Durga Tool #7: Google Scholar, as symbolized by Q

Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage, as inspired by the Hindu goddess Durga  — my nominee for patron saint of special needs parents.

Back in the day, when my son’s medical symptoms and developmental delays started slowly revealing themselves one by one, I received the following advice from several of his doctors:

Don’t start Googling.

While this advice may have been given for job security or to prevent a lot of “needless” requests for referrals, I think it was grounded in some compassion and consideration for my mental health. Medical information on-line is often: 1. hard to decipher, 2. dire and distressing, 3. contradictory, 4. controversial and predatory, 5. just plain wrong, and sometimes 6. all of the above. They suggested I take a more concierge/secret agent approach, bringing my questions to them and letting them feed me info on a need-to-know basis.

For years I was happy to comply. I was in full-blown denial, dysfunctionally optomistic, busy and exhausted caring for two small kids. The less bad news, the better. Consciously, I reasoned that they were the experts and if there was something worth knowing, they would tell me. I sensed that I could lead them down the wrong path and I didn’t want to be a distraction. But mostly I was in denial and content to stay that way.

But as my son grew and the picture got more complicated, the doctors started sending mixed messages. They’d start sentences with, “You’ve probably seen this on-line…” and “I’m sure you’ve already read about this on the internet….” What happened? It was as if policy had shifted and someone forgot to send me the memo.

At some point it finally hit me: I am ultimately culpable for my son’s well-being. No matter how many experts I recruit to our team, I am the one who will be held accountable and everyone else is assuming that I’ve got the big picture. (This insight is a blog post — or book or lifetime of practice — in and of itself.) I couldn’t stay away from the internet any longer, and a few years ago I finally gave in and started poking around.

You know what I found? Absolutely nothing useful. While medical websites can be slightly helpful when you know what to look for or if you have a very common diagnosis, my searches brought forth no fruitful results. I knew there had to be lots of academic papers from reputable journals out there, but my searches seemed to take me to useless sites that all seemed to be cutting and pasting information from the same vague source.

This fall, I finally learned about Google Scholar, a Google search engine that only searches academic and scholarly articles. I learned of it in a completely roundabout way; no doctor had ever shared it as a resource. (Why were you holding out on me, docs?)

In that moment, I felt like James Bond being given the cool gadgets from Q, the hidden camera in an average looking pen, the undetectable knives that shoot out from the wheels of my car when I press the cigarette lighter. And now, I give it to you.

What we do with that research — how to decipher it, how to judge its worthiness, how to not get overwhelmed by it — is information for another day. But in the mean time, here’s another tool for the toolbox.

Any other resources out there for evidence-based, sound research? I wouldn’t be surprised. If so, please share!

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Durga Tool #6: Synchronicity, Luck or Fate (whatever it is, I’ll take it!)

Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage, as inspired by the Hindu goddess Durga  — my nominee for patron saint of special needs parents.

Well, it’s official. The blood test results are in and my son does indeed have a new gentic diagnosis as I wrote about suspecting a couple of months back. It feels weird. I’m not going to go into the details of which arm of which chromosome has been duplicated or deleted here because what interests me more is the universality of the experience of parenting a child with special needs, not the symptoms or their specifics. More unites it than divides it.

What I’ve been reflecting on instead is the event that made this diagnosis possible: the mother of boy who also has this incredibly rare syndrome happened to be sitting in the same waiting room of the same office at the same moment as me and my son. Despite years of being examined, poked and prodded by experts, it took another mom just a moment to look at my son and see some spark of recognition that led us to the truth. A different doctor, a different day, a different area in the waiting room, and we would have spent who knows how many more years in the dark. Do you have chills? I do.

Some people would call it Fate or maybe even Divine Intervention. Out of all the appointments of all the neuropsychologists in all the suburbs of the world, that we should meet is such a statistical improbability that only a divine hand can have played a part. “Things happen for a reason” is a common mantra of special needs parents and I suspect a lot of folks would say that to us in this instance as well.

Others might call it Coincidence and chalk the shivers that are still running up and down my spine to apophenia, or the human propensity to see connections between two unrelated events. I mean, it’s not really that odd that we’d be seeing the same doctor (there aren’t that many of them, probably) and the appointments involve multiple long visits. The chances that we would meet seem small but aren’t impossible.

Still others who fall in between the two extremes of the religious-skeptic spectrum might give credit to Synchronicity, or meaningful coincidence. They might even go so far as to say I attracted this mom to using Synchronicity; just weeks before, I had become very clear about wanting a rock-solid diagnosis for my son, re-arranging my life to focus on his needs, and trusting that the answers would come.

Who knows? Who cares? Whether it’s because of some divine conductor or damn good luck, I’ll take it. While it would be nice to have a definitive answer about the big questions of life, I’ll settle for the little truths. Certain ambiguities — like whether there’s a force out there looking out for me — I can handle. Others — like having a proper and accurate diagnosis — not so much.

P.S. I love a good Coincidence/Fate/Synchronicity story. Share one if you have it!