for people's responses by email. Here is what I sent:

I truly believe that there has to be a happy middle in parenting. My husband and I require our children to do their best in school and everything they do be it music, sports and having fun, but no one can be perfect all the time. A hard won C is an even greater accomplishment than an easy A. There are times when perseverance and fortitude is what is important and not the letter grade. The ability to pick yourself up by your bootstraps is something that needs to be taught. Sometimes in life no matter how hard you try things will not be the way you want them to be and you need to learn to deal with that. I wonder what a parent who requires perfection from their children would do if they had a child with a learning disability and no matter how hard the child tried they could not process math or language perfectly?

Now I do not know Professor Chua or her husband. But I live in a town where excellence and perfection are required in the majority of homes. A child's worth is judged by their ability to get into an Ivy League college, win sports or music trophies and garner academic awards. No matter how you approach it, this mindset is just disturbing.

Until next time,


Elise

P.S. Ginabad's comment reminded me that I recently wrote a post about perfection called Boot Camp Perfect-WTF

Wednesday, January 26, 2011

International Holocaust Remembrance Day 1/27



How wonderful it is that nobody need wait a single moment before starting to improve the world.                              - Anne Frank


 
Kaddish, the Jewish prayer for the dead. 

To learn more about the Holocaust please go to The US Holocaust Museum and Yad VaShem websites.


 
Ofra Haza


 But in the end The Jewish People Live....




Remember: The Nazis began their experiments with mass murder on the disabled before they turned full force against the Jewish people. Whether it is International Holocaust Remembrance Day or the Jewish remembrance day called Yom HaShoah, I remember. Not just because my children are descendants of the 3500 year legacy of the Jewish people, but as persons with disabilities they are twice threatened by intolerance, ignorance and sheer unbridled hate.




Until next time,





Elise


P.S. Besides the well known Diary of Anne Frank, I recommend for tweens (9-13) Number the Stars and The Devil's Arithmetic. For older teens I recommend the book by Nobel Peace Prize winner Elie WieselNight.  For children in the early years of elementary, this of course can be a very frightening subject, but there is one book that I really like The Yellow Star, The Legend of King Christian X of Denmark. The story of what we as human beings can do in the name of what is right. Actually that one is good for all ages as well.

Monday, January 24, 2011

Perspective

I was going to write a post about getting your child to function when the sun is not yet up and when the sun goes to bed early. While I was looking for a fun video of an eclipse I found this instead. Helps put who we are and our importance in the universe into some kind of perspective.



Hayden Planetarium

Until next time,

Elise

Sunday, January 23, 2011

Of Insomnia and Cortisol


I hate it when I can’t sleep. It actually happens in the middle of the night. I tend to fall asleep with no problems, but then wake around 2 or 3 a.m. and never get back to that dreamy world of rest and relaxation. Lucky for me that during the week there are reruns of comedies that I enjoy and of course, Star Trek Next Generation on TV.  There used to be Star Trek Voyager on too, but Spike took that off the air. (I did think of writing a protest letter but thought that was just a little too…obsessive.)For some reason however, no one puts on Star Trek: Deep Space Nine. I really thought that Deep Space Nine, was one of the more interesting of the Star Treks. It definitely went back to the age old sci-fi formula where there were questions of right and wrong, and a true understanding that sometimes things are resolved with a little or even a lot of gray involved. I would also love to see Babylon Five reruns as well. You see, unlike Sheldon I find it fun and quite frankly its derivative nature is what  I enjoy the most.


The reality is that I am not quite sure why I keep going over and over issues in our lives. Honestly things are getting a little better as anyone who reads this blog knows. The boys are doing well at the moment and we have several plans in place for their year to come. Hubby has started a new position and it holds out a lot of promise for him. Heck even the dogs are doing well. The Wheaten, though, is getting old, his hair is turning gray and he spends most of time lying on the couch directing house traffic. He doesn't even bother to get up to greet me when I come home from doing errands. he just lies on the couch and woofs a hello. Truthfully, there is absolutely nothing to be obsessing about at 3 in the morning, especially since at that time of the day you can’t do anything, about anything, anyway.

So here I am writing this blog and wondering if for some reason that parents of autistic child can truly suffer from PTSD. Oh not the same kind of PTSD as our wonderful combat veterans, even though they say that parents of autistic children and adolescents exhibit the same level of cortisol as recent combat vets. I wonder if everything we go through in dealing with schools, bureaucracies, money issues, behavioral issues and the loneliness comes to a head at some point and why our brains just can’t stop churning? There have been so many years of stress and trauma (In fact I would have to say that the last three years have been some of the worst we have ever experienced, since collegeman's initial diagnosis.) Just because things are looking up doesn’t mean that our inner ego can turn that off. It doesn’t mean that we can go “YIPPEE” and go run in a field of tulips. (I say tulips because they are the first flower of spring that appears in the stores sometime in February. Tulips are a symbol of a new beginning for me. Yes I know they are probably from hot houses, somewhere across the world, but I don’t care.)

So I sit here, early in the morning. Thinking about things that have long past. That have been resolved. That truly don’t mater anymore. Yes I worry about the future, but have been trying to recognize that if I prepare for all eventualities then there may be a way to deal with any issue. I also came to the conclusion that at sometime, somewhere I can no longer protect the boys and they will have to do it all themselves. I fret what will happen if collegeman doesn’t get into law school. I fret what will happen if he does. I fret, how HSB will handle college and I fret what he really will study and what will make him happy in his life. I suppose it comes from my need to control the world around the boys to make sure that everything aligned. I have yet to lean that I cannot account for every variable and that sometimes, most of the time, we need to deal with unexpected realities. We may be momma-grizzlies or warrior-mothers or what ever name you want to give yourself, but at some point we do need to let the children fend for themselves in the world at large, with all the bumps and bruises that entails. All we can hope is that we have armed them with the right amount of strength of will to be able to pull themselves up by their bootstraps if the need arises.

