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Tuesday, January 8, 2013

Stage 3: Bargaining... or Guilt

The 3rd stage of grief is officially "bargaining". I wasn't interested in doing any bargaining; I had done enough of that during my years of infertility. Instead I felt tremendous amount of guilt for not keeping my end of the bargains. It took a very long time to realize that I was not being punished by HaShem, and that Dovi's situation had been predetermined a long, long time ago.

Or so I still hope. You never know.

Like many mothers of newly diagnosed autistic children, I was filled with guilt and was absolutely convinced it was all my fault.

Before I had children, my nights were long and lonely. I was addicted to the computer; I barely moved from the minute I came home from work til I fell asleep in the wee hours of the morning. I became hooked on a certain comedy show which had elements of infertility in it.  I made a 'bargain' - a deal - with HaShem - that once I became a mother I would no longer go online.

But as all you computer addicts know, it's much easier said than done. You can't just go offline like that. My entire life was on the computer. My friends were all on the computer. It was my whole identity. There was just no shutting it off.

After a while I resigned myself to the fact that the Internet is here to stay and it's not the world's greatest aveirah to be online as long as you're sticking to kosher places. But when Chaim was a couple of months old I got roped into watching another show. And another. And another. I kept telling myself that I wasn't addicted and I would stop when I would be expecting again.

I successfully stopped watching shows when I was expecting Dovi. And I was careful to stay away from shows after he was born. With a newborn baby there is very little downtime and staying up late to laugh at comedy tracks isnt the best way to regain one's strength. So for about 18 months I stuck to my promise.

It happened extremely innocently. A talk show host I listened to on Motzei Shabbos announced on his show that he would be away for about 3 weeks as he was going to be on a reality show in England. Extremely curious to see that radio host live, I watched a clip or two of the show. And then I was roped in. It was a daily show plus a weekend talk show plus a daily half hour talk show, plus a live feed several hours a day. In short, I was attached to the screen.

And just about then is when Dovi began to retreat into himself.

Unaware that this was a symptom of a serious condition, I was happy that he wasn't bothering me and I could sit glued to the computer undisturbed. But when things got worse and the diagnosis came in, I was filled with horrible, gut-wrenching guilt.

Had I caused him to retreat into himself? Was I "ignoring" him and thus he had lost his words?

When I first met Naomi Whyne, I told her frankly that this is what I thought was going on. She, along with all the evaluators, told me that neglecting a child and failing to interact with a child was not a cause for a child to lose speech. Kids who spent the entire day with Spanish-speaking babysitters still picked up language from their surroundings. It wasn't my fault. It was the way his brain was wired, and it had nothing to do with me.

But I still felt guilty. It still felt like Divine Retribution.

About a month into my new addiction, an outspoken friend of mine told me, "You know, you made a promise to G-d, and you're not keeping it. G-d gave you a gift; He could still take it away!"

I was absolutely horrified at her and couldn't believe someone could talk to me this way. Months later, after Dovi's diagnosis, I confronted her and told her in no uncertain terms that she had put a curse on Dovi; G-d had "taken him away" from me - his entire spirit, his entire self, his inside. I had lost the beautiful, charming, alert little boy and in his stead I was left with a shell of what Dovi was. My friend insisted that she had never put a hex on Dovi and that's not exactly what she said. It took me a long time to forgive her, but I have forgiven her wholeheartedly. There is no curse on Dovi, and this is not Divine Retribution for anything. A pure, innocent child does not get punished so severely for his mother's sins.

Years back during my struggle with infertility, I always blamed my miscarriages for my Internet addiction. A very wise friend told me the following: There are mitzvos (good deeds) and aveiros (transgressions). Watching shows is neither a good deed nor a transgression; it's a shtus (silliness). People do not get punished for engaging in frivolity, and I was not being punished.

So in the hashkafic sense, I was not to blame. But what about medically? Was there anything I had done wrong that caused Dovi's autism?

The jury is still out on what causes autism. No one really knows. But in the next post, I will go through Dovi's entire medical history starting with his prenatal existence. Many hypotheses exist on which of the many little medical events in his life could have contributed to the autism. Anything could be a root cause; none of them may be a root cause. None of the many professionals I consulted have given me a conclusive answer, nor given me any advice on treating autism medically. Sure, sure, I've seen and heard of many 'natural alternative practitioners' - but all they really do is suck your money out and there are no real results.

More on that in the next post.

To be continued...

1 comment:

  1. One of the most heart-wrenching scenes in the Temple Grandin movie was when they blamed the mom for Temple's condition and accused her of being a refrigerator mom. Thank G-d the public's accusations of mothers has died down a lot in the past 20 years. (Unfortunately self-inflicted guilt has not.)


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