When we cast our net in search of families for our recent photoshoot, Rachel found herself inundated by friends suggesting she and 1-year-old Tesla participate. I was thrilled — not only is she a fellow member of the 5 kids club, but Rachel, who does not consider herself photogenic (though the photos suggest otherwise!), was excited to share with the world how beautiful her son is and put forth a huge effort in choosing wardrobe and makeup for the shoot.
“We do our best to model love of our earth through our environmental conservation efforts and we try to model compassion and empathy. We have our full share of goof-ups and when those happen, we apologize and attempt to teach our children the importance of forgiveness. We do the best we can; when we know better, we do better,” Rachel said. As I have gotten to know her a bit, it is so clear that this is, indeed, how she lives!
Getting to know Rachel’s family
I’ve rather enjoyed getting to know Rachel, as she shares much in common with my geeky family, like a love of Legos and an appreciation for Doctor Who (and consequently, our Chronos wrap!) and a sincere desire and daily effort to include her kids in living their family values. The greatest value she hopes to share with her children is that of compassion.
Though Tesla was born a year ago with Down Syndrome, Rachel doesn’t consider them much different from other large families. Babywearing a child with Down Syndrome can often present challenges, as the additional chromosome can bring with it developmental issues such as low tone, joint laxity, and delayed motor skills. Tesla, Rachel, and her husband Matt are continually in communication about the most comfortable transportation as they move through their days.
Babywearing and Down Syndrome
“We babywear doing everything other than driving vehicles!” Rachel tells me enthusiatically. “We garden, hike, do chores, run errands, watch sporting events, socialize with friends and family and almost every other activity I can think of while babywearing.” Tesla, like most babies his age, loves being busy with his family and often cranes his neck to be sure he doesn’t miss anything! He is happiest high up on his mama’s back, peering over her shoulder and chatting with those around him with his beautiful brown eyes.
Back carrying can be especially challenging with babies who have low tone, or hypotonia. These children don’t hold themselves upright as well as other babies might, and they have a tendency to slump into their carriers. Any carrier must offer quality support not only for the baby’s upper back and shoulders, but for the hips, lumbar, midback, and neck as well. With older children who like to have more access to their arms and hands, this can be increasingly challenging.
Many parents of children with a hypotonia symptoms prefer a more structured carrier than a wrap, such as a mei tai or soft structured carrier. Tesla, however, really prefers his mama’s soft, comfy wraps and doesn’t much appreciate the other styles of carriers she’s tried. When Rachel wrapped him to her chest in Jandrea as she shopped for flowers, what she had explained to me was apparent — he really wanted to see more.
After a few minutes, I showed Rachel how to get Tesla high and secure on her back, tightening the wrap carefully along the length of his torso in a double hammock carry. We were able to position his legs into a neat sitting position that did not spread his hips too wide, which is an important thing to attend for many babies with Down Syndrome, who are often more prone to hip dysplasia than other babies. He snuggled right in, he relaxed, and he was delightful to spend time with while his mama finished shopping and Khadijah, our photographer, did her magic work alongside them. We solved the arms-in, arms-out dilemma by securely wrapping one shoulder but leaving the other arm free so he could gnaw on his sweet, fat hands while he watched us flash our light screen.
“Honestly, without babywearning most of these babies [with Down Syndrome] would be in other baby holding devices (swings, jumparoos etc.etc) for 2-3 years. On average, they don’t walk for that long. That is a TON of mommy time and and time interacting with the world that they would miss out on,” Rachel points out.
The human brain is born waiting to be wired and molded, and touch and face-to-face time play a tremendous role in that wiring process. For a baby with Down Syndrome, who may take more of his parents’ time than an average child of the same age, babywearing becomes especially important. It allows his busy parents to care for themselves, their lives, and their other kids while meeting his needs, helping him exercise his muscles, and offering him a constant role in family life, which means increased opportunity for learning.
Additionally, studies have shown that skin-to-skin contact and cuddling with parents helps all babies, and especially fragile babies, regulate their temperature, heart rate, breathing, and autonomic nervous system in general. Babies with Down Syndrome frequently experience reflux and gastrointestinal symptoms, and again, holding baby upright can help reduce discomfort from these symptoms. Breastfeeding can also help, but breastfeeding babies with Down Syndrome can be more difficult than breastfeeding average babies. One of the great things about babywearing is that it can facilitate this touch, allow parents to hold their baby close and upright, and encourage breastfeeding while still offering parents the freedom of movement.
