Thursday, February 28, 2013

Thursday, February 21, 2013

Purim and the Boys' Ethical Conundrum

This is a repost. That is what happens since holidays come every year.

This weekend marks the holiday of Purim. This holiday celebrates how the Jews of Persia (modern day Iran) were saved from genocide by the courage of Esther.


Note: Achashveros is also known as Xerxes.

The story goes that during the time of Xerxes..think The 300 (the battle of Thermopylae), an evil man arose in the kingdom of Persia (Iran) called Haman.

Haman was a very important councilor to King Xerxes. Haman became infuriated as he felt that the Jewish merchant Mordecai did not honor him correctly. Haman prescribed to commit genocide against all the Jews of Persia as punishment to regain his honor.

Mordecai's niece, Esther, was married to Xerxes. Upon learning of the plot Mordecai implored Esther to intervene with her husband to stop the slaughter.  Esther spent the day before Purim (today) fasting and asking for God's help. She later went to Xerxes and told him of Haman's plot. Xerxes in turn became so enraged at Haman that not only did he prevent the slaughter of the Jewish people he executed Haman.

So the Jews celebrate the holiday of Purim every year to remember once again how we came a hair's breath away from annihilation yet somehow triumphed.

The holiday is characterized by eating hamantaschen, a special three-cornered cookie with all kinds of fillings, making lots and lots of noise at the mention of Haman's name and dressing up in costume. We eat sweets because it is a joyous celebration. We make noise at the mention of Haman's name so that history drowns out such evil. The reason we wear costumes is not to scare away the evil (as with Halloween), but to remind ourselves that no matter what we do, no matter where we go, just because we do not see  or take notice of God's presence, does not mean He is not there. God is the hidden miracle of Purim, as who we are is hidden behind the costumes.

And yes the boys found an Ethical Conundrum, read the links below:

Meanwhile,  I have written two past posts about the meaning of Purim, the ethical conundrum here and the answer here. Of course how it all relates to the boys and autism is also a large part of the discussion.


Saturday, February 16, 2013

I Guess I'm Not Normal...

As a follow-up to my last post (here), we spoke with the disability director, who spoke with the professor. The director did tell me that the professor does seem a little scattered and could not keep one train of thought. She would say one thing and then either countermand what she previously said about CM1 or change her story entirely. But this is what we gleaned in the end: that this professor seems to have issues with the fact that CM1 does not agree with her and continues to argue about a topic and it annoys the other students (truthfully CM1 doesn't ask too many questions and most of the time says nothing in class), that CM1 was anxious about a paper that has to be written which is open-ended and that he did yell at her in class. And yes she is horribly ignorant about aspergers and anxiety issues. And yes, I think the news media has added to her stupidity because the things she said are the sound bites you consistently heard after Newtown.

Needlesstosay, the issue became how are we going to protect my son so that he can graduate in May and go on to the next stage of his life? I was adamant that I didn't want anyone in the class with him but the hubby, being the Wise Old Sage that he is, said forget it. Don't worry about September worry about today. If the professor has a bug up her ass about CM1, one misstep by him, then she will file a disciplinary complaint against him and he will not be able to graduate. Also if she has a bug up her ass about CM1 then we need another pair of eyes in that class to make sure she doesn't fabricate issues or turn something into a hullaballoo when its not.

So we spoke with the para who at the time of CM1's class is in class with CM2 and he said that he can work it out. CM2 is doing well in his class and enjoying himself. The para will go to CM1's class and see if he can find support for CM2 from a friend or even another person in the class for the time being. There are many education majors in this particular class that he knows and they can help CM2 if he gets confused. So we will see what happens on Monday.

In the meantime, I left a message for the disability director actually asking if she knows anyone who can help out too. Didn't hear from her, but I suppose I will on Monday. I didn't tell her that the para will be with CM1 on Monday but I will when I hear from her.

The tricky issue was telling CM1 that he was now going to have support in the class from the para again. I asked him what the para would do for him anyway. He told me "nothing really." He told me that the para just sits there as a backup if CM1 needs some info, but that CM1 tended to take care of himself. So the reality is that CM1 is capable of taking care of himself, he just became overwhelmed for some reason by the assignment. The professor didn't explain what she wanted clearly enough. Yes she didn't like getting yelled at (I wouldn't have either) and that CM1 did have a mini-meltdown (even though it was under his breath the class did hear it).

So I told CM1. His response was, "Well I guess I'm not normal." Could you just feel your heart drop at that moment.

"Of course you are normal," I said, "You just have some issues that you still need to work on, that is all."

"OK, I'm sorry, that was a stupid thing for me to say," he answered.

