Raising Asperger's Kids

TedX -The Unstoppable Autism-Warrior-Parent Proves the Experts Wrong

2013-06-18T22:23:00.000+03:00

Chris Varney is an advocate for children's rights. His advocacy began as a 16-year-old Youth Ambassador for World Vision during which he became active in anti-poverty campaigning. He went on to become National Co-Director of World Vision's youth movement and later, the 2009 Australian Youth Representative to the United Nations. As Youth Representative he put together a book Dear Kevin which helped catalyse many practical outcomes for vulnerable children and youth. For his efforts he has received the 2011 Monash University Student Alumni Award, the 2012 National Award for Youth in Advancing the Legal Rights and Interests of Children and Young People and the 2012 Future Justice Medal.

Visit Chris' website: http://chrisrvarney.com/
Connect with Chris on Twitter: https://twitter.com/chrisrvarney

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In the spirit of ideas worth spreading, TEDx is a program of local, self-organized events that bring people together to share a TED-like experience. At a TEDx event, TEDTalks video and live speakers combine to spark deep discussion and connection in a small group. These local, self-organized events are branded TEDx, where x = independently organized TED event. The TED Conference provides general guidance for the TEDx program, but individual TEDx events are self-organized.* (*Subject to certain rules and regulations)

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As I have always told you, NEVER let anyone tell you your child can't. Tell the naysayers, dooms-people and so-called experts, that the answer is NOT to tell your child that something is impossible but to find a way to get done what your child needs so they have the future of their choice.

Elise

The Ignorant Cows on The View Support Maher Calling Trig Palin the "R" Word

2013-06-18T22:07:00.001+03:00

According to Barbara Walters its OK for Maher to have called Trig Palin names because he regularly picks on Sarah Palin and Palin can fight back. I have never known a descent adult to attack another adult through their children. I also don't know of any mentally stable adult who supports picking on and bullying children, never mind a child with a developmental disability.

Best part was that Walters discusses how her sister, who had developmental issues, was picked on and how bad it made her feel when someone called her sister the "r" word. Yet somehow in her convoluted reasoning, it was fine and dandy that Maher did it to Trig Palin. She is a revolting hypocrite and a sad excuse for a human being. As a Jew, I am embarrassed that she is Jewish.

This just proves that it is longover due for Barbara Walters to retire.

Whoopi also said that the word "retarded" was made a bad thing by society much akin to the "n" word. That somehow we are too stupid to know whether Maher meant it in a negative way when discussing the Palin child. So apparently according to Whoopi you can use these words as long as you don't mean it in a negative way. Fine. Wonder what she would do if some Tea Party member went up to her and called her the "n" word, but told her that they didn't mean it in a bad way and that it was just society's fault for misconstruing the word. Don't think she would try to rationalize the insult by blaming societal malfeasance.

And lets not forget Whoopi's famous defense of Roman Polanski who had drugged and sodomized a 14 year old girl, saying what he did was not "rape rape." (Yeah she later apologized and clarified her statement, but she said it in the first place and meant every word of it.) And don't forget her revolting defense of Michael Vick when he tortured and brutalized dogs so that he can enter them in dog fights. She said it was a "black" thing and we "white folks" don't understand what dog fighting means in the black community. HERE

There is a reason I don't watch The View and quite frankly neither should you or any self-respecting person.

Elise

Mr. GS' Senior Thesis Here On Line

2013-06-17T22:59:00.002+03:00

I found a service that uploads documents and power point presentations online and then allows you to embed them to your blog or in another presentation. So if you haven't read Mr. GS' senior thesis on the History of Antisemitism in the Arab and Moslem Worlds using my convoluted link back to my wordpress political blog, try reading it from here. It is so much simpler and you can download it , or read it on line by expanding the box.

Sign me out as Proud Momma.

By the way, I picked up his framed College Diploma today too....

Elise

Practicality: Transitions, Practice and Eventually a Smile

2013-06-16T17:17:00.001+03:00

Next week Mr.GS begins his journey into graduate school. But first we signed him up for a social skills class. The University where he is going has a wonderful aspergers support program and the disability director recommend that we send him to the program. She thought it might help with transitions. After speaking to the people who run the program I agreed. He starts next week. But we first we had a few chores we had to accomplish.

The first step was to send all of Mr.GS' medical information to the disability office. (That medical file I tell you to keep, you will always need that and it should be updated regularly. When they are in k-12 it is important to keep their IEPs in there as well.) That included the psycho-ed testing we did a few years ago, a letter from the neurologist about his seizures and even a letter from the undergraduate college detailing what accommodations he received, especially the para information. I spoke with new director on several occasions and after reviewing the documentation she assured me that sending someone with MR. GS would not be a problem.

Hugh sigh of relief. Mr. GS could need the support, but there is really no law or regulation that require a post-secondary facility to allow you to send someone with your child. She did at first want to emphasize that they don't pay for something like that. I had to assure her I know that we pay for this on our own. I asked if she need his resume. She said no, that the University trusted us. Nice to know. But I explained who the para is and his background anyway. It's important to know that we hire only qualified and very professional people to work with Mr. GS. Its about respect from us to them, that they also know we care about what happens with our son and that we require quality people (including professors) in our son's life.

The next step was to actually go in with Mr. GS to meet the disability director, sign some papers and take a look at the school. Yes, hubby and Mr. GS had taken a tour of the University, however, it seems that the computer science program for graduate students is only at the campus in the City so the trip to the campus near us was a huge huge huge waste of time.

Well..now it gets interesting. We had alot of things to think about when it came to the best way t transition Mr.GS, but most importantly was Mr. GS' safety in New York City. The first thing hubby found was actually something you generally buy for your elderly parents.

(1) We purchased Great Call. A locating and emergency device that Mr. GS could attach to his keys. If Mr. GS loses his phone (or if someone lifts it off him) he still has a way to contact someone for help by pushing the button on the device. By carrying the device there is also a way for someone to figure out where he might be. Of course we always tell him if you get lost or have a problem, find a police officer. Let them know you are in trouble and that you have autism. They will help you. The disability director also suggested that we contact the school's security office to let them know about Mr. GS, his autism and seizures as well.

(2) So to practice, last week I took Mr. GS on the commuter train. Our behavioralist had already taken him a few times back and forth between towns in our area, so he did know how to buy a train ticket. He did that really well. Better than me actually. We went to the platform and waited. I tried to give him instruction about where to stand and the safety of staying back from the yellow line. This made him very cranky. I know he was just nervous. The more anxious he gets the crankier he gets. At this moment he was very very very cranky. I let it go. Shortly after he did apologize. He does know when he isn't being pleasant. It's just in the moment he has trouble controlling his anxiety.

We did find empty seats on the train and actually had a pleasant ride into the City. I offered him the window seat so he could look out. I figured it would keep him calm. He was very quiet and very subdued during the ride.

Once in the City, hubby and I decided it would be best to take a cab to the University. I had thought about the subway, but with all the new stimuli, that crowded and sensory overloading place would just add to Mr. GS' anxiety. The subway is an area of transition that is far in the future. Very very very far.

The cab ride was fine. Mr. GS even tried to tell the driver where we were headed. There was traffic and it took a little bit of time. Because of a street closing near the school, the taxi driver let us off around the corner, telling us that the street we wanted was just a few blocks up. Well it wasn't. We did get a little confused and asked two police officers for directions. We did find it in plenty of time. Mr. GS was not smiling and was very very quiet.

It turns out the office we had to go to for the disability accommodations is right across the street from where all his classes will be held. even the social skills course. I made sure to point this out to Mr. GS. He didn't really seem to care very much at that point. The streets were crowded and the entire area was very new. I had never even been to this part of the City myself so I too was unsure of myself.

Meanwhile his school is only a few blocks from the new Freedom Tower. Mr. GS started worrying about terror attacks on the school. I had to tell him that an attack like that won't happen again. That America, and especially NYC is ready for anything right now. But I see a possible obsession that we will need to nip in the bud with this one.

So into the right building we went.

The next step was meeting with the disability director. What a lovely young woman.

(3) But first Mr. GS had to answer some questions about his disability through a computer to in put into the system. I accompanied him into the room and let him answer the questions. Those that he didn't know the answer to he asked me for help. My title by the way is "Supervisor." He would say..."Supervisor, help here." Not certain when I went from "mom" to "supervisor" but it worked out well.