It is interesting that when your child is diagnosed and when you fight the fight for so many years, no one ever tells you about the insomnia and the fact that no matter what happens in the future, that past lingers on like skunk odor embedded in your best suit of clothing. The truth of the matter is that I need to learn to let go. But, of course that is easier said than done.

Until next time,
Elise

Friday, January 21, 2011

Handbags, Handbags, Oh How I Love Handbags


I have decided that there is too much overwhelming crap going on in life right now, whether politics, autism, school, finances, employment, non-civil discourse, and just down right having to deal with a bunch of assholes in my daily life, on social media and in real life. So for the moment I am going to take a break from this all-serious and so-called intellectually important journey and discuss something totally materialistic, bombastic, over the top and down right fun and quite frankly truly important. I am going to write a post about handbags. Why handbags? Because, they make me happy.

You got it handbags, purses, bookbags, shopping bags, backpacks, suitcases, travel trunks, briefcases, lunchboxes, sacks, cell phone holders, iPad covers, computer bags, babybags and even paper versus plastic, versus going green at the supermarket. Ok, not really all of those mentioned. But I am definitely going to talk about how I love love love handbags. They are my obsession. Some women love shoes. Some women love clothes. I really don’t care too much about either. I buy shoes because I have to. Don't get me wrong, I like shoes. I know about the latest designs of shoes and the best designers, but they don't give me that little endorphin rush. I buy clothes because I have to. Don't get me wrong, I like clothes. I know about the latest designs and the best designers. But clothes don't give me that little endorphin rush. But handbags, oh my, oh my, oh my, are my drug of choice.
Louis Vuitton

Honestly, while there are people who would love to be in the middle of a pile of money or a ton of puppies, for me you just have to put me in a pile of handbags and I am in heaven. OK if you put me in a pile of money I wouldn’t give it back and yes I would end up taking all the puppies home, but you get the general idea.

When I am not reading autism blogs or scientific papers I am surfing handbag websites. When I am not reading political blogs or newspapers or journals, I am surfing handbag websites. I buy fashion magazines when there is an article about the latest handbag trend and I even have coffee table books of pictures of….you guessed it, handbags. I even love the little charm bracelets that have handbag charms and just adore the Swarovski broach that is different kinds of handbags. I was watching Cake Boss the other day and he was making a fashionista handbag cake…I did not turn the channel.

Chanel Handbag
You bet I also have my wish list of which ones I would buy if I could (OK we all have those kinds of lists). I, of course, do not wish for the cheap handbag. Heck it’s a fantasy wish list, so if I wish, I will wish big. Heck, why wish for a $25 handbag when you could wish for a $10,000 Hermes birkin bag (you bet I know all the kinds, types, designers, makes and models). I know, I know, it is totally insane to pay that much for a handbag but to tell you the truth if you could afford that bag, what else could you really afford for your child? I mean after the genie appears and you have those three wishes; once you have wished health on your child, taken care of your parents, what else would you wish for? That’s the level of total and absolute abandon I am going for in my handbag wish list.

Hermes Birkin Bag
So in keeping with my handbag wish list tradition I have actually found, or rather refound this terrific handbag site called The Purse Blog. It is a handbagaholic’s best friend. There are blogs about purses. There are blogs about designers. There are discussions about runway events. There are even giveaways to try for…you never know. (Like the lottery, you have to be in it to win it.) There are pictures galore of those fashionista friendly handbags and above all, heads up about sales at designer websites.You can also follow them on twitter and facebook. Which I did.

So if I am not on my social media, reading autism stories, science posts or political blogs discussing horrors and potential doomsdays of some kind or other, I am immersed in the world of my handbags. I like my world of handbags. I like the direction of the unimportant. I like the total decadence. I like the self-centered egotistical nature of thinking you are worth something so extravagant. It’s the only time I actually feel like my world is normal, in a rather materialistic me-me-me sort of way.

By the way, you guessed it; my favorite movie is the Devil Wears Prada. Lord, just can’t help myself.



Ok my favorite scene:

Yes, I did work in the magazine industry in New York when I first came to the City. I was one of those one million girls that would have killed for that job, but never even got my foot in the door....

Until next time,


Elise

Wednesday, January 19, 2011

Review and Reset


It is very essential that you take the time to review your child’s goals and their progress, irrespective of when the school or therapist does it, and make sure that everything is on track the way it should be. It is something I just concluded. It is past the New Year, which would seem like a good beginning point. It is not the end of the year or the time for an IEP meeting. There isn’t any real on-going issue with either boy at the moment. HSB was accepted into college weeks ago and collegeman ended his fall semester the middle of December. The question is, how do I decide when to sit and review what is going on? Why now?

I tend to divide our lives up into segments. The segments revolve around school. The end of this week is the end of the second marking period for the school year and the beginning of the spring semester for collegeman. It in all actuality is the start of something new for both boys. So it becomes time to sit down and reflect upon just what goals we have for them and how they are gong to be implemented.

In that vein, we, collegeman and I, met with the disability director at his college in order to figure out what his goal for the semester should be. Grades and academics is not really an issue for him, there are some executive functioning problems, but they I think will always be there, so we need to teach him to stay on top of those. What she wanted, was for collegeman to work on his independence.

As I mentioned before, when you have a para, or classroom coach it is a double-edged sword. These people are truly needed to synthesize the social arena that your child lives in and teach them how to “of the moment” deal with the situation that they are surrounded by. However, the child can become too dependent on their support and miss out on developing those independent coping skills. In collegeman’s case, I think he relies on his coaches for several reasons:

1)   The professors do talk rather quickly and collegeman being afraid to miss a word has to write absolutely everything down. So the coach also becomes a note taker. Our college does not have a note taker program per se, even though it is generally a basic accommodation at most colleges, for a variety of reasons. They are a small college and there is a limited budget, and limited access to students who may want to participate. While there are those on community service scholarships, it does not mean that they would be available to support collegeman and honestly, we never even asked since the coaches were there anyway.

