Friday, December 7, 2012

Hanukkah, Autism and Self-Determination

This is a repost from last year December 8, 2011. It is still as relevant today as it was a year ago. Only there has been an update: CM1 decided one week before the LSAT that he does not want to go to law school. He wants to create video games and learn about computer forensic work. We are supporting him in his choice. We applied for and he received accommodations to take the GRE. We found some masters programs in computer science near our home and have signed him up for some basic computer science classes to finish out his college career. As I say later in this post, he is entitled to decide his own future. What career path he wants to take is his right of self-determination just like any other human in this world.

No matter what is happening in the world around me it always comes back to autism. So it should come as no surprise to anyone that autism is on my mind when it comes to Hanukkah. No, not so much the sensory issues or the change of schedule issues that parents face with holidays. Truth of the matter, if you do Hanukkah right, its not really a big deal.

In reality it is a minor Jewish holiday. Simple songs, simple menorah, simple candles and honestly, its supposed to be simple presents or in truth no presents, just a little  "gelt" or money for the children. If a holiday isn't mentioned in the Torah, it is not supposed to have major religious significance. The big deal present is supposed to be the dreidel, or spinning top used to remember the holiday.


The dreidel has four sides with Hebrew letters. Noon, gimel, hay, shin, which represent the Hebrew words "Nes gadol hiyah sham"...translated its means "A great miracle happened there..." of course in Israel the dreidel is different. Instead of the shin, they have a peh, for po or "A great miracle happened here..." which quite frankly if it did happen, it happened in Jerusalem, Israel. (Yeah I know CM1's religious skepticism is creeping into the family.)

So compared to  the outward trappings of Christmas,  the Christmas tree, and of course Santa Claus, Hanukkah really....well...kinda...sucks. Oh believe you me, the boys over the years did not lack for Hanukkah gelt or presents. In fact I have written that they received so much money in their younger years that we taught them to give 1/3 of it to charity. But for our family another purpose to the holiday had to be established.

I have always felt that life itself is not about what you get, but about who you are, where you come from and where you are going. It's about the lessons that need to be taught and learned in order to grow, develop and evolve into a productive and happy adult. What we did, as far as Hanukkah was concerned then, was find another way to celebrate the holiday by rediscovering its purpose.

So here is the story of Hanukkah...during the time that immediately pre-dated Hanukkah, the Jews were ruled by the Assyrian-Greeks. At first, under Alexander the Great, the Jews were not pressured into following the Greek religion, but were allowed to continue being Jews. However, after Alexander died and his empire split among his generals, the family that gained control of Judea decided that the Jews had to become more like the Greeks. This included not being able to practice their Judaism. In fact the learning of Torah was banned as were all Jewish religious practices.

Now here comes the dreidel...legend has it that the rabbis created the dreidel in order to teach the Jewish children the Hebrew language and Torah. If they were caught by the Greeks with the dreidel they only had to say it was a game they were playing. Is this story true? Who knows. But I think the idea behind the story of the dreidel is the right of every human being to the freedom to be who you choose to be.

Led by a group of brothers, the Maccabees (which translates to hammer), the Jews were able to rid themselves of their Greek overlords and rededicate the Holy Temple in Jerusalem. The miracle is said to have happened when the small amount of oil (only enough for one day) for the Temple lamps, which were to burn 24/7, actually burned for eight days until more oil could be brought. Miracle, yes, no , maybe...in our house we don't really care.

WATCH A VIDEO HERE ABOUT HANUKKAH

Hanukkah is considered, by historians, to be the first war for religious freedom. But I consider Hanukkah to be the first war for the human right of self-determination. No one has a right to tell you who you should be and how you should live. No one but you gets to decide your future. No one has a right to determine who you are to become based on a disability, religion, ethnicity, gender, creed, race or economic background. YOU and YOU alone have a right to make choices based upon your own sense of yourself.

