CVI parenting with self-compassion

Mom and daughter with her cane hugging and smiling at the top of a mountain hike

I shiver and go weak in the pit of my stomach. There’s a roar in my ears and a tightening in my chest. I wriggle a little, wishing I could just sink through the floor. Then I pull my cell phone out and text my sister under the table, “I think I’m having a heart attack.”

Was I having a heart attack? No. But a mid-IEP meeting amygdala hijack? Absolutely.

The term “amygdala hijack” is new to me, but the feeling is not.

Coined by Dan Goleman in Emotional Intelligence, amygdala hijacking is an overwhelming, out-of-proportion emotional reaction to stress. The amygdala is the emotional hub in our brain that triggers our fight-flight-freeze response, which is so important during an emergency, but less helpful during an IEP meeting.

Like many of you, threat-defense mode has been my way of life for about 10 years.

We’ve all experienced trauma or stress that kicks us into high gear. Hearing that list of diagnoses for the first time. Repeated hospitalizations and surgeries. Seeking therapies, traveling to said therapies, implementing what we learn during therapy. Reimagining our home environments and routines. Advocating for appropriate school services from the classroom to the courtroom. Dealing with ignorance about CVI and how that impacts our kids.

Ongoing adversity has contributed to my overreactions to stress. It’s taken me a decade to realize I need to do something about it.

I’m turning to self-compassion with limited success — due to user error.

What is self-compassion?

It never occurred to me to practice self-compassion until I read Kristin Neff’s Fierce Self-Compassion. She says, “When we practice self-compassion, we’re deactivating the threat-defense system and activating the care system, helping us to feel safe.” (Neff, 2021, p. 126)

It’s hard to feel safe when you parent a child with many needs. You have plenty to worry about and you have plenty to fight for — it can be relentless. Your reaction may be to self-criticize (fight), isolate (flight) or ruminate (freeze).

Neff proposes three opposite reactions — the fundamentals of self-compassion. Instead of self-criticism, turn to self-kindness. Don’t isolate, but seek common humanity. Rather than ruminate, cultivate mindfulness.

What self-compassion might look like for parents in our CVI community

Let’s be real. It can be really difficult to practice self-compassion, especially when we’re in the middle of an especially challenging day or season in the life of CVI parenting.

“So often, as parents of kids with disabilities, we feel like we have to be that full advocate parent where we always have a smile on our face,” said marriage and family therapist Amanda Griffith Atkins in a recent CVI Now interview.

As the mom of a disabled child, Atkins balks at platitudes directed at parents like us. “We’ve all heard the saying ‘God only gives special kids to special parents.’ There are all these things that we feel like we’re supposed to be. I want to crush all these things; some days are really hard and I can’t do it.”

Mindfulness

Being authentic about our hardships and resulting emotions is an important step. First, we must acknowledge the pain and stress, only then can we respond with kindness. As Neff says in Fierce Compassion, “We can’t heal what we can’t feel.” (Neff, 2021, p. 21)

In her interview, Atkins noted the power of knowing your triggers. What prompts your amygdala hijacks? Obviously, school meetings make my list.

The next time I head to an IEP meeting, I might:

Remind myself that I’m entering a trigger zone
Make an effort to remain present and mindful of my emotions
Name and validate those emotions, then give myself some compassion in the moment (e.g., kind internal monologue, hold my own hand, deep breaths)
Plan a reward to look forward to after the meeting

Girl using chalk to draw a big heart on the sidewalk

Common humanity

It is easy to assume people in our networks are living the dream, especially in our social-media-soaked society. That’s why we need to be truthful and vulnerable with each other — this is not the life we envisioned. We experience grief over our child’s CVI. We feel exhausted.

Sharing our pain breaks down barriers that isolate us.

I’ve always found comfort in the common humanity of in-person CVI conferences, Perkins courses and family camp, Lighthouse Guild support calls, and producing the Kaleidoscope podcast where I had the honor of interviewing many parents and caregivers impacted by CVI. It’s this community that has bolstered me and reminded me I’m not alone. (You better believe I’m ready to travel to conferences again, like Perkins’ Collaboration for Change conference in June. Hope to see you there!)

Self-kindness

Here’s the hardest part for me. Responding to myself with warmth and caring in the moment of struggle.

Several years ago we were at a public event and my daughter was having a royal meltdown. I felt ashamed and began to apologize to the people around me. A mother replied, “No, don’t apologize. This must be very difficult for you.”

She was speaking to me with loving-kindness, affirming that there are many challenges raising a child with a visual impairment. Why shouldn’t I speak to myself this way?

Instead of panicking and beating myself up over the situation, I could speak to myself (probably quietly!) with words of encouragement, like “This is a difficult, embarrassing moment. That doesn’t change the fact that you are a wonderful mother.” Or I could write a supportive letter to myself after the fact.

The backs of mom holding hands with her two daughters walking down a road

Why does self-compassion matter?

Neff conducted a study on the impact of self-compassion on parents of autistic children. (She has a child with autism and is intimately aware of the role of self-compassion in special needs parenting.) She measured parents’ self-compassion on the Self-Compassion Scale and surveyed them to find out how overwhelmed, depressed or stressed they felt due to their situation. Then she asked how hopeful and satisfied they felt about life.

Essentially, self-compassion was more predictive of their ability to handle the challenges of parenting a child with autism than was the severity of the diagnosis. It turns out the parents with higher levels of self-compassion perceived less stress over parenting, were less likely to be depressed, and were more likely to feel hopeful and satisfied. (Neff, 2021, p. 129)

Who wouldn’t want to feel more hopeful and satisfied as we raise our children during these troubled times?

