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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About Cristin L.

Earthling, pilgrim, peace warrior and special needs parent
This entry was posted in special needs parenting and tagged , , , , , , , , , . Bookmark the permalink.

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

  1. Debra says:

    Ok – I was totally with you until almost the end. What do you mean it’s required by law that the teenaged girl go in alone? I understand the value of independence, and I’m definitely going to start having my kids check in for their appointments (great suggestions!). But if my daughter wants my support during a checkup or a difficult conversation with her doctor, when she’s older, at what point would the law stop me from being there? Please enlighten me further!

    • Cristin L. says:

      Well, of course you can support your daughter if she wants your support–but that will be her choice, not yours. But what you’ll start to find is that as our children progress toward the age of majority, there are a number of laws that will protect their confidentiality–and it happens much sooner than you think, with some protections starting as soon as age 12. It’s not too early to start talking with your kids’ pediatrician about what their office policy is and what they recommend. All in all, it’s a good thing–it helps them prepare for adulthood. It just makes it more important to start preparing them sooner rather than later so that they can find their voice, advocate for themselves, and learn to ask for help when they need it.

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