I am so pleased to host Cindy Kaplan on the blog today. In this beautiful post, Cindy talks about how yoga helped her see her daughter’s disability in a new way.
Upon entering the world, my daughter Mira suffered a brain injury. Within seconds, my husband and I were thrown into a whirlwind of unfamiliar words, a loss of our vision of a healthy birth, and an unknown future anticipated with both fear and intense love. The doctors said Mira had suffered a stroke, the result of a rare, undetected condition during my pregnancy; a few days later, they pronounced the verdict: cerebral palsy (CP).
Mira spent weeks in the neonatal intensive care unit hooked up to equipment and tubes. I spent hours every day at her side and with her on my body. Every ounce of milk taken by mouth and every tube removed took us one step closer to hope. Every visit with the neurologist, who spoke of her test results, knocked us right back down. He had no answers and couldn’t even tell us how the injury would present itself. We could only wait and see. I agonized for her future, tortured myself with clichéd images of Mira in a wheelchair, head listing to one side, unable to communicate, and isolated from the world. Only when I returned to her side could I be in the moment and see her as the absolute beauty she was—with her full head of highlighted hair, rosebud lips, and gorgeous eyes.
Once home, we opened our door several times a week to physical therapists, occupational therapists, and speech therapists. I had no experience with any of this, but I was desperately seeking any information that could help Mira. Through numerous conversations with other mothers, I learned about a variety of other treatments—some of which sounded a little out there, I must admit—that they swore had helped their kids. During Mira’s first two years, in addition to her more conventional therapies, she tried horseback riding, aqua therapy, craniosacral therapy, body-mind centering, and yoga.
Unfortunately there’s no way of knowing what therapy will work best, and besides, I’ve discovered that no single treatment holds the key. What I do know is that I will do anything and everything to enable Mira to reach her full potential, whatever that may be.
Mira is 7 now, and her CP has manifested as “spastic quadriplegia,” which means her limbs get very tight. To compensate, we have to help her move her body through its full range of motion several times a day so her muscles don’t freeze in a spastic position—something that can only be corrected through more invasive techniques. Despite all of the therapies she’s endured, Mira doesn’t walk or talk yet. But she has learned to crawl, escaping from her room in the middle of the night to try and watch TV. She communicates through sign language and eye gaze, and she can move toward and reach for what she wants.
What have I learned from trying all these different kinds of bodywork? That I need to trust my own instinct with Mira’s treatments and value the connection she has with her therapist. I now believe that connection is as important as the work itself, which is why I have fallen in love with yoga for the special child.
Sonia Sumar, a Brazilian woman who had a child of her own with special needs, created Yoga for the Special Child, believing that every child has a beautiful and perfectly intact soul, a soul capable of forming strong spiritual connections. The soul-to-soul connection between teacher and student allows yoga’s benefits to touch them both. For Sumar, the soul of a child—not her body or her illness—defines her. When we focus on the soul, she says, we are able to recognize the uniqueness, as well as the universality, of each child. Sumar never refers to a child with cerebral palsy as a CP child; she is simply a child. Unfortunately, many people in the medical community don’t think that way. I’ve met with several doctors who have discussed Mira with me without ever acknowledging that she is sitting in the room right in front of them. This is a far cry from working soul to soul. The labels and expectations these doctors projected on Mira felt like vises restricting any possibility of us forming new dreams for Mira’s future.
But Sumar believes a child can do so much more than the doctors, the therapists, or even the parents imagine. She uses no toys to engage the children but often plays soft chanting music to help them relax. “The repetition of certain sound patterns can produce a calming and healing effect on the nervous system,” she says. Sumar teaches most of her special needs classes one on one, although she does offer group classes. Unless a child can stand on her own, all students do the asanas and breathing exercises lying down. Yoga not only helps children with physical challenges gain strength and flexibility, says Sumar, but “pranayama and asana work hand in hand to balance the body and dissolve emotional blocks and negative habits.”
While I loved the premise of this type of yoga, I couldn’t imagine how it would help Mira. And then she had her first session. I distinctly remember watching as Sumar asked my daughter to reach up with her left hand and grab on to Sumar’s outstretched hand. Mira mostly held her left hand in a fist and never used it. My heart sank as Sumar patiently waited for Mira’s left hand to rise. Didn’t she know that Mira never used that hand? And, then, slowly but surely Mira complied. I was stunned, in tears, and in awe of the power of Sumar’s patience and belief. She looked at me matter-of-factly and said, “It’s not that Mira can’t use her left hand—she just needs to learn how.”
The yoga of connection
Yoga for the special child differs from conventional physical therapies because it works from the inside out. When I practice yoga with Mira, I’m not “stretching her”—I’m moving with her. It feels more intimate and less mechanical. Before starting, we chant and do breathing exercises. Mira lies on her back, and I place my hands on her chest. Each time she exhales, I push down slightly on her chest, deepening her exhale.
I often hold Mira with her back on my belly to synchronize my breath with hers; I gradually lengthen and deepen my own breath, listening for her breath to follow. I help her become more aware of her body by naming the body part I’m asking her to move, which includes identifying her left and right. When I feel she has relaxed into a pose, I point that out, so she can identify that feeling of release. I also ask her to actively participate in the yoga by explaining that I will help her but that she must be involved as well.
Often I wait for Mira to initiate the movements. When she does Bridge Pose, for example, I help get her body in the right position and then wait for her to raise her hips. Just as Sumar waited for Mira’s hand, I wait for her to process my request and then move. She needs my help to hold her feet on the floor, but she lifts her pelvis all by herself.
Many times I wish someone else could work with Mira because it’s a challenge to be mother, yoga teacher, and therapist all at once. However, when we have a good yoga session, I wouldn’t change my roles for anything. Sumar emphasizes the need to connect with your child before doing yoga (see “Getting Started on the Mat,” page 70). With connection comes trust, which lets your child relax, be present, and feel the effects of yoga resonating throughout her body.
Mira and I practice yoga a few days a week, right after she wakes up. Those 30 to 40 minutes of yoga rekindle all the optimism and love I have for my child. We both feel regenerated and revitalized. We enjoy doing twists the most. Mira lies on her back, knees bent. I gently hold her right shoulder down and move her knees to the left. Pressing my face close to her right side, I encourage her to look at me. She giggles when she finds my face next to hers. Then we switch to the other side. When Mira relaxes, her whole body feels connected to mine: Our breath deepens, our minds quiet, and our souls spread out far beyond our bodies.
Cindy Kaplan M.A., is a PCI Certified Parent Coach and a practitioner of Yoga for the Special Child. She lives in Massachusetts with her three children, ages 15, 12, and 6, her husband, and dog. This piece first appeared in Natural Solutions Magazine.