Sunday, August 29, 2010

New Year, New Issues

The new school year is upon us and after this year, we will no longer be a part of any school system. It is our last year and HSB is a senior. He is also not so happy or truly unhappy. At this moment I am not so sure he understands what a lot of that means. But I know what that means for us and having two special needs children outside the system of support is not something to cherish. Oh yeah they are growing up and oh yeah they are turning into young men, and growth and development are wonderful, but when you are totally on your own and have no idea if what you are doing is the correct approach it's not always an easy thing to deal with.


Hubby and I were just thinking about programs and support. While there are a myriad of programs for the truly intellectually disabled in our state, those programs that claim to help persons with aspergers just really don’t’ exist and in this time of economic trauma I am not so sure they ever will. So we go into our next level of growth and development for the boys hoping beyond hope that something will kick in and that they will start to get the message about behavior and interaction. We really are on our own now.

The next couple of months for HSB will be spent filling out college admission applications and writing essays and hoping that they will accept him in the school where we think he will do the best. For collegeman the next year will be spent trying to figure out what he wants with his life and perhaps what kind of career he wants to have. We have always known that graduate school is important in life and that a good education is essential to a happy life as well, but you need to have a plan and collegeman’s plan went up in smoke recently.

Yes he still wants to save the world, but he is not sure how he will do that now. We have to investigate and try to fashion out a career for him that includes knowing that he has aspergers. I know that I have never allowed aspergers to get in his way. I have never allowed it to be an excuse for to succeeding, but at the same time there are careers that he just will not fit into…prosecutor is one of them, even though he had wanted to be an ADA for a long time. With auditory processing and language retrieval issues, the pace of a court room will not be the best thing for him. But law may not be what he wants anymore anyway. Justice seems to be his issue and not law. The two really are not necessarily the same thing.

Collegeman has always been interested in forensics and crime solving and security, maybe a career in law enforcement in some way. There are programs in criminal justice and forensic technology that he could look into, as long as it doesn’t include math and physics. I just wish there was something that could help us, help him. I also don’t want to push him into a career that will make him unhappy one day. That will be the problem. So there will be a lot of exploring and thinking and trying to figure out a path for him. I know that it is not too different than most young people his age; we just have one added element to the puzzle as usual.

HSB has absolutely no idea what he wants to do beyond video games. We have tried to get him to take a computer programming course, but he just doesn’t want to. He likes film and acting. If that is what makes him happy he can have a job in the arts. But I am also not so sure that that would be a good choice anymore than collegeman’s thought to be an ADA. The film industry is so hard and meanly competitive and so social it may cause him undue problems. We will have to see. Maybe there will be something in college that strikes his fancy and he may turn 180 degrees and go in another direction all together. Who knows, he really is still young and does have a few years to go before he has to decide.

So the reality is that we are up in the air with the boys at the moment. We are totally confused as to their next step. On top of directional issues, we are also reevaluating all the therapies once again. We are trying to figure out who is doing what and how that actually helps them too.

Even their medications are being reevaluated. This summer HSB has had a change of meds and quite frankly doesn’t seem as sad as he did during the last school year. But school hasn’t started and we have no idea how he will react once it does. He may just be happy and content right now because he doesn’t have to do school work. But when the work ratchets itself up, I have no idea what will happen. He did finish on a good note at the end of last year. HSB always seems to pull it off in the last quarter but it’s very painful before he gets there. In the meantime we are trying to fix his schedule so he does have a minimum of issues and that he may actually enjoy some of his senior year classes. Yes, that is one reason I am not sleeping.

On another note, Collegeman is going in for a new video EEG later this month. For some reason he had had two seizures within a week of each other after not having any for months and the doctor wants to see if something has changed in his brain chemistry. So we will see what they will come up with next after the results of the test are in. There is that nagging question, "Will they want to change up meds on him and try something new." Personally this is the part that I hate. I know it’s the part that every parent hates. The guinea pig part.

I have come to a conclusion as far as therapists and doctors and support systems are concerned: no one has any answers. They do play a good game talking like they do, but in reality they are as lost as some of us at times. The trick is to make sure that you find someone who acknowledges the fact that they don’t know everything and doesn’t blame your child when the therapies don't propel your child into the next developmental level. You want to make sure that they never say your child can't...you need to make sure that they will fight for your child instead of throwing up their hands and deciding that your child has no future. The reality is that all the doctors, therapists, and support personnel can do is try to figure out what works or doesn’t work for your child and I suppose that is all we can do too. All we can do is try and see what works and what doesn’t work; then evaluate, reevaluate and plan strategies using new ideas and new programs and new ways of doing things.

So we shall see what this year holds for everyone. Trying not to hold my breath…not succeeding right now.

Until next time,

Elise

Monday, August 23, 2010

The Guide to the Perplexed

I think that a major issue that arises when you are dealing with the issues that surround your child and their autism is one of great guilt. We as parents feel either, because we knew something was wrong and didn’t pursue it aggressively enough, or that’s what we tell our selves now, or the idea that along with those beautiful blue eyes we have genetically passed along autism to our children, we harmed our children. Like we were hoping in the recesses of our minds, that we would screw with our children’s brains, beyond the normal stuff that any grown person complains to a psychologist about. You know, we parents have a way of flagellating ourselves. Personally I think if they made it an Olympic sport, the parents of special needs children would win in that category hands down every time.