Then we had the meeting. We got every accommodation we wanted. The director explained the procedures to us for the extra time and how to set up the testing. Basically the same as it was in undergraduate. Just different people to deal with that is all. She also was very happy to have the para on board. I told her he is getting a masters in special ed and could help out the professors if they have a hard time explaining some of the curriculum to Mr. GS. He doesn't have a technology background but there are methodologies that a teacher can employ to teach any subject. Well did her face light up with that. She said the professors are going to be very happy to hear this. Also the classes are very small, maybe 20 students in a class. Very very nice.

She did ask if when we tell the professors that Mr. GS receives XYZ accommodations do we want his disabilities disclosed to the professors. We said of course. First of all, what good is it if the professor doesn't understand what the student is dealing with as far as a learning issue. Also with the seizures and the para accompanying Mr. GS it is better they know its for a physical reason and some social facilitation issues and that is all. I did tell her I was concerned that because of all the ignorant news stories about aspergers that people had the wrong impression about autism. She said they have never had an issue at the college, but that if Mr. GS ever did, he was to march right over to her office and she would take care of it.

Meanwhile Mr. GS had not said one word through the entire conversation. We kept asking him questions and he answered in one word or a little bit of a head shake. He did question his need for the social skills class. But I assured him it would help him get used to the school and it was a good thing. I think his anxiety was ratcheting itself up. I may be wrong but I think I saw one of his little seizures. He said he didn't have one, but I think differently. The doctor is convinced that these micro-seizures are so common for Mr. GS at times he doesn't even recognize them as a "seizure." And so far...no smile.

Not one person in that office, even questioned what I was doing there with Mr. GS. Nor did they have a problem with me being the advocate, facilitator or helicopter parent. This I liked. When school personnel understands how involved parents are in raising a special needs child (even when that child is no longer a child) you have people you can deal with. In fact Mr. GS' adviser told us to make sure that he inputs the information necessary along with the proper permissions so that there will not be any issues of "privacy" when we call the school or help advocate for him.

From there we went to get Mr. GS his college ID card.

(4) We followed the directions we were given to find the ID office. We walked into the main building and asked the security guard where to go. It was easy and simple. But still the area is confusing and we were very unsure of ourselves. (I know at this point I was even a little anxious from the day) Mr. GS handed the necessary documents to the youngman behind the ID counter. Sat in the right place and had his picture taken. Mr. GS was handed his ID, with a lanyard so he could wear it around his neck. I asked if he had to wear it that way and the answer of course was no. He just had to take it out to show security everytime he went into a college building but he could keep it in his wallet.

Mr. GS took the ID with the lanyard and put it around his neck. He then smiled a huge smile. Finally. Suddenly he started talking and laughing and enjoying the trip. The only thing I could figure is that with the ID the transition into his graduate program became a reality for him. He felt like he belonged at the school and was part of something again.

We hailed a cab to return to the train station. I asked Mr. GS if he wanted to shop for father' s day presents before we went home, but he said I should go without him another time. I think he had had enough of the day.

I figured out what train we should catch to go home and Mr. GS remembered that there is a terrific food court at the station. So he ordered some Chinese take-out and I bought a salad. We found the train. Sat down and he proceeded to eat his late lunch. (He had been so nervous I couldn't get him to eat before we left the house.)

*****

Hubby and I decided that Mr. GS needs one or two more practice trips into the City before his class begins in two weeks. He should feel assured with the schedule of how things are going to proceed. I know it will take time for him to feel completely comfortable with all the new sensory input. That is going to be the big challenge for him. But that too will happen in time. All he needs to learn is that he can do this and do it successfully. Patience. Comfort. Caring. That is the important things going forward that he will need. Not any different than ever before.

Elise

Challenging the Self-Righteous Know-it-Alls Among Us

2013-06-13T22:10:00.004+03:00

Interesting discussion about the recent case involving the child with CF who was denied a lung transplant because of her age. Apparently over at Commentary Magazine they are not all that pleased with the outcome, read HERE. Yes I left a comment, and surprisingly they posted it.

Of course then someone responded that wanting a transplant for this girl was not thinking of others, that the family was gaming the system and that this selfishness is what passed for 21st century ethics. I replied that the family is not gaming the system. They were getting their daughter the help she was entitled to. That if they want to sacrifice their child for the benefit of the collective then so be it, but that I was going to fight tooth and nail for my children no matter what the issue. That 21st century ethics means that everyone is considered an equal person and that no one is an undermenchen. Don't know if the reply was posted. Update: as of now(4pm) it has not been.

Instead I had a rather interesting discussion with the post's author on twitter. She, in a petulant and pedantic and rather bratty manner, told me I was ignorant about transplants. Then blocked me because I called her out on her nastiness and self-righteous attitude.

Listen I do know that the author is an Orthodox Jew, so I told her that hashem is not going to look kindly upon her attitude and it might come back to haunt her one day. She said I cursed her and that she was not going to talk to me anymore. I suppose in her mind its OK for her to want to deny children with CF transplants because other more appropriate candidates exist, but me mentioning in a very round about way that she is being a bitch, well I guess that got her annoyed. Alright, maybe I wasn't that round about it after all. But then again I don't take kindly to people thinking those with special needs are lesser human beings. I did use the word undermenchen, which probably also upset her. OK yeah I used it on purpose. My bad.

Now I never said I know anything beyond what I read about transplants in brochures and in news stories. I do not know anything beyond what I read about how special needs children are routinely denied transplants because they have special needs. But I do know that government regulations can and due lag behind medical reality. I do know that the medical profession also doesn't know everything and is willing to sacrifice innocent people to prove their points.

Somehow the author's idea that simply because a family had not thought of the idea to sue the federal government to change the list protocols before this case means everyone has been happy with the way things were. I told her that as a parent of two special needs boys I know that not everyone has the money to sue and most families probably didn't even think they could. I bet most were scared of the blowback from the transplant doctors for their child if they did sue. That she never answered.

I also asked her if everyone was so happy with the way things were how come families are now being asked to move onto the adult list? That is when she told me I was ignorant because there was only one list. Very adult of her, wouldn't you say? That is when I told her she was being pedantic and petulant. She also never answered that actual point of why are people asking to redesignate their children either if everyone was oh so happy with the present system.

I also mentioned that the only thing the case did was create an appeals process so families can try to get their children listed as adolescents. She was carrying on as if the judge went and rewrote the entire transplant protocol rules, which he did not. She was carrying on how the entire system has to have everything rewritten and all the protocols and patient information has to be recalculated and the transplant system is about to crash because of what this judge did. She, of course, never answered that question either.

Nope she just blocked me. But then again I remember that I once had a discussion with this author and a tweind about the tweind's newly adopted child. The child had been converted by a conservative rabbi rather than an orthodox rabbi. She told the tweind that means her child isn't really Jewish. I suppose the self-righteous never really do change their attitudes do they?

Elise

Ignorant Bill Maher Calls Trig Palin the "R" Word...Main Stream Media and Leftwing Politicos Silent

2013-06-13T17:04:00.001+03:00

It just amazes me how eight years after Sarah Palin became the GOP Vice-Presidential nominee, left-wing haters still cannot control their Palin Derangement Syndrome. Honestly after all these years I haven't figured out why they keep that up anyway. It is time for Leftist-losers to move on and recognize that the VP that won is an intellectually-challenged individual who runs his mouth without any actual thought whatsoever. Moreover it would be one thing if they stuck to picking on Sarah Palin, an adult. In American you have the right to disagree with what others say and can challenge them on any level you want. But somehow these comedian-losers have no one else to pick on but Palin's son with down syndrome.

I have talked about Bill Maher (along with his left-wing compatriots plus one particular conservative radio-pundit) and his vile use of language to discuss women he disagrees with (here, here). However, the latest ignorance coming out of Maher is to refer to Trig Palin using the "R" word. The really disgusting aspect of this is how the audience at his show laughed. America really needs to grow up.

I have yet to understand how anyone with any functioning brain stem would find picking on a child with a developmental disability to be funny. I don't understand how anyone finds bullying, denigration and dehumanization of another person to be comic fodder. I don't see how these perverted insults adds to the humanness of the Artistic community. A community that pridefully announces how they are dedicated to social justice causes. I definitely can't see how it adds to the betterment of humankind.

No I didn't stay silent myself. Yes I sent Maher a tweet:

@billmaherusing the "r" word is bullying...noone to pick on but a child with a disability...shows you're not very much of a man
— Independent Patriot (@LibertysSpirit) June 13, 2013

I don't expect anything worthwhile to come out of Maher about this issue. Cowards who pick on children, especially children with disabilities, generally run from adult confrontation. It actually takes brain synapses to have an intelligent political conversation. An obvious level of intellect that Maher and those like him lack.