For us, this right to decide your future, is the right of anyone living with a disability. So many throughout the decades, while we have been on this journey called autism, have tried to tell us just what and who the boys are allowed to become because of autism. Whether it was the social workers who couldn't believe how empathetic and intuitive the boys are, or the teachers who tried to stand in the way of their academic and artistic accomplishments or even the psychiatrists who kept trying to get me to push the boys in a direction they did not want to go. Sadly, so many people were not able to see the humanity of the boys due to their disability. They could not see the boys as people first. It is sad at times that even to this day, the "professionals" can't understand how the boys do not fit into their little mold and understanding of autism.

Meanwhile here's an interesting story....CM1 has been having issues with his seizure meds. We are switching him to medications that are less toxic and work better. So far his seizures have not stopped and quite frankly he has become rather irritable. We recently visited the psychiatrist, who actually has been in contact with the neurologist (that is the way its supposed to work), and discussed what has been going on.

A little background before I continue:  I had been telling this psychiatrist since we began seeing him, that CM1 was going to got law school. He kept telling me that it is too social for him. That CM1 needs to become a computer scientist or something where he has minimal social issues. Read HERE for how that went down. Additionally, the psychologists who did CM1's recent workup also said the same thing. They said because of his anxiety he should work in a "library" or as a historian/data analyst. Somewhere with very little pressure and social contact. Read HERE for the lowdown on that story. I kept telling the psychiatrist that nothing he mentioned was of interest to CM1. My son's interests  lie in righting wrongs. That he is entitled to try to figure out how to accomplish that goal. But I could tell the man just chalked me up as a parent who has no clue. I could see in the back of his head figuring that one day we will come back after CM1 fails and that we will need him to help us put the pieces back together. Well little does he really know us and little does he really know CM1.

Now the rest of this most recent episode: I explained that CM1 has had a slight seizure everyday in the past week. (Luckily with the newest most recent change, the daily seizures have stopped). The psychiatrist asked what was happening in school. I told him CM1 is going and doing well as usual. He couldn't believe it. I actually think the man was totally amazed. Seizures cause bruising to the brain and it takes time to heal. If he was having even slight seizures everyday, then the fact that he could continue on with his studies seemed to be to the doctor,  extraordinary. In fact the doctor actually said that CM1's ability to continue on at school through this is extraordinary.

The reality is, is that extraordinary is how I have always described CM1. He is simply, according to the psychiatric community, not supposed to exist. He has gone from full blown PDD-NOS to a senior in college with a mind on his future.

I told the psychiatrist the story about how when CM1 was in second grade. After being brought back in district, after several years of intense therapy and a self-contained classroom, how CM1 was beginning to thrive in the inclusion setting. His second grade teacher actually took me aside and asked what we did for him to help him.

"CM1 needs to be studied so that others can be helped," she said. "They need to figure out what helped him to become so typical."

I told her, "We did nothing different than any other parents. He had meds, therapies, and support. The element that made the difference was him. He wanted to be part of the world around him and was seeking ways to do just that."

CM1 in many respects is extraordinary in his ability to climb out of the dark tunnel he was headed for. But that is also why he has the extraordinary ability to become anything he wants to become. If he wanted something bad enough this youngman strove to understand what had to be done and to  excel. He allowed nothing to stand in his way.

The problem that he faces, quite honestly, is others' low expectations of those with autism and others' telling him he can't because of his autism. (Now that doesn't mean he doesn't have to produce in school just like everyone else in both academic and behavior. I am talking about people standing in the way of his long-term goals which is something different.) His right of self-determination is something he fights for continually. Ironically, I am not even sure he understands that that is exactly what he is doing. He simply does his own thing and sets his own course.

So Hanukkah in this house has several meanings..there is the religious meaning with the miracle of the oil; there is the historical meaning with the fight for religious freedom; and of course there is the taunt that we told our Christian friends as children, that they may have Christmas/Santa Claus , but we receive presents for eight nights...hahaha. Oh and of course on top of all that...we get a dreidel too....

But I think the one lesson of Hanukkah that is nearest to my own heart is the fact that this truly is the first time in history a group of people decided enough was enough and said "we will determine who we are going to be and we will determine our future." You see, self-determination is not as modern an idea as some would have you believe. However, the truly sad reality is that it is a right still denied the majority of the world's people, no matter who they happen to be.




Elise