Life with five kids
I asked Rachel what she’s learned from her children, and the greatest thing they have taught her is how strong she is, she said, speaking not only of physical strength, but also of strength of will. “I can do anything that I set my mind to,” she said, “regardless of the difficulty. Especially if it involves one of my children.” Her family leaned on this strength after Tesla was born. “The most recent beautiful moment we have experienced as a family was bringing Tesla home after spending over 5 weeks in NICU after his birth. He was a homebirth transfer and this was so unexpected for us. The time apart from the older kids was extremely difficult, as we had never been apart before (we homeschol and dad works from home). Bringing Tesla home meant that our family could be back together again.”
It’s hard to believe, watching Rachel rifling nervously through her wardrobe with a youthful, radiant energy, that she has been mothering for 23 years. As our photographer was setting up, Rachel tossed her hair and smiled broadly, trying to relax and settle Tesla after a long car ride. “We have a rainbow theme in the house since Tesla’s birth,” she explains, straightening the rainbow leggings that cover Tesla’s pudgy legs (and which beautifully match the Jandrea wrap she’s wearing!). Then she kissed him on the forehead, smearing a bit of lipstick on his eyebrow and wiping it away. “I almost never wear makeup,” she tells me with a laugh.
It was important to me that we really highlight Rachel’s active, busy life and her love of gardening and color, so we met her at Mahoney’s Garden Center just outside of Cambridge for the shoot. Tesla wanted to simply lay his head down and fall asleep to the sound of his mama’s heartbeat, but he patiently humored us as we tossed him his brightly colored wooden toys and sang him songs. Tesla loves music and I love to sing, so it actually worked out quite well. The folks at Mahoney’s were lovely and never once asked us to put away our big shiny disk or why we were doing a photoshoot in their lovely and well-stocked nursery!
Things to know about wearing a baby with Down Syndrome
- Babywearing and Down Syndrome go together like babywearing and babies! I am often asked about it by folks who wonder whether they can or should wear their child with Down Syndrome or other special needs. My answer is, “Yes! Always wear your baby!”
- Down Syndrome presents a variety of physical challenges that vary from person to person and which can change from month to month. The following advice should not trump the expertise of the parents and medical team, who are best suited to offer a complete understanding of any individual child.
- Babies with Down Syndrome are at greater risk for respiratory problems. Following safe airway practices becomes even more important when wearing a child with Down Syndrome, and vigilance may need to continue beyond the normally recommended three month period.
- All babies need touch, loving interaction, and movement to help organize their brains and strengthen their bodies. For children born with Down Syndrome, it becomes even more important to provide the best possible environment in which they can strengthen their muscles and learn to organize their environment.
- Many babies/children with Down Syndrome have low tone (hypotonia). The implications for babywearing are that children with Down Syndrome often need more support to hold themselves upright, and may tend to slump down or curl up in a baby carrier. Correctly and thoroughly tightening the carrier, taking care not to overtighten, is essential — the carrier should support not only the baby’s upper back but offer support from tailbone through the base of the neck.
- There is much discussion in today’s babywearing world of optimal hip positioning. Often, children with Down Syndrome have increased joint laxity, meaning the joints are more mobile/flexible. Because of this, developing hips may need special care to prevent hip dysplasia, and the normal spread-squat position of approximately 90-100 degrees may not be optimal for a child with Down Syndrome. It may be important to keep the child’s legs closer together, and some creativity in the way a baby is wrapped or carried may be necessary. A child’s medical team will likely evaluate the hips and can best provide information about optimal hip positioning for any individual child.
- As babies with Down Syndrome grow, like all children, they will likely wish to see and interact more with the world. However, transitioning to back carrying with any child who is hypotonic can be quite challenging. Parents may benefit tremendously from support at either a local babywearing group or by a professional educator to ensure they are achieving an optimal back carrying position. Also, some creativity in positioning the carrier so that the child can have some freedom with his hands, yet still receive the extra support from the carrier he may need. In these photos of Tesla, you can see that we have used a double hammock carry to support him well over one shoulder, yet we have left the other arm free.
- Some babies born with Down Syndrome need increased medical support, procedures, or even surgeries during their first years of life. Parents may wish to seek the support of a professional educator if accommodations need to be made for carrying a baby with medical equipment, sutures, or other special medical needs.
- Babies with Down Syndrome frequently achieve milestones more slowly than their same-aged peers. They may benefit from extended babywearing (or “toddlerwearing/preschool-wearing”) even more than other children. Finding the best carrier for each parent/child dyad becomes even more important, and there are many individuals and organizations that can help with this.
- Many babies with low tone, including those with Down Syndrome, may become tired when being held upright, even in a baby carrier. It is especially important to remain mindful of your baby’s cues and offer frequent breaks if (s)he needs them, or to change positions more often than you normally might to avoid muscle fatigue for your baby.
- Remember that what works best for carrying any child may change from situation to situation, month to month, or week to week. If a baby carrier is not working, there are always other options.
Do you have any advice for carrying a child with either Down Syndrome or another special need? Please share it in the comments below so that other parents might benefit from your experience!
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