Yes of course Sarah fought back, just like any parent would HERE

But my question is where are all the groups that screamed and yelled when Rush called Fluke a "slut." Where is the #StopMaher movement by the Left? Where is the "Rush-equivalent-movement" to throw Maher off the air, or for The Palms to cancel his show, by Media Matters and Think Progress? Where is the DNC, that castigated Rush, on Maher's bullying of a small child? I guess if you give 1 million dollars to the President's re-election campaign the self-righteous Left gives you a pass even when you bully and denigrate a helpless, defenseless child with a disability.

Compassionate Left my ass.

Makes you think doesn't it?

Elise

P.S. No I can't stand Rush myself. But I despise hypocrites even more.

There is Only One God

2013-06-13T14:13:00.001+03:00

Shema Yisroel Adonai Elohainu Adonai Echad ....Hear O Israel the Lord our God the Lord is One

Not a traditional version but quite lovely.

Elise

When I Try to Enter the College-Man-Cave

2013-06-11T21:00:00.003+03:00

I get the same look too. Just sayin'....

Elise

Video Games-Purpose and Yes, Importance

2013-06-10T02:58:00.000+03:00

We always hear from the psychology community how our society is devolving because our young like to play video games. Every time there is a mass shooting or terrible tragedy where there is less than the expected societal me culpa, we are told that its because our young are inured to violence due to video games. They have done studies, tests, programs and many have even based their entire professional careers on the belief that video games are damaging to the human psyche and are making young people evil.

To that I say nonsensical-bullcrap.

It's not only because I know that CM2 considers himself a gamer. He spends every waking moment not studying playing games, discussing games, watching others play games and simply revels in the complexity and the social paradigms found in the video game world. He chats, tweets and IMs about the different genres. What they mean. How some are good, some are bad, some are racist, some are misogynistic etc.

Contrary to lore, Gamers are not social apathetics. In fact part of the joy of game play is the interaction with other gamers. They can slice and dice a game, the story and see the reality of the play down to the littlest detail. These people are highly evolved intellects that manipulate story lines, thrive on creativity and promote many ideals and virtues.

The issue is not that video games are violent. Quite frankly some are and some are not. The issue is does the person playing the video game know what is real and what is fantasy? Can they leave that world behind when they turn off their machines? Can they differentiate between the rules of game play and the rules of modern society? If at any time these issues become problematic (or addictive), then it is not the game that is at issue, but the mental health of the person involved.

The know-it-all powers that be have decided that certain types of persons prone to dysfunction are drawn to game play. Not so. In fact it is the highly aware and quite functional that seek out a modicum of normalcy if for nothing else to assuage their own discombobulation, as it were.

Comfort in the midst of chaos is how gamers look at game play. The other day at the neurologists office the medical intern asked Mr.GS what he liked to do in his spare time.

"I like to play World of Warcraft," he answered. "There I am a 90 level warrior that can control the world around me. Here in the real world, I am only one person, without any power. Unable to fix anything that is wrong with the world. Here at times I feel helpless. In World of Warcraft at least I can feel like I can do something."

In a sense, Mr. GS is frustrated by his own anonymity/powerlessness. He sees terrible things on TV and has studied the most evil times known to man. He no more could do anything about the Holocaust than he could do anything about Darfur or about what is happening in Syria. He sees hunger, hate, war, basically every form of man's inhumanity to man and goes inside the make-believe world of game play to escape the vagaries of the real world for awhile.

And no he doesn't have to become jaded into thinking that the human condition is something to ignore and simply worry about himself for the rest of his life. No he doesn't have to get used to the evils that abound in the world and accept that humanity is not worth worrying about. Let him be frustrated by reality. And let him find an outlet to relieve that frustration.

He knows the difference between real and play. He knows why he enjoys game play. It's a form of therapy. Playing games doesn't make him, or his brother, unable to cope in the real world. If anything its a way for them to deal with the real world by escaping for awhile. It's better than psycho-therapy for the boys are actually in control every step of the way . It gives Mr.GS a much needed outlet for the fact that one youngman can do nothing beyond his own little sphere of influence.

So I wish everyone would calm down about game play and see it for what it really is. Play time. An escape. Not any different than what we did as children when we played pretend. The difference is that video gaming is just alot more sophisticated than anything we could have ever imagined when we were growing up. Game play is about being part of something that is fun, exciting and outside the bounds of society. It's their rebellion from the pressures of life.

People escape in many ways. Some use drugs. Some use alcohol. Some use shopping. Some fight and abuse others as a way to cope. Some become workaholics, anorexics or completely exit out of society. Unlike those who use addiction to cope, gamers understand reality and are quite good at parsing out the world around them. At least with Gamers they are aware of the real world and when they are playing pretend.

So if the way my boys cope is to play games and pretend to control an otherwise uncontrollable world, so be it. It's not any different than Sheldonopolis. Only in their world, when the city is attacked by Godzilla as mayor of the town they don't tell the people to leave the children and run.

Elise

Channeling the Positive: Find the Positive in Your World

2013-06-07T20:40:00.001+03:00

I realized that I needed a #positivetweet day. With so much negativity in the world, I decided that I had to regroup and figure out all the good things I have going on in my life right now. I think that we can get caught up in all the problems and issues out there in human space, especially when we can't individually do anything about any of them. When you harp on all the negative things you cannot control, this leads to sadness and depression. Making all the good in your life disappear. So in honor of #postivetweet day, I have decided to write a #postivepost.

Happiness:

Mr. GS is inordinately happy. I realized the other day that he has been in school continually since he was 5 years old. He has never had nothing to do. Even when he wasn't in school or in ESY he had to go to therapy, doctors and tutors. But today is really different. He sleeps (but of course), eats, watches videos, plays World of Warcraft, eats again, exercises, eats again and then when I remind him of our deal, where he didn't have to get a job before his masters program starts in July, he does a few chores.

He laughs all the time and tries to hug me (yeah). He has taken to cooking his own pasta and even enjoys the independence associated with being the chef. When I try to correct him about something in the kitchen, he tells me that he's cooking his way....so as long as his way leaves the kitchen in tact, I let him be.

Mind-body-reality:

CM2 is finally getting the hand of the reality of what studying is all about. He had a rocky start to his summer Spanish class, but I remembered an old trick of mine from when he was in high school. Scheduling. He has to write out a schedule everyday to study and figure out what he needs to do.

He was reluctant at first. Thinking he could remember what to do when by memory. But I reminded him that he forgets and gets lost in his live streaming videogame exploring channel Twitch. So as long as his favorite twitch show gets worked into the schedule (which it does), it works out quite well.

I also have him study at the dinningroom table. He wears noise-canceling head phones and all noise is banished from his vicinity. Meanwhile if Mr. GS wants to sit in the near quadrant of his brother he has to also wear noise-canceling headphones to play videos or games on his laptop. Me I am exiled to the basement, or my bedroom, with my laptop and electronic toys.

But you know what. It has worked out. He just got a 96 on his last vocabulary quiz. So I will live the summer in my bedroom as long as this keeps up. I think CM2 also really realized the mind-body-"good grade" connection. It has taken awhile but we may have finally had a breakthrough. Positive thought that this new attitude/acceptance of reality will keep up.

Getting along:

The boys are getting along. Since Mr.GS is so happy and CM2 seems to have figured out studying for now, they are pleased with themselves. I hear less squalling between them. They talk, they discuss, they interact as if they were actually becoming adults...YEAH. As long as they stay away from politics everything is fine.

They even sat and watched The Big Bang Theory together last night. CM2 had gotten a bug up his butt about the portrayal of people with aspergers on that show. He really was annoyed that the producers had made Sheldon out to be clueless as to what was or was not racism.

You see, CM2 prides himself on his mindfulness of others and how others want to be treated. In fact he works hard to be aware of racial, sexual orientation or gender based discrimination. So he resented terribly the characterization of people with aspergers as ignorant, albeit unintentional, bigoted dolts. But his animus towards BBT seems to have gone away, at least for now....The latest episode the boys were watching dealt with when Sheldon and Howard were fighting over a parking space and how the characters ended up playing naked penis pranks on each other. (If you throw a penis joke in there CM2 does seem to find it hilarious.)

Needlesstosay when the boys are happy we are happy. But as for ourselves:

I had been having some weird palpitations and finally went to my doctor who of course sent me to a cardiologist. Remember February is Heart Disease Awareness month and it is something women need to think about as well as men. Heart disease is the biggest killer of American women. So don't dismiss those aches.

