Saturday, April 30, 2011

Anxiety: Understanding Limitations and Self-Help

Have I ever told you that I hate anxiety? No not mine, the boys. It never fails that whenever there is something that occurs the anxiety will overwhelm them and eventually they will shut down. It’s not so much that they have not learned to deal with a lot of their daily anxiety, that has been a long and hard road for them. It is the times when there is a confluence of events that cause them to have an overabundance of anxiety provoking situations all at once and they have no way of dealing with it all. On these days their pain is acute. However, also using these episodes as learning experiences by teaching them to understand the triggers and what they could do for self-help is very important for their future well-being. But these days still make me terribly sad. We have been dealing with them for two decades now and I ask my self when is life going to get easier for the boys? When do they get a break?

We recently had collegeman retested. It is important to have the boys retested every few years just to see how they are truly doing and what areas may still need more support than others. (Yes now that they are out of the school district it is all on us once again to pay for it.) The boys are changing and growing and developing and there is no reason to think that what was appropriate or what the tests said three years ago is applicable today. Here is the problem that occurred: The testing therapist (not his usual one) even suggested that the anxiety for law school may be too much for collegeman. I hate it when that happens. Because they test him on one occasion they decide to throw out his life plan. We actually called them and said that we reject their assessment. How do you take a life goal and destroy it because of one test and a few hours of interaction? You take the information given to you and find a way to accomplish your goal not throw it out.You figure out a way to accommodate the anxiety into what he wants to do with his life. You slowly transition him into his future, just as we slowly transitioned him into every aspect of his life.

I understand that for many in the psychology field it is hard to watch the anxiety trepidations of the boys. I understand that they have a desire to make the boys’ lives easier. But as hubby said, life has anxiety in it. They need to learn to deal with the anxiety in order to survive. If you teach them to run away from every situation that upsets them in some way they will never leave their house and they will never be able to stand on their own two feet.

Well the psychologists did retract somewhat. We told them that it would cause more anxiety to take from collegeman his lifelong goal of helping people. That to tell him to sit in a room and do research on the holocaust or become an archivist is not the way to go. History, holocaust is a good hobby (no offense to history teachers and professors and museum curators), but there just aren’t the jobs out there and if there are jobs they do not pay enough so that a person can survive.

I also told collegeman that it is fine and good to worry about remembering the dead and murdered Jews in history, but that there are many people in the world today who would like to kill those of the Jewish people who are alive today. Maybe he should find a way to protect the living and bring justice for those less fortunate. In his inimical way collegeman didn’t say anything but I know he is listening to me. When he doesn’t argue it means he is pondering what you say, analyzing it and seeing how it fits into his worldview. I found a list on the internet with over 300 jobs for those with law degrees that does not include the practice of law, many of those jobs are in criminal justice (besides being part of the district attorney's office). Hubby also said, that with collegeman's love of research and his talent for writing what makes anyone thinks he can't be a constitutional scholar when all is said and done. Besides from what I understand, collegeman has given some "wicked" presentations in his classes this semester and is becoming quite the public speaker.

Meanwhile, anxiety once again did rear its ugly head last week for collegeman. But as hubby and I knew he would, collegeman handled it wonderfully and to the best of his ability. I guess the psychologists don’t always know everything. Case in point:

Collegeman waited until the last minute to write two major papers needed for one class. We had thought that he was caught up and that he had it all organized. We had thought that the classroom coaches were helping him with his all executive functioning skills. Unfortunately we were wrong on all accounts. He was up to speed with the basic work, but as with all ends of semesters, the professors seem to fit extra work and papers into the regular schedule.

He worked through the weekend on both papers and even awoke early the day the papers were due in order to finish them. I hurried him to the college to hand in those papers and even walked him to the right mailbox and made sure that everything was copasetic. Now he did finish the papers. He did write them the way they were required to be written, however, he was a little disappointed in himself. He said that they were not his best work. Of course, "not collegeman’s best work" means they were still done quite well however.

On the way home from the college, collegeman actually elicited a moment of self-satisfaction. “I work great under pressure, don’t I?” He asked me. “Absolutely,” I said. Heck, he certainly did. He got the papers done and the necessary classwork for the upcoming week. But there is still a lesson in there about his executive functioning and staying on top of everything that he is doing. I know that for many students this is typical but it takes a toll on him.

After we returned home from our sojourn collegeman sat down and finished off another homework reading and writing assignment. A few hours later I found him sitting on his bed, watching his yugiyoh videos on You Tube. He had a little sweater on and told me he was cold. I brought him his blankets and his pillows and wrapped the blankets around him.

I went into the room later to just check on him. He had cocooned himself into the blankets (only his face was visible) and was laying down watching the videos with headphones on. He let me kiss him on the forehead and told me he was not hungry. He assured me that he was comfortable and that he just needed to rest. So I left him, wrapped up in one down and one fleece comforter, with his head on three pillows engrossed in his little fantasy anime world.

He may not have realized it but his body needed a break. He had pushed himself to his endurance level and his body had told him he needed to rest. The chills were the first indication and the mushy brain, as he described it, was the second. Luckily he knew that he had to lay quiet and he knew what to do to recoup himself.

Even when hubby came home from work, collegeman was still ensconced in his cocoon, happily watching his videos. He did not come down for dinner and laid quietly for the rest of the evening. Hubby told me he came out of his room around midnight and wanted some food, so he made him some frozen PF Chang’s. Not the most nutritious meal, but something comforting.

Interestingly collegeman is tremendously proud of himself through this entire episode. Honestly so are we. He rose to the occasion and handled the pressure the best he could, which was right on target. He also knew that he needed to withdraw and reenergize himself and his brain afterwards. In fact he is so proud of himself, when asking a professor when another end of the semester project is due, he told her that any date is fine, he wasn’t asking for an extension just a clarification. He knows he can work well under pressure.

You know what, we know he can too…

Until next time,


Elise



Meanwhile Sunday is Holocaust Remembrance Day, the Jewish holiday of Yom Hashoah in Hebrew....collegeman would want everyone to remember. This is different than the UN Holocaust Remembrance Day. (Yes the irony is not lost that the UN is the purveyor of some of the world's worst antisemitism at present.) Yom Hashoah was instituted in the 1960s and the date coincides (according to the Jewish calendar) with the uprising in the Warsaw Ghetto. Here is a link to the Ghetto Fighters Museum in Israel. It is located at Kibbutz Lohamei HaGeta'ot.