Guilt in and of itself is as natural as breathing.They don’t even need to hand out a manual about it. I think the moment that you hold that very tiny person in your arms on the delivery table, or in my case at the moment of conception, we have an innate ability to beat ourselves up about the most miniscule thing when it comes to our children. Some say it’s the Jewish mother syndrome, or the Italian mother syndrome, or the “put your ethnicity here” syndrome. Ethnicity be damned. It’s called loving your child and wanting what’s best for them, so of course, it’s your entire fault and the child didn’t even need a Freudian analyst to tell them that, the realization just came naturally. (You do know that this is all in jest. I don’t want to bring back in any way shape or form the horrible disturbed views of Bettelheim.)

I was not sure what to call this constant state that we as parents of special needs children happen to live under. But then I was thinking about my state of mind and it hit me, I am perplexed. I actually think that that is a great word. I have no answers and only questions and no real rational reason why something like this has happened to my children. So I am perplexed. I get sad. I get depressed. I get annoyed. I get angry. But most of all I am perplexed.

I am reminded of the philosophical tome called The Guide to the Perplexed, written by Moses Maimonides, whom we affectionately nicknamed the Rambam. Maimonides was a 12th century rabbi who lived in Cordoba Spain during the rule of the Moors, until he had to flee for his life because he refused to convert to Islam. He eventually settled in Cairo under the largess of the Islamic ruler of the time, where he became one of the great men of his age.He is considered the father of modern philosophy. His book incorporated not only Torah, but the works of Aristotle and Plato. He discussed the creation of the universe and the sense of humanity. Who we are, our purpose and what this bodes for our future and our obligations during our lifetime.

Needless to say, at the time that The Guide to the Perplexed was made public it annoyed a great many people. Interestingly it didn’t annoy the Moslem rulers so much as it did the Jews themselves. Personally I think the other rabbis were jealous that they not only didn’t write The Guide to the Perplexed, but that they weren’t even in Maimonides’ league. The Rambam basically become King of the Jews for his time (no offense to Christians who think of Jesus as the King of the Jews, but since we Jews, don’t adhere to that religious doctrine, we are still in search of our King and quite frankly every Jew wants to be appointed King. Of course since we live in a democratic age, every Jew wants to be the President. Well as long as there are no polls, pundits and 24 hour news shows.)

I suppose the issues that the Rambam faced and discussed in his brilliant work of philosophy is something that we parents face on a daily basis. We try to answer the unanswerable I think. Perhaps in many ways there is no reason for what happened. While I am not one to believe in coincidence, and I don’t, perhaps sometimes bad things just happen to good people. We search for reason and there is none. In our house, when bad things happen the boys just say that God is a moron.

That is of course my own fault, I let them read and learn about the Holocaust and we celebrate Passover every year. Now Collegeman not being pro-God to begin with was not any more enamored of God after he studied in full measure the Holocaust. In fact I would have to say that his complete and utter dislike and disinterest in God cannot get any more profound. But interestingly enough the fact that God did not help the Jews during the Holocaust really bothers him. I guess he doesn’t see the irony in the fact that he is an avowed atheist but is mad at God. HSB just sums it up in a nice and neat little ball, as I said before; the reason God helped the Jews escape bondage in Egypt and did not help them during the Holocaust was because God is an asshole.

Truthfully it seems to mollify them both, and for their own reasons. Which is fine in my book. It takes away that perplexed feeling that tends to bother us so much. Not sure that was what Maimonides had in mind when he wrote his philosophy. Not sure that he was not trying to answer the profound age old questions and still maintain a respect for God. But then again Maimonides never met collegeman and HSB.

I think in many ways we can learn from the boys. We as parents are perplexed about what to do and what direction to take. There is so much out there in ways of information and competing ideologies when it comes to autism. Heck I just got banned from a Facebook group because I advocate medication for persons with autism. Not going to name the group, not sure how many of us really have too much time for crazy anyway. (But you can DM me on twitter if you like and I will tell you)

The truth is that one major way we can stop being perplexed is for us to stop blaming ourselves for everything. We need to stop beating ourselves up. If we didn’t fight hard enough at some point, well, our children are still here and have the rest of their lives ahead of them. You can help them with the rest of that life. Will it take time? Of course it will take time, anything worthwhile takes time. But it doesn’t matter what we did before it only matters what we do from this day forward. There is no need to be perplexed anymore. Look ahead and not back. Stop beating yourself up.


Also unless you really have a lot of time don’t even start The Guide for the Perplexed, I actually recommend The Hitchhikers Guide to the Galaxy, instead.HSB is rereading that for the umpteenth time. I think it offers the same answers that Maimonides book does and in a much more succinct and modern way, and honestly, you don’t end up with a headache. I also think in many ways you end up with the same answers. Your future is all up to you, nothing perplexing about that. Of course HSB does need to use the number 42 when applicable, just in case.

