Babywearing with disabilities can bring with it a unique set of challenges. As a mother with Ehlers-Danlos Syndrome, I found that babywearing enabled me to be able to care for my baby while simultaneously protecting my fragile joints. I am an Occupational Therapist as well as a babywearing parent. Here is my story, as well as resources to support babywearing with a wide variety of disabilities.
Babywearing with Disabilities such as Ehlers-Danlos Syndrome
Like many people, I didn’t start off thinking of myself as disabled. Sure, I was super “bendy” and I always wondered why yoga was a challenge for people, but on a day-to-day basis I functioned fairly well. It wasn’t until many years later that I realized that things I do on a daily basis aren’t “normal” for most people. In 2015 I was formally diagnosed with Ehlers-Danlos Syndrome – Hypermobility Type (HEDS). Ehlers-Danlos Syndrome is a genetic connective tissue disorder. Because connective tissue is part of most of the systems in your body, HEDS can affect not just hypermobile joints, but also the nervous and digestive systems and have still other systemic manifestations. (1)
When I became pregnant, I realized that babywearing would impact my ability to parent my baby in a positive way. Babywearing research is still in its infancy, but it is clear from the millions of people who have carried their children through the ages that this is an ideal manner for transporting small humans (2). Human babies are born in an immature state when compared to many mammals, and thus need to be carried about by their caregivers for their first several years of life. Baby carriers make this easier as they allow the caregiver to remain hands-free. However, for those with physical or psychological challenges, baby carriers can be more than just a fun way to hold a baby – they may literally be the difference between being able to hold a child close or not.
Real stories: Three mothers talk about babywearing with disabilities
HEDS affects everyone slightly differently, and for me my most affected joints are my cervical spine, shoulders, hips and hands. Because my joints are so loose and unstable it can be very hard to hold and support a squirming baby or toddler in my arms without putting too much strain on my neck and shoulders. By using wraps, slings and carriers I am able to support my child close to my body in an ergonomic manner (for both the child and myself), and enjoy all the closeness and snuggles that babywearing allows.
“During pregnancy your body produces hormones to prepare itself for labour. One of these, relaxin, loosens the joints in the pelvis and for me that meant many months of my pelvis being constantly dislocated.” To help this she was advised by her physiotherapist to wrap her bump and pelvis daily. Kerry used tubigrip, which is a giant bandage, but this is a perfect time to use your wraps even before baby arrives. Kerry continues “You don’t have to have joint problems to feel the benefit of belly wrapping while pregnant. My son is currently ten months old and heavy! Without carriers I wouldn’t be able to hold him as much as I do. To walk a short distance I have to use a baby carrier to spread his weight otherwise I risk my shoulders dislocating. I use different soft structured carriers and wraps for different reasons and love being able to have my baby close.”
Nina Flowers has rheumatoid arthritis. She is another individual who I met through a babywearing group for individuals with disabilities, and she has this to share:
“I was diagnosed with rheumatoid disease when I was 21 and never thought I’d be able to have children due to the medication I needed to keep me well.
“My daughter suffered with severe reflux, and I soon realized that a pram wasn’t for us. I really struggled to push it as I have poor grip strength, creaky elbows and shoulders. It made my hips hurt. I couldn’t lift it in and out of the car. And my daughter hated it too; lying flat was not a good position for a refluxy baby! As soon as I was introduced to babywearing my daugher took her first nap in a month. My hands and arms stopped aching and I could open doors and get up steps without crying.
“I tried working with rings and buckles but wovens were the answer for us. FWCC was my go to when she was smaller as I found it distributed her weight well. However once she hit six months, I started back carrying (tied Tibetan [rucksack or koala with chest loop] is my top tip). I learnt a few techniques for getting her up there, Santa sack toss when she was smaller, then a modified ‘up onto the good shoulder shuffle’ and now she just climbs up, holds on and I wrap around her. I still exclusively carry at two years. And I will continue, but she is a very determined walker! She knows I cannot carry her in my arms, so will climb up for a carry if she is tired.
“I’m sure wearing has added to my core strength, made me fitter post pregnancy and aided my breastfeeding journey, which have all helped keep my RA under better control than without it. And it’s improved our journey together as mother and daughter.”
There are organizations that support parents and children who are babywearing with disabilities
Many parents live with an invisible disability. Ehler-Danlos is only one kind of (often invisible) disability. Those with a psychological illness or postpartum depression may benefit from the chance to hold baby close in a manner that is calming to both parties (3). Organizations such as The Carrying On Project provide baby carriers to military members and their families to share the benefits of babywearing (4).