In Israel a siren sounds and everyone stops. Traffic comes to a halt and people exit their cars, pedestrians stop where they walk and noone and nothing moves.

Forever Young

One random act of kindness a day is all it takes to make the world a better place.




Until next time,



Elise

Friday, April 29, 2011

Yes, I am a Hopeless Romantic: The Royal Wedding

Yes, I did wake up at 4 AM to watch the Royal Wedding. I loved the news about Chelsea Clinton's wedding and Jenna Bush's wedding, too. (I have no patience for the jealous and the meanies on any continent.) I love weddings. Call me a hopeless romantic if you will, I don’t care. It doesn’t matter who you are and where you live, but weddings, when love is involved, are pure joy. The expectation of a life time filled with wonderful hopes and dreams encased in the aura of expectant possibilities. A young couple’s commitment and honor brings them to this place where they vow to each other an eternal bond. Ok yes, it doesn’t always work out that way, but most of the time it does and there is nothing wrong with wanting that grand-eternal-love. I think it’s human nature to seek happiness and human nature to revel in the possibilities of joy. Weddings speak of the continuity of life and the fulfillment of the future. It is part of the circle of life and the promise that the world is eternal.

What is the point of caring about the private lives of strangers? I just don't know, but I can tell you that I have had a huge smile on my face all morning. Truly you really are allowed to forget your troubles and turn away bad news for a small amount of time once in awhile. Perhaps my desire to watch the royal wedding is because even after almost 29 years of marriage I remember my own hopes on my wedding day. It brings back my own nuptial feelings of joy,  reminding me once again why I married my college sweetheart.











Perhaps it is because of everything we have been through over the past 2 decades with the boys and the knowledge of the challenges to come, that leads me to embrace the private hopes of strangers. I'm not really sure. What I have learned over all these years is that some moments can be very fleeting and that you should grab a hold of every moment of joy and happiness that you can. My wish for the newlyweds- I do hope that life is kinder and easier for the children of the Duke and Duchess of Cambridge then life has been to mine.


Until next time,


Elise

Wednesday, April 27, 2011

Born This Way

Glee did an amazing job this week. The message was one of acceptance of yourself, your right to ask for help and the demand that society make room for everyone. It is a great way to end Autism Awareness Month.



Glee does Lady Gaga:




Now for the official GaGa version...be warned it is anything put PG:




Until next time,


Elise

Tuesday, April 26, 2011

The Tree-Acorn Convergence: Plus A Constitutional Primer


They say the acorn doesn’t fall far from the tree. In our case that is very true, but I am actually talking about myself now, and not hubby as the progenitor of the latest event. Honestly its not even about the boys right now, it is purely about me.

We always tell ourselves to watch the children and make sure that they do not let their obsessions over take them and to not let their perseverations harm them in any way. But your children, or at least mine, did not end up with the genetic predisposition for obsessions just on happenstance. Oh no, I can honestly tell you, that I have plenty of my own little obsessions and perseverations as well.

This morning or rather, yesterday evening into this morning is a case in point. You see there are several things in life that annoy me greatly. One of them is ignorance of the law and not just any law, but when people misunderstand and misread the purposes and rights associated with the US Constitution. While we can agree to disagree about what certain rights entail and how much government interference is allowed, there are some absolutes that just are the way they are. Case in point, that the US Supreme Court (SCOTUS) has the right and the authority to rule on the Constitutionality of a law passed by Congress and if a law passed by a state overreaches into the US Constitution they have aright to review that law as well. Plain and simple it is called judicialreview. It was the first case discussed by SCOTUS setting out the parameters of its mission.

Apart from that there are three branches of government, the legislative, the judicial and the executive. Our Constitution provides for a checks and balances approach to legislation and the power of the government. It is something someone is supposed to learn about in elementary school. But apparently there are a great many people in the country who do not seem to know about that. Plus there is a huge volume of law surrounding the Constitution and while scholars do not always agree about an outcome of a case, they do understand the typical rules and requirements as laid down by the court in order to decide an issue. However there happen to be an inordinate amount of people in this country who have decided for themselves what the Constitution means, how it is to be applied and whether it is relevant in their lives without an understanding of the fact that they simply do not know what they are talking about.

So here I go responding to people's comments on a particular law professor's blog. In my obsessive way I try to politely explain that there are Constitutional scholars who are discussing the issues at hand and then I link to a video of one particular well respected and well-known Constitutional scholar (here). Well the unholy hullabaloo that followed was unreal. Not being one to let anything go or let anyone call me an idiot, I of course answered back vociferously. I do not know why it mattered to me. Not one person knows who I am and I had no idea who they are. It just got my dander up that people are so stupid. Their snarky ignorance just galled me and quite frankly pissed me off.

Well I posted about it on facebook and in their own inimical way several persons happened to chime in asking me what the heck is wrong with me and why am I wasting my time? @Childanxiety even mentioned that I couldn’t fix stupid (that is true) and that I need to spend my time doing something more productive, like write that book I always talk about. Meanwhile my New Year’s resolution was to write that book, and nope I have not even started it. I suppose if I spent less time reading what others wrote and being annoyed I could get my own tuchas in gear and keep my promise to myself.

Well it took me a moment to pull my self back from the abyss of obsessive perseverations. I have removed the blog link from my political blog list and have decided to not care what anyone answers. The truth of the matter is that it doesn’t really matter. In the real world there are people that you are never going to be able to fix and when their ideology is mixed up in hate and ignorance it is even worse to try to dispel some of the inanity. I just find it so sad.

There is nothing that I love more than the brilliance in the US Constitution. Its simplicity is its magnificence. No it is not a perfect document by any means of the imagination. How could a document written by human beings be perfect? But its imperfections are something the founding fathers acknowledged and that is why they left it with the ability to be amended. But it's the Constitution’s codification of the rights of the individual trumping the rights of the state which is unique still to this day in the world in which we live. The gift that we as Americans have been given is beyond measure in the annuls of human history and for some to take it, convolute it and then try to sell it back to you as anything but a document of freedom for all is intolerable to me.