The truth of the matter is that collegeman needs to learn to be able to parcel out what is being said, to figure out what is and is not important on his own. Honestly it is a skill he should have learned in high school, but there too he had note takers and became dependent. We have given him study skills lessons, executive functioning lessons and note taking lessons. There are many new gadgets on the market that may be of assistance, but right now there seems to be too many steps involved in order to use them and the need to remember every step would just add to collegeman’s anxiety. What he needs is something that you turn on and does the work for you in a sense. We have bought him tape recorders in the past that he has yet to truly use; so maybe this semester we can talk him into it.

2)   The coaches also help collegeman remember his assignments and help him organize his world. This is not necessarily a bad thing, but to reiterate he needs to learn to employ his executive functioning skills on his own. It should not be hard for him to take his notes and put them in binders by class, by test and by assignment. The question I have is, if these people were not there for him, would he step up to the plate? He has done that for everything he has faced, so I do believe that he would be able to eventually organize himself as well. It will undoubtedly take time and a lot of effort to get him to rely only on himself for this but it is something he is going to have to do, especially since he wants to go onto graduate school.

3)   Being able to understand the flow of a classroom. Now here is the interesting conundrum. Transitions are still difficult in some respects. New things and being able to read new situations are very hard for collegeman. The reality is that they probably will always be difficult. But he needs to figure out for himself how to handle these situations. Remember you can always teach them the tools for self-reliance but they are the ones who have to figure out how best to use it for themselves. This coming semester he will have several professors who are familiar with him already and one who has substituted in classes he has taken before.

We did discuss how after collegeman transitions into the semester though, that there is at least one class (we will see how the other go), which the coach could pull back from. Probably sit in the hall just in case. Collegeman had actually attended this professor’s class on his own before and it wasn’t really a big deal. The professor was very nice and understanding.  So we will have to review probably around midterms and see when the pull back could take place.

Honestly our goal for collegeman is simple. It is to become more independent. This concept also truly freaked him out. For not only does he rely on the coaches for support, but they are also the only human interaction that he generally has in the college. He actually considers them his friends. He really doesn’t have peers as friends. However, he is finally open to that idea, but is rather unsure about how to proceed. He asked, “How do you know if someone is right for you as a friend?” We talked about interests and pursuits, as a way of gauging whether someone is friend material. We also told him that they don’t have to have your interests or agree with you, but they definitely have to be nice and supportive of what you want to do and who you are. Yeah, this one is definitely a work in progress. So another issue that we have to deal with is how to get the coaches to help him make friends or have them help him identify who can be a friend. That has been happening somewhat with collegeman helping out on the track team, but since track was really quiet this semester nothing much was done with the team. Hopefully spring will be more fruitful for him.

To review for HSB, was something totally different. He is beginning his second semester senior year and senioritis set in sometime in October. Honestly, he has been having such a good year, that there truly wasn’t very much to review. We did tweak his new meds somewhat and things do seem to be getting even better. I am not one to rely solely on medication, but holy moly there is such a difference in him you can’t even believe it’s the same child. As I said in an earlier post, medicine is a god-send to our children, but you MUST MUST MUST pay very careful attention to what is going on, and if they are not getting better then you need different meds, or quite frankly a different doctor.

It took me a while to come to the reality that the meds were being a hindrance and not a help, and for what he went through, yes I blame myself. Honestly I should. I was afraid to change doctors and afraid to start anew. I guess at times, we need to review our own failings when it comes to our children as well. It doesn’t hurt and it doesn’t take away from all that you do, but a little introspection (that seems to be my word of the month) is good for everyone once in awhile.

I also spoke with the disability director at the college and made her aware of my second offspring and his needs. We agreed that he requires a classroom coach and then will review what will happen once he gets to school. I know for a fact that he will probably need the support for at least the first if not second years, unless there is a miraculous maturing that occurs. He is doing so much better after the meds change up that you truly can’t believe that it is the same child, but college is a very unstructured environment that is so tremendously fluid. He could get overwhelmed or he could not get overwhelmed. He may actually come into his own, when not inundated with superfluous sensory issues. He may just thrive and find himself and his rate of speed…or not…we will have to wait to see. (A lot of ifs, ands or perhapses along the way, I know.)

Also even though she said I could hand in the old school based testing for HSB from two years ago we are going to have them redone privately. Since he is such a different child we want a more up to date evaluation of him and quite frankly one that shows how calm and even keeled he is. One thing that I think about as a parent of two young men with aspergers is the notion that not too many people in society, surprisingly on college campuses as well, understand or know about autism. With the recent trauma surrounding violent mental illness and classmates being afraid of those that "act strange," I want it on record that his idiosyncrasies are just about his autism and nothing threatening at all. No reason to wait and see if someone says something because they think there is an issue. Right from the beginning just show there is no threatening issues so the college can get on with the business of educating your child. Truth be told, I think it was a good thing that we had done those tests for collegeman before he entered college. He had such a rocky anxiety filled start, when I met with the Vice-President of the college there was no question that all he needed was transition support and nothing else. Sometimes it does pay to be proactive and think about the worst scenarios, just so it never gets to that point.


(HSB likes to tease collegeman about his idiosyncrasies, which invariably leads to the "Sheldon retort" from collegeman, along with a huge chuckle. You bet, he just thinks Sheldon is awesome, and yes we have the saying on a t-shirt as well. Now,of course,  after HSB is tested they can both claim that line for their very own. Can't wait for that tete-a-tete.)

Honestly the same issues that we are facing with collegeman are the same potential issues that we will face with HSB if we do not stay on top of things. The boys are also so very different and manifest their autism in so very different ways that I am also sure that a brand new, as yet unthought of issue will probably arise and cause us to say, why the hell did we not prepare for that?

