Enjoying My Daughter with Down Syndrome
By Lizzie Martinez
Our second child was born with ease at home, as our first had been. But there she was, little and pale, with the almond-shaped eyes given to those with an extra 21st chromosome: those with Down syndrome (DS). Nasrine didn't latch on, and her coloring turned dusky: Several hours after her birth, we found ourselves in the neonatal intensive care unit (NICU).
Down syndrome, or trisomy 21, is the most commonly occurring chromosomal anomaly in the world. Down syndrome occurs equally in all races, ethnic groups, religions, socioeconomic groups, and nationalities. It affects boys and girls equally and can happen to anyone.
At the moment of conception, erroneous cell division causes the egg to have three copies of the 21st chromosome instead of two. The extra chromosome then becomes part of every cell in the baby's body. People with Down syndrome share some physical traits and have some degree of mental retardation. They can also have specific health concerns, such as heart defects, hypothyroidism, low muscle tone, and compromised immune systems. However, the mix of these characteristics varies greatly from person to person. Nasrine was hospitalized for pulmonary hypertension, or constricting lungs.
Our month in intensive care, and all that we saw, learned, experienced, and felt there, is a subject for another time. Suffice it to say that the time we spent with Nasrine in NICU was not only a time to grapple with the bureaucracy of a hospital—an institution that, by having a homebirth, we had tried so hard to avoid—but was also a time we spent in sadness, confusion, grief, and, finally, acceptance and love.
During that month, our community kept us afloat. My husband and I have lived in Austin, Texas, for a combined total 20 years, and we know a lot of people. Our families cocooned us, caring for our three-year-old son and dealing with the workings of our daily lives. Our midwife, G. B. Khalsa, went through every moment with us, hearing us out through all the places in our hearts that we had to go. My moms' group, the Milkmoms, sent a steady stream of meals. Fund-raisers and garage sales were held to help with expenses—we're still using much of the money that was raised for Nasrine's alternative therapies.
After Nasrine came home, we slowly emerged from our hospital haze and reentered normal life. We began her Early Childhood Intervention (ECI) services, such as physical therapy, and hooked up with the local Down Syndrome Association (DSA). Early on, we went to a picnic sponsored by the DSA and met families from all over the state. It was a great way to connect with other parents and to make tribal contacts for Nasrine. But something struck us—the meal at the potluck picnic was rife with refined sugar and fast food. This type of food isn't good for any child—or adult, for that matter. We realized that with our special-needs child, from then on we would actively pursue alternative practices.
I started calling around, following up every lead and contact. Every time someone mentioned something alternative that he or she had even heard of someone doing with a special-needs child, I pursued it. I called people all over the country and blurred my eyes reading on the Internet. I sought and found other funky parents of special-needs kids—parents of children older than mine who could pass on to me their knowledge and experiences. I knew that there was more for Nasrine out there than the mainstream books were telling me. The whole process was exhausting and inspiring. It still is.
Here in Austin we are blessed in having many experienced and caring alternative healing practitioners. In most cases, I quickly found highly recommended healers who continue to help guide us through these mostly uncharted waters.
Below are some of the things we are trying. Some we've just started, others we've been doing for a while. Some will come into practice when Nasrine is older.
* Tui Na (twee-na)—This style of massage originated in China 2,000 years ago. It stimulates organ functions and generally fortifies the person, based on gentle, repetitive stroking of different meridians. Our doctor of Chinese medicine has tailored a massage specifically for Nasrine, taking into account her health challenges. We rub meridian points for Nasrine's heart defect (she has a small hole in her upper atrium), to strengthen her lungs, to stimulate brain function, and to boost her immune system, we massage her at least once a day, sometimes more.
* Craniosacral Therapy—This manual therapy from the field of osteopathy involves gentle manipulation of the cranial bones. Children with DS have short ear canals and nasal passages, which makes them more prone to infections of the sinus and inner ear. They also have smaller mouths, which can make speech difficult. The beneficial effects of craniosacral therapy, I believe, will appear over the long term.
* Diet—It goes without saying that the proper food is essential to good health. However, we’re even more vigilant about what we feed ourselves now that Nasrine is in our lives. We don't feed our son refined sugar, conventionally grown food, or any additives or preservatives, and we definitely won't with Nasrine. One parent told me that her daughter, who has DS, has been free of infection since starting a "drying diet" of foods not considered to be mucus producers. A medical doctor told me that he had seen many children with DS just shut down once they were introduced to the typical American diet of sugar, additives, and preservatives. Nasrine ended up nursing well and now eats everything, from raw fruits and veggies to rice and beans. Because we want to keep her immune system strong and because wheat and dairy are associated with so many chronic allergies, Nasrine is a wheat- and (mostly) dairy-free kid. (She drinks unpasteurized goat's milk from a local farm. Goat's milk most closely resembles human breastmilk.) We also introduced her early on to the joys of seaweed, whose minerals help stimulate thyroid function. Nasrine enjoys ripping apart, playing with, and eating nori.
* Yoga Sonia Sumar, a yoga teacher from Brazil, has a daughter with DS and has formulated a yoga routine for infants and children that has made a positive impact on the way they grow and develop. She's written a great book about this practice called Yoga for the Special Child. There is one certified practitioner of this routine in Austin, and Nasrine attends one private class per week. But having her do the routine three times a week (the recommended amount) is up to us.