Until next time,

Elise

P.S. For those who never read The Hitchhikers Guide, the answer to "life, the universe and everything" is the number 42.

Friday, August 20, 2010

Do as I Say, Not as I Do

So apparently I can talk a big game, but I can’t follow my own rules. I constantly tell parents of special needs children that they need to take care of themselves. That if they don’t make themselves a priority they will not be able to take care of their children. Well, I am an idiot. I had not been feeling well this summer and I just chalked it up to how summer can negatively affect those with lupus. Now technically I haven’t officially been diagnosed with lupus, but with connective tissue disease probably lupus. However, I am on a lupus medication and it makes me feel better when I take it, so the doctor says it’s probably lupus, yet that my case is so mild that right now I have nothing to really worry about.(Thank heaven for small favors-right!)


Well I have felt like crap all summer. I have had no energy, I have freckled even when I am not in the sun, I have aches and pains and muscle fatigue and quite frankly my PMS is out of control. I thought nothing of it really. We have had so much stress here lately what with trying to figure out how the new disability director will handle collegeman’s case, to HSB and all of his issues, and of course that wonderful economy we are all dealing with (trying to get money out of the 401K to pay for all the medical bills, as it is the only money we have left in the world), that I just didn’t think about what and how I was feeling. I just accepted it as it was. Didn’t think about it until yesterday.

You know you are married to a good man when…he finally gets up the nerve to tell you that you look awful. In fact I figure I must really look a sight for him to actually say anything. He is so sweet, he actually tried to soften the blow with, “I love you no matter what, but you really don’t look good. But if that is what makes you happy…” You know for them to actually see how bad you look that is not a good thing, at least for hubby. He thinks I look good in mud and in a burlap dress. So by the time he notices that I am not myself, I am in real trouble.

I told him that I just don’t feel well all the time and he wanted me to go to the doctor. I didn’t think I needed a doctor visit. I know if it was the boys they would be there yesterday, but with me it’s different. What made me think of my lupus meds is that the bottle is sitting right there on the kitchen counter and I happened to look at the date on the label. It said May. Holy Cow. I didn’t think that could be right, so I called up the pharmacy and yes they said that May was the last time I filled the script. Then she yelled at me. The pharmacist gave me the lecture I tend to give every parent that reads my blog. She insisted I come get the meds then and there. I assured her that I had just taken my meds, which I had, and that I would be in later that day to get the bottle. She then told me to organize my pills like I do for the boys so I would know and remember that I had not taken my pills.

I know that I would see the bottle of meds every day several times a day as I did the dishes or cooked in the kitchen. I know that I thought to myself, time to take my meds, but apparently I would get sidetracked and never did take them, but somehow in the back of my mind I had done what I was supposed to. Oy Vey as they say in the “old country.”

Anyway, I just made myself a promise. I am going to be 50 in one month. I have given myself that month to get myself back on the straight and narrow. Take my meds, do better on my diet and exercise like I am supposed to. But I know I need to go very slowly or I will blow it. I did buy P90X for the family and I will use those DVDs to help. Interestingly I can do the exercises without too much trouble so maybe I need to raise the free-weight level, but that will happen in a few weeks not right away. Right now I am going to concentrate on getting my cardio level back up and doing my sit-ups like I used to.

Meanwhile on another front, just made an appointment to meet the disability coordinator at college for collegeman and the disability coordinator and vice principal at the highschool for HSB. I guess my fifteen minutes of figuratively smacking myself in the head is over, now its time to get back to work.

Until next time,

Elise

Saturday, August 14, 2010

Obsessiveness is not Just for the Children

So anyone following me on facebook and twitter today followed my angst about all the nasty comments to a blog that an autism website reposted. I spent the day answering comments and basically defending myself to a bunch of very entitled children most of whom did not have autism but decided that they know everything there is to know about life. Their gist was that we should respect what they do, we adults are idiots and we need to mind our own business. I have to tell you that I feel like a complete ass right now.


I am trying to figure out why I even cared what these children thought or why I even bothered to engage with them. Perhaps I feel that it is important for them to understand how the world works and that you can’t willy-nilly lead your life. It was almost like I was talking to my own children, and yes they can give me a hard time too. I thought I could talk some sense into the on line commentors, but to no avail.The difference here, as opposed to dealing with my children, was that eventually these comments became downright nasty and I did ask for the post to be removed. Actually as this went to "press" I received an email that the post would be removed. The administrator mentioned how the comments were rather eye opening for all of us. Scarey how the younger generation thinks at times.

I suppose I need to ask myself why I did what I did and why it actually mattered. I have no idea. I wonder if in the end it is just the nature of who I have become as an autism parent that I don’t give up the fight so easily, or perhaps it is because I don’t’ give up the fight so easy that I fight as an autism mom. It’s the proverbial chicken or the egg. But even more important than answering ancient rhetorical questions is to figure out how to put your idiosyncrasies to work for yourself and for your children.