I can’t help myself when others disrespect the brilliance in the Constitution by turning it into something it is not. However, I am afraid I am gong to have to divest myself from caring what others think and put my energies into something positive, uplifting and find a way to propel myself forward without obsessing on inane individuals who don’t matter. Perhaps it is time to at least figure out just what kind of book I want to write. I have looked at novel writing, but I am not very good at creative writing. Perhaps I should write a novel with a message about the Constitution and the value of freedom for all. Yes I know its been done before. All I need is a hook, a way to find a new approach, something that will get people to read it.…Unfortunately wizards and vampires are a little overdone right now.

Like I said, the acorns don’t fall far from the tree…. going to use some of the tricks I try to teach the boys to pull them from their obsessions. Lets see if any of them work for me. I will let you know.

Meanwhile here is my take on the US Constitution:





WE THE PEOPLE

It is important that we, Americans, never forget the importance and the significance of these three words. We need to remember that these words are written into our Constitution larger and more pronounced than any other words for a reason. We must never forget that we the people are the United States. We the people created this nation. We the people took destiny into our own hands and told the world, we the people will control our own future. We the people will not be denied.

It’s not as if there is even a question really in today’s day and age that the United States is all about the people. It is quite evident that the people when they are denied will stand up and be counted. There are those that when called to serve stand up and sacrifice for our future. When issues abound there are those that politic and lobby for their beliefs and point so view. There are those who are civically minded volunteers, active in their communities, thus making all our lives joyful, secure and free.

But to understand why something is important, I also think it is necessary to understand just how rare it is and just how vulnerable it can be. ... we must understand that to enjoy the freedom to make all our own choices means we must take ownership for our failings as well as our successes.

But first we must also address the issue of what is the Constitution. No not in a specific, article by article, way. Anyone can buy a copy of the Constitution in a bookstore or order it on line to find out the exact rules under which this government functions. What I would like to discuss is the power of the document. What it has actually accomplished, something that had never ever been accomplished before in history.

What I am talking about is the power of the US Constitution to transform a disparate group of unrelated and unconnected people into the freest nation to have ever existed in the history of humankind. That it took people from across the globe and created what we now call an American. That these same so-called self-styled Americans have even evolved and created a challenging new philosophy of nationhood.

Yes, it took centuries for us to appear, but we had to begin somewhere. As with the development of societal norms, the development of a people, the society in which we live, also thrives on evolution. No I am not just talking about civil rights, suffrage, equal protection or disability rights. I am talking about something much more esoteric, something much more abstract as to who we are. We Americans are the confluence of ideas from around the globe. Not just in food, clothing and language, but in culture and law and relationships. We may have started our nation as an outgrowth of the British Empire, replete with a very British understanding of society, but we made it more than that.

Some do point to the American Revolution as evidence of a break with English tradition, but in truth, it really wasn’t. The American Revolution was fought, because the British government usurped the very English rights of landholding men. The government of George III took from our founding fathers that which they held more dear than their own lives. Lives which they in fact were willing to forfeit in order to retain and that was the very English ideal of individual liberty (of course at the time they were only talking about white, landholding men, but we have thankfully evolved past that) . This concept of liberty is all about the right to direct your present and prepare for a future of your choice. Intrinsic within it is the idea that individuals are entitled to participate in the development of these rights through representative government.

OK, so many say the Congress isn’t representative of the American people today. For that we have no one to blame but ourselves. But we have seen a wellspring of action and the people have demanded to be heard. This has been a raucous election season and it is not over. But this is our Constitution in action. This is the legacy that our forefathers gave us. This is the legacy that our forebearers died for. This is what people around the globe daily die for.This is freedom and it is glorious.

Even the formation of the government in the Constitution is modeled after the English system of parliament. Remember we even had a ruling class, our senators used to be appointed by the governors of the state, not elected by the people. Meanwhile, it was the House of Representatives that was representative of the people. There was also no mention of term limits for a president. It just became de rigueur to serve only two terms to follow in Washington’s footsteps. Not until after FDR, was the Constitution amended to include a two-term limit on a Presidency. Ironically, the founding fathers had even left open the potential for a King, even though they would have all bristled at the thought.

But how did the US Constitution help us to evolve and bring together the confluence of ideas that has made us who we are today? The Constitution holds us all together, by allowing everyone to be who they are, and be Americans. No I am not talking about the hyphenated American, or class warfare. I am talking about the power of the Constitution in our everyday. It is the Constitution that recognizes a human’s need for self- realization. In fact, the power of the Constitution within our society is that you don’t even know it is there unless you need it. The Constitution empowers anyone living within the borders of this nation, citizen or noncitizen, legal alien or illegal alien. All can access its protection. If you are in the purview, and subject to the laws and regulations of the US government (you don’t even have to be in physically within the borders of this country) then you are entitled to the aegis of the US Constitution.

Every American knows that he has rights under the Constitution. Of course, he may not be able to name every right in those first ten amendments, but Americans know the government is hard pressed to really interfere in their lives. Americans understand that the Bill of Rights is not about granting us powers over our day to day existence, but it is about the curtailment of the powers of the federal government to interfere in our day to day existence. It is us, We the People, who give the government limited powers, and We the People who can take or give power as we see fit. Americans understand that no one, not even the President is above the law. (Presidents can be impeached, they can be forced to resign, and they can be chastised by the Supreme Court, or overridden by Congress). No one and nothing is more important than the people. That is the power of the Constitution and that is why our society grows and changes and evolves almost on a daily basis. Sometimes we evolve in even violent ways (civil war, social unrest, even some types of demonstrations), and sometimes we evolve in nonviolent ways (sit ins, marches, speechifying, townhalls, laws and amendments, lobbying and politics) but our nation evolves.

We change because the Constitution allows us to challenge each other. We challenge each other‘s ideal and thoughts and beliefs. We challenge each other’s ideas and truths. We challenge each other’s concept of government and what role the government will play in our lives. But mostly we challenge each other’s idea as to what kind of America we want our children to inherit. We challenge each other’s idea of legacy. We challenge each other’s idea for the future. We challenge each other’s notion of what is good for posterity. We even challenge each other’s idea of what makes us proud of this country.

