How Parenting Shapes Us

Gifts of parenting neurodiverse teens

“Remember how you used to love rollercoasters?” I asked nineteen-year-old Ellie. 

She nodded. I could still see her, at twelve years old, bragging to her younger brother that she was finally tall enough to go on all the fastest coasters. He would have to wait.  

“And now you’re like, yeah I don’t need to stand in line for three hours to ride on a coaster that will make me dizzy, because I can feel dizzy anytime?”

We both giggled.

“Remember how much you wanted to go on the newest coaster when you were in junior high, because it was the highest one they’d ever made, even though it jerked you around in crazy ways and left your shoulders out of whack?”

Ellie giggled harder. “I’m already out of whack with my body! No thanks, Six Flags!”

I stood next to Ellie as she lay on a doctor’s examining table, the white paper crinkling underneath her hips each time she shifted. I smoothed the hair back from her forehead, over and over again.

“Did you see how beautiful this scene is?” I pointed to the painting above her. “Look at how blue the water is, in contrast to the green moss on the rocks. Reminds me of some of our best hikes.”

Photo by Nathan Anderson on Unsplash

“The waterfall is like a white-blue,” Ellie gasped. “It’s…really….pretty.”

Her body spasmed again, as if an invisible electric shock had passed through her body. I prayed that the doctor would come soon. I had already prompted a nurse.

Our Latest Health Challenge

As we waited for the cardiologist, I stayed close to Ellie, trying to soothe her. We believe that Ellie has a condition called POTS, which stands for Postural Orthostatic Tachycardia Syndrome, perhaps a result of long COVID. It’s a dysfunction of the autonomic nervous system, in which the body can’t keep blood pressure stable in relation to the heart rate, especially while standing. POTS isn’t life-threatening, but it’s often debilitating. For Ellie, it means dizziness, light-headedness, nausea, blurry vision, fatigue, and body spasms or tremors.  We’re still waiting for a specialist to give us a more precise diagnosis (side note: everything is an agonizingly long wait when it comes to POTS treatment).

When these episodes happen, I try to help Ellie’s body and mind calm down. I massage her arms or shoulders. I stroke her hair. I try to distract her from the pain by looking at something beautiful or revisiting a happy memory. Sometimes I crack jokes. If we’re home, we enlist the dog for furry snuggles and licks. Sometimes we pray together. 

Helpful Parenting Tools

Ironically, I realize that my ability to handle these episodes with any degree of composure is a strange gift. It’s one that I received by walking with Ellie through depression, anxiety, and an eating disorder. At the worst moments of Ellie’s mental health crisis three years ago, I was solely focused on helping my daughter heal. The last thing on my mind was how the crisis would shape me.

But now I can see how that experience equipped me in helpful ways, which I can apply to our current health challenges. Maybe you have learned similar tools by walking through challenges with a child, a parent, or another loved one. Here’s a snippet of what I’ve learned:

Supportive presence: In the depths of Ellie’s depression, when she couldn’t get out of bed, I learned the power of presence, with or without words. Ellie often benefited from quiet, supportive companionship, rather than advice. 

Distraction: I still remember when the treatment center therapist taught me about the power of distraction for teens, especially around the urge to engage in self-harm. The therapist coached me to help Ellie’s mind disengage from self-destructive thoughts by doing something fun and light-hearted together, like watching YouTube knitting tutorials (Ellie’s hobby) or silly dog videos. Later, when Ellie was stable, her therapist would help her understand those dark desires and develop tools to manage them. 

Staying calm in a storm: When Ellie’s anxiety resulted in panic attacks, I learned to sit with her and rub her back, to help her regulate her breathing and reassure her that she was okay. At the same time, I was unconsciously reassuring myself, even though I felt terrified, affirming that we would make it through this.

Holding firm boundaries: In supporting Ellie through her eating disorder, I learned about the importance of staying calm and neutral. Trying to re-feed a volatile, bulimic teenager taught me the necessity of being as unwavering as an oak tree and as strict as a drill sergeant. Becoming a tough-love mom, one who held the line around my teen finishing her meals and staying in close range to prevent purging, did not come easily for me. I only learned by making mistakes, debriefing my struggles with the treatment center team, and taking their coaching to try again. 

Detachment: I needed help from my own support network in the rollercoaster ride of Ellie’s recovery. They helped me learn how to detach from Ellie’s volatile moods. I learned that I could find ways to enjoy happy moments, even when Ellie made poor choices, even when she relapsed. Because we faced not just one but repeated crises due to Ellie’s mental health, I learned how to face them calmly without panicking. In a private space, where Ellie cannot hear me, I’ll ask a friend to support me in expressing my anger, grief, and fear. 

Prioritizing a Spiritual Connection: When our child is in crisis, it’s so tempting to spend all our energy on our caregiving duties. However, when Ellie is struggling, I’ve found that I need more time for self-care, not less. Prioritizing times for prayer and meditation have proved essential to help me find my footing. Lately, I’m realizing that less is more when it comes to my relationship with God. The weight of Ellie’s illness feels like a constant dark cloud in my mind, which makes it hard to focus. My spiritual director guided me to lower the bar and simplify my spiritual practices. For example, we created a one-word breath prayer together. Meditation, although my mind is even more distracted than usual, feels like a relief. I can sit with a shorter reading and know that it’s enough.

Reflecting on our Journeys

I wouldn’t wish a health crisis on anyone, but it’s also helpful to uncover the unexpected gifts that we receive as we walk through it.

As you look back on your hardest journeys, either with mental health or other situations, how have those experiences shaped you in good ways or hard ways? How can you affirm yourself for how you have grown through them? I’d love to learn from you!

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