Well if anything I am definitely obsessive. When I was younger and hubby and I just met everything was about Israel and foreign policy and politics. I actually drove everyone to distraction. In fact hubby said that it was truly grating. It was all I talked about and it was all I thought about. Interesting to say the least. He said after all these years these perspectives have changed and he is really glad that I have a varied list of topics with which I can draw from in order to have a conversation with people. Yes, I know what you are thinking, aspie-like, very aspie-like. Well the acorn does not fall far from the tree and I think if we examined ourselves closely we would probably find quite a lot of traits that our children have inherited. I mean these traits did come from somewhere.

Meanwhile the question becomes how can we use these traits to help our children? I have used them to live and breathe autism for the last 15 years. I have studied and read and joined in groups where I can support my children and make sure that they have every chance at the future of their choice. I think it’s a matter of being able to harness what is inside of us and use it for good, instead of evil. In many instances we do allow our nature to overtake us and we get caught up in things as they spiral out of control. Sometimes we have no way to put on the breaks and that can be very overwhelming.

By the way, just so everyone knows, you are allowed to be overwhelmed. You are allowed to feel lost. You are allowed to feel out of your depth. You are allowed to be frightened. But what you are not allowed to do, for the sake of your children, is to ever give up. Now how can you accomplish this:

ONE. You need a good network of friends. Now these friends do not have to be someone you meet for coffee at the local Starbucks. It can be some wonderful relationships with persons you met on line. Truthfully today when I was obsessing about nasty commentors, I heard from some facebook and twitter friends and they helped me dial it back.

TWO. Don’t forget yourself when it comes to therapy. We deal with so much stress that it doesn’t go away just because we ignore it. I say embrace it, understand it and deal with it as best you can. Seek help and don’t think medication doesn’t work for you if it works for your children. Don’t be afraid to add some aspects of a gluten free diet in for you as well. It is known to help with anxiety and affects in a positive way heart disease and blood pressure.

I have to tell everyone, we have gone on a modified gluten-free diet and I feel different, never mind the children. In fact this past week, when I broke down and bought a regular chocolate cake, I definitely could feel an internal change. Now I have also noticed a difference in collegeman, he was much calmer during his class especially during exam time, but not so much HSB, no real change there. Everyone is different, and we will have to see what happens for all of us in the future.

THREE. Take care of yourself. From diet, to exercise to even buying yourself that little special present you wanted every so often. It is important to remember that you are also a person. Read an earlier post on this topic here.

FOUR. Lastly, don’t’ be afraid to say that something is not working out properly for you and just stop doing it. If it means not going to the support meetings, changing friends or even cutting off a website or unfriending people on facebook it is something you are allowed to do for yourself. (Of course this does not mean that anyone is allowed to unfriend me on facebook.)

Remember that the definition of insanity is doing the same thing over and over again and expecting different results. Let’s all try to remain sane. At least, it’s a good use for my obsessive personality.

Until next time,

Elise

Thursday, August 12, 2010

When the Days of Awe Come Early

The Jewish New Year also referred to as the Days of Awe, begin on the evening of September 8. However, at times, events add themselves to the questions of purpose and being during different times of the year and for different reasons. Now is one of those times.


How many of us have actually ever witnessed a death? We live and we all know that eventually we will all die. But how many of us are truly confronted with our own mortality way before its our own time? That happened to me yesterday. Oh I have buried family and persons who were important in my life to be sure, but until yesterday I had never actually witnessed death. Yesterday, as I drove along a roadway a beautiful yellow bird was sucked into the wheel base of an oncoming car. I doubt the driver of the car even saw the bird for it was flying so low to the ground. The bird was crushed by the wheels. Its life was gone. But everything continued unabated. There was no choir of lamentations, no sermon, and no message from heaven. The world continued on, except for me. I pulled over and recited Kaddish, the Jewish prayer for the dead.



While Kaddish extols the greatness of God, it reminds us of the continuity of life even in the wake of death. Life is celebrated even at a funeral. Life is the bedrock of our existence. We cherish life and we cherish our children’s lives. We seek to make better what we are given and strive constantly to secure for ourselves and our posterity the truth of life’s purpose.

In a few weeks the Jewish community will enter the time of the year called the Days of Awe. It is a religious period beginning with the holiday of Rosh Hashanah (Jewish New Year) culminating ten days later with Yom Kippur (Day of Atonement). During this period we challenge ourselves to find ways to promise to live more in the ways that God would have wanted. There are special meals, symbols and prayers. It is a tactile actualization of our wishes and our hopes. But even so, it is much more than rituals and tradition, it is all about our soul.

There is a story about a great Rabbi Hillel. He was challenged once by a recalcitrant student about what is the purpose of the Torah. Can you teach me the Torah, he was asked while I stand on one foot? Other Rabbis had beaten the upstart student for his impudence. But Hillel thought and quietly told the student, that the purpose of the Torah is to treat others as you would be treated. That the rest is merely study, so he should now go study. So we review our world, ask god for forgiveness and vow to do what is right.

Now many also misunderstand the purpose of these ten holy days. We are exhorted to ask God for forgiveness for all sins committed against God, but for all sins and crimes, committed against our fellow man we are required to ask the injured for forgiveness. Perhaps that is why the nation of Israel is so ready to investigate itself (unlike her enemies and even some of her friends) and to find out just what it did or did not do right in any given situation. For it is just how a Jewish person is raised. We challenge ourselves to be as good as we can be and then we challenge ourselves to be even better.