Today the cardiologist (a she) did an echocardiagram of my heart. That is an ultra sound of all the heart chambers. It was really cool watching my heart "beat" up on a screen. The last time I had seen a heart like that was when I was 5 months pregnant with CM2 and we saw his heartbeat on the ultrasound during the amnio. Happily, the heart seems fine. But just to be certain she wants me to do a stress test and then wear a 24-hour heart monitor. She told me that alot of times, palpitations are a characteristic by menopause. But don't just assume that's what the issue is, make sure you find out for certain.

So apparently night sweats is not enough. Now I get to have pounding in my throat as if my heart is gong to jump up into my head too because my hormones can't decide whether they are walking, skipping or running away...(Yes I know its suppose to be "positive post" not snide-smartass-post, but I couldn't help myself with this one, and when you go through menopause you will know exactly what I mean about not being able or not wanting to hold back.)

Now the hubby is happy because since the weather is finally getting warmer, he can take care of all that nasty damage left over from the hurricane last year. He finally rebuilt the back fence and is working on mending the fences in the front of the house. He likes to wood work and paint. It gives him a great sense of accomplishment when he can take care of his own home. In fact, he has finally primed all the paint-needed-spaces in the house and told me he is going to finish the touch-ups all this weekend. The inside of the house is no longer going to look like it is covered in calamine lotion and suffering from chickenpox. YEAH.

The dogs are calm. Even they are content. It must be a good sign. Animals are very perceptive. When we are stressed, they are stressed. Considering my pack merely lays about all day, barely barks and only wants to be fed and play, I would say the family-vibes right now are pretty good.

And above all, the house is quiet right now. So very positively quiet.

Elise

Danza.....

2013-06-06T20:48:00.000+03:00

I do not speak Spanish and have no idea what is actually being said in this song, but I love the beat. It makes me want to dance, which is so important in life. Just let me know if the translation is beyond the typical for this music's genre. From the video it just looks like a bunch of good looking rich guys surrounded by "hot" ladies, something every youngman (and most older ones too) want.

Personally I'll take the yacht and the house myself, no use for the young guys. In reality, until men have been seasoned appropriately they are totally useless. That's just one reason why I'll keep the hubby (I have many more as any reader of this blog would know). But together we could get used to that lifestyle for certain.

Have a fun day.

Elise

Autism-Meme as Political Insult

2013-06-05T03:07:00.001+03:00

Everyone who reads this blog knows that I am not afraid to show my political bent. Not a fan of Obama, democrats, political correctness and cultural relativism. I'm also not a conservative or libertarian either. I am a Constitutionalist. I believe in the US Constitution over and above all other forms of government, politics, religion and realities.

That being said I do not hesitate to point out, mention, discuss, or accuse when someone, no matter their political bent, insults those with disabilities to attempt to make any kind of point. I am an equal opportunity tuchas-kicker. I do not shrink away angry. I let them know that their maligning of my sons is not only disingenuous, its stereotyping/bullying at its worse and ignorant at its best.

Earlier today I happened upon one of the more interesting blogs that I read. I do not hesitate to comment when I think he has gone too far politically. As anyone will tell you I am not shy, at least not on line.

His latest screed was about socialism and its failures, disasters and the incomprehensible blindness of its adherents. Not anything I haven't read or said at times myself. Absolutes in politics don't work, no matter which side of the aisle you sit on. It's why even our most important laws have get-out-of-jail-reasons, even the admonition "Thou shalt not murder."

Well as I was reading his latest diatribe I came across this paragraph:

The Asperger shortcuts to manipulating people that are such a big part of convincing you to try a new soft drink or selling voters on Obama 2012 worked, but getting people to buy your hairspray or vote for your candidate is fundamentally different than changing how they live. The nudges and the data streams may seem sophisticated, but they rely on a Pavlovian view of human beings reacting to impulses in predictable ways. It's good enough for making a dog salivate when a bell is rung or a coed's eyes fill with stars at a Hopey poster, but it doesn't account for anything deeper than that.
Sultan Knish, The Crash of Socialism 2.0

I left a comment to say the least. I told him that his use of autism spectrum disorders is stereotyping an entire group of people that deal with prejudice on a daily basis. That his job is to teach not vilify. That he was promoting ignorance and bullying. That as a religious person he should be ashamed of himself. I told him to print my comment or don't print the comment. Respond in condescending tones about political correctness and leftist politics all he wants. But what he should do is rewrite that paragraph and apologize.

Nope haven't checked back to see what happened. Maybe I will and maybe I won't. I don't think I actually care. I have had many of my comments vilified by fools who think its smart to use the "R" word when I've pointed out how wrong it is. I have been ignored by authors who think its OK to use the autism-meme to show societal-ambiguousness-towards-humanity.

In all the time I spend on the internet there has only been one incidence where someone actually changed their article and apologized to me for what they had written. That was at Israellycool. I suppose one is still better than none. But it does make you think.

The ultimate irony here is that the blogger in question continually points out the antisemitic nature of so many articles, persons, political philosophies and organizations around the globe. He rails against antisemitism and the stereotypes promoted by some of the world's biggest (and smallest) Israel-and Jew-haters. (Yes I do that too.) But was unable to see how his stereotyping of those with aspergers spreads just as much hatred as racial or religious animus. It amazes me to no end, how people are so incapable of seeing what they dislike in others in themselves.

What I take away from this is simply how sad a place is the world at times and the challenges still out there for my sons and others with autism. I shouldn't be surprised. Really I shouldn't. I just wonder where have all the intelligent people gone? I expect autism-stereotyping from the uneducated politically unaware, but not from those who pride themselves on their ability to think, discuss and reason. Did intellects, true intellects, ever exist and am I fooling myself into thinking that the boys may not actually have to fight hatred for the rest of their lives?

Whenever I am confronted by the ignorance of the intelligent I always come back to hubby's admonishment about keeping the boys information private to the world. Hubby always warns about the nastiness of the working world. While I know that there are always ways to find out who someone truly happens to be, for the majority of people its not important to go that extra mile to delve into the bowels of the internet. So I do the best I can with keeping their identities secret. And yes, after today, I am glad I listened to hubby yet again.

Ultimately, bigotry is bigotry. There are no excuses for being uneducated in today's day and age. Those who do not recognize their own intellectual shallowness while even trying to excuse their equally vicious perspectives only make this a harsher world for our children. Silence in the face of such ignorance is not an option.

To sin by silence when they should protest makes cowards of men...Abraham Lincoln.

Elise

Here is a video that can help begin everyone's education:

Being the Breadwinner is Not the Epitome of Fatherhood

2013-06-02T23:14:00.002+03:00

We have all read and heard about the controversies surrounding the stay-at-home mom versus the working-mom versus the know-it-all-single-woman who thinks she knows everything even though she has never had a longterm relationship, marriage or given birth to any children.(HERE HERE) But now we have a new and rather inane controversy effecting the male members of our society. Apparently new statistics have come out that for a large portion of households, the women are the major breadwinners. Watch HERE. This seems to have caused some rather neanderthal heads to explode and accuse society of going to hell in a handbasket. HERE

I do understand that we have 24/7 news channels that need to have new topics to discuss on an hourly basis, but in truth there are real issues around the world to talk about that do not involve some first-world-narcissism. I would suspect that in a large portion of the world, in fact in many American households as well, families are less worried about who brings home the bacon as opposed to them actually being afraid that there will not be any bacon in the house at all.

If you also thought this nonsense ended with the news channels you are wrong. Here, Here, Here, Here, Here, Here, Here

Sadly what has been lost in the hullabaloo about money and worth in our society is just what exactly is the job of being a father? What does fatherhood actually entail? What actually makes a male a good father?

Is it the size of the paycheck? If that were so I would submit then, that Bernie Madoff was probably a really good dad, even though he ended up causing such trauma for his family that one of his sons committed suicide. The problem with society and so many of our cultural norms is that we are judged not by the content of our character but by the size of our bank balance and paycheck.