I told him that normal is also relative. That everyone has issues and problems, that his are just more out in the open that is all. I remember this conversation with him from 4th grade too when we finally told him he had aspergers. He didn't say he wasn't normal back then, sadly in some ways I suppose he has grown up and seen some more of the world. CM1 is extraordinarily intelligent and he understands that a 22 year old shouldn't need a babysitter in class and that there are parts of life he is missing out on.

After our little talk CM1 went on with his day and was quite happy actually. He worked on that idiotic paper that is causing all the fuss and watched his videos. CM2 made tacos for dinner and we had a fun time at dinner. Life went on for CM1 with no problem.

As for me, my heart still hurts....


Thursday, February 14, 2013

The Trick is to NOT be the Asshole....

Mom's Rule: Wherever you go in life there will always be one asshole in the room. The trick in life is to make sure that you are NOT the asshole....

I can't tell you how often I have stressed that rule to the boys. But every once in awhile they forget Mom's Rule. Case in point, whenever anxiety gets the better of CM1.

Right now this is a hard time for CM1. He is beginning that transition from college into graduate school. The reality of leaving a known environment and heading into an arena where he knows no one, they don't know him and the environment is totally foreign seems frightening. The questions I am sure are familiar...

Will there be nice professors? Will I be able to find my way around easy? Will the college grant me accommodations? Will the other students be nice to me? Will I maybe make a friend this time? Will I be academically successful? Will I enjoy what I do? Will I have a future?

I know that these questions are the same for NTs and aspergeans alike. The difference is that for the aspergean, the anxiety these questions produce can be overwhelming at times. Furthermore, CM1 is having issues with his graduate school application essay and his senior portfolio just got sent back with further questions.

In other words, the protfolio has not been accepted and he has some more work to do on the project. (The portfolio is not to be confused with his senior thesis, which was accepted with a grade of A-.) The changes to the portfolio, a discussion of his academic performance including papers and essays, are minor and not truly time consuming. It is simply just one more bump in the road towards his goal of graduation. Meanwhile, he cannot graduate without an accepted portfolio, no matter his gradepoint average (CM1's 3.45).

He is also having issues with the graduate school application essay because it asks him , "How does he feel and why does he want to go to this one particular program..." You can question CM1 about historical facts and figures and ideas. He can analyze history and work on computer science with the best of them. But do not under any circumstances ask him to explain his feelings. The process of self-discovery for him, from understanding his own emotions, to being able to put these emotions on paper is just not going to happen without a huge internal struggle. It in fact, may never happen and editing his essay is a struggle. But as with everything he does, he is persevering.

You would also think that by the time they are young adults that some of these issues of anxiety , transitioning and executive functioning glitches, would have found a way to resolve themselves, but unfortunately not  always.  At least not without some reminding of what self-help to employ and what is and is not socially appropriate in a classroom. The problem becomes when curve-balls are thrown and changes are made, then CM1 gets overwhelmed. It shows in his anxiety and his anxiety shows itself by a raised voice and lack of comportment.  In other words, a mini-meltdown. Not a physical meltdown by any means, but inappropriate language (said under his breath not directed at any one person but still audible) and a raised voice to the professor.

CM1 is dealing with many new issues this semester on top of the transition questions too. He is for the first time, completely alone in a classroom, dependent on no one but himself and it is odd for him. He told the para that it is hard to not have someone else to rely upon. But the truth of the matter is, it had to happen some day. He is a 22 year old youngman, who needs to be allowed to grow up. While he could spend his life having someone with him, there has to come a time, when he is no longer infantilized and that he is allowed to be an adult. He needs to learn how to be independent and self-reliant. Even if it is only in a classroom. The class he is taking is a basic polisci class and one that should not be a problem for him. But with everything going on, he feels lost. He is making more out of this course then is necessary too.

Hopefully after today's mini-meltdown in class, CM1 would have come to realize that he cannot let his anxiety get the better of him. Hubby, that Wise Old Sage, had a nice talk with him about what happened and how he could have handled it better. They discussed how CM1 could have handled the change in schedule and the fact that he had missed the schedule change from the week before. How his lack of preparedness did not effect his being in class and listening to the lecture. That all it meant is that he would have to read the article when he came home from school.

I know that part of the issue is that CM1 likes to be on top of his work. He needs to be ahead and have a total handle on the class discussion. But as in life, sometimes "shit happens" and you need to be able to handle the changes as you are confronted with them. It is not good to act out and embarrass yourself, it is not cool to be the asshole in the room.

Temple Grandin tells a story that after she started working one day there was a change in the type of cookies in the snack room. This elicited a meltdown on her part. She later recognized that if she was going to be successful in the world, she had to learn how to handle these little changes.