So that is how the Constitution creates a people. It takes a disparate band of human beings, who are up for a challenge and it allows them to be challenged. Many around the world do not understand Americans. Many do not understand the individuality and independence that is intrinsic in the American spirit. Many around the world do not understand that our differences are our greatest strength. Many around the world do not understand that our arguments and our fighting and our not always pleasant discourse are the things that make us a people. For as a person grows through trials and tribulations to become much more than they ever thought they could, so does a nation. So does this nation.

So next time when you read the Constitution look for the invitation that reads, come help create a people. Do you see the dare it lays out before you? It is written boldly and plainly so all might see. It invites those who are not afraid. Come help me build a nation it calls. Come stand with me and we shall know what it is to be free. 



Until next time, 

Hopefully with all my perseverations gone,

Elise

Monday, April 25, 2011

Second Year Blogiversary

Today marks the beginning of my third year of blogging about autism and how it effects my boys. I have regaled everyone with the ups and downs we faced as a family and the boys faced individually. I have tried to parcel out the advice I have learned over all these years in trying to understand and help my wonderful offspring. I have gone into detail about the trials, tribulations and unique challenges the boys have faced and surmounted.

When this journey began the boys were on the cusp of manhood. Collegeman was in his challenging sophomore year of college and HSB was beginning to spiral through his sophomore year of highschool. Today collegeman is looking at graduate school and HSB is in his last marking period of highschool getting ready to jump into young-adulthood. I look back at where they were those two years ago and I see how much they have grown and changed. I have seen the development of their personalities and the development of their individuality.

I always tell my readers to not obsess about the future, but to take every moment as it comes and then one day when you do look back you will see just how far your child has come. Do not project your fears onto your child. Help them be all that they can be, just like any parent would. Do not hold them back and do not let others hold them back as well. Allow your children to fly. And fly is exactly what the boys are doing and are planning to do in the future. It is scary, yes, but they can and they will do it.

I have talked about supports, education, adventures and advocacy for your children. I have written about vacations and time when you just sit and do nothing. I have talked about YOU and how you are a person, entitled to some time for yourself. I have talked about how to keep your marriage together and to find support from the right people and to ignore those that bring a negative vibe into your life.

The year to come promises to be quite interesting, filled with new challenges and new mountains to climb. I am preparing and planning for all occurrences as we enter into a new chapter in my family's life. HSB in college (he already picked an honors course dealing with racism and prejudice and how it effects society) and collegeman on the verge of graduating and deciding the direction of his life (what type of graduate program so he can go on in life and take care of himself as any adult needs to do). To paraphrase the great Betty Davis in All About Eve...fasten your seat belts, it is going to be a bumpy ride (it truly always is)...ready or not the new year approaches.

Now I want to thank you, my readers and commentors, for the time you take to read my musings, ideas, concepts, speculations and rants. Thank you so much for stopping by and thank you so much for coming back.

Until next time,


Elise

Saturday, April 23, 2011

The Downside of Autism Awareness Month


To sin by silence when they should protest makes cowards of men (women too)...Abraham Lincoln. Dramatic, you bet, but not wrong and very applicable:

Yes, you read the title right. There is a downside, in fact a dangerous side, to autism awareness month. No it’s not about making society aware of autism. No it’s not about talking and demanding acceptance and support that your child or you need. The dangerous part of autism awareness is the fact that every television and radio station gets on the bandwagon without knowing or understanding anything about autism.

These purveyors of the lamestream media (LSM) present charlatans and ignoramuses as reliable persons and then let them spew their garbage. They allow questionable people because they have DR before their name, push products and theories that are unproven and possibly harmful to your child. They allow someone because they can wiggle their butt in front of a camera (not just JM, but quite a number of those that play pretend for a living) talk and discuss what autism is, is not and how your child can be “recovered.” Luckily people have stopped talking about "curing your child." Thankfully Dr. Temple Grandin's life story and her advocacy against the term has had some kind of effect.  By the way, I hate that term recover. I really do. It’s not that my boys have not gotten better, heck they have. It’s not that collegeman especially is the poster child for what proper therapies and supports can accomplish for your child. But I never say he is recovered. He was never lost. He is still the same child he always was. He has just learned to function with an autistic brain. He and HSB have learned to compensate for the lack of functioning synapses, comorbid issues and learning disabilities that come along with the brain God gave them.

Sadly most of these very short segments are geared to the uninitiated or parents of the newly diagnosed. This is a very vulnerable time for parents and the fear and unknown can overwhelm them. These persons do not necessarily know where to turn or what their rights happen to be. They can be sucked into the arms of those what will bleed them dry of money leaving nothing for therapies and medications that are proven to work. Also as I have said before, none of these snake-oil salespersons are questioned by the LSM. They are given platforms on television and respect that they do not deserve.  Apparently investigative reporting is dead as a form of journalism if it doesn’t fit into a politically correct narrative that it’s the evil toxins in the air causing autism or the myth that won’t die about vaccines and autism. Above all noone bothers to let anyone know that the expensive therapies and supports needed by children and persons on the autism spectrum should be being given by the school districts. Your child is entitled to help and support until 18 or 21 years old, from the time your child is 3 years old. Before that  States are required to provide Early Intervention services from birth.

It is time that the national organizations that support and promote autism awareness protest these egregious idiocies. It is time that the Center for Disease Control (CDC), Department of Education (DOE), National Institutes of Health (NIH) come out and run a campaign telling parents and the newly diagnosed where to go for help. It is time that the Federal Communication Commission (FCC) clamps down on television “news” that promotes harmful and questionable people and programs. It is also time that media also acknowledge that just because you have someone on staff with a medical degree does not mean they know anything about autism. (I know it is hard for those with medical degrees to admit that they are not all-knowing, but guess what they are not.)

But mostly I think it is time for us parents to demand retractions when we see these programs that are potentially harmful to others. We know what works and what doesn’t work. We know because we have been there and we owe it to those coming behind us to prevent their abuse. I have emailed, tweeted and messaged on facebook. I have made my voice heard. But I cannot do it alone. I need help. It is time, when you hear or see something you make your voice heard and demand accurate informational sessions on this disability. If enough of us raise our voices in protest maybe one day we will be heard. Maybe we will help others avoid being abused at one of the most vulnerable times in their lives. It’s what being part of a community is all about. It’s part of the village we all need so that all our children have the futures of their choice.