Here, then, is my list of dos for being a good father:

* Actually being available when your child needs you.
* Making certain that whatever your child throws at you you deflect it and come back looking for more.
* Patience, understanding and caring about the human being(s) you helped bring into the world before you care about anything else, especially yourself.
* Compassion, teaching your child to care about others.
* Competence, showing your child that whatever they do, they do to the best of their ability.
* Kindness.
* Respect for women. It is essential that real men teach their sons what it means to be in a respectful, mutually fulfilling relationship.
* Role modeling. Men need to show and teach their sons how to be good, kind and gentle people to those around them.
* Ethics and morals are a major aspect of being a real man. There are rights and wrongs in this world. It is essential that men teach their sons that the stronger you are the more ethical a person you will become.
* Not being condescending towards others.
* Laughing with your child.
* Finding mutual interests, or if there are none, supporting what your child likes to do.
* Hugging your child or crying with them when necessary.
* Caring for your child when they are sick.
* Planning for your child's future.
* Educating your child (through graduate school at least).
* Teaching how to clean a house as well as how to rebuild a car motor.
* Knowing that your child is not an extension of you, a golden adornment, but a person in their own right.
* Teaching the right way to defend their beliefs.
* Modeling honor, and duty.
* Understanding that if your child has issues and/or special needs it makes them no less important and no less a person to be loved.

Now where did I learn what it means to be a good father. Definitely from my own dad and watching the hubby help me raise our two boys as well. Fatherhood, like motherhood, is not an easy gig. It takes time, energy, patience and above all selflessness.

Many lament that the breakdown of the marriage has caused this dearth of fatherhood. But simply because a marriage fails or was never in the works, does not mean a man cannot be a good father. Parenthood is divorced from the adult relationship that brought the child into the world. Adult relationship issues have no bearing, or should have no bearing, on raising the child. This is about responsible parenting, nothing more and definitely nothing less.

Responsibility is also something I teach my own sons. Responsibility in life includes the choices you make. If you choose to have sex and are not ready to be a parent use birth control. If the girl gets pregnant its up to her if you become a father or not. If she chooses fatherhood then your obligation to that child is for the rest of your life. So think before you act and be certain the person you sleep with is someone you would want to be the mother of your children.

In the end, it does not mean a man is less than a man if his wife or the woman in his life earns a bigger paycheck. Sometimes that is the necessary reality that people have to live with, especially since the downturn in the economy. Gender roles and the rules are changing in the world. What should also change is the basis upon which we measure a person's worth in this world. What a person adds to the world "ethically, morally, emotionally and spiritually" is what is most important. Not how much money they earn so they can buy crap.

Remember in the end (who goes to an office, which parent if any stays home with the children, or who is the top breadwinner) you need to figure out what is best for your family and ultimately what makes you both good parents.

Elise

P.S. Yes, it is a fact that most women who are the breadwinners are in single family homes without male financial support of any kind (deadbeat dads abound). There is no male role model for the children and no positive male influence. But that is also the choice in many cases of the mother and/or an absent father who does not assert his parental role or rights. The effects on the children have been studied and I can say these studies are not encouraging. Sadly it is also a different discussion for another day.

Captain Picard on Violence Against Women and PTSD

2013-06-01T03:02:00.004+03:00

For all those who loved Patrick Stewart as Captain Picard in STNG. This is what the man really stands for.....

Heather on her hug.

Big hullabaloo in NY because Captain Picard claimed apparently he had never eaten pizza til last week...seriously... AHHHH... he clarified the pizza issue the other day.....this was the first time he ate pizza without a knife and fork....honestly he is so British.

Elise

h/t Upworthy

Mr. GS' Senior Thesis: A History of Antisemitism in the Arab and Moslem World

2013-05-31T00:38:00.001+03:00

I think I found a way to upload Mr.GS' senior thesis to the internet. I actually uploaded it to my wordpress political blog, which allows for document uploads. I can now link to it. Yes there are easier ways to do this. Yes, I found a rather convoluted way I know. But I think it works.

THESIS

Proud momma,

Elise

Team Tesla versus Team Edison

2013-05-28T20:57:00.000+03:00

One of the more interesting aspects of parenting children with non-typical interests is the discussions that you have daily in your household. CM2 offhandedly mentioned to me that he happened to be on Team Tesla. It was not part of any discussion we had been having or anything we were doing at the time. In fact, it was not part of the moment except for what was happening inside CM2's rather big brain. Fortunately, without missing a beat, I was able to join in his "personal discussion" for luckily, this was not the first time I had ever heard of how Nicola Tesla was cheated and maligned by Thomas Edison.

In truth, Tesla is somewhat of a folk hero of aspergean proportions. A genius who didn't quite get the schmoozing part of being an inventor. An individual who tended to annoy and alienate those who were best able to see to his financial well being. Tesla, I would say, is a cautionary tale told to the brilliant but socially clueless of today.

I also have to say that I am partial to Tesla because I rather enjoyed the SyFy show Sanctuary which prominently featured a character based upon Nicola Tesla.

Meanwhile, I mentioned how the next pet that we adopt, we should name that pet Tesla since we are on Team Tesla as opposed to Team Edison. It was a rather innocuous remark made with the best intentions. Well I have to say it began a search for truth and honesty by Mr. GS. Here is the email I just received:

Dear Elise Ronan,
    I have accidentally looked up articles that shows how your "Team Tesla" idea should be reexamined based on the information provided in them. The links are below and I expect you to look at them if you are open minded enough like any adult should be. Here are the links:

    http://www.forbes.com/sites/alexknapp/2012/05/18/nikola-tesla-wasnt-god-and-thomas-edison-wasnt-the-devil/print/
    http://www.lifehack.org/articles/productivity/thomas-edison-versus-nikola-tesla-who-is-more-productive.html
    http://edisontechcenter.org/tesladebunked.html
    http://muller.lbl.gov/teaching/physics10/old%20physics%2010/physics%2010%20notes/electrocution.html

    Whatever opinion you have after reading these articles, I guess we can say that the Tesla vs Edison debate and the controversies surrounding it will always invite different opinions from whoever reads them for years to come. All we can do is read these and other articles and decide for ourselves what is the right course to take regarding your "Team Tesla" idea. Thank you for your time.

Mr. GS

Yes, I read all the links and can see the controversy does not always have a definitive answer.

I still want to name the next pet after Team Tesla.

I love how when he is serious my oldest refers to me by my proper name instead of "mom."

Mr. GS needs to start his masters program really really really soon.

Elise

MEMORIAL DAY 2013: Freedom is not Free

2013-05-24T14:28:00.001+03:00

This weekend we honor those who gave their lives for this nation. It is fitting that we remember that Freedom is not free.

We sleep well at night because rough men (and women) stand ready to do violence in our name...George Orwell

Perhaps nothing speaks more eloquently to the sacrifice of the soldier than President Lincoln's Gettysburg Address:

Four score and seven years ago our fathers brought forth on this continent a new nation, conceived in liberty, and dedicated to the proposition that all men are created equal.
Now we are engaged in a great civil war, testing whether that nation, or any nation, so conceived and so dedicated, can long endure. We are met on a great battle-field of that war. We have come to dedicate a portion of that field, as a final resting place for those who here gave their lives that that nation might live. It is altogether fitting and proper that we should do this.
But, in a larger sense, we can not dedicate, we can not consecrate, we can not hallow this ground. The brave men, living and dead, who struggled here, have consecrated it, far above our poor power to add or detract. The world will little note, nor long remember what we say here, but it can never forget what they did here. It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us—that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion—that we here highly resolve that these dead shall not have died in vain—that this nation, under God, shall have a new birth of freedom—and that government of the people, by the people, for the people, shall not perish from the earth.

Our sons and daughters are still operating in fields of battle and could use some "loving" from home.

Go HERE to order any number of care packages from Soldier's Angels and remind these wonderful young people that they serve a grateful nation.

Or help those that have returned from fields of battle and need our support at Wounded Warrior Project.

Meanwhile the new Star Trek movie is dedicated to an organization that helps place veterans in positions where their skills will be happily utilized The Mission Continues.

GOD BLESS THE UNITED STATES OF AMERICA.

GOD BLESS ALL WHO SERVE.

May God bless them and keep them,
May he shine his countenance upon them,
May God grant us all PEACE.

Elise

Practicality: 21 is Easier than 10

2013-05-23T18:30:00.001+03:00

Got an interesting email from a friend last night that mentioned how her daughter was 10 going on 21. I told her that 21 is easier than "10 going on 21"...promise.

Now having raised boys, I can honestly say that I have no idea what its like to raise girls. I wont even hazard a guess what its like. I know everyone likes to tell you that boys are easier than girls.....of course most of them have no boys or are blissfully unaware that the hard part of raising boys is that they don't talk to you about what ails them.

Yes I know that women complain that there are no manly men any more. Men cry and talk about their feelings on Dr. Phil, but that quite frankly isn't the message our young men truly are getting. Alpha males are still the epitome of who boys want to be and alpha males do not cry, talk about their feelings or exhibit any angst whatsoever. For all of Tony Stark's or Wolverine's introspection, the reality is that they are lauded for the historical maleness, the alpha male components of their characters.