Babywearing can also be used by those who have children with special needs. Lift Me Up: Babywearing to Thrive is an organization that provides carriers to families of children with special needs. They even have a physical therapist on staff to help work with families to select the right carrier for the given situation (5).
Babywearing with disabilities: General tips
I have learned some lessons from babywearing with Ehler-Danlos Syndrome which may be helpful to parents with disabilities of all kinds.
- Almost everyone can babywear, but they will need to learn the techniques that work best for them. I was one of the leaders of my local babywearing group in Texas, and as such, I was able to help many people new to babywearing learn to wrap or carry their little ones in slings or carriers. I quickly learned that the way that I move my (hypermobile) shoulders to wrap my son is not the way that most people are able to comfortably do so. This means that when I teach someone to wrap, I show them how I do it, and then help them work out a way to achieve the carry in a manner that works for them.
- Babywearing is adaptable! Every carry may not work for every person, but there is something which can work. For example, wheelchair users may find the buckles of certain structured carriers dig into their back due to their seated position, but may be more comfortable using a ring sling, or Onbuhimo-style with no waist buckle. A wrap can literally be used in an infinite number of ways, which allows it to be modified to fit a wide variety of abilities and challenges.
- Try different lengths and types of baby wraps. Someone with limited mobility may find a longer wrap easier to use (more fabric means you have to do less “reaching” to adjust the fabric), while someone who fatigues easily might find a shorter wrap and less complex carry easier to use. Even the texture of the wrap may play a role: a “grippier” wrap will need less adjustment, but those adjustments take more force to make, whereas a smoother wrap may need more adjustment to get the tension correct, but may be easier for some to adjust due to having less friction in the passes. My go-to carry is a quick ruck with a short, medium grippy wrap because I can put my son in this carry in less than 30 seconds, which means less shoulder fatigue for me. However, I sometimes use my longer wraps for this carry, and wrap the extra long tails around my waist to create a comfortable fabric back and abdominal support.
- Remember to change up the carry if you need to. If I’m going to be wearing my son for more than 30 minutes, I need to switch the carry so that my body doesn’t get too fatigued in any one position and cause my joints to undue strain. This means that I switch it up – we move from carries on my back, to my front to my hip to keep my body balanced. This might not be necessary for some physical disabilities, but may help with fatigue for others.
- Proper positioning of the child is still paramount (protecting and supporting baby’s airway by keeping their chin off chest, baby should be visible to the caregivers and “close enough to kiss”, the carry should be executed so that baby is not at risk for a fall). However, this can be achieved whether the wearer is in a wheelchair, has limited or extreme mobility, or uses other assistive devices.
- Seek out an Occupational or Physical Therapist who is knowledgeable about babywearing (there aren’t a ton of us out there, but there are a few), and ask for help selecting the carrier that matches your specific physical requirements. If your Occupational or Physical Therapist is not babywearing-knowledgeable, perhaps consider providing them with resources on safe babywearing (available on Wrapsody baby or other websites).
What does the research say?
When researching this article I discovered that there has been very little published on parenting with disabilities, let alone babywearing with disabilities. Hopefully in the future more research will come out that shows that even though we may be managing a wide variety of physical and mental conditions, from short term injuries to chronic illness, we are not only surviving as parents, but thriving. Babywearing can be one tool that helps overcome all sorts of obstacles, allowing us to be the best parents we can be, and keeping those babies close!
- The Ehlers-Danlos Society (http://ehlers-danlos.com/)
- Nyqvist, K., Anderson, G., Bergman, N., Cattaneo, A., Charpak, N., Davanzo, R., . . . Widström, A. (2010). Towards universal Kangaroo Mother Care: Recommendations and report from the First European conference and Seventh International Workshop on Kangaroo Mother Care. Acta Paediatrica, 99(6), 820–826.
- Reynolds-Miller, R. (2016) Potential Therapeutic Benefits of Babywearing. Creative Nursing. 22(1).
- The Carrying On Project (http://www.carryingonproject.org/)
- Lift Me Up: Babywearing to Thrive (http://www.babywearingtothrive.org/)
Special thanks to Kerry Louise Clayton and Nina Flowers for their contributions, and Samantha Mueller for assistance during the writing process.
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