But for right now, HSB is heading into midterm week, with no midterms. He will hand in a few papers and spend the week playing video games and sleeping. He will be a teenage boy, happy in his world of no responsibility and adolescence. It won’t last for long. So I am planning to allow him to enjoy it…but if he wants some more video games, he is still going to have to do chores and especially clean the bathroom. Interestingly, he cleans the bathrooms quite fastidiously. Considering how his office is a germ cesspool inundated with every microbe from flu virus to e-coli at the moment, who would have thunk it possible that he was so good at cleaning? (Been at him to clean that room almost every day. Guess what he will do first thing next week, will have hubby, aka Wise Old Sage make sure he does it.) So it only proves my theory, that HSB when he wants to do something, he can do it quite well. Now if only we can get him to think that school is another thing at which he can persevere, not just his video games….

Until next time,

Elise

Monday, January 17, 2011

We Shall Be Free


Garth Brooks We shall be free

Rob | Myspace Video


This ain't comin' from no prophet
Just an ordinary man
When I close my eyes I see
The way this world shall be
When we all walk hand in hand

When the last child cries for a crust of bread
When the last man dies for just words that he said
When there's shelter over the poorest head
We shall be free

When the last thing we notice is the color of skin
And the first thing we look for is the beauty within
When the skies and the oceans are clean again
Then we shall be free

We shall be free
We shall be free
Stand straight, walk proud
'Cause we shall be free
When we're free to love anyone we choose
When this world's big enough for all different views
When we all can worship from our own kind of pew
Then we shall be free
We shall be free

We shall be free
Have a little faith
Hold out
'Cause we shall be free

And when money talks for the very last time
And nobody walks a step behind
When there's only one race and that's mankind
Then we shall be free

We shall be free
We shall be free
Stand straight, walk proud, have a little faith, hold out
We shall be free

We shall be free
We shall be free
Stand straight, have a little faith

We shall be free


Statement from Freedom House : Freedom in 2011

Global freedom suffered its fifth consecutive year of decline in 2010, according to Freedom in the World 2011, Freedom House’s annual assessment of political rights and civil liberties around the world. This represents the longest continuous period of decline in the nearly 40-year history of the survey. The year featured drops in the number of Free countries and the number of electoral democracies, as well as an overall deterioration for freedom in the Middle East and North Africa region.

A total of 25 countries showed significant declines in 2010, more than double the 11 countries exhibiting noteworthy gains. The number of countries designated as Free fell from 89 to 87, and the number of electoral democracies dropped to 115, far below the 2005 figure of 123. In addition, authoritarian regimes like those in China, Egypt, Iran, Russia, and Venezuela continued to step up repressive measures with little significant resistance from the democratic world.
“This should be a wake-up call for all of the world’s democracies,” said David J. Kramer, executive director of Freedom House. “Our adversaries are not just engaging in widespread repression, they are doing so with unprecedented aggressiveness and self-confidence, and the democratic community is not rising to the challenge.”

Published annually since 1972, Freedom in the World examines the ability of individuals to exercise their political and civil rights in 194 countries and 14 territories around the world. The latest edition analyzes developments that occurred in 2010 and assigns each country a freedom status—Free, Partly Free, or Not Free—based on a scoring of performance on key democracy indicators. Read the rest here.

For a download of the recent freedom survey, booklet and maps of freedom worldwide go here.

To learn more, and find out what you can do to help, go to their main website: Freedom House.org.



Until next time,

Happy Martin Luther King, Jr. Day, 

Elise

Saturday, January 15, 2011

The Week That Could Have Been Versus The Week That Was


This post is really two parts: First what made me angry over the past week, and Second, what should have been the actions taken as a result of Tucson and weren't.

I was wondering what was making me so depressed this past week, well other than the obvious trauma in Tucson. It took some introspection, but I think I have come up with the answer. I for one don’t like being manipulated. Yes, that is exactly what was going on by the media, the political elite and most of the blogosphere. I don’t like being told what to think and how to think and what I am supposed to be angry about. I don’t like someone else setting my priorities for me, and above all I certainly don’t like being used.

Ok, so what am I talking about here? As anyone who knows me from twitter or facebook, they know that I have some very strong political opinions. I stand my ground and believe what I believe. I have no issue with discussing politics, you can read my other blog Liberty’s Spirit  for my perspective if you like, and occasionally I do mention some issues here on my autism discussion website. I do for the most part try to keep the topics on my blogs separate (but not on my  twitter or facebook  accounts). I do not think that one thing should be interrupted by another. I do not think that someone should feel uncomfortable coming to seek answers or support for their special needs child because they think their politics, religion, ethnicity would preclude them from seeking comfort and support. So for the most part I am apolitical on this blog.

But this past week changed all that for me for the moment and that is why I write this post. (Don't worry this too shall pass.) I do not like being used and manipulated by those that truly show no respect for events and how they unfold. I do not like the cynical political pundits who have talked Tucson and only Tucson for the entire week and have yet to actually say anything of import. I do not like how the discussion is of nothing but self-indulgent, self-righteous, holier-than-thou claptrap, with finger pointing and accusations of complicity in murder that is repulsive. As I said in an earlier post, no one is talking about the real issue and that is the treatment and care of those with mental health issues in this nation. By the way, when Congress started talking about a 1000 foot area around themselves when they go out in public for protection from the "people," hubby blithely mentioned, that maybe these morons should be talking about putting 1000 foot corridors around children who live in high crime areas so these children can simply go to school unafraid or maybe just be able to grow up. Hubby does have a way of pushing through the bullshit.

