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

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Durga Tool #6: 10,000 (or so) Hours of Practice

Another tool in my toolbox series that helps me live with joy, courage and compassion, as inspired by the Hindu goddess Durga.

As I approach my 10th year milestone of parenting a child with special needs, I remembered some research I read years ago about what makes someone an expert.

Psychologist Anders Ericsson is well-known for his theory regarding expertise: it doesn’t take innate skill or genius. Just lots and lots of practice.

In study after study and field after field—tennis, music, chess, computer programming—his research contradicted the old adage that you have to be born brilliant or talented in order to achieve expert-level skills. On the contrary, Ericsson says that you have to be willing to apply yourself, work on the things you find difficult, act and think deliberately, find great coaches and mentors, and practice, practice, practice. Ten years or 10,000 hours, in fact.

This was great news for me. When it came to possessing the knowledge to parent a child with special needs, I was not “born this way.” In fact, I was ignorant, procrastinating, in denial, insecure and often misinformed.

At the time that the first symptoms began to appear, I wondered how I was going to handle the challenges I faced. But little by little, a knowledge base was born.

I’ve gained so much uncommon knowledge, like how to understand how the body works (and how to work with the parts that don’t), how schools and systems work (and how to creatively get what I need) and how society works (and how to change it). I’ve gained skills in research, lobbying, advocacy, creative problem solving, therapy, analysis, management and communications, organization, teaching and education, networking, systems change and social justice.

Here I am, 10 years into it (and much more than 10,000 hours) and I notice that I have gained a certain level of expertise. I don’t always have the answers, but I know where to look for them. Or at least I have the confidence that I can figure out where to look, and lots of people who can help me if I need it.

So the next time someone comments “I don’t know how you do it,” you can tell them the truth. “Practice.”

Surprise, surprise

Where to begin? Life has not lent itself well to blogging lately. Too much living and not enough time to write about it. Maybe that’s the way it should be.

I find I am content. Satisfied. Friendly toward myself even. And that doesn’t make for great subject matter or inspiration.

I spent last week on a meditation retreat, cupped gently in the hands of the verdant rolling hills of New York’s Hudson Valley and two skillful and nurturing teachers, the lovely Jon Kabat-Zinn and Saki Santorelli, and surrounded by a community of new friends and fellow travellers.

Stepping so far away from my day-to-day, away from not only work and family, but also my smart phone and computer, my patterns and habits, from TV and even reading, that I felt like I had taken a blow torch to some mental and emotional cob webs, set them alight, watched them burn and maybe even let them go. Yes, Shiva the Destroyer—and Durga’s consort—was in the house.

While the inner machinations of my own mental process is fascinating to me, I doubt it will be to you, so I won’t bore you. But one surprising thing did come up that I wanted to share.

It is this: this label, this story that “I am a parent of a child with special needs” is … changing. Feeling less precious, less necessary.

In the moments of stillness and silence of the retreat, when I expected it to appear like a gale force wind, it was merely a quiet breeze.

How strange. Surely, after these last couple of years, there could be nothing else worthy of my ruminations? But not only were there plenty of other thoughts to watch—most notably my profound and continuous striving to be someone other than who I am—I found that it just didn’t come up much.

By the end of the week, when I came out of silence to my first intimate conversation about what I had seen, I noticed that I didn’t even bring it up. It simply wasn’t part of the story. After years of demanding that there’s got to be more to life than this…I find that there is.

I don’t know how I feel about the possibility of letting go of this identity, or if I’m even ready to. It has been a liberator and a jailor, a lightening rod and a scape goat, a shield and a veil, a pulpit and a gallows. That’s a lot to let go of.

And “letting go” is too active a verb to describe what’s happening. I’m not doing anything. It’s doing itself. It’s letting go of me. Or maybe not letting go, just melting, melding, or pulsating between itself and something else.