I hate to borrow a slogan but in truth if you see something say something….

Until next time,
Elise

For more on your children's rights under law check out the sidebar of Helpful Websites: Wrightslaw, Special Education Advisor, US Gov- American's with Disabilities Act (ADA), Individual with Disabilities Education Act (IDEA). Remember these websites are just the beginning. Contact me through my profile if you have any questions and need some direction.

Wednesday, April 20, 2011

The Art of Conversation


It is interesting how we as parents can lull ourselves into believing whatever we want to about our children. I had thought I had learned the lesson to not take everything the school or the paras say about progress to heart and do a little investigation on my own. Alas I fell back into the trap. Everyone had been telling me that the boys had been making really good progress in the social arena and that they knew how to converse and have appropriate give and take. Well along came Passover Seder and we found out otherwise. Well actually it wasn’t even Seder but a pre-Seder get together that opened our eyes.

It was a family gathering and the boys along with their cousin of about the same age were all sitting at the table. Their typical cousin was gracious, appropriate, outgoing and energetic in her conversations.  The boys on the other hand, were one-sided, would yell at each other and totally lacked any conversational sense what so ever. While collegeman did come to the table with props to help in his conversation, which we felt was a good thing; he was not able to expand from what he planned to talk about. HSB was just a boor.

Luckily our extended family (on both sides) is very understanding about the boys and did not mention their behavior nor look askance or give us a hard time. They never actually have done any of the “nasty” stuff that so many families are prone to when facing a child with autism. They have always been understanding and supportive and nonjudgmental. Which actually makes our job in dealing with the boys so much easier. It is hard when you have to fight with relatives, the world at large and your children at the same time.

Well hubby was beside himself. When we got home from the get-together he decided to do something proactive. Besides asking me what they had been learning since neither really compared to their cousin in any way shape or form, he wanted to know what the schools and the paras have been seeing. I told him that all the reports said that they were both doing tremendously. I do think I need to dig deeper definitely. I also was meeting the next day with the psychologist and I told him I would ask her for some recommendations.

The psychologist did tell us that it was a good thing that collegeman had brought the props to help him. Even though he knew everyone from the time he was an infant, it still was different than his normal routine and the noise and interactions could be confusing to him. The fact that he brought the props to help him in conversation showed that he was trying to compensate for a situation that quite frankly made him very nervous. When I mentioned this to hubby he said he did think that it was good too. That he was really concerned though about how they couldn’t have typical give and take conversations and that HSB kept yelling and interrupting.

Now I know we should have prepared the boys for the situation better, besides just telling them where they were going and who was going to be there. Perhaps a verbal social story with strict rules and ideas would have helped. But honestly, it is a family situation in a place they have gone since childhood with fewer people than normal when we have a family get-together. Really didn’t expect the inappropriateness that came along with the day. I suppose the question becomes, when does it really end?

We know that in transitioning into college or later (hopefully) to law school there will be work involved. If collegeman can get a job this summer there will be work to be had in the transition. But when do the social stories and transition issues end when they are going into a situation with people they have always known, to a place they are familiar with? I don’t know and I think that is one of the real new issue we, as parents are trying to parcel out ourselves. When if ever does anything become easier? Not just for us, but really for the boys. When do things become easier for the boys? When will they be able to go into familiar surroundings with people they know and not be so overwhelmed and maybe enjoy themselves? Will it just happen one day or will they have this forever? Will they be able to compensate on their own or will they always need someone to hold their hand? Honestly I think the unanswered question is really what keeps both hubby and myself up at night. (Yeah I know all of you can relate quite well.)

Just as an interesting aside, when I first started my journey into Internet support groups and blogging I came across a forum for autism support. When I told one mother what I still did in the way of therapy and support for the boys, they were midteens at the time, her response was that her daughter was 5-PDD-NOS dxed, and she planned to be finished with all that autism support and therapies by the time her daughter was in her teens. I wished her good luck with that. Needless to say whenever I would post on that site again none of the parents acknowledged what I wrote. I guess the reality that autism can’t be cured didn’t sit well with them. I even got castigated by the administrators because I used hurtful language when I said I "hated this cure crap," and that autism can’t be cured. I guess according to them, the only ones who were entitled to their opinion were the followers of Generation Rescue and Jenny McCarthy. Needless to say I left that forum. It wasn’t worth my time. I figured that they would all learn the hard way if necessary and it wasn’t my place to teach or help those that wouldn’t listen. I do feel sorry for those children however when their parents realize that they will always be autistic.

Now back to the main story: It is interesting because they do tell me in school that HSB is quite appropriate in his classroom conversations and his ability to stay on topic. He doesn’t argue with anyone, except those nasty boys in his resourceroom and that he is generally very mild mannered. (In fact the psychologist told me that they have been working on proper conversational give and take, so go figure what happened.Psychologist seemed a little taken aback, and wants to figure out what happened too.) HSB does take issue with his brother but I think that is typical brother-on-brother nonsense. In fact at our Seder the next day, the fighting that ensued and the inappropriate actions from both of them would have lent one to think that they were both still in their terrible-twos. It was only hubby, the two boys and me thankfully. So I don’t think it was their being overwhelmed by the situation or the newness of a social context. Collegeman was back on the “I am no going to do this because I don’t believe in God” kick and HSB would then get upset and they would fight. Honestly I should just videotape the whole thing and instead of putting myself through the mishegas every year I should just replay the tape.  Get the crap over with and move on to the learning part of the evening (Part One, Part Two, Part Three).

The very apparent problem that we face is the fact that the boys do not know how to interact in a conversation that they are just not interested in. They do not know to not bring up caustic subjects and what might be considered caustic. They do not know how to not cause tension in a conversation and interjected at inappropriate times and at inappropriate decibel levels.

While we are going to talk to the school, the psychologist, the paras and the life skills coach to find out what is really going on, hubby did come across these websites that have some basic instructions on how to have a conversation. Have Google will travel, that is hubby. Listen the man found out how to build that Murphy bed (here, here) on line so Googling definitely seems to work out well for him.


