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.