Heck one of the biggest criticisms of the new Star Trek movie is that Spock cries. OK, Vulcans are not supposed to show emotion, but Spock is half human. The half he accepted by joining Star Fleet over the Vulcan Science Academy after the chairman of the VSA disrespected Spock's mother. So what is really wrong with Spock crying? Nothing. But there is quite the hullabaloo among Trekkies over this little change in the timeline. Vulcans are devoid of emotion. Very alpha male.

The inability of young males to discuss their feelings, or the societal prohibition that its not manly to complain and its better to keep everything inside, is the reason why suicide rates for adolescent boys are much higher than for girls. So most of the fights we actually had with the boys over the years is to try to get them to open-up about what was going on inside them. It's better today. Especially where Mr. Graduate Student (Mr. GS formerly CM1) is concerned. He is also 22 years old and is developing nicely into a young adult. Now, CM2 doesn't openly discuss his feelings, (sometimes we do have a meltdown over things he finds frustrating or overwhelming) but I also know that if I don't get yelled at by CM2 at least once every few hours he is physically ill or engrossed in a video game. Well at least that is something.

Nonetheless, I found adolescence awful. It's not just the hormonally induced obnoxious behavior, but couple that with the aspergean inability to channel emotional changes and social interactions, you have a rather combustable mix at times. A rather over the top adolescent version of self-interest, self-importance, self-esteem issues and egocentrism run amok in a world that they simply don't understand.

Ten is the cusp of adolescence. In today's world 10-year-olds carry cell phones, go on Facebook (well some of them), IM with their friends and shop at Abercrombie and Fitch (that store is a discussion for another day altogether). The girls are past sleep overs where they watch Disney movies and have moved on to Twilight and Vampire Diaries. The boys have gone from Harry Potter to the Avengers, Thor and Japanese Anime. Hard core competition kicks in at this stage too. Either in school where grades are becoming the way your children get channeled for middle school and beyond or hardcore sports competition begins (or in many children's realities they have to deal with all of the above). Every parent knows that a college sports scholarship, especially in these days of $50,000 a year tuition, is hard won and takes decades of practice to earn.

But 10-year-olds still feel like little kids at times, which in truth they are. But everything in society tells them that they need to grow up and grow up fast. It's scary. Its frightening. Its confusing beyond anything they have every dealt with. So they lash out. They lash out in not so good ways. Mostly they take it out on you..the full-time caregiver parent. The one who sets the rules and carries them out. The task master and guardian. The one who pulls them back from the brink even when they don't think they are going towards a cliff.

It's hard. This push and pull me relationship. It is the job of the adolescent to try to pull away from the parent. It is their job to try to become more independent and to try to spread their wings. It is the job of the adolescent to test the boundaries of life and to fight with their parents every inch of the way. And it is your, so important job, to try to stop them at every turn.

As the child grows into those very precarious adolescent years, it is your job to make certain that they learn the rules of life as an adult. They need to understand the who, what, where, when and why of every scenario they get themselves into. You need to teach them how to analyze their choices and how to make good productive choices in the end. And our society's culture fights you every step of the way. But this too they need to understand and to reason with. They need to understand that society is not always right and that peers are not always right and that teachers are not always right and yes, even you are not always right (heavens say it ain't so). They need to know that they can disagree with everyone and everything and you will always be there for them, support them and above all love them.

It gets better. At 22 Mr. GS is a doll. Does he have his moments? Of course, we all do. But he has matured and understands the role he plays in the world (well sort of). He has some kind of direction in his life and he knows, we are there for him no matter what.

CM2 at 19, well he is still quite a piece of work. Still testing the boundaries and trying to get away with crap. For aspergeans they say they are 1/3 years behind their peer counterparts for maturity. If that is so, then CM2 is more like a 16-year-old then a college junior. It makes sense with some of the attitude and meltdowns that he has had lately. Stress, anxiety and self-esteem issues were our biggest traumas this past semester. It was not easy. It is not easy when you are dealing with a legal aged adult child who still needs alot more supervision than his peers.

He knows he is different in that regard than his peers and he resents it in some ways. No he doesn't resent the autism part. He revels in his autism. In fact on twitter he has proudly exposed himself as an aspergean in his profile (Also characterized himself as Jewish too. No there is no self-esteem issue about who he is at all.) It is the parental supervision he resents.

He complained bitterly about me on twitter the other day. He can't understand how after blocking me I can still read his timeline...but momma has her ways...hehehehehehehe...and he does need to be watched. He had to learn not to give out too much identifiable information, fight with the wrong people or bring unwanted negative reactions to his profile. He learned to have positive interactions on line, well somewhat. But I had to go in and teach him after reading some of his earlier tweets. This too is a social learning skill that aspergeans need to know.

The truth of the matter is, that adolescence and the teen years are hard. It takes parental support, vigilance and determination to get your children through unscathed. Add in special needs and it can be overwhelming at times. I won't lie to you one bit. Like liberty, adolescence requires eternal vigilance on the part of the parent. I have no magic bullet. No true practical solutions for anyone except follow your instincts. If something tells you this is no good then it is. If something tells you to oversee what they are doing, find a way to do it. Passwords, computer histories and strict rights and wrongs are a must. Keep an eye on who their friends are and how they are brought up and what their perspectives in life happen to be. Don't be afraid to fight with your children. Set limits and boundaries even more strict than you ever did when they were little ones. In truth its not your children you don't trust. It is the world you don't trust. It is that one moment when their adolescent lapse in judgement could change the trajectory of their lives forever that you fear the most.

I read a great saying years ago about raising children: if your child doesn't tell you they "hate" you at least once a day, you are not doing your job as a parent well. I learned along time ago that before I can be my child's friend I need to be their parent. I have always followed that rule. It has worked well so far. In the meantime, I always keep my fingers crossed and a prayer in my heart too.

Elise

When You Are Reminded That Life is Not Fair

2013-05-18T15:48:00.000+03:00

I am not sure when I had decided that I wasn't allowed to be sad or have moments of angst when it came to the boys' autism. I think that years ago I simply decided that to do what needed to be done I had to go outside myself and deal with reality without being angry, sad or quite frankly jealous. I remember when I felt this huge weight lift off my shoulders when I no longer blamed God, hashem, yahweh, an almighty (pick your omnipresent wraith), but just came to realize that sometimes we are handed a deck of cards that we simply did not expect and that grownups deal with life as it hits you not as you fantasized about it.

So I got better. I didn't really sit and think about what could have been or what should have been, simply because that was not our life and it would not have helped either boy one iota. But this week those feelings of sadness came back. I think these feelings reemerge every time there is some kind of milestone in our lives that involve the boys. I am reminded that they do live outside the typical path that their peers follow.

It's not that their path is not a good one for the boys. It is simply their path as opposed to someone else's. But when they still are not comfortable participating in life's milestones I feel a loss for them. CM1 doesn't care to go to his graduation this weekend. He doesn't want to sit and listen to speeches, while people pontificate at him about his future. Honestly not going to the graduation itself doesn't bother me. He feels he has more school to go so it doesn't pay to go to celebrate. He's not really done.

Our compromise was that he had to buy a cap and gown and let me take pictures which he did. See post here.

But the sadness overcame me last night. Apparently CM1 was given some kind of honor or award (which one we don't know right now) at a special ceremony for graduating seniors. They keep it a secret at the boys' college until the awards are actually handed out, but we were given a kind-of-heads-up that he should be there. He in true fashion didn't want to go. It's because he doesn't understand how special these things are and concepts like "academic honors" simply do not matter to him. The sadness came when I saw the tweet from the college congratulating all those who received honors.

He doesn't understand no matter how many times we tell him that his is a great accomplishment, college in and of itself is something most people do not do or even aspire to. He doesn't see anything he has done over the past years as something special, but something necessary in order for him to accomplish what he truly wants out of life. He sees school as an initiation rite to gain entrance to the exclusive club of adulthood.

He also doesn't like accolades. It embarrasses him. He doesn't know how to process the emotions that come along with being held up as a positive example. He doesn't know how to process the emotions that come with being positively acknowledged. Oh he enjoys getting As, but its a private and personal thing. As long as it isn't held up to the world he is fine.

I used to think it was the overall sensory issue of things like graduation or ceremonies that kept CM1 away. But as I look back over the years its really about him feeling overwhelmed emotionally and not knowing how to deal with what wells up inside him. He couldn't handle his bar mitzvah party either. Everyone was in the greatroom having a fun time while the DJ partied away. Meanwhile, CM1 was in another room with hubby sitting by themselves, because he was too overwhelmed.