However, what I mostly resent, especially as a Jewish-American is the attack on Sarah Palin and the fictitious bullshit about the term “blood libel.” I don’t give a crap if you like her not. I don’t give a crap what you think about her politics, but to manufacture nonsense because somehow a particular term belongs to one group or another is abhorrent. (I am also not ignorant of Jewish history. I grew up with a father in the Jewish philanthropy field, studied Jewish history, taught it and continue to live it.) I don’t like that the National Jewish Democratic Council (an arm of the Democratic Party)decided to create a "Jewish" issue and that the use of the term "blood libel"  was the one. Condemning the virulent worldwide anti-Semitism which fuels the call for the genocide against the 6 million Jews of Israel, the NJDC has nothing to say, but Palin they chime in. Ignoring media pundits, and international organizations  who routinely delegitimize the Jewish state and hence the Jewish people the NJDC has nothing to say. But Palin and the use of the term “blood libel” this is Earth shattering to them and destructive of American values. Remember however, this was also the same group that demonized Senator Joe Lieberman, a former Democratic Vice-Presidential nominee. The problem was that noone seemed to think for themselves and everyone started to pile on this inanity.

Listen, I am well aware that the job of the Jewish Democratic Committee is to keep the Jewish democrats still democrats. They say that in the last election, Jewish Americans, a rather large voting block in some key Electoral College battle states, either didn’t vote or didn’t vote for democrats.  The Democratic Party is seeing their Jewish constituents flee because of the Obama administration’s treatment of Israel. So they used this Tucson event and Palin to try to stem the flood. If they could make Palin, a huge Israel supporter, out to be some moonbat anti-Semite then perhaps the Jews will not flee to the other side of the political aisle. As I said I don’t like being manipulated or used by anyone for any reason. (By the way, go here [ here, here, here, here] for a discussion on the term “blood libel”, its political ramifications and the sheer audacious insults of  political manipulation.). An interesting political aside, Obama is supposed to meet with a large group of New York donors next week to begin to fund his 2012 political campaign. These same donors/bundlers were instrumental in helping finance him in 2008. Most of them have so far refused to help, fund or join his new campaign for a variety of reasons. I leave it to you to figure out why suddenly conservatives and particularly Palin were more vilified than normal by democratic operatives right after Tucson. PS don’t leave comments about Palin, her politics, intelligence, clothes, hair or whether you like her eyeglasses, I won't print them, that’s not really the gist of this post. This blog post is about cynical media and pundit manipulation of tragic events. This post is also not about whom I support or don't, it's about fairness, propaganda and sheer unadulterated disrespect for the intelligence of the American people. Who by the way, at a margin of 4-1, agree with me, that the pundits are out of control this week and owe Sarah Palin an apology.

Now to the second and real issue that should be being discussed; the cowardice of the mental health community to make noise during this tragic week. All I ever saw was the occasional tweet from NAMI of Massachusetts trying to get out the message about mental illness; other than that nada, nothing, zip, nil. To allow those in the media to usurp this event for political purposes and not call them out to the real reasons why it happened is willful negligence on the part of those who are supposed to be in the forefront of the mental healthcare issue. At no time, have I seen a discussion from any of these national mental health organizations on:
How the shooter needed help and didn’t get it;
What possibly could have been done for him;
The need and support in society for families of those with mental illness;
The lack of compassion and appreciation of the struggles of families with member who have mental illnesses;
What is a mental illness (a basic concept that should have started right away);
The differences in mental illnesses;
The need to differentiate mental health issues;

Furthermore, there is a huge chasm of silence coming from the autism community as well. The shooter was not autistic in any way; however, throughout the blogosphere those who are ignorant and uneducated started pointing to autism as the reason that the shooter did what he did. Nothing, not a word from any organization; they just stuck their heads in the sand and seem to be waiting for this horror to pass them by. Where are they and why are they not out educating the public? Why are they not writing letters and demanding to be heard on national television? What, they can’t discuss the overdone obsessive stupid issue of vaccines? They can’t discuss the concept of “cure” versus “recovery” versus “acceptance.” The national autism organizations actually have a real of the moment issue to discuss and not a one of them knew what to do.

I have news for all those neurodiversity proponents too; this was your damn week and you blew it big time. This was the week to start the national discussion about tolerance, acceptance and understanding. This was your week to point out that differences do not mean you are violent. This was your week to open your mouths and start to get your message out. This was your week to start to teach about what autism is and is not and what this community needs. This was your week to demand to be heard and to not be ignored, shunted aside or belittled. You allowed yourselves to be frightened into silence or manipulated by political machinations. Or where you afraid that the democrats wouldn't allow you back in the White House for another photo-op in support of disability rights if you yelled foul and called them out for their cynicism? 

Interestingly though, so many of you neurodiversity bubbelehs had time to go after Sarah Palin or call me ignorant or some other choice words, because I tweeted that this political crap was bullshit and that the issue was mental health alone. Oh and by the way, next time one of you of the spineless neurodiversity crowd, tells me that I am abusive, ignorant and a terrible parent to my autistic children because I expect them to participate appropriately in society, that society isn't going to presto-changeo for my children and shouldnt' have to or that I write that autism sucks, you can kiss my ass. Totally done with caring about the perspectives of the  "leaders" or "members" of the autism community about anything, especially when it concerns my boys.

So this was the week that something positive could have come out of a horror. Instead the mental health and autism communities blew it big time. You don’t like my perspective don’t come back. I don’t care. Meanwhile, I will continue to give advice if asked, teach parents to advocate for their children and be a virtual shoulder for whomever needs me, no matter politics, religion, ethnicity or even which side of all the autism community issues you happen to be on. But make no mistake I am beyond disappointed in these communities and its so-called representatives. Shame on them all.

