We were recently asked to write a guest post about using Baby-Led Weaning to transition to solids for infants with Down syndrome for the awesome mamas of Able Appetites (IG: @ableappetites) which is a fabulous resource dedicated to providing parents of children with Down syndrome feeding support and ideas. This post contains much of the information from the posts we wrote for them, plus more depth info about using BLW with kiddos with special needs that we just couldn’t fit into a brief Instagram post.
Baby-Led Weaning and babies with special needs- are we sure that’s a good idea?
We stumbled on this method over 10 years ago and knew it was a game changer for most infants- especially those who were following a “typical” developmental progression. We realized pretty quickly that this method also had potential in our therapy practice with infants who had developmental delays, medical complexity, and special needs—but also knew there was no research to support this and many of our colleagues were against it.
So we stuck to using BLW with babies who are considered “typically developing” right at first. The incredible success and intuitive nature of BLW spurred us on though, to try this method with many of the infants we worked with at the hospital—many of whom had both high medical complexity and developmental delay.
We knew from our understanding of oral motor development and swallowing physiology (over 10 years each of doing Modified Barium Swallow Studies) that this method has risks but also could be both safe and highly effective for certain infants. We also witnessed first hand that most of the babies we worked with who were 6-18 months were struggling with purees (gagging, refusing) OR loved purées and we’re flat out refusing to move beyond purées to chewable foods. Something had to change for these babies or we had to accept that they were just inherently going to struggle with eating and were less capable of learning to chew and eat solids. We saw the incredible potential in our clients and couldn’t accept that these bright and adaptable babies were just incapable of learning to chew or that it was “unavoidable” that they would struggle with the transition to table foods. We felt strongly that the way the medical community was recommending babies with special needs transition to solids had to be at least in part to blame. So we started trying BLW—cautiously and slowly at first.
One of the first infants we used BLW with was a 7 month old girl in the Bone Marrow Transplant unit where we worked who wasn’t sitting up yet, who had been refusing bottles and had recently started gagging at the site of the Gerber baby food jar that the nurses were attempting to feed her. The very first time we brought in a tray of real food (steamed broccoli and strips of steak) she just looked at it and then at us and did nothing- no gagging but also no reaching out, no interest. We worked on getting her well positioned and then we started modeling by slowly picking up a piece of food and taking bites ourself to show her what she was supposed to do. Within one session she was independently picking up food and putting it in her mouth without any gagging! She was also using all the same protective reflexes we expect to see in typically developing babies to offer some protection against choking, to protect her own airway. We knew immediately: Baby-Led Weaving can work with babies who have developmental delay, who have complex medical needs, and/or who have special needs.
And after nearly 10 years of seeing this in action with many infants with varying medical diagnosis and levels of developmental delay, we know BLW can be used by many infants with special needs AND certain issues and diagnosis are especially amenable to good feeding outcomes when families use BLW and when we used BLW as a part of the therapy program.
To justify the use of BLW with children who have developmental delay and/or special needs, we pull from the research on reflex integration, oral motor development, motor learning theory, sensory integration, and disabilities studies to back up our reasoning.
Why it's so important to consider using BLW with children with special needs, developmental delays, and hypotonia
1. Kids who are developing along their own timeline are at much higher risk for feeding difficulties. As noted above- some studies find that up to 80% of children with developmental delay and special needs have some level of feeding difficulty. Either you have to believe that these infants are inherently going to struggle with transitioning to solids and learning to chew OR (like us) you need to start questioning the way we are teaching babies with developmental delay, such as those with Down syndrome or premature infants to eat by using the traditional spoon-feeding “Gerber” method and wonder if maybe it is not the right approach for many infants with special needs. Maybe spoon feeding purées and using puffs is the issue- NOT our kids with special needs.
2. Eating is an incredibly complex task engaging pretty much all of the senses, some 30+ pairs of facial /neck muscles, trunk and breathing muscles, and multiple regions of the brain, in a swift and synchronized act. It’s challenging! Even if many babies naturally learn to eat between 6-15 months, it’s easy to see why some (especially those who are developing other skills at a slower pace) might need more time and practice with learning the skills of eating a wide variety of foods.
3. Neurotypical kids master skills needed to eat a wide variety of foods over the first SEVEN years of life and beyond (Pados, Thoyre, & Park, 2018). So even though we start the transition to solids at around 6 months, it will take the average infant somewhere between 2.5-6.5 YEARS to develop efficient and well coordinated chewing skills.
4. If it takes the average child several years to develop their skills, kids who are developing along their own timeline often need significantly more exposure and consistent practice to learn and master chewing skills. They need us to give them this time and to not impose our desires to rush them along in their learning.
5. Children with developmental delays may struggle with “generalizing” skills, which means taking a skill from one context and apply it in another context. We suspect that many children struggle to progress from spoon feeding purees to chewable foods in part because of this difficulty, because those two activities are quite different. Therefore in order to learn to chew, a child who has trouble generalizing would need to actively and consistently practice chewing- not spoon feeding purées. If you take this a step forward, these same children will need to practice chewing resistive and challenging foods to learn to eat the healthy family meals we serve (the healthiest foods are often challenging to chew) puffs, baby mum-mums, teething biscuits that melt in the mouth - those wont teach chewing skills!
6. Kids with special needs are often given significantly LESS opportunity to practice chewing because they are often late to develop sitting skills and fine motor control to self-feed. So while peers may have been practicing chewing since 6 months, a child with developmental delays may not start until 9-12 months or beyond. This late start may also be compounded by avoidance of real whole foods due to anxiety either from the pediatrician or family about the potential for immature skills to lead to choking.
7. We can hypothesize that kids who have more practice chewing and developing oral motor skills, even kids who have developmental delays, will improve their oral motor skills and their ability to eat a wide variety of food safely and reduce their risk of choking over time. Infants learn to walk through hundreds of thousands of repetitions and many falls- they don’t just go from no walking to walking without all that practice and exposure. same goes for babies who are developing a little differently than other babes.
8. Research shows that there is a “critical window” for interest in flavor between 4-6 months and another for development of chewing skills between 6-9 months that, when missed make it more challenging for the infants to learn to accept a wide variety of flavors and to chew. As we noted above- many infants who were born prematurely and many babies with special needs will not start solids until 6-9 months and will not be offered chewable food until well after 9 months if they are following the recommendation of their pediatrician and the recommendations of many feeding therapists. This puts them at an immediate disadvantage.
9. Babies with special needs or different developmental pathways need opportunity to build independence and parents need opportunities to see their baby as successful and competent. Self feeding is an excellent place to start. Babies with developmental delays, syndromes, medical needs, etc are unique, whole, perfect, adaptable, and infinitely capable. Parents deserve to see all the things their baby can learn. more than likely the baby with developmental delays will not be meeting milestones at the same pace as peers and that subconscious message to the parents: your child can’t do that yet, your child needs help from you... it’s pervasive and it makes it difficult for parents to see where the infant is capable and can do something without help.
So if you're going to offer solids to a baby who does not yet show readiness signs, you'll need to modify the activity to bridge the gap between the skills that baby currently has, and those needed for exploring, tasting and eating solid foods. We are going to dive into that in our next post, so subscribe to our emails (at the bottom of this page) to make sure you don’t miss it and check back often as we put up a new post (nearly) every Tuesday. Or if you’re a therapist craving more information on why and how to use BLW with infants who have special needs, you can sign up here!