We are required to pay to society a debt for our failure to live by the rule of law, ethics or morals. No amount of praying, no pat on the head from your rabbi, will remove a sin that you committed against a fellow human being without asking forgiveness from the injured. It is perhaps one of the hardest parts of being a Jew. To open yourself up to other persons, to allow ourselves to be so vulnerable, is not the way human beings like to function. But that is what is required, so what we also pray for is the strength to ask someone for forgiveness.

Rosh Hashanah and Yom Kippur are not days of hoopla and fireworks. Yet they are the most beautiful of holidays. It is a quest to find what is better in ourselves. It is reflective, contemplative and soul searching. It is a time to review our preferences, our wants, and our desires. We rethink our belief systems and restructure our priorities. We realize the tenuousness of life and how fragile it all happens to be. We pray that God will hear our exhortations and he will inscribe us in the Book of Life (Sefer HaChaim) with a good year.

Another interesting aspect of the Jewish New Year is the Torah portion that is read. We read every year, about Abraham’s banishment of Hagar and Ishmael. For eons Jews have debated not only the meaning of this story, for every story in the Bible has a meaning beyond the obvious, but its purpose and why it is included in the New Year liturgy. What does it mean? What can it teach us? Where was God and why did he allow this? How human are the leaders that we revere? How could a man, Abraham, so beloved of God, be so weak in the face of his wife, Sarah's, jealousy and banish from his home, one of his sons (the remaining son being Isaac) without any thought or care (some rabbis go so far to excuse it by saying Ishmael was a grown man so it was ok)? The sheer embarrassment within the community to an action taken over 3500 years ago still baffles, and appalls us and causes shame. How could Abraham have not foreseen any consequences to his actions? While the sons came back together to bury their father in Hebron at the Cave of the Machpelah, what of their descendents? Perhaps that is the lesson of the banishment of Ishmael. Consequences to actions are farther reaching than we might think. So before you act, really think through what you are about to do and who you are going to hurt or help, if the case may be.

So yesterday I said Kaddish for a beautiful little yellow bird who lost its life in a senseless and useless accident. My Days of Awe have come early. The Sefer HaChaim for this year has not yet closed but the new one calls out to me. Sometimes God’s messages are clear and sometimes you need a real smackdown. But for now I need to figure out why that poor bird had to die so that I would remember how flawed I am and how human all of us happen to be.



(OK the wrong holiday, this song is from the Prince of Egypt which is about Passover, but I thought it fit the post. The hebrew extols the greatness of God.)

So  happy Jewish New Year, albiet early, but it seems that wishing everyone  Shana Tovah, hebrew for Happy New Year, early is now in vogue, even Shaq has gotten into the act.

Until next time,


Elise

Tuesday, August 10, 2010

A Rose By Any Other Name: The Right to Define Oneself

There is something that I am going to address that seems to be a problem within the autism community, no I am not talking about the vaccine issue. It is about the mindblindness of the high functioning autism community. I am not referring to the mindblindness in the traditional sense of the inability of an autistic person to read someone else’s persona, but the idea that so many in the hfa autistic community cannot see beyond what they perceive to be the way to approach and function in life. It is an interesting development that I have come across recently and it truly seems to be starting to be a problem. You can actually go to the facebook page of the Autism Women’s Network to read a discussion between myself and some members of the Network in response to a blog I wrote that had been posted by AWN. Many resented the fact that I wrote that the boys are more than their autism and that somehow it meant that their autism made them less. I tried to explain to them that it did not make them less but it was not how they were defined. My explanations did not get through unfortunately and were summarily rejected.


Here’s the interesting thing about that discussion, while I did not take offense at how these individuals choose to see themselves, they took offense that I did not raise the boys to view the world as they did. They took offense that I did not raise the boys to be “autism pioneers” and that I taught the boys to be involved in the society at large. They resented the fact that I don’t consider autism the deciding factor in how I teach the boys to view their lives and who they are. The truth is, and with all due respect to them and those who agree with them, that is how you perceive the world. You are entitled to perceive the world anyway that you would like. You can call yourself and attach yourself to any definition of your person that you would like. But you do not have a right to tell me and my boys how they are to perceive themselves.

The reality is that as the boys’ parent I am entitled to raise them with the perspective that I think is appropriate just like any parent is entitled to do for their children. If I do not want the boys to consider their autism a major part of who they are but just understand that it is a small part of theirselves, then that is my right. If I want the boys to consider themselves human beings first and foremost and not autistic human beings then that is also my right. Granted when the boys are fully grown and live their own lives, they will decide who they are and no one, including myself, will be able to decide these things for them. But as they grow it is my job to make sure that they understand that they are their gifts as well as their issues and that these characteristics are who they are. But issues and gifts are not mutually exclusive to each other and that it will neither prevent nor relieve them of the responsibility of trying to make themselves happy and lead a successful life.