If you don't come back, I wish you and your child godseed, no matter what you wish me and mine (which at times was  unprintable). If you do come back, until next time,


Elise

P.S. Because of society's ignorance about autism and mental health we are planning to have a full psychological work up done on HSB, just as we did for collegeman before he entered college, so that no one has the ability to point a finger at him and ruin his future. (The school did not request it, even though they could have, we decided it was best for our child to cover all eventualities). We shouldn't have to do this in order to protect our children's right to a future but no one out there is standing up for them and those like them. So we as their parent have to protect them the best way we know how. As I said above shame on the mental health and autism communities for not demanding a vibrant discussion about mental illness. Meanwhile there was finally a small article in Newsweek with NAMI just yesterday about the state of mental health care in this country. That was it....if you blinked you would have missed it.

Thursday, January 13, 2011

New Zodiac Signs

First they told us Pluto is not a planet anymore and now we have been living in zodiac la la land. I need more consistency with my solar system. Next thing we are gong to find out is that you can travel through time, beam from the Starship Enterprise and that lightsabers are not fiction (By the way, I want one). To those who scan the skies I do request that you figure  out whats what and then tell us. Who knows the problems I could have avoided if I had been reading the correct horoscope all these years.

Capricorn: Jan. 20-Feb. 16.  
Aquarius: Feb. 16-March 11.
Pisces:
March 11-April 18.
Aries:
April 18-May 13.
Taurus:
May 13-June 21.
Gemini:
June 21-July 20.
Cancer:
July 20-Aug. 10.
Leo:
Aug. 10-Sept. 16.
Virgo: Sept. 16-Oct. 30.
Libra:
Oct. 30-Nov. 23.
Scorpio: Nov. 23-29.
Ophiuchus:
Nov. 29-Dec. 17.  (Yep, this one is new — read all about the Ophiuchus way of life here)
Sagittarius: Dec. 17-Jan. 20.




So now I am a Virgo. Apparently the universe is moving backwards?


Until next time,

Whenever that is now (hopefully time is still linear),


Elise


Wednesday, January 12, 2011

Just Because........

My youth:











Ok, I admit it, I'm a Jersey girl.....(Yes, Billy Joel is from New York, but we adopted him.)

Until next time,

Elise

One of my faithful readers, Staying Afloat (see comment below) is right I forgot Bon Jovi...oh how could I, especially when the following song has so much meaning for me. It was sung at the Concert for New York right after 9/11. Bon Jovi sang this song in honor of the firefighters and police that lost their lives trying to save people trapped in the buildings. Remember as everyone was going down the stairs these heros were heading up the stairs to meet the danger....

Here's Why Parents of Special Needs Children Grieve

I have to tell everyone that there hasn't been an episode of Parenthood that hasn't left me with a lump in my throat. While there is a character with asperger's syndrome on the show, it isn't always the reason why I feel connected to any particular scene. I think in plain and simple terms this show speaks to me simply because I am a parent. Within the latest episode an interesting scene caused an "aha" moment for me. It was between the single mother and her rebellious-brilliant-talented daughter. The mother was explaining a parents' hopes and dreams for their child.

Many parents of special needs children feel guilty because they grieve when their child is designated with autism or any other life effecting disability. We all try to rationalize it away, this visceral inward feeling and we feel guilty because we grieve, because we are so sad. There are those who say that we are upset for ourselves, because we do not have a perfect child. How sad that that is how the naysayers need to view other human beings, only through the lens of self-importance, egotism and an unattainable ideal of perfection.

We, the parents of special needs children, all know that we do not grieve for ourselves but for our offspring. Yes, as the parent in the clip below, we see ourselves in our children. Yes they are an extension of who we are in many ways. Half of them is genetically us after all. Yet, deep down inside we all know that  our children are individuals in their own right. That their lives ultimately belong to them and to them alone.



I think I figured it out, the reason why at times I still cry when no one is looking. I cry because as human beings, a person has the right to accomplish anything they want. Everyone has that human right  to "fly."  But there is always something (that lousy dropping shoe) that causes an angst or an issue that does not really have to be there. This disability, along with society's ignorance, either makes that right to "fly" for the boys so much harder than it has to be, or in fact, like for so many that I know, takes that right to fly completely away.

That is my introspection of the day....I hope it helps.

Until next time,

Elise

Tuesday, January 11, 2011

Boycott the Black-Eyed Peas

Boycott the Black Eyed Peas and their demeaning portrayals of people with intellectual and  developmental disabilities. Epilepsy is no joke... 

No, I usually do not support boycotts. I do believe in freedom of speech. But when someone is a celebrity, and they have influence on the minds of the young, especially in the wake of all the suicides and bullying that have occurred in our society, it is time for people to stand up and say enough is enough. Just because someone has the right to say something doesn't mean they should and it also doesn't take away your right to protest.

Until next time,

Elise

Sunday, January 9, 2011

The Unmentioned Tragedy in Arizona

Too many accusations and too much partisan bickering are happening because of the horrible Arizona tragedy. The truth of the matter is that what happened in Arizona is not terrorism, it is not politics gone awry, and it is not Left versus Right. What happened in Arizona is even much more of a tragedy than anyone is really talking about. The reality is that if the shooter’s family, friends, acquaintances had been paying attention and actually cared about this man, none of this would have happened.

There is no issue that after reviewing his You Tube videos (no I will not link to them) that he is highly mentally ill, possibly in the same vein as the Unabomber. This without a doubt does not relieve him of the responsibility of his actions; there is a huge difference between being diagnosed with a mental illness and being legally mentally ill. But what it does do is call into question the actions of those surrounding the shooter. Read the rest here.

Until next time,


Elise

Friday, January 7, 2011

LSAT Accommodations, Lawyers of Ignorance and Becoming A McBadass


So you know how I always say that as parents of special needs children we expect that next shoe to drop just at the moment that everything seems to be going great? Guess what, our shoe dropped, actually I think it was more like several pairs of heavy-duty snow boots.