So I feel sad. Sad because my son, who has accomplished so much (so much that he isn't even aware of how unique he is in the realm of the world) can't enjoy his accomplishments or the public acknowledgement that comes with a job well done. My sadness reminds me of how I felt when CM1 was in the self-contained kindergarten class and as I went to visit him one day in school, I passed a typical kindergarten where the children were in circle, singing, clapping and laughing. Something that CM1 couldn't do at the time. I remember it took all my effort to not cry.

Don't also tell me that others have it worse. I'm not ignorant. But because there is tragedy in the world doesn't take away from the fact that my child can't enjoy simple milestones in his life. I remember, one day I was lamenting about CM1 not being able to drive to a neighbor, whose sons are the all American boys. She told me there are worse things than 17-year-olds who can't drive because of their epilepsy...shmuck really had no idea who she was talking to. Meanwhile, incidents like this is why I never talk to the general public about anything.

I wish CM1 would allow himself to be proud of his accomplishments. And yes he should understand that it is OK if the world wants to congratulate him on a job well done. And yes there should be some way for him to assimilate the emotions that come with public praise. Unfortunately so far we haven't found a way to help him with that issue. We keep working towards that goal.

I joke that he will be the first person in history to email the Nobel Prize Committee that he is too busy to come get his award and that they should just send him the certificate. However he will tell them, that he would be willing to fax in his acceptance speech for someone else to read. I say he lacks the venal nature of most human beings (well actually he does). I laugh and shrug it off and move on to the next issue at hand.

In the meantime I feel sad this morning on the day of his graduation. Not for myself but because I know what he is missing. I know how life is different for him and how hard things still are for him. I guess at some point I had this unrealistic vision that life would get easier for him as he got older. That meeting life's challenges would come easier for him. On days like today I am reminded that for CM1, life will always be a bit of a struggle that others do not have to deal with.

Yes I know he is up to the task. But as his mother I know too it's just not fair.

Elise

The IRS, Obamacare and Abuse of Political Power: An Issue

2013-05-15T16:34:00.000+03:00

There are new controversies surrounding Obamacare now that the IRS is mired in a political scandal. These emerging issues surround federal government control of medical/healthcare rights/information and the abuse of political power. The Wall Street Journal has an interesting insight into the problem:

Even as the politicized tax enforcement scandal expands, the Internal Revenue Service continues to expand its political powers thanks to the Affordable Care Act. A larger government always creates more openings for abuse, as Americans will learn when the IRS starts auditing their health care in addition to their 1040 next year.

Over the last decade or so the tax agency has stretched its portfolio and become an enforcer and decision-maker for government benefits and programs. Three years ago, National Taxpayer Advocate Nina Olson, who operates within the IRS, presciently noted that ObamaCare is "the most extensive social benefit program the IRS has been asked to implement in recent history."

This March the IRS Inspector General reiterated that ObamaCare's 47 major changes to the revenue code "represent the largest set of tax law changes the IRS has had to implement in more than 20 years." Thus the IRS is playing Thelma to the Health and Human Service Department's Louise. The tax agency has requested funding for 1,954 full-time equivalent employees for its Affordable Care Act office in 2014.

Read the entire article HERE

These are issues that need to be vigorously debated. If a Presidential Administration can use the power of the IRS to harass and malign its political opponents, then what does the IRS and HHS having life and death rights over these same political opponents mean? What if you object to the government's handling of a controversy and the first issue asked is not "how is your health" but "do you belong to the right political party?" This is how life was in the Soviet Union and still is in totalitarian/oligarchical nations. Think this is a hysterical approach? Ask the people harassed by the IRS because they belong to conservative political groups or to pro-Israel groups that didn't follow in-lock-step with the President's view of the Middle East, or taught about the US Constitution and the Bill of Rights (it seems under these criteria my entire family is up the creek without a paddle) and then tell me it can't happen here.

Furthermore, an additional aspect of the controversy appeared yesterday. Apparently the IRS gave private tax information of conservatives to politically left-leaning groups during the Presidential campaign. The powers that be continually tell us that under Obamacare our health documents would be sacrosanct. After the recent revelations about IRS conduct, it is apparent that the inherent potential for abuse dangerously exists.

One of the biggest issues we have dealt with for the boys was making sure that their medical records and their privacy is maintained. We are still dealing with a society that is characterized by a terrible bigotry when it comes to learning and developmental disabilities, as well as a continuing ignorance about mental health issues. The leaking of private health information, by any political operative or "enemy," can doom an individual's future without that person even knowing about it.

Think I am being paranoid read this article from FORBES, "The IRS Raids 60 million Personal Healthcare Records." or "IRS faces class action lawsuit over theft of 60 million medical records."

There is a reason why so many of our Founding Fathers were anti-Federalists. The recent revelations of abuse, and potential for abuse, should put a chill into anyone who values their civil, legal privacy right to basically be left alone and be allowed the dignity of making their own healthcare decisions without government intrusion. Furthermore, my post from last year (below) asks some more questions about Obamacare that never have been answered. It seems, as usual in Washington DC, no one cares to tackle the hard questions.

*****

I am not against many of the provisions in Obamacare. I am against the reality of the abuse it can generate. The following post was originally written when the country thought the Supreme Court would overturn Obamacare. Meanwhile, as we all know, the law was upheld, but this does not make the following underlying issues any less poignant.

And no I don't call it the Affordable Care Act. As anyone paying attention will tell you, the reality is that insurance premiums, because of Obamacare, are predicted to rise either 100-400% before full implementation of the law. There is nothing affordable about that.

Repost from June 2012

Overturning all of the Healthcare Bill…yes yes yes, state’s rights, overreach of the federal government..death panels and a preeminent HHS…yes I agree for the most part.

Meanwhile my almost 22-year-old will not be able to buy insurance for himself. He has multiple disabilities and epilepsy. He only goes to school part-time (part-time students cannot buy health insurance). He does not have a job where they offer health insurance. So instead of telling my son he is not growing up quick enough or telling us we didn’t raise him to be an adult, how about Congress actually taking a look at how screwed up the insurance industry is and doing something about it. (By the way, we never asked for government services for him beyond educational rights and do not plan to.)

It is a good thing, especially in today’s economy that 26-year-olds can stay on their parents insurance. It is a good thing that you cannot be denied because of pre-existing conditions..but how about a cap on what the insurance companies can charge you? What good is an offer of an insurance policy if the monthly cost is astronomical?

Do I want government telling me what to do or which doctor to go to? No I do not. But I do not like it when the insurance companies do it either.

Do I want a government social worker deciding my children’s future?…Absolutely not. That is why we never applied for government benefits for our son. (He has been told too often that he cannot do. He has been disrespected too often because of his disability. I will not allow others to decide his future.) But if you think that insurance companies don’t tell you what you can and cannot do for your disabled offspring you are wrong. When insurance won’t pay for a therapy and the support your child's needs, you need to figure out a way to afford it. Most in this world cannot. If you think this isn’t akin to a death panel you are mistaken.

So all of you out there who think overturning the entirely of the HealthCare Law will be some kind of victory, let me tell you it will be a fleeting victory…hopefully Congress will not play any games and pass a new law filled with everything that the average American liked about the HealthCare Law. But I doubt it. In Washington, we the taxpayer does not matter, it is party politics all the time.

Also, some more big question, if I as a taxpayer have to pay for public hospitals and noone can be turned away regardless of ability to pay (a good thing) why shouldn’t people have to carry health insurance? Why do I have to pay for someone else and their lifestyle and their poor decision-making? Why can’t health insurance be affordable for the average person? Why can’t you travel with your health insurance (yes use of the Commerce Clause can be employed to overturn this directive)? Why does some state legislature, who has been lobbied by the insurance industry, get to decide if a medical procedure is appropriate for your child or not? Why do I have to pay for medical procedures I will never use? Why can’t I pick what I want in my plan instead of being given a fait accompli overarching plan by the insurance company via the state legislature? Somehow I do not think the founding father’s really thought about the healthcare monopoly when they compromised about state versus federal power in the Constitution.

Do I want socialized medicine? I have news for everyone we already have it here in the US in the guise of Medicaid and Medicare. How hard would it be to stretch these programs to include a progressive payment option for those who can’t buy insurance and believe you me, there are plenty who want insurance and keep getting denied (ask any person with a disability.)