I think the reality is that everyone, typical and autistic, needs to practice these skills. The Art of Conversation comes easily to the very few and it is one part of becoming an adult that is essential to success. I don’t think you need to have an autism spectrum disorder to have an issue with this skill but having an ASD does make it just a little bit more challenging.

Meanwhile at last night’s dinner, hubby went over the rules he found and we practiced as they ate. It was not a long session, maybe ten or fifteen minutes. But we think if we do this at every meal that we sit together eventually it will sink in and eventually they will know how to be gracious, engaging and endearing. This will enable the world to see what we see in them underneath all that adolescence and aspergers. Then they will be given the chance at the future that they are entitled to just like everyone else.

Finally before someone comments or asks…. No I don’t think the world needs to accept them the way they are. There are accommodations (which are necessary and a civil rights issue) and then there is giving up and quite frankly self-centered cowardice too. As I have said before, there are rules of behavior that are deemed appropriate and not appropriate. It is not Ok to give up and to say its everyone else’s problem.  Just because it is hard doesn’t mean you don’t do it. Because it is hard means you work harder. It’s part of being a member of society to learn how to get along appropriately with other human beings. Remember if its worthwhile, which appropriate social interactions happen to be, it is worth doing well.

Until next time,
Elise

Monday, April 18, 2011

Happy Passover




For the kiddos...



My favorite from The Prince of Egypt...




To all my co-religionists a Happy Passover (Chag Samaeach).

I'll be back after  Seder.

L'shanah Haba B'Yerushalayim





Until next time,


Elise

Sunday, April 17, 2011

Everybody in the House of Love

Yes I am waiting for the real thing. Will be waking up at 4 a.m. on the morning of April 29. I know, I know, I could just watch the reruns, but its not the same thing. You see, I am a hopeless romantic. I believe in joy, love and hope; ideas wrapped up in every wedding. OK, I also can't wait for the spectacle of the British Royal wedding as well. I think spectacle is one of those things that many of us enjoy. We may not be able to afford it ourselves but I never resent that someone else can create such a dream world for themselves. It's why one of my favorite shows on TV is Platinum Weddings and Say Yes to the Dress. (My wedding dress cost $40 from the Filene's Basement Bride Run.)




For any of my readers in the UK who are annoyed about the cost to the taxpayer and annoyed at me for looking forward to the wedding: I am also glad that I am not paying for any part of it with my taxes.  Sorry, a bit cheeky of me I know, but in all fairness we got to underwrite Michelle's vacation in Spain.


Until next time,


Elise

Tuesday, April 12, 2011

Autism Telesummit

Please join me for the autism telesummit. You will notice on the list of speakers some of our guests and friends from The Coffee Klatch, and yours truly of course.

Here is Claire the host of the event explaining just how easy it is to listen in.


The little boxes she talks about are on the main telesummit homepage linked to above and below.


SPEAKERS

Kat Houghton of  http://relatetoautism  will be talking about

Finding Balance in your Interactions: How doing less inspires more from your child


Claudie Gordon- Pomares of www.multisensorytherapy.org will be talking about

7 Gentle Multi-Sensory Therapy Techniques to help you treat your child’s anxiety


Becky Blake of  http://CreatingSuperKids.com  will be talking about

5 Life Changing Keys to Unlocking Better Behaviour


Connie Hammer of http://parentcoachingforautism.com will be talking about

From Diagnosis to Advocate: 5 Stages of Parenting a Child with an ASD Diagnosis


Anna Kennedy of  http://annakennedyonlilne.com will be talking about

Living and Working with Autism- Mum to 2 boys and husband with diagnosis of Aspergers Syndrome


Nadine Honeybone of http://the autismdirectory.com will be talking about

Creating an ‘autism friendly’ world


Amalia Starr of http://AmaliaStarr.com will be talking about

How to Build and Secure your Child’s Future into Adulthood


Elise (ME) of  http://asd2mom.blogspot.com will be talking about

Understanding and Helping your autistic child


Jean Nicol of http://theeatinggame.ca will be talking about

The Eating Game: Your Child Can Have Healthy Eating Habits Too!


and Claire Hayes, your host, talking about

How to be the Best Parent Ever (or how to look after yourself without the guilt)


Come and join us!
http://autismsupporttelesummit.com

Hope to see you there.

Until next time,


Elise

Monday, April 11, 2011

Exceptional Call Center: Only Those with Disabilities Need Apply

First there is inclusion in the armed forces, and extreme sports for those with disabilities. Now an innovative  program for employing those with a myriad of disabilities. No not in the USA, in Israel.



h/t VJerusalem


Did I mention that the largest research facility in the world dedicated only to autism is nearing completion at the Hadassah Hospital Mt. Scopus campus in Jerusalem.

In Hebrew we say Kol Hakavod, way to go.

We also say Yasha Koach, go with strength.

Until next time,


Elise

Feeling Good

Jazz doesn't get any better than this....



Just enjoy.

Until next time,



Elise

Saturday, April 9, 2011

Dealing with the Oldest of Hatreds-AntiSemitism

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Teaching your child to deal with hate is a very important part of growing up. As I have written before, HSB is having issues with a particular boy in his learning center class. The last time they “interacted” the boy called HSB a ”fucking Jew.” The problem is that since no adult heard him, they said they couldn’t’ do anything about it. This left HSB in a bit of a quandary.

He knew that the other boy had said something hateful (duh) but the administration that generally protects children from things like this in our school did nothing about it. There was no punishment for this boy; there apparently wasn’t even a “talking to.” HSB was beside himself. Not only did he think this terribly unfair, he felt totally violated. HSB had never been up against hate before and he truly did not know how to react. Yes, we had talked about it after the incident and I told my son that of course I believed him. I also told him that I would tell the Vice Principal when she called. Unfortunately she did not call about that incident, she called about another one.

To understand the present situation you need to understand a little more about HSB. HSB has a strong self-awareness (good). He does not lack for self-esteem (good). He does not lack for self-importance (good). He is proud of who he is (good). He is sure of himself (good). He doesn’t take nonsense from anyone (good). He stands up for himself (good). Once you get on his bad side, you are done for.