As I have written before collegeman is thinking of pursuing a legal career. His desire to repair the world, or as we say in Hebrew tikkun olam, has led him to the realization that the only way to truly have any effect is to get a law degree. Well let me rephrase that, the only way to have any effect, and still be able to buy food, clothe and shelter yourself while maybe having some money left over to enjoy existence is to have a law degree. (With all due respect to social workers, teachers, and community workers, your salaries suck.) So we signed collegeman up for the law school boards with the LSAC organization.

Now its much different then when hubby and I went to law school, everything is organized from one central point. This organization handles all the recommendations, transcripts and has a common application used by all the accredited law schools in the Untied States. It makes it so much easier to actually apply it is fantastic. Each college does have a pre-law advisor but I am truly not sure what he does considering that everything is run through this one company. Perhaps he tells students where to look and what courses to take undergraduate. However my son has decided to not take a law minor undergraduate but to study genocide and the Holocaust instead. We also know where collegeman will apply for law school. Since we live in an area with all levels of law schools, he will apply locally. Living at home is still going to be his best option. So I am not sure how collegeman will need his services but we will see next year.

In the meantime, I checked out the website to review their accommodations policy. It is really very straightforward. Truthfully if you have been doing the accommodations dance for all the years we have it is very simple forms and a copy of every document that you have on your child since the day they were diagnosed and even before that if anything exists. This is not difficult, for being the anal retentive attorneys that we are, we kept everything and even have it all categorized by year, importance, testing and IEP. In the end however, there is also no guarantee that the LSAC will grant your child accommodations of any kind.

But here is the glitch and why I say the heavy-snow boot has dropped: the LSAT service flags the tests of those that have been accommodated.  Initially I asked the customer service person how that isn’t illegal and a violation of civil rights? She of course couldn’t really answer me. She told them that the law schools make them flag the tests. So I called a local law school to find out what they have to say. They told me that the American Bar Association insists that the tests get flagged. Pass the buck is such an interesting game among so-called educated adults isn’t it? Basically no one has a real answer and they are all full of crap.

I spoke to the young lady at the law school, a very patient and sweet young woman. Played like I was the one taking the test:
I asked how do they figure in the fact that the test is flagged.
Oh no, she assured me they don’t pay attention to that at all.
….no offense but I don’t need to buy a bridge in Brooklyn either (didn’t say that just thought that).
I asked her if they have a disabilities office that I can speak to?
She told me that they don’t have one at the school and that the registrar office takes care of all accommodations at finals time, if you need extended time.
Does she know how many students with a disability are registered at the school?
No they don’t’ keep track of that.
Do they have anyone with service dogs at the school?
Not at the present but she knows they have had them before and those who need help getting around campus.

I thanked her for her time. Oh here is another issue, not only does the LSAC flag the tests of those with accommodations, but these tests are not included in the ranking of tests. So you are not listed as to the percentages and values of other test takers. Basically you are treated as a nonentity not worthy of existence.

While speaking to hubby we found some terrific law review articles (here, here ) on the subject of the flagging of tests and the basic ignorance of the legal profession. They actually have a quote from the American Bar Association saying that flagging of tests are important because being able to do things in a timely manner, at the request of clients, is essential to the functioning of a lawyer. Hubby, who is a partner in a rather large corporate law firm, openly guffawed at that reasoning. Having practiced law for over 25 years, hubby knows what is required to be a successful attorney, and what is needed to deal with clients. None of it is dependent upon getting extra minutes on a test. (Read the above law review articles for a terrific discussion of the ADA and the Rehabilitation Act as well as a discussion of the realities of the legal work place.)

The truth of the matter is that this issue has never really been litigated. The case that brought an end to the flagging of the SAT, GRE and the ACT, was never fully litigated but the outcome was the result of an out of court settlement. The American Bar Association and the American Medical Association refused to sign on and no one has ever done anything about that. I am not even sure that if we filed a complaint with the Office of Civil Rights Enforcement at the Department of Education that they would take the case. OCR has actually recently ruled that Civil Rights Statutes don’t protect Jewish students at college from bigotry and harassment so I am not even sure that they would have collegeman’s interest at heart even if the discrimination is based upon his disability. Then of course, if we filed a complaint, it would have to be under collegeman’ name and his name would be public in the lawsuit and defeat the purpose of him remaining anonymous. Talk about a Catch 22.

 OCR seems to have forgotten what Civil Rights are and what their mandate happens to be. They are lawyers after all and ignorance about mental health and learning disability issues seems to permeate the profession. I think that what has become very apparent is that those in charge of protecting the civil rights of persons in this country are without a doubt willfully ignorant of what a learning disability is and the purpose of accommodations, or quite frankly they are just out and out morons. So when hubby says to keep the boys’ names private and to make sure no one knows who they are and what their disabilities are he is not being paranoid but living in the real world.

In the meantime, we are going to read those law review articles and see if we can come up with an answer for this October LSAT for collegeman. Of course in our dinner discussion about it last night HSB came up with his own answer for collegeman. He told his brother it is time for him to be a McBadass, ala Teddy Roosevelt, and take the test without accommodations. Collegeman of course was horrified, but I told him that he might have to think about it and that in reality we have nine months to apply for accommodations anyway. Collegeman should try to study for the test this summer and see how he does on the timing and if he can write neat enough to handwrite the essay. It is after all multiple-choice and he does do well on these types of exams. The issue would be the essay, which the LSAT service says doesn’t get added into the score anyway. Truthfully if  LSAC is anything like the ACTs they would not grant him use of a computer anyway since he has use of both of his hands. (No kidding that is why the ACT would not grant HSB use of a computer, dysgraphia not withstanding.)

So off we go on another wonderful adventure into the world of ignorance and bigotry. I am getting tired of the way the world treats my children. It is tiresome that those who are considered the most educated among us are actually the most ignorant among us. It is tiresome that those charged with the protection of the most defenseless in our society, the lawyers charged with applying the civil rights laws and the Americans With Disabilities Act in this country are themselves in violation of these laws. (I don’t need a court of law to tell me the obvious.)

