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!

Transition baby steps that lead to major milestones: It starts with YOU!

Recently my colleagues at the Federation for Children with Special Needs have been talking about the importance of preparing kids for medical transition to adulthood—how parents and caregivers need to deliberately teach kids the skills and build the confidence they will need to be engaged in their own health care as adults.

When the topic came up at first, I was resistant. With so many other skills to teach and care elements to manage, the prospect of adding another task to my long to-do list was overwhelming.

Luckily, one colleague offered one simple suggestion that I felt willing to take on: at our next doctor’s appointment, I would give my kids their health insurance cards, let them walk up to the check-in counter and say that they were there for an appointment. I felt it was something that my nine-year-old son, who has complex medical and developmental needs, and my seven-year-old daughter could handle.

Since our doctor visits are fairly frequent, I was able to try it out soon. My son, who has been practicing social pragmatics like this at school, loved this real world experience. My daughter also easily did it. I was also surprised by an unintended consequence: not only did it teach my kids a new skill, it reminded the staff, my kids and me that my child is the patient.

OK, I thought. I get it. This doesn’t have to be a big deal. As with most things we want our kids to know, we need to give them lots and lots of tiny opportunities to practice, not one big lecture a couple of days before they reach adulthood. I realized I could do this.

A couple of weeks later, a patient satisfaction survey came addressed to my daughter. Rather than fill it out myself or toss it, I gave it to her. To my surprise she had a lot to say, both good and bad. “I love Lorraine*,” she wrote about the medical assistant. She wrote earnestly: “The waiting room is really boring.” I was taken aback by the strength of her experience and her ability to articulate it. I chuckled thinking about what the person opening the envelope would think when they read the results.

Last week, she had her eight-year well visit. With minimal effort, I handed her not only her insurance card but also the card I use to pay her co-pay. I told her that she’d be fine checking herself in. Rather than standing next to her, I sat down on a chair nearby.

She approached the desk with a little hesitation, but the receptionist took the cards and proceeded to get her set up. He started to direct his questions to confirm our address and phone number to me, but I looked to her and repeated them, showing them both that this was between the two of them. I took real effort on my part not to jump in and help, but I managed.

We all survived and even smiled. By the end of the check-in process, he handed her a clipboard with a behavioral health survey. She came to sit near me and announced that she was going to fill it out. Once again I was surprised and delighted about how much I learned from her answers—for the questions “My child seems more tired during the day,” and “S/he wants to be with me more than usual,” she circled the options for “often.” Interesting information and the beginnings of a couple of great conversations we had afterwards.

As we went through the process, a woman sitting nearby with four boys, all clearly older than my daughter, remarked at how independent she was. They had already checked in, but next time, she said, she’d get them to do it themselves.

Shortly afterward, a hurried mother and her teenage daughter arrived. The girl stood over to the side while the mother took charge checking her in, while I got to sit and luxuriously read a magazine. Knowing that this girl would be going into her doctor’s appointment without her mother, as is required by law, I wondered how comfortable she would be.

Unfortunately, there wasn’t any way to pass along the lesson I learned to her mom, but I can pay it forward to you. Preparing our kids to become adult patients doesn’t have to be complicated. Just start giving them lots of tiny chances to practice, and they’ll surprise you. Before you know it, adulthood will be here, and they’ll be ready. Even if we’re not!

*not her real name