It is the little changes, coupled with the huge upcoming unknowns,  that gets CM1. Ironically it is the big changes, like his grandfather dying, that CM1 handled with aplomb. When he can rationalize his reality then situations seem to go well. But when he is at the mercy of others and their schedule, whims and priorities, that is what CM1 finds the hardest to assimilate.

So hopefully after fully apologizing to the professor for his behavior, which he did vehemently after class (I am told), and having a talking to and with the hubby, and maybe going to see the disability director (I left her a peremptory voice mail) CM1 will be able to handle the issues and reality of the coming weeks. Truth is he has no choice in the matter. He has to behave. He cannot meltdown. He must find a way to keep his anxiety in check. He cannot allow his anxiety to ruin the class for others as well. Hubby told CM1 to keep in mind his obligation to those around him and to not interfere with their education. (Hubby made an important point to CM1: Less than three months from graduation, after five years of hard work, he cannot allow his anxiety to doom his future.)

Meanwhile in his Java class, CM1 figured out a problem in such an extraordinary manner that the professor seemed quite impressed. CM1 has a great future ahead of him. In the end, hopefully all today was, was just another teachable moment on his road less traveled by.

The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.

Friday, February 1, 2013

Don't Let Advocacy Label Your Child or You

We as parents never ever questioned our ability to raise our children until the day we heard the word "autism." Unsure of what to do we reached out into the vastness of the Internet to research, explore and discover answers to the new unknowns in our child's life. But we forgot one important thing: WE as the parent still know best how to raise our children. The decisions and actions we take come from that one place that no one else has...our souls and that gives us the strength of a thousand Samsons.

You know what too..Quite frankly it is also no more anyone elses' business how we chose to raise our children because they are autistic then if they were neurotypical. I do not know why so many parents forget that. Why are parents so afraid? I don't remember being that afraid when CM1 was first diagnosed and I am definitely not afraid now. I remember sitting in the doctor's office hearing the word autism and vowing that my son was going to have a life. No one was gong to tell me he can't and no one was going to take his future from him. I also didn't think I had to ask an autistic person for permission on how to raise my child and I still don't. I didn't think I had to abide by the unwritten rules of any national autism advocacy organization to raise my child and I still don't.

Today's world is a rather odd as compared to when I began in the world of autism. I have never come across so many people who are so easily offended simply because you disagree with them or think so much of themselves that they are the only one true voice of a cause. Well, yes I have, but whatever that cause was it didn't have such a direct effect on my children's future, so it didn't really matter all that much in the first place.

Now for the record:  if a self-advocate explains to you how it feels when you yell at someone with auditory processing disorder, it does not mean they then get to tell you how to run your child's life. If you think that some accommodations are necessary it doesn't necessarily follow that you think the entirely of humanity has to change to suit some little effect of your child's life. If you think it might be a good idea to pace out a vaccine schedule, it doesn't mean you are a vaccine-truther. If you walk for Autism Speaks it doesn't mean that you are only interested in finding a "cure" for autism and ignore that self-advocates have a right to a say in their own future. If you believe that self-advocates have a right to define their own future, it doesn't mean that you think that finding a "cure" for autism is genocide. If you decide to advocate against the use of the "Rword" it doesn't mean that some autism advocate can tell you what words are and are not politically correct. I have never met so many people with such low self-esteem that they need to denigrate others who are fighting for the same cause in order to make themselves feel important or believe that their way is the right way. How does anyone think they are ever going to get anything done, ever?

Personally I don't know what happened in the last two decades while my boys were growing up. I used to think that all this talk about autism and the advent of all these groups was a good thing for our children. Now I am not so sure. While advocacy is always good, it becomes most difficult when those that are supposed to be the most helpful stand in your way. When those that are supposed to be the most helpful demand one standard definition and one standard ideal. No one can define another human being and no advocate on any level, no matter who they are has the right to tell the world, who my boys are. That is a right they reserve for themselves and themselves alone. I didn't defy  doctors and teachers for the past twenty years to hand over my boys' right of self-determination to anyone but themselves.

Choices are not all or nothing. Life is like the old style Chinese menu. You can pick some from column A and some from column B. Sometimes you get a choice of soup and other times eggroll. But in the end just maybe you get a great fortune in your cookie. We pick and choose and grow and discover what works and what doesn't. We learn. We explore. We try new things. We become adventurous. For a successful life and successful advocacy you cannot stick to one theme or idea. You need to incorporate everything into your worldview and see how it applies to yours.

So I decided...I listen to myself, and the hubby, about how to push the boys and where to push them. We look at the world as it is and say how to we get them to XYZ and at the same time, make sure that we can change the world ever so slightly. Life is not an all or nothing game. Life is game-plan A, then  B, C, and sometimes all the way to Z.  But that's the real world.  That's all you need to know as a parent of an autistic child.

Now go be secure in your parenting.....remember it comes from your soul and no one elses.