I have to say that one of the funnier moments in this odyssey, when speaking to the young woman at the LSAT testing service, she said flagging can’t be a violation of civil rights since everyone involved in requiring the flagging are lawyers. I guess she never heard of lawyers breaking the law, going to jail, getting impeached and getting disbarred too….

Meanwhile, whether collegeman likes it or not, he may have to do what his brother has suggested, become a McBadass or in teenage boy vernacular, just grow a pair…oy vey...


Until next time,
Elise


Tuesday, January 4, 2011

January Happiness Project-Energy


Energy is an interesting topic for a Happiness Project discussion. I can’t tell you how energy effects every waking moment of my life. We can look at energy from the purely utilitarian point of view, meaning the energy we need to heat our homes, run our cars and basically exist in our modern world. But energy is quite worrisome and lends itself to quite the debate in our society. To acknowledge that oil is needed to complete our lives, but that it is foreign oil mostly from very unfriendly countries is a scary thought. The idea of drilling whether off shore or in protected areas bothers so many, and there are real environmental concerns, yet where else is the oil going to come from? Cutting down our dependence on oil and producing alternative means of energy, be it solar or wind, electric, or even the use of a potato (you remember that experiment we all did in elementary school with the potato battery) is a great idea, but that takes time, money and another type of energy-human wherewithal. Meanwhile what do we do while all these inventions are in the offing? I don’t have an answer; I just have lots of questions. Heck if I had the answers I would write a great political, scientific, economic, and legal tome that would become the informational sensation of the year, winning me acclaim, honors and maybe enough money to have hubby quit his job, set up those trust funds for the boys and oh yeah, pay off all that special needs incurred debt. What I do know, however, is that the five day camping trip we had this time last year, during the snowicane, reinforced my notion that I will not live life without energy unless the world runs dry of oil and they pry my tuchas out of my warm, comfortable home. OK, maybe not a great topic for this blog….

So what other kinds of energy could we talk about?  Human wherewithal definitely fits the bill. Its part of that secret place, deep down inside ourselves that summons up this incredible amount of drive and stamina that just keeps us going and going and going. Heck the Energizer bunny has nothing on us. We as parents of special needs children understand that there is this little place inside yourself, which holds this special kind of energy. I wouldn’t even call it parenting energy, because that is just the average amount, something akin to filling up the tank of a prius. No, what we have, this special needs parenting energy is more akin to the energy found within that most powerful of microscopic life forms, the atom. That elusive building block of life, that all-important part of the universe, which structures and gives shape to the world around us.  The atom, at once creative and once the most destructive force human kind has ever unleashed upon the world. We, like the atom, can help build up the world or blow through it when our children are not given their due. We have within us nuclear parenting energy. It is forever and even its half-life lasts way beyond that of normal human endurance. Those momma-grizzlies, ain't got nothing on us, that's for certain.

So what does this energy enable us to do? It enables us to move from task to task, from trauma to trauma, holding on to the reality that we know we have to seek for our children. It enables us to research, and look for, and seek out answers to questions, that the scientists haven’t even thought of. How many times, have you read about a scientific discovery about autism or having to do with your child’s special needs, and your response was, I knew that, all they had to do was ask me. I could have told then about situations and issues and how I figured out how to help my child. We even have some interesting ideas about what causes problems, the linkage to brain function and the diseases (autoimmune) we find in our community. We know what to do and believe it or not, we parents also know what is best for our offspring.

The nuclear parenting energy enables us to live through some of the worst parts of our lives to grasp onto the future knowing that it will be better, because we are going to make it better. The nuclear parenting energy allows us to move forward in the face of economic collapse, school disenfranchisement and the sheer ignorance of society. It gives us the resolve to teach the damn world about our children, to stand up for our children and fight for what our children need. It is the nuclear parenting energy that enables us to basically get up in the morning, greet a new day and say hey world, ready or not, here we come.

Personally, that nuclear energy came in handy for me this year. It was a hard year for this family, as it was for so many of us throughout this land. Hubby at one point even told me that I wasn’t looking good and I knew that I had to reassert my nuclear parenting energy (Ok I had forgotten to take my lupus medicine and that’s really why I didn’t look good. Forgot the cardinal rule about taking care of myself too. Yes, a slip up we all have them.) Of course, when your child is so unhappy at school, or not functioning well even at home, it makes everything all the more harder and you can get overwhelmed worrying about them. But this is when we become determined. This is nuclear parenting. This is when you grab a hold and find the answers and you don’t stop until that child is smiling and laughing and singing in the shower (or bath if their sensory issues prevent them from showering).

Sometimes you do think that you are alone in the world and that no one around you even knows what you are going through. That other people, even those you see everyday, see past you but that never actually see you. Well, that was laid to rest for us this Christmas. Just received a present in the mail from one of hubby’s partner.  She mentioned that we should have a better year in 2011 since she knew that for us, 2010 basically sucked. She sent it with some rather huge straws…. (Her's is the big one. The regular bottle came from an associate.)

I have never seen a bottle of scotch that big. Woohoo.

The year did end on some good notes for us. HSB had his meds readjusted and is doing so much better, he has a new friend and went to that friend's New Year's Day party where HSB was the center of the girl's attention. He was also accepted Early Decision into the same college where collegeman goes. So hopefully we will not have any problems getting him the same accommodations. Collegeman is the same (which is mostly good) and progressing in the social realm. He is planning to take the LSATs in October and we will be spending the better part of the year trying to get him extended time with a computer for that test (this crap just never ends). We will see what the future holds. Meanwhile, that parenting nuclear energy will take us into the new year and beyond. Hold on to your hats everyone. Here's to a great year to come. Hopefully it will even mean that hubby and I will get a good night's sleep.

Until next time,

Elise