Parenting a child with CVI is sometimes exhilarating and rewarding. Other times, it’s completely depleting. The constant advocacy, the worry, the ongoing thrum of “am I doing enough?”
In fact, parents of children with the most complex medical conditions are more than five times more likely to report poor or fair mental health and struggle to find community help, according to a study completed by researchers at the University of Rochester Medical Center (URMC) and Golisano Children’s Hospital. The study was published in Pediatrics, the journal of the American Academy of Pediatrics.
CVI can wear you down, and it’s completely OK to acknowledge that. Amanda Griffith-Atkins, disability advocate, family therapist, and mom of a child with disabilities, shares her professional wisdom and parental compassion with six essential tips to simply get through the day when you just don’t have one more ounce to give. Read on for compassion and ideas.
So often, society tells us to push through uncomfortable feelings. Self-care is positioned as healing and happy. Sometimes, though, simply identifying an uncomfortable, ugly feeling can be deeply validating. “I have a ‘feelings’ wheel-pillow in my office. It’s a little cheesy, but it’s a helpful tool to pinpoint what you’re feeling. Are you experiencing envy? Grief? Powerless? Disappointment?” she asks. “Bear in mind, there’s usually more going on there than anger or sadness, so dig a little deeper to connect to what’s really happening.”
“That feeling of sadness, anger, or anxiety? It’s grief, and it’s totally normal that you’re feeling it,” she says. After all, the birth, newborn, and infant stages that you expected are probably very different from the ones you’re experiencing, and it’s totally normal to mourn the loss. It doesn’t make you an unloving person or a negligent parent. It makes you human. “It’s important to acknowledge what you’re feeling as grief and to be compassionate toward yourself. Wishing things were different doesn’t make you a bad parent. If we could wave a magic wand and take our child’s suffering away, wouldn’t we? The grief of disability parenting is not a result of death but a result of the loss of life we once imagined: for ourselves and for our child. My advice: be attuned to your needs and emotions as you ride the waves of grief, and surround yourself with people who can support you in this process,” she says. Remember: You can fiercely love your child while grieving.
The grief of disability parenting is not a result of death but a result of the loss of life we once imagined: for ourselves and for our child… Remember: You can fiercely love your child while grieving.
Nothing’s more alienating than trying to vent to someone who just can’t hear or see you—and, really, not everyone can. “Maybe it’s a therapist, a friend, or a parent’s group. I know this is easier said than done, but even if it’s an online community, you need people in your corner with whom you can be honest,” she says. There will be days when you need the space to admit that your child’s diagnosis feels like too much.
“Our instinct is often to check out or numb. I’m not saying it’s wrong to grab that glass of wine or scroll Instagram, but is that really what you need? More often than not, I need to move my body, get outside, or laugh with a friend. I want to check out, but I actually need to feel my heart beating and remind myself that I can do this. The break I’m craving is often a break from the hard feelings, and I can find that by seeking joy or pleasure in a way that feeds my soul. Ask yourself: ‘What does that look like for me?’” she suggests.
Grounding means to be in the present moment and engaged with the here and now, Atkins explains, which can be very hard to do when you’re in a stress spiral. “In times of stress, we often move toward anxiety. In these times, you can practice grounding skills to help bring you back to your body. An example of a grounding skill is focusing on the sensation you feel when holding an ice cube. Notice the temperature, as well as how the melting water feels,” she suggests. There are hundreds of ways to ground yourself, she says, so experiment with what works best for you—no wrong answers.
“If we’re being honest, parenthood may not be going as you imagined it would—but that doesn’t mean your experience can’t be beautiful and meaningful, exactly how it is right now,” she says. “Give yourself permission to go into a quiet room, rock your sweet baby, and fall in love with them, in honor of, not despite, their disability.”
Give yourself permission to go into a quiet room, rock your sweet baby, and fall in love with them, in honor of, not despite, their disability.
You are not alone. Connect with other CVI families who get it: Join the CVI Now Parent Facebook group. Also, Amanda continues to cultivate an empowering Instagram community for parents raising kids with disabilities and complex medical needs.
Find more resources and helpful information on the CVI Now Early Intervention Series home page.