Durga Tool 7: Getting into the driver’s seat

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. 

In my 10 years as a parent of a child with significant medical and developmental challenges, I had significant “a-ha” change in my level of consciousness just a couple of years ago. So significant that it almost deserves a personal equivalent to the B.C. and A.D. of our Western calendar. That’s how big a deal it feels, even now.

Before this shift, I was naïve, in denial and passive. After this shift, I was empowered and engaged. It was as if after years of being a passenger in my son’s care, when doctors, early intervention professionals and teachers had been driving, I decided to take the wheel.

So what happened? Health care workers would say that I got activated. Educational experts would say I got engaged. Family leaders might say I became an advocate.

I would say that I finally understood that when it came to my son’s life, the buck stopped with me. I understood that no matter how respectful or knowledgeable the experts were, they couldn’t connect all the dots of my son’s needs. They didn’t have the knowledge or resources to. To ask them to was unrealistic and even unfair. And the healthcare and education systems that I assumed were always looking out for the best for us…well, if feels almost foolish now to say that I did think things worked that way.

Suddenly, I got it. And that realization pushed me to gain so many new skills, so much knowledge and confidence. Some might call it grace. It sure feels like it.

I don’t have any answers as to why I was lucky enough to want to get behind the wheel. I do have a lot of empathy for those who don’t. It probably depends on many things—in my own case, my own personal and cultural views on both authority and expertise, a lack of access to a peer who had been through it before, challenges coping with fear and anxiety, anger at feeling that life had dealt me a bad hand, but to name a few. Mostly, I think, it was a bone-deep sense of overwhelm, a false assumption that there were too many questions, too few answers, too much bad news and not enough me to go around.

Since then, I’ve become passionate and curious about what makes one person “wake up” to the idea that they are in the driver’s seat of their own and their child’s well-being, and another person assume that the professionals caring for them can know what they need better than they know themselves. If I could wish for one single miraculous insight for others, it would probably be this acceptance of the absolute need for personal responsibility. Without this, nothing else will get done.

In the health care world, professionals talk about family or patient “readiness,” or our openness and ability to make a change.  Before we “wake up” or become what they call an activated, engaged patient, we must spend time getting ready for that change. Maybe it’s not a switch that gets flipped, but a series of awakenings, of small changes that slowly builds our confidence in our own ability to lead.

Yesterday I got the chance to observe an intervention at a waiting room in a health clinic designed by an organization called the Right Question Institute. A medical student, armed with a simple pamphlet and a friendly way about her, approached patients waiting to see their doctors and coached them through a brief activity that helped them prepare three well worded questions for their doctor.

Is this the grace I have been wishing for others? Perhaps so. After so many years of trying to support others to get in the driver’s seat by enthusiastically telling them they could do it, I watched a few folks learn how.

When did you figure out that you needed to be in the driver’s seat? Did you always know? How to you encourage others to take charge?

See you out there on the highway…zoom zoom!

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Secret hand gestures

Yesterday I watched a woman gently coax her adolescent son away from the edge of a meltdown. As they headed toward the exit of the store we were all in, he began waving his arms and grunting “No” in a loud voice. “It’s OK, David,” the woman said quietly, stroking his back. “Take a deep breath. It’s OK.”

I caught myself looking over at the two of them. I marveled at her ability to speak only in a tone of tenderness and compassion, not desperation or nervousness or embarrassment at causing a scene.

It’s in moments like this that I wish there was a secret hand gesture, a high-five or a thumbs up, that would let that other person know: “Hey, I’ve been there. I see you. You’re doing a great job. If you need a hand, let me know.”

If she had looked at me, she probably wouldn’t have seen any of that. She would have seen a stranger staring at her, straining to send off vibes of empathy that probably look a lot like pity. And maybe that would have flustered her and caused her pain. So instead, I ignored her, turning back to the rack of dresses as if they were the most interesting thing in the world.

I know so many times I have seen others look at me and my son, who isn’t on the autism spectrum but who has a number of quirky behaviors that seem to captivate the attention of strangers — when he has an accident that soaks through his pants, talks too loudly at movies (usually perseverating on a word or phrase for what feels like an eternity), or turns eating into a full body experience when we’re at a restaurant.

In those moments, I often wish to simply disappear. I just assume that people don’t understand, that they’re judging my son or my ability to parent.

I have to give a special thanks to the recent post on Rhema’s Hope for not only writing, always full of grace, but for pointing out a short segment on the TV show What Would You Do? that shows the reactions that people have to a family with a child on the spectrum when they go out to eat. (Watch the segment here.)

The reactions of the fellow diners made me reflect that maybe I’ve been underestimating people and that there is no need for a secret sign. Can it be that I’m giving strangers too little credit? And what does my discomfort say about me? Is it possible that it has more to do with me than with them?

Maybe the glares I feel are, in fact, filled with empathy and support. Maybe there’s no need for a secret sign. I’m going to play around with that perspective for a while, and see how it feels.  Much to think about.

I’m really curious to know what other folks do in these situations. How do you feel? Does it keep you from going out? Has the feeling changed? How do you show support for strangers, if at all? Do you have a “secret sign”?