* Nutritional Supplements—These are commonly given to children with DS and are not considered too alternative. The ingredients of the supplements are based on studies showing that people with an extra 21st chromosome are chemically different in all sorts of ways. For example, one amino acid, alpha-ketoglutaric acid, seems virtually absent from their bodies. We give Nasrine a daily supplement called NuTriVene-D, which contains, among other things, alphaketoglutaric acid. We also give her fish oil and blue-green algae.
* Other Stuff—We're a loud family. We sing, dance, and play instruments together. We have a hammock in our living room that we all swing and play on. (Swinging is good for the inner ear's vestibular system, which affects the perception of body position and movement and is often weak in children with DS.) We let Nasrine go barefoot as much as possible, so that her feet touch all sorts of different textures and surfaces, which can help bring more awareness into them. We read lots of books, we don't watch television, and we roughhouse and wrestle together. And we're teaching Nasrine sign language, because kids with DS usually learn to speak later.
Sometimes it's hard to find the time to do all the things I feel Nasrine needs. I try not to pressure myself too much, but I've been known to succumb to guilt and stress. So I try to spread out the things I know to all who see her regularly; Friends and relatives are eager to help her do Tui Na, or physical play, or give her an absentminded foot rub.
Recently, with help from our community, my whole family was able to travel to Massachusetts to see Bonnie Bainbridge Cohen, a renowned movement therapist who has studied neurodevelopmental therapy and sensory integration. Bonnie has been in practice for nearly 30 years, and people from all over the world bring their children to see her. She is also the founder of the School for Body-Mind Centering (BMC). In her book Sensing, Feeling, and Action (Contact Collaborations, 1994), Bonnie describes BMC as "an experiential study of the major body systems-skeletal, muscular, fluid, organ, neuroendocrine—and the evolutionary developmental patterns that underlie human movement." Through her school, she has trained many BMC teachers, who now work with adults and children all over the country.
Bonnie had five appointments over five days with Nasrine, and she helped us get a more complete picture of how Nasrine was developing. Seeing Bonnie work with Nasrine made me realize that the services our daughter was receiving at home were good, but incomplete. Bonnie showed us aspects of Nasrine's physical movements that needed more attention and pointed out ways in which her development seemed exceptional (Bonnie felt that the Tui Na was having a profound effect).
I learned a lot from watching how Bonnie handled and worked with Nasrine. Most physical and occupational therapists are trained to see the body only in parts, but Bonnie showed us what it means to see Nasrine as a whole, integrated person—how her movement patterns work, and how they affect her brain development. For example, many children with DS never crawl, and their low muscle tone causes them to make easy choices in their movements to compensate. Instead of crawling, they end up scooting on their bottoms. However, the act of crawling is critical to development. To crawl is to wire the brain to cross-pattern, which initiates bilateral movement.
Typically, developing children sit up, crawl, pull themselves up, then toddle. But between these milestones are tiny patterns of movement that must be learned to progress to the next stage. Movements as small as rotating the hips when side-sitting—sitting on one hip with the feet curled up beside the bottom—come naturally to most children, but children like Nasrine must be taught the pattern. When the pattern is learned, the brain's wiring has become more complex.
In her book, Bonnie Cohen writes that ,"Development is not a linear process but occurs in overlapping waves with each stage containing elements of all the others. Because each previous stage underlies and supports each successive stage, any skipping, interrupting, or failing to complete a stage of development can lead to alignment/movement problems, imbalances within the body systems, and problems in perception, sequencing, organization, memory, and creativity."
There is no BMC practitioner where we live, so Bonnie recommended exploring the Feldenkrais method of awareness through movement. Recently, we met Kalila Homann, a movement therapist and counselor whose practice combines dance therapies with cognitive development. Kalila has studied with Bonnie and continues to consult with her about Nasrine's progress. I plan to continue Nasrine's physical therapy through the ECI program, yoga class, and Kalila's class—all three, once each per week. Meanwhile, I'll keep an eye open for a good Feldenkrais instructor.
I feel blessed that so many amazing people are involved in Nasrine's life. Now 19 months old, she is a shiny, connected little spirit. Except for a scary brush with pneumonia, caused when she breathed in some milk, she stays pretty healthy—even with her older brother dragging in germs from who knows where. She's curious, opinionated, quick to smile, and loves to snuggle. Most people say they've never seen a kid who so appreciates a good hug. She seems to be doing well, and for that I am endlessly grateful to our families and our community, who made it financially possible for us to begin this journey of alternative healing with her.
The flip side—the sad side—is that we live in a country that has allowed corporations to make the laws that dictate the services that should care for our people. We quickly learned that Nasrine is uninsurable—for life. Because she was born while I was covered by Medicaid, she was not considered to have been covered by insurance. If you're not covered by insurance at birth and something is considered wrong with you, you can pretty much forget about ever being covered.
Nasrine's only safety net is the risk pool, a state-run insurance pool with astronomical premiums and minimal service, set up for those who are too much of a risk and too low-income for a multibillion-dollar industry to worry about—people with HIV, cancers, and genetic anomalies. Leave no child behind? I would laugh at the hypocrisy if it weren't so sad.
Throughout my entire pregnancy with Nasrine, I had the profound feeling that something was wrong, in fact, I was pretty sure it was Down syndrome, and I told a friend as much. What I see today, now that the waters have cleared a bit, is that my daughter was communicating with me—giving me warning, helping me get ready for our path together. Her spirit chose her body, and then she chose us. What a bright, bright light she is.
Lizzie Martinez is an activist, artist, and sometime casting director. She lives in Austin, Texas, with her husband, Hawkeye Glenn, son Cosmo (4), daughter Nasrine (19 months), and daughter Paloma Maria (3 months).