What we don’t have is healthcare that keeps the average person in mind. The Constitution was written to ensure that government can not encroach upon our rights. But do we not also have a right not to die, to be treated with respect instead of contempt and to not give up our rights to corporations? I wonder how many in this world carrying on with their libertarian ideals and their holier than though attitudes toward healthcare ever had to decide on food versus medicine/therapy for your child (including adult children)?

Shame on all of you getting ready to open up that bottle of champagne.

Elise

Great Bike GiveAway Winners

2013-05-14T13:01:00.000+03:00

For the last three weeks Friendship Circle has been running the Great Bike Giveaway, a nationwide contest where children with special needs can win an adaptive bike. Over 400 people entered the contest. Congratulations to the 29 winners of the Great Bike Giveaway!

HERE's a list of the winners.

Elise

Summer Volunteering Has Begun...Yippee

2013-05-13T17:36:00.002+03:00

The boys' semester has ended and they are once again helping out at the Audubon Sanctuary. This week they are assisting in planting a "native" garden. And no, I am not helping with the planting. I will clean toilets but I don't do "dirt" (and yes I understand that in a post-apocalyptic world where we would have to grow our own food, I would go hungry)....

I do have to admit it is not going as smoothly as I would have hoped. In all truth, CM1 is just fine, asking for help and doing what he is supposed to albeit not truly happy to be digging so early in the morning. CM2 in his usual manner is being grumpy. This negative attitude that he started sometime his sophomore year is continuing and it is not pleasant. I do understand that it is the age. I just can't wait for him "to grow out of it" as they say....

This is one of those times when "autism meets typical adolescent growth and development." I remember when the special ed teachers at the high school thought it was funny that I can handle anything "autism" can throw at me but typical adolescent nonsense sets me on edge. Like today.

I suppose that puts me in the category with most other parents. I just don't get adolescents. I remember when I was asked to do something I did it. I might not have been happy but I did it. I didn't sit there bitching and moaning and making myself miserable. I did it and got it over with. In truth I wonder at times, if it really is a cultural issue. Has society changed that much that our children are different then we were? Yes, I understand every generation feels that way.

Luckily the youngwoman who runs the Audubon program has a terrific instinct on how to use the boys and how to get them to enjoy what they are doing. Right now she redirected them into a different project associated with the new garden. She also isn't afraid to tell them to behave and to let them know that they are being socially inappropriate.

Also there is another woman who is working with them whom they know from last year and she understands them as well. It was just related to me that this woman has been trying to engage CM2 in small talk. He, as is his nature, was quite resistant. In fact she asked him did he know why she was trying to talk to him about little things. He said no. She explained to him when you work with people its nice to be able to converse with them. (Another much needed social skill) CM2 in his rather blunt way rejected her theory. (So I am told).

I honestly believe we lucked out in having the boys volunteer here. The people are kind and understanding. They, knowing the boys now for over a year, are not shy about correcting them and directing their behaviors. I suppose that is the crux of the matter isn't it. The place that you put your children should always be a learning experience of some kind or the other.

Actually as we have learned over the years, and as some studies have shown, the thing that does most aspergeans in when they enter the real work-a-day-world is the social deficits they deal with everyday. If you can get your children into a situation where the people around them understand that this issue is something to be worked on, not something to hold against them, and something to be guided so that they learn, you have found a really good situation.

Now of course this is a volunteer activity and I don't expect businesses to really spend too much time teaching social skills. Yes human resources will give instruction to people about appropriateness in the workplace, but they too go just so far. Everyone is usually allowed a whoopsidaisy as long as the activity in question is not criminal. Yet if by the time they do enter the workforce there is at least some modicum of understanding of "office social rules" then your aspergeans will be ahead of the game.

By the way, the youngwoman director told me that CM2's attitude is much better than last year. Well that's something and gives me a hope that there is a light at the end of the obnoxious behavior tunnel.

Elise

Never Give Up and Never Give In

2013-05-10T23:59:00.000+03:00

Twenty years ago we were told that there were no guarantees for our oldest son. He was diagnosed with PDD-NOS. He was terribly speech delayed. He couldn't interact socially at age level. He had begun to have obsessions and meltdowns. He was hyperlexic (even though he did understand what he read.) He needed structure and security. He worried and perseverated. He didn't hug or kiss.

The way the doctors made it sound was that there was no future for our child. And almost every psychiatric and social work professional, when he was young, would reiterate the same scenario. Well needlesstosay, I fired every last one of them and found people who understood that CM1 was going to have a future. I found educational professionals who understood how bright my son is and found ways to access that intelligence. I found a village that knew my son was allowed to have a future even if the psychiatric literature said it was impossible.

CM1 will be graduating next Saturday from college. He will be receiving a bachelor of arts degree in history with a minor in holocaust studies. He has a 3.5 GPA. Even better yet, he has grown into a loving, caring, funny, kind youngman who likes to hug you when he is happy. He is thinking about his future and what he wants to do with his life. He is making plans and thinking about the world around him. He has opinions. He has goals. He is unafraid and fearless in the face of his future, sort of like most 22-year-olds.

i have to say that the nice aspect of these graduation robes is that those receiving bachelor degrees get to wear academic/scholar hoods. Unlike with graduate hoods the colors are not indicative of their major but only the school colors. I think it adds a nice extra bit of pomp and circumstance to the event.

CM1 does not want to go to his graduation ceremony. Not only does he not care to sit there for several hours listening to some stranger pontificate about his future, but he isn't done with school so he thinks graduation is a waste of time. I won't push him. It's not important to upset him. The accomplishment of college graduation is however something to be acknowledged and celebrated. We are going to celebrate with a special trip to his favorite restaurant. He already had that rather nice size glass of champagne when he finished his last exam.

He begins his masters program in computer science this summer.

Now CM1 did promise me that he would let me take pictures of him in his graduation regalia. Yeah, its a parent thing and one hell of a huge victory. A victory against the naysayers and the know-it-alls who would have pushed our son into another future. One where he had no voice in his life.

Having been involved in the autism community now for several decades, I am well aware of how lucky our sons happen to be. That the therapies and the drugs and the educational interventions really did work for them.

But I think in the end, every child with autism is a clean slate. To make a decision about a person's future when they are 2,3, 13 or an adult is hubris at best and incompetence at its worst. No one has knowledge of the future and no one knows what will happen when it comes to science, therapy and supports. To disregard a person, to see the disability first and not the human being is quite frankly a sin before God

Every person with autism is entitled to every bit of help to be the best that they can be. In today's world we find that the old wives-tales about autistic individuals are ignorant and prejudicial. Being non-verbal is not an indication of lesser-intellect. Being overly sensitive to stimuli is not an indication of further mental health problems. Being obsessive and structure oriented does not mean they cannot function in the real world, even if they need help in some way. Being literal, not able to deal with sarcasm or abstract ideas does not mean the person cannot reason, think and analyze.

Never let anyone tell you that your child cannot accomplish a goal or accomplish something they enjoy. There are ways to give your child what they need and allow them to be all that they can be. There are ways to ensure that your child lives a happy life.

Never give up and never give in...don't ever let anyone tell you your child can't. There is always a way that they can. I know for a fact that this is the truth, because my sons are the embodiment of that proof.

Elise

Ignorance About Learning Disabilities Abound

2013-05-08T14:16:00.000+03:00

The following from a well-known blogger including my retorts. By the way I never got a response.

@iowahawkblog ADHD is not pretend nor is it a mental illness it's a learning disability. For someone intelligent that was stupid statement
— Independent Patriot (@LibertysSpirit) May 7, 2013

@iowahawkblog mouthy kids still get detention. ADHD isn't about being mouthy. Ur ignorance is abhorrent
— Independent Patriot (@LibertysSpirit) May 7, 2013

@iowahawkblog now you're just being a fool about LD issues. I feel sorry if any of your children have learning problems
— Independent Patriot (@LibertysSpirit) May 7, 2013

The hubby constantly tells me that we need to continue to protect the boys and not allow others to know their real names because there is still a terrible prejudice against those with learning disabilities in society. At times, I think he is being paranoid.

After yesterday on twitter I realize that he understands the venal and ignorant nature of the world alot better than I do. I suppose I give educated people too much credit.

Elise

So While I'm Home Doing Chores.....

2013-05-07T03:41:00.003+03:00

This is where brilliant-computer-sis is spending her time....

Nope its not Vegas nor Epcot. It's the real deal. I'm not really all that jealous....no really I'm not....well OK maybe a little.

Does being a little bit jealous make me a bad sister? I am really glad for her that she's there. In truth she has this ongoing love affair with that city. When she's there she's in her true element. There she is truly happy.

Elise