Now by successful I also do not mean financially only. Yes, the boys need to be able to financially provide for themselves. I am also hoping that someday they find a partner and build a family. They need to be able to provide for that family and if it is only a life partner then they should know how to care for each other. Also success means finding a career or purpose in life that is fulfilling. The boys have the right to decide in what direction they want their life to go and what actually makes them happy.

What I found so disturbing in the discourse was that many of the persons with whom I corresponded did not seem to be able to view the world as I see it. They decided that everything they do is because of their autism and they refer to themselves as “autistic X.” They also reject the idea of what is a human being and felt that a new paradigm needs to be established. They also challenged my thought process because I choose to raise my children with a religious background and I assume that is because they reject religion. Again, the boys are not just one thing and one thing only. They are the culmination of eons of genetic evolution and what they are able to do is because of the confluence of all of their genes not just the supposed 27 that may have something to do with autism. While their autism may give them a different perspective when it comes to their artwork, it is not what made them artists. Their artistic ability comes from a genetic predisposition to art which has been handed down through the generations. Just as their intellect comes not from their autism, but is again handed down through eons of evolution.

On the other hand their autism is what gives them the ability to think outside the box when it comes to viewing history or politics but it is not what gave them the ability to think and understand. In fact in many cases their autism prevents them from understanding the abstract reasoning associated with higher math and science and has inhibited collegeman from pursuing his love of forensics. So if he wants to continue or change to a science major he would need to find a way around this deficit and find the willpower to work even harder at school than he already does. So the choice is his and he will decide what he will do in the future and how he approaches his education. Right now it is why he chose a history major and a law minor. But that can change at any moment as well. We support him with whatever he wants to do. That is our job as his parents and no one is going to tell him he can’t or he shouldn’t because of his autism anymore than trying to tell him how he should explain himself to the world.

The fact is that no one is going to tell him how to describe himself or where to put his energies. It is fine if those in the HFA autism community want to lobby Congress or rally in Washington, or participate in Walks for Autism. The boys do not. They want to help feed the hungry, fight to help those in Darfur and support the State of Israel in its quest for survival. No one in the autism community has a right to tell them that they can’t or that their job is to make sure that everyone around them is aware of their autism and that their job in life is to teach everyone that comes in contact with them about autism. If those within the HFA autism community want to live their lives that way, then they have that right but they do not have a right to dictate to others what they should do or not do. Members of the HFA community do not have a right to demand that others hold themselves up as the autism poster child just because that is what they want to do with their lives.

They also don’t have a right to say that because we do not define the boys as autistic human beings but as human beings that we are ignorant or prejudiced or ashamed of our children. Perhaps that is the feeling that they received from their parents and the people around them, but it is not across the board and quite frankly I resent that. In fact I would say that it is downright insulting. Again so many members of the HFA community are unable to view the world outside their bubble and cannot understand that there are different parents, upbringings and perspectives. The mindblindness that I spoke of earlier.

To say that the reason we don’t describe the boys as autistic human beings is because we want a cure and we are too stupid to know that there is no cure is also insulting. I have news for all those in the HFA autism community, YOU BET I WANT A CURE. It does not mean I don’t love them or that I reject the boys. What it means is that life could be a lot easier for them and that they have a right to not have such problems and emotional upheavals and trauma in their lives. The simple act of being able to speak in class or meet new people without climbing into a mental shell or to simply transition into a new school year without having seizures or tics would be a great thing and a terrific way to start eradicating autism.

Furthermore, for some of my friends with nonverbal children, a cure would be nice if for the sheer fact that their children could make their needs, likes and dislikes and desires known so that you didn’t have to guess what the problem is or is not every moment of every day. You never understand how it is such a simple act of saying you prefer chocolate milk as opposed to plain milk as an extension of someone’s humanity, but, so many cannot even communicate that. Do they not have that right? Who is the high functioning autistic to say that these severely affected people do not have this right and the autism community does not have a right to desire a cure in order for an individual to one day accomplish this simple act of personhood. (This is just a tiny example of one act of self-actualization, not the defining act of personhood, so please don’t write inane comments below.)

I think in this respect so many in the HFA autism community only see autism from their perspective as well. They resent the idea of a cure as if something is wrong with them. They resent the attenuation of the concept of normal and want it redefined. Sorry guys, there is normal and there is appropriate and there is how things are done in society. This does not mean that your struggles and your needs should not be met by society but the quest in life to better everyone’s existence is not simply about you and your autism. Autism is a huge spectrum and everything isn’t just about you.

An interesting event took place once for the boys. They were being tested for a genetic research project and they asked the tester why they were there. She told them that they are looking for a cure for autism. The boys told her that they did not want to be cured, that they liked who they were. She explained to them that they were the lucky ones and that they are truly rare in the autism community; that there are some people that are so affected by their autism that they not only can’t speak but injure themselves, live as adults in diapers and have no true understanding of the world around them. As children they understood this message. The question is why the HFA autism community doesn’t see it.