What he doesn’t always do is let things go. He holds on to slights and misdeed without ever forgiving another human being (except perhaps his brother, which is fine). If you cross HSB you are on his shit-list forever. Personally that is not necessarily a bad thing, as you know who are your true friends and who are not. However, in the real world you must learn to ignore those who are negative influences in your life or you just move on. HSB unfortunately, holds on and will continue to pinprick away at the issues. Of course, when one or two of those children happen to be in your resource room class that does present a problem with moving on, but HSB had been spoken to and told to just ignore them. (Oh yeah, forgot to mention that the boy that had tried to bully HSBearlier in the semester in film class was also in his resource room.)

So here the scene was set and the drama was about to begin. I have to tell you I would not be predisposed to wanting to be in a room with someone who was an anti-Semite and I knew was an anti-Semite. I would not want not be in the same room with someone who was a homophobe, misogynist or a racist either. Apparently this boy tends to be all of the above.

What has actually happened though for HSB since the first “fucking Jew” incident is that he has become hypervigilant to what he deems anti-Semitism. He looks for it on a daily basis and if anyone even mentions the word “Jew” in any way shape and form he pounces. He is scouting for Nazis.

For those of you who have never had someone call you a slur due to your ethnicity or your religion or your race, I suppose the obsessiveness about it may seem overdone. But when something like that occurs you feel that someone not only demeans where you come from, but takes from you your right to exist and be a part of the society into which you were born. It takes from you your humanity and your humanness. It takes from you your right to be heard, heeded and respected. It is why in the disability community it is so important how people are defined. It is not about semantics it is about personhood.

So HSB is on the hunt for Nazis in his midst. I use the term Nazis loosely, of course. HSB doesn’t think that anyone will be goose-stepping down the corridors of his highschool anytime soon, but he is not going to tolerate anyone taking from him his right to be who he is and to be proud of who is as well.

I thought about this a lot for both of the boys. I realized how lucky and how sheltered they truly happen to be. They grew up in a community that was predominately Jewish in an area of the country that is heavily populated by other Jews. While there had been a few incidents of anti-Semitism in the highschool, graffiti and the like, nothing had touched them personally in anyway shape or form. Collegeman can study the history of anti-Semitism, the Holocaust and the Middle East all he wants; he didn’t experience any of it outright (thank God). He can try to put himself in the shoes of a Holocaust survivor (don’t ask, we are trying to get him to stop that too) but it is not the same thing and hopefully he will never personally know such evil in his lifetime. They, quite frankly like the vast majority of the Jewish community in the United States have never truly experienced any amount of overt gross anti-Semitism. (Actually it tends to be a lot subtler than it used to be, even though unfortunately that is changing too. According to FBI statistics over 70% of all reported hate crimes in the US were directed at Jews or Jewish institutions.)

Anyway HSB has decided to hunt down and rid the highschool of any vestiges of anti-Semitism. He walks around with a little or bit chip on his shoulder and he is just not going to let anything get by him at all. I have to say this may be partly my fault. When the first incident happened with the boy in the resource room, and no one believed HSB I told him, that as a Jew we know when something is anti-Semitism. You know the old saying if it walks like a duck, quacks like a duck it is generally a duck. Well the same goes for Jew-hatred. I forgot whom I was dealing with however, and that he needed a little more direction with rules to follow.

Apparently, the same day as our present incident, HSB yelled at a boy who mistook a pentagram for a Jewish Star, calling the boy names. The unfotunate boy just happened to be Jewish and quite frankly just made a mistake. Yes, it is questionable what kind of Jewish education that child received when he thought a 5-pointed as opposed to a 6-pointed star was a Star of David, but that is his parent’s problem and not mine. HSB as Superjew is my problem.

Now the rest of the story goes, that HSB and the other “boys” were in resource room. HSB was minding his own business, well sort of, and the other boys were doing what they do. One of the boys seemed to have broken a school computer or the keyboard really and then HSB went into action. He pounced. Yelling at them calling them names and just generally sticking his nose where it didn’t belong. The arguing and fighting went on for more than half of the class. When the teacher thought that she had calmed the situation down, HSB would just start up again. He wouldn’t let anything go. They did tell me that the other boys at first did back away the way they were supposed to. They really didn’t try to engage HSB at all.

But HSB just wouldn’t let it go. Finally the “other boy” chimed in and they started calling each other names and yelling. That is when the latest “fucking Jew” incident happened. So here we are, HSB starts nonsense, which he got in trouble for, and the other boy finally because someone else heard his anti-Semitism will get detention next week.

I hope that this will be enough to calm HSB down and stop looking for anti-Semites under ever rock. (He won’t ever remove the boy from his shit list and quite frankly I don’t care.) Of course anti-Semites do tend to come out in the daylight in today’s world more often then you think. But HSB needs to be able to move on and learn to deal with hate. He is never going to get rid of it. He is never going to be able to fight it on his own. He needs to be vigilant in some respects. But he cannot let it take over his world and define who he is.

I suppose in many respects we have fought for so long and so hard for society to accept and understand the boy’s autism that we totally forgot that there are people out there in the world who will not accept them for other reasons as well. HSB and collegeman are used to people not accepting their politics, their perspectives on morals and ethics, but they had never come up against the oldest of hatreds around, anti-Semitism. We never prepared HSB for that eventuality. Honestly, while we know it abounds we didn’t think it would touch him in our little enclave this way. It seems that life has a way of teaching us lessons that we forget to teach ourselves.

Meanwhile, we have come up with a plan. HSB will go to the computer room across from the resource room so the three boys are not together during the hour. Being this is HSB's last marking period in high school, there generally isn't all that much homework for him to do anyway and I don't mind if he spends the time surfing the web and playing on his favorite websites. I know this may not be the best way to teach him to deal with the issues he confronted yesterday, but quite frankly there will be time for that in the future. I just want him removed from the situation while we work on channeling his feelings and teaching him how to deal with hatred when he confronts it. Hubby of course wants the antisemitic little creep expelled.


