How I’m Raising My Kids To Be Health-Care Self-Advocates

I am sitting in the waiting room as my teen daughter with FASD (fetal alcohol spectrum disorder) and anxiety walks in on her own — for the first time ever — to a specialist’s appointment.

Coronavirus protocol right now means that she is supposed to go into the appointment on her own. I’d be a liar if I said I wasn’t worried she’d be completely lost, anxious or forget what to say on her own in there.

“Will you go in with me?” she asks on the way up the stairs into the building.

It’s a quick followup appointment and absolutely I could push the limits, remind them she is a minor with a disability and verbally argue my way in — but I stay put.

“I think you can manage this one,” I say.

Ten minutes later she comes out with a new appointment in hand and everything handled tidily. Better yet, she recapped the whole appointment for me on the drive home. For someone with memory challenges related to a disability this is a good start.

Paula has found that platitudes like "relax" and "don't worry" don't help her children's anxiety. Read what she does instead here.

Baby steps. I have two teenagers with ADHD, FASD and generalized anxiety disorder. At some point, in the near future, they will need to be able to manage their own health care, advocating for themselves in meetings with doctors, therapists and specialists.

"I want my children to grow into young adults who remember feeling valued, empowered and in charge of their own bodies ...."

I was a teen when I was diagnosed with Crohn’s disease. I was in hospital often. As a child with inflammatory bowel disease, I never felt empowered in the health-care system. In fact, that didn’t change until I was in my mid-20s with a career as a reporter and a doctor who specifically engaged me as a peer.

Think about the word "patient" itself — it implies a passive state. My mother came from a generation where doctors were never questioned, and they assumed demi-God status. I don’t fault her for a second for that, but I know doctors are also humans. We all make mistakes.

I want my children to grow into young adults who remember feeling valued, empowered and in charge of their own bodies when travelling through the health-care system.

So, how do you coach a child to self-advocate when it comes to health care? When are they ready to start taking some control of their own health care treatment?

Remind Them They Have A Voice

From the time my oldest girl was small, I tried to remember to teach her that she gets to have a say. That looked like this:

On a day when she was scheduled to start sessions with a new therapist, the therapist asked if a student could take part in the appointment. My daughter was about 10. She was not good at saying no or being assertive. The words had just been uttered when I felt a grip on my hand so hard, some of my knuckles cracked. So, I took a moment, spoke with her in the hallway and told her that if she had something specific to say she was in charge and needed to speak her mind.

When we returned, she quietly told the therapist she was uncomfortable with the student being in the room. She probably apologized, because that is her way. But still, she said what needed to be said to advocate for herself in that situation. That was a small milestone for her, and I praised that later.

Believe Them

My older daughter had stomach aches for months before specialists finally recognized this was not a stomach issue or something she was making up. It was a symptom of anxiety disorder. I believe what they tell me, and I am on their team. The same goes for academic complaints at school.

Both of Paula's children are adopted. Read why she started telling them their adoption story before they could even speak here.

Rehearse Then Repeat

Before we set foot inside a doctor or therapist’s office, I remind them of the appointment and, now that they are both teens, I ask what we want to get out of it. I reiterate that it is vital to be clear and direct when telling the doctor what you need and why. Also, don’t forget to be precise about descriptions of pain. Is it dull, stabbing, sharp, intermittent and exactly where is it located?

This year, one of my girls was not happy with her medication for attention deficit hyperactivity disorder, so she brought it up clearly, outlined her reasons for requesting a change and the psychiatrist listened. She knew her goal going in and we had discussed it before walking through the door to his office.

But like anything else you teach them, you have to repeat the lessons at regular intervals with each child.

Check Yourself

Sometimes I get it wrong. Luckily, there are often many chances to improve. My younger daughter is nothing if not good at reminding me when she feels slighted. Recently, that happened as we were leaving a pediatric psychiatry appointment.

“Mom, you both talked over me.”

Point taken. In the interest of moving the appointment along, I was interjecting and summing up what she was saying. Sometimes it’s hard to bite your tongue when you are in a rush and trying to get back to work. Although it was hard to hear, she was right and is on the way towards being capable of handling more of these discussions on her own.

Give Them Power to Know When to Stop

One summer, we were all completely overwhelmed by the number of appointments. So, we stopped and took a break. We refused to see any doctors for the months of July and August. Instead, my youngest did camp and enjoyed being a kid. And I got my breath back, because when I am burnt out from driving to doctor’s appointments, it does nobody any good.

The health-care system can be intimidating, regardless of your age. Over the course of a lifetime, almost everyone has some interaction with hospitals, doctors or specialists — and as the parent, I won’t always be there.

Preparing my kids for life, especially with a physical or mental health condition, includes building self-advocacy skills one step at a time.