When I was studying in Israel, as a teen, the teacher asked how we would define ourselves. I spoke up that I define myself as “Jewish human being” because the world sees me first and foremost as a “Jew” and a human being second. He responded that that is how the Nazis also saw us, meaning the Jewish people. (By the way it is also how the Nazis saw the disabled as well, as disabled first and foremost without any sense of humanity. Remember the Nazis experimented on the disabled to find the best and most productive way to kill the Jews of Europe in their quest for the Final Solution.) The teacher proffered that just because the world sees you as something other than a human being that that doesn’t mean that you are not a human being first and foremost. Well I have extrapolated that to include my children and their autism. They are first and foremost human beings, not autistic human beings, and the world is obligated to treat them with respect not because they are autistic but because they are human. Additionally, that includes the HFA community respecting their right to not consider themselves as autistic anything other than it being just a small part of their persona, if they even want to include autism as a part of the definition of who they are at all.


Until next time,

Elise

For those who do not understand the title, it is a play on words from Romeo and Juliet the balcony scene:

Sunday, August 8, 2010

August Happiness Project: FUN

Want to have fun! It doesn't take much effort, just get up and move.........


60s:




70s:





80s:




90s:




2000s:





2005:




NOW:




                                                                      JUST SMILE








Until next time,


Elise

Friday, August 6, 2010

Just Because



Friendship is not just the purview of humans...in fact sometimes God's other creations have more compassion than we ever could...


Until next time,

Elise

Wednesday, August 4, 2010

Its the Bill Not Healthcare Reform Stupid

The following appeared before the passing of the current Healthcare Reform Bill, however alot of the issues discussed are still valid, and considering that voters in Missouri just voted against Healthcare Reform as it stands something still needs to be done and done before we end up with a fiasco. If you notice, my conclusion is that the Bill is half-assed. It just didn't go far enough to really do any good in the long run. I also disagree that something is better than nothing, Congress could have just passed a law making it federal law that autism therapies need to be covered by insurance companies, it didn't have to try to revamp so quickly, blindly and without much thoughtful analysis (remember the post CBO  numbers showed that it is not deficit neutral, but a potential drain on the economy)1/6th of the US economy. Comments are welcome as long as they are constructive and thoughtful and add to the discussion. Anything less than that will not be published.



A lot has been written about whether the “healthcare” bill can pass constitutionality if passed by Congress and signed into law. The pundits discuss the use of the commerce clause, or the health and welfare clause or even the supremacy clause in order to bolster their points one way of the other. Truth be told no one really knows what will happen when the nine Supremes get their hands on any type of bill that will eventually pass the congress. I doubt SCOTUS even knows. They can’t know. There is nothing to know right now.


But one thing I do understand in the midst of the entire hubbub is that something very important is getting lost. I think that something is the will of the American people. The American people have plainly told the Congress we do not want this bill. We do not want another fiscal calamity in the making. We do not want the government interfering in our day to day decisions about our family’s health. We do not want government controlling 1/6th of the American economy. We do not want big government, big daddy or big brother. Too many in Congress are just not listening. They have forgotten that they serve us, not we serve them.

Ok, but what do we want. Well near as I can tell, what we want is a fair shake. You spend your life as a good and decent person. You work hard. You pay your taxes. You take care of your family. You want to know that you will be able to own a home. You want to know that your children will be educated. You want to know that if you get sick you can get help. Now, of course, it is a misunderstanding that those without medical insurance will be turned away from an emergency room. Yes there are instances of patient dumping. Heck a famous Chicago hospital used to be known specifically for a dumping plan created by their well paid Harvard educated attorney. But for the most part, if you are in need you can get help. Is it perfect, of course not, nothing is. But this idea of discrimination based upon income is false.

Yet there are some real issues with healthcare in today’s society. The premiums are through the roof. The idea that you cannot pick and choose what you want in your policy, you have to take what is prescribed by state law is absurd. That there cannot be any inter-state competition between insurance companies seems downright un-American. Insurance companies can deny you coverage due to a pre-existing cause in all but a few states. Insurance companies may deny you coverage because you have a disability. Insurance companies may drop you if you become too high risk, and insurance companies can prevent you from receiving the latest medical care and access to the latest technology.

So what do I think should happen? It’s really very simple. Competition. Competition. Competition. But not the competition we have today, but real open market competition. Firstly, make the insurance companies abide by the anti-trust laws. Remove the exemption for them. This way there would be a free and fair market value of the product. Next, have interstate completion. Yes, the health and welfare clause of the constitution leaves health and welfare to the states. Yet, we have the FDA, Surgeon General, NIH, CDC and OSHA, all with direct health and welfare benefits to the population. Additionally, the commerce clause can come into play just as it does with regulating the flaps on the back of a semi. You would think that taking care of someone’s health insurance, which would allow them to travel and change jobs, thereby promoting commerce, would be in the interest of government, just as the regulated size of mud flaps on the back of a semi was a major concern. But who am I to judge, right?

Next idea would be that people should be able to put into their health insurance policy what they want. The state requires certain practices in an insurance policy because the insurance lobby has invested millions in lobbying efforts to make sure that certain practices are or are not included in the insurance bills. You don’t have a choice to pay for maternity care, geriatric care, obstetrical care, or alternative therapies (acupuncture) if you don’t need it. It’s put in your policy and you either take it like it is or go without. We have more choice in how we protect our automobiles than in how we take care of our families. We should be able to choose something akin to an old-fashioned Chinese restaurant menu-one from column A and one from column B, pick your deductible, co-pay and prescription plan. I have to admit that one of the things that I fear the most about changing jobs is whether the new prescription plan will cover my children’s medications? It can hold you back, from helping yourself. No one should have to live like that.