Just as an aside, for those that don’t think that anti-Semitism is a problem: when there was an explosion last week in a synagogue in Los Angeles, the first thought on everyone’s mind was terrorism, a bomb. It turned out to be a generator failure in the building. But the world has accepted that Jews are targets for so long that the first inclination is that this was just another manifestation of hate. Not that the world really does anything about anti-Semitism. Oh they talk a big game, with committees and studies, but in reality it is just an accepted part of life now. What does that say about the world our children are growing up in? What does it say about the accepted level of anti-Semitism in the world? I suppose for HSB and collegeman this wasn’t a bad introduction into the larger world. In retrospect it was a gentle push, so if anything really bad happens it will be less of a shock and they will be able to handle it without letting it take them over.

Update: apparently it really was a bomb at the Los Angeles synagogue and not an industrial accident.

Update #2: HSB announced this morning when taking his pills, that he forgot to take his medications yesterday. He has an organizer that shows what he is to take when. His pills from yesterday were still there. I told him that that was no excuse. There will come times in his life that he may not have his meds for any number of reasons and it is not a self-justification for bad behavior. Told him that directly too. Did not beat around the bush. Went straight for the simple succinct response. Just so there was no language confusion. Truthfully, I don't usually check his pill box, because he is so good at taking his medications, but it looks like I have to start checking again.

Between you and me I do feel really bad now, but he does need to know how to control himself no matter what the situation. Listen its not like he was punished when he got home. I decided detention and the public embarrassment were enough. Kinda glad now that I didn't take anything away. Between you and me, his inability to control himself wasn't entirely his fault, even though in the long run society would not see it that way, and I cannot let him see it that way either if he is to be successful in life.

Until, next time,


Elise





Thursday, April 7, 2011

Social Skills for Congress

Honestly I generally don't blog about politics here (OK once in awhile, I do) but I just couldn't help myself considering the on-going socially inappropriate machination going on in Congress.  I suppose since this blog is about a confluence of things that interest me greatly, the need for appropriate social skills and politics, I decided to cross-post this blog here and at Liberty's Spirit. Again how are we supposed to stress social appropriateness to our children when those that lead our nation act so infantile?

Unless you have been living under a rock you are aware that our government is about to be shut down because the republicans, democrats, independents and the one lone socialist don't seem to be able to play nice together. Everyone in Washington D.C. has to win, make their own rules and cannot under any circumstances compromise about anything (any of this sound familiar in your every day life?). I won't even mention the name calling, the finger pointing and the obnoxious bratty behavior on every side of the aisle.

Meanwhile, who is going to suffer in the end? The country that is who. However, don't fret about Congress, because they live paycheck to paycheck, Congress will pay itself during the shutdown. Its not hard to do since Congress makes the laws governing governance. They have decided that they are "essential personnel" and essential personnel still get paid in a shut down. Unfortunately the little people don't matter and they get to file for unemployment (because you don't live paycheck to paycheck)....except our soldiers overseas.

Those fighting over seas are not considered essential personnel, don't get paid and I wonder how you file for unemployment in a war zone. (I wouldn't count on there being unemployment applications on the battlefield, the government tried to send the soldiers absentee ballots for the last election and somehow the soldiers didn't get them in time to vote and have the ballots sent back. I guess no one in Washington ever heard of the internet and the concept of electronic voting). You guessed it our soldiers in battle don't get paid. In other words, their wives or husbands here holding down the fort, taking care of their families and keeping everything all together, have no money to pay bills,  but Congress in their marble halled offices, they get a paycheck.


Oh and don't think that there are any altruistic reasons that anyone in Congress is doing this for any of us. They play a game and they say what we all want to hear, but it is not about us and it is not about anyone of them standing up for the little guy. It is all about their power and the power to govern. They really don't care about any of us, if they did they would find a way to compromise just like a 5 year old learns to share and compromise in the bloc corner of their kindergarten. Listen you can't have everything and there comes a time that everyone has to give a little to get a little. Sadly noone in Congress learned anything in kindergarten.

Yes I blame the entirety of Congress, so don't get partisan on me. I won't print partisan comments and I won't engage in  bickering. If I wanted that I could just watch the news, enough of them yelling at each other on television and acting like morons. 

Anyway I think we should send them the following books, but I don't think any of them will be able to process it without years of major support and therapy.....


   





Wonder if there is a medication that guards against becoming a lamebrain? Have they invented that yet? Maybe Congress should fund the research. They say medications in conjunction with therapy does provide the best result....On the other hand, its only 18 months until we can vote the entire lot of them out.

Not sure if any of these books will help the situation in Washington, but they may help your child to grow up and NOT be like any of our exalted legislators.


Until next time,

Elise

What If It All Goes Right

Sometimes we get so bogged down in our fears and worries that we forget that things are not always as bad as we think they are. Once in awhile you really have to sit back and say:




It's just a thought.

Until next time,


Elise

Cleaning the House with a Kvetch

I just couldn't help myself with this one...Yes it has to do with cleaning the house for Passover (Pesach) but the "cry for housecleaning help" is universal. For those that don't know, before Passover, Jewish families, aka the women, clean every nook and cranny of the house looking for anything that could be considered unleavened food (gentiles generally call it "spring cleaning"). During the Passover holiday, to commemorate the Exodus from Egypt, Jews are not allowed to eat or have anything in their home with any kind of leavening ingredients, so, of course,  it becomes the womenfolk's job to rid the house of all the miscreant chametz. I do have to say that matzoh, that unleavened bread, is one of HSB's favorite foods. Don't ask me why he thinks its great. Eats it plain too...




Personally, I  just think the ineffectual mom in the video needs to have some teens with a gaming obsession and to tell them that if they don't help with the mess, they don't get games. Works for me, well as long as there are games the boys want to purchase. If no games are desired, I am all on my own, until I start to yell and nag and they help clean because they want me to shut up. Of course we then come back to the theory that they should help in the house because they live in the house but that is an issue for another day...

Until next time,


Elise

P.S. Not sure if there is significance to the maids name. Goyta can be a play on a medical condition, a lump in the thyroid, something that is harmful and uncomfortable. Or it can be a play on the  Yiddish word for non-Jewish older woman-goya. Or it can just be a silly name....By the way, I found this video on a blog by Chas Newkey-Burden called Oy Va Goy. A celebrity biographer from Britain and self-proclaimed Judeophile.