Hope matters, and so does purpose

In the Foreword for About Us: Essays From the Disability Series of The New York Times, Andrew Solomon writes:

“The expectations with which a child is raised may have a strongly determining effect on what that child can do. Parents must hope for the best but also believe that life will have meaning even with a child who achieves limited functioning. The process of forging meaning does wonders for both parents and child.”

He goes on to cite a study finding that children with birth complications whose mothers searched for meaning had better developmental outcomes.

I think that’s why so many of us take on the mantle of advocacy — whether for one child or many. I’ve had concerns that by immersing myself in advocacy I’m over-identifying with my child’s CVI. But, aside from improving our children’s lives, advocating for kids with CVI fuels our sense of purpose and connects us to others who are experiencing similar struggles and sacrifices. Finding meaning and community contributes to our mental health.

It also leads to acceptance. Let me clarify. I don’t mean we accept the status quo and discontinue our pursuit of an early diagnosis and appropriate services for every child with CVI. I simply mean we have to accept that life is painful and we shouldn’t try to escape it.

Acceptance, really?

Suffering = Pain x Resistance (S = P x R)²
Shinzen Young, meditation teacher

Much like self-compassion, math is a fuzzy concept for me. But this equation, which I learned from Shauna Shapiro in her book Good Morning, I Love You, speaks to me. As someone who has spent a lifetime believing that pain is something to avoid, it was a revelation to learn that the more we resist pain, the more we suffer.

She explains it this way: “Acceptance is a surprising antidote to suffering because it helps us understand our experience rather than drown in it.” (Shapiro, 2020, p. 102)

About a year and a half ago, my husband and I had to do the bravest advocacy work of our lives. We went to court on behalf of our daughter’s education. I was called to testify and I didn’t like it one bit. The stakes were incredibly high. I felt furious that this was our path. I became very hard to live with — my patient husband was steadfast and understanding.

Going to court is painful. But by wishing fervently that the court date would vanish from my calendar, I increased my suffering. I didn’t have the wisdom to accept the situation and the skills to comfort myself about the pain it caused. When the trial came, all I knew how to do was grit my teeth and lean into it.

I’ve since learned from Neff, “We must fully accept the things that are painful and simply be kind to ourselves because they are painful.” (Neff, 2021, p. 130)

How are you kind to yourself?

I asked our CVI community how they practice self-care and self-compassion. Here’s a compilation.

I designate time for myself — often at 5 a.m. before the day begins — to soak in the hot tub, read, work on craft projects like embroidery, crocheting, knitting — quiet stuff so I don’t wake the kids.
Self-care for me is not stressing over getting everything DONE. Going to bed early when I’m really tired and let the laundry wait until tomorrow. Self-care has meant learning to say no.
We are fortunate to have two living areas. We try to keep everything clutter-free (CVI friendly), but on the days where washing and toys and life get busy and we need a break, we always have the front room clear and neutral. I let my little one watch TV; we take it slow and zone out.
My son loves walks and outdoors so we moved out further away from the city and love going for quiet walks together and looking at cows/beach/trees or just being outdoors and growing veggies in our backyard. They’re simple things but they help me relax and feel calm!
Self-compassion started when I decided to stop measuring my worth as a parent on whether or not my son could use his vision for a certain task. His progress does not dictate my worth.
Waking early to work out and loving my gym community, a place where I can be myself and find my joy
Talking with fellow parents who GET IT. Those conversations mean the world to me. I need to have more of them.
Set an appointment on my digital calendar that says: “peace and self-compassion.” A daily reminder to be kind to myself.
Take deep breaths.
Therapy.
20-minute naps when I can’t go on.
I place my hand on my heart and whisper affirmations.
Meditation and prayer.
I journal as if I’m addressing a friend who has been through a lot and needs to hear that I’m there for her.
Instead of suppressing emotions, naming them (and giving myself the grace to know that the emotion is legitimate).
I roll lavender scent on my wrists before a stressful school meeting or doctor’s appointment, so I can subtly breathe in the calming scent when I start to feel overwhelmed.

Modeling self-compassion for our kids

Self-compassion may feel radical to you. But, as fierce advocates for our kids, we are accustomed to being radical.

We need self-compassion, and our children need it too. “The best way to do anything for your child is to model it for yourself,” says Atkins. They will have many challenges to overcome and a model of self-compassion will be essential.

Father and daughter together looking out at the ocean

Jessica Marquardt is a CVI mom to Grace, the creator of Kaleidoscope: The CVI Podcast, and works in marketing and communications for a major software company. Jessica is a fierce CVI advocate, a life-long learner of CVI and the brain, and undeniably knows that storytelling has the power to change the world for individuals with CVI.

References

Capstan, P. & Garland-Thomson, R (Eds.) (2019). About Us: Essays from the Disability Series of the New York Times. New York, NY: Liveright Publishing Company.

Goleman, D. (1995). Emotional Intelligence: Why It Can Matter More Than IQ. New York, NY: Bantam Dell.

Neff, K. (2021). Fierce Self-Compassion: How Women Can Harness Kindness to Speak Up, Claim Their Power, and Thrive. New York, NY: HarperCollins Publishers.

Neff, K. & Germer, C. (2018). The Mindful Self-Compassion Workbook: A Proven Way to Accept Yourself, Build Inner Strength, and Thrive. New York, NY: The Guilford Press.

Shapiro, S. (2019). Good morning, I love you: mindfulness and self-compassion practices to rewire your brain for calm, clarity and joy. Boulder, CO: Sounds True.