I know that we hear that a lot of these topics that I am discussing here are in the bill winding its way through Congress. But there is something else in that bill that makes me uncomfortable, the loss of privacy. I find it ironic that the first people to scream about the right to privacy and nongovernmental interference at red lights (oh they rail about traffic cameras) are the first ones who think the government should control your healthcare information. That somewhere in the deep recesses of the newly created Department of We Know What’s best For You, will be the medical files of every man, woman and child that lives in the United States. Oh, no they say, they are not going to force anyone into a one-payer system, but when you make it impossible for small business owners to afford insurance for their employees where are we supposed to go next? To the government. You know the ones that just said not to get a mammogram until age 50, that’s it economically more viable to wait because the death rate for women in their 40s is not so bad. I guess unless of course you are one of the women in their 40s who ends up dyeing from breast cancer because the government would not give you a mammogram. I think we have already seen the commencement of government run healthcare in the United States and quite frankly all I see is death at an earlier than necessary age.

But what about privacy? Those who claim to defend the Bill of Rights scream and carry on about the right to privacy in our daily lives. That to have city-wide cameras to catch criminals is a violation of our right to remain anonymous. Truthfully I don’t buy that. Once you leave your house, you are no longer in the privacy of your home. Once you talk on a cell phone, you use public cell towers. Once you sit at the internet, you are on the information superhighway. There is no privacy. You put yourself out there. You place yourself in the purview of the world and the world has a right to watch you. Being in public is not being in the privacy of your own home, it’s not even the level of privacy afforded being in your car.

Oh yeah the car argument. Doesn’t the government make you buy insurance when you own a car? Well yes it does. But no one said you have to own a car. You can bike. You can walk. You can take public transportation. Driving is also seen as a privilege not a right. Therefore, the government can make any regulations it deems fit, due to public safety, when it comes to driving. But for the government to tell you, you have no choice but to buy a product is definitely beyond the purview of their powers. They can tell the country what a product is supposed to be and how it is to be configured and can even regulate its safety levels, but they can’t make you go out and spend your money if you do not want to.

It’s also ironic that those who are so hell bent on maintaining the right to privacy when it comes to procreation, an implied right, not even a fully thought out one at that, want to ignore how a government health care plan would challenge that. No I am not going to get into the abortion debate and who pays for what; I think it’s a much more simple issue that people seem to have forgotten about. Simply put, the government in deciding whether to fund birth control in its health care plan will be directing the privacy procreative rights of whoever is part of the plan. Government can’t tell you how, when, or where to procreate. It may tell you appropriate places to have sex (indecent exposure laws) but it can’t tell you no. But when it comes to control over birth control then the government will be interfering in your ultimate privacy rights. Funny how that doesn’t bother some people.

So what do we do, or what do we have? We have a broken system of that everyone agrees. It is the best health care system in the world, but that does not mean it does not need improvement. Yes there are programs for the poor and especially for poor children. Yes there are programs for seniors; I have to say that personally Medicare Advantage has saved both of my parent’s lives.(Interestingly it is also the Medicare program that the Congress wants to kill). But there are problems:

-The cost is staggering. But that does not mean transferring the cost from the private to the public sector will make it better. In fact, I think it will just get worse.

-The fact that people can be denied insurance if they have a pre-existing condition is wrong, especially since it is those with disabilities who get denied more than most. Otherwise healthy children on the autism spectrum are being denied basic health care because insurance companies fear that they will have to pay for autism related therapies. The cost of disabilities is staggering to a family. Most with disabled children will face the possibility of bankruptcy at some point in their lives. (Believe me if you don’t live it, you can’t understand the overwhelming cost of creating a future for the disabled. Ironically too, most of what is needed by a person with an invisible disability is not covered by insurance today. No matter how high your premium, everything is still out of pocket)

-The fact that people’s insurance can be cut off in the middle of treatment.

-That insurance companies are exempt from anti-trust laws and that there is no competition.

-That states do not allow people to shop for their individual configurations of insurance policy.

-That in the end it is those who fall through the cracks of society that need help. We also should never assume that we will not be one of those through the cracks. But we need to have a way that government does not control who we are and who we will become just because at some point some of us, will need society’s help.

-Another interesting point that everyone fails to mention is the fiduciary duty of the heath insurance company to make a profit. If those who run the company do not make a good faith effort to create a profit for their shareholders, they are in breach of their fiduciary duty and can and will be sued by their shareholders.

Somehow this law needs to be rewritten in the health care debate. Profits and compassion do not always go hand in hand unless we make it.

This has just been a few ideas that I have had about the healthcare debate. I leave it to you to decide whether you agree with me or not. I leave it to you to decide if my Constitutional reasoning is sound or not. But most of all I leave it to you to join in the discussion and find a way to make your voice heard.

Until next time,

Elise