Julie Miller is a Developmental, Individual differences, Relationship-based (DIR) Occupational Therapist and the Clinical Director of Professional Child Development Associates (PCDA) in Pasadena, California where she works closely with the wonderful team dedicated to providing feeding services. As the former head of the Feeding and Nutrition Department, she shares a wealth of knowledge around some of the most complex challenges parents face with their children who struggle with eating for a variety of reasons. This is Part 2 in a 3-part series featuring services offered at this multidisciplinary DIR/Floortime clinic.

How the Feeding Program Got Started

PCDA is a nonprofit therapy clinic that is a completely DIR/Floortime-based agency that was created 25 years ago by Dr. Diane Cullinane and Mimi Winer, who really wanted a model that united all of the therapists who worked together. Julie says that she took for granted how fortunate she has been to expand her career learning and growing where the norm is a team of clinicians using the DIR Model versus other practitioners around the world who might be working in isolation. The transdisciplinary approach allows the appreciation of individual differences of the types of therapy and how it all supports families.

The Feeding program was created by looking at the needs in the community. Typically, Julie explains, feeding would be housed in a medical setting. It was sometimes hard for families who didn’t have specific medical needs to access ongoing developmental feeding support, she adds. On the initial interdisciplinary team they had a developmental pediatrician, a dieticians, occupational therapy, speech therapy, psychology, social workers, and marriage and family therapists. There’s about 20 clinicians on the team at any one time. 

The Feeding Program Process

When a family arrives they see the assessment team first, made up of a social worker, an occupational therapist, and a dietician. It was traditionally a developmental pediatrician instead of the social worker on the team. From this foundation, Julie continues, they ask families to tell the story of their feeding experience. 

They see a range of situations from an infant just released from the NICU, to a toddler labelled as a picky eater through to school-age children, young adults and some adults. The adults typically have a developmental disability that has qualified them for state funding, and are typically having trouble in their day programs around meal times.

The team is a developmental feeding program, which is different from teams addressing eating disorders. The clients have typically had some challenge around feeding since birth or early toddlerhood. It’s about an established stress around meal time. It might be about what meals look like.

The team uses the DIR Model as a guide in the assessment. Families are invited to bring preferred foods and a couple non-preferred foods. Just watching the family dynamics and the social exchange between the parents and the children tells them so much. 

They get hints about the child’s regulation around food. It might be a toddler running around the room nonstop, or a school-age child picking up the food and going to the corner by themselves to eat on their own.

They understand that it’s just one snapshot, so they also try to stay very calm and make sure the family and child are not overwhelmed. Everyone needs to feel safe. Then they look at the developmental capacities

Can the child share attention and engage while eating, can they have back-and-forth circles of communication, and can they socially reference others in the room and have a conversation about other things while they’re eating, or is that not what they’re interested in?

The team follows the child’s lead to see how they respond and react. They are looking for underlying medical conditions. They will make sure past medical records are acknowledged to support the home medical team for dysphagia (difficulty swallowing) or other eating problems. 

They’ll look at anthropomorphic measurements like height and weight to see if they’re getting enough nutrients for their muscles to develop and grow. Where there are concerns about low weight, parents will sometimes increase volumes of food which can lead to being too much in the longterm, for instance.

They’re also looking for children using food as a regulatory tool, which can sometimes happen when food is used as a token or reward, which is not a good foundation for one’s relationship with food. It’s about seeing how the person relates to food and the feeding experience.

FOODTIME

A few years ago I did a podcast with Jake Greenspan about their FOODTIME program that discussed a developmental approach way of approaching meals, getting children involved, and some strategies to support the process.

As the facilitator for the weekly parent support meeting for the Interdisciplinary Council on Development and Learning (ICDL), it’s rare a few weeks go by without a parent bringing up struggles around feeding. We tend to talk about sensory or medical reasons, so I asked Julie about these, giving a few examples of sensory issues around eating, but Julie adds that what presents as sensory can be more complicated.

Oral Motor Skills Once you look, you find that sensory skills really support your motor development. Oral motor skills can be similar to fine motor skills: you need a foundation of support in your body to be able to develop the others.

Food Allergies While all not children have food allergies, some children that are labelled as tactile sensitivity might have an allergy, Julie adds. The food feels different because it’s tingly or burning due to an allergy. If the adults in the room are saying, “You’re fine” but the internal sensation is that it is really uncomfortable, we have to respect that experience.

Concepts of Food Categories Then the Speech and Language team will explain how we conceptualize categories of food and language. O.T.s tend to categorize by texture, flavour and the visual presentation, but the SLPs will think about how the brain categorizes information. How can you know by the visual experience alone what the food will be? Is this a red ball or an apple? How do I know which is to eat, and which is to play with?

Food Presentation Also, fresh fruits and vegetables are very variable in presentation. A packaged bag of cookies or frozen chicken nuggets look the same every time, and parents learn to present the exact same way every time so it won’t get rejected. Children with limited diets tend to prefer these foods with a consistent presentation. Blueberries, on the other hand, Julie continues, can be sweet, sour, bigger, smaller, frozen, or mashed in a muffin. Their work is about having parents understand that it is different to the children.

The Interpersonal Aspects of Meals

All of this valuable information that Julie presented made me realize that we could do a collection of podcasts on this topic because we only have time to skim the surface of all of these topics! But what I hadn’t thought a lot about that is so obvious is how much of an impact the interpersonal aspects around meals can impact eating. If you have a parent demanding that a child finish their food, but the child can’t for any of these reasons, that can create trauma around meal time. On the other hand, you might have a lenient parent who allows access to all junk foods for fear of a meltdown.

I gave the example of my husband being apprehensive about going to restaurants because our son loves to talk a lot, and loudly. If my husband is constantly saying, “Shh…” is that having an impact? Or when our son was younger, he would knock down glasses of water, knock down Dada’s coffee, and even throw things across the restaurant if we didn’t catch it in advance, to my husband’s horror. All of these things can make eating a challenge in public, which can impact meal times in general.

The Foundation of Regulation and Safety

Julie reminisces on a developmental feeding conference they had that was a professional education conference for feeding. The participants kept saying that their videos didn’t look like Julie’s team’s and that the PCDA clients must be easier because their clients were upset and throwing things. The foundation of regulation and safety was not a part of many of these other programs, Julie quickly realized, as it is at PCDA using the DIR Model. It’s about that pyramid that shows that the foundation is regulation and safety before you can work up.

The feeding team will sometimes start with just regulation-based work first if the feeding issue isn’t causing immediate risks. If the child comes in and refuses to sit in a chair at the table, they’re not going to work on the child sitting at the table. Julie laughs that she’s done many years of sitting under the table, because that’s where the client has felt the safest. If they can maintain the interactive process and it’s safe, how ever that can happen, is what they’ll do. 

I asked about family expectations where parents might refuse to feed the child under the table, or that extended family members will be judgmental around that. Julie says that family members are always in the sessions and she can gauge the regulation–the responses and patterns–of the caregivers in the room too. She needs to know what about what she’s doing is uncomfortable or unacceptable in their family. They might do a lot of tasting with a variety of foods, for instance, which can lead to food waste that some families that might not be ok with that.

In the case of the boy sitting under the table, it was a step in the direction of getting the boy more comfortable in the routine of food and food exploration. It’s not a long-term solution. But the mother was on board, and said that this was the boy’s first experience with a therapist meeting him where he was at. The rest of his days were about being pulled along by therapists from one setting to another so she appreciated the change of pace that made her son feel more safe. It wasn’t even necessarily that her son was avoiding Julie, but it just felt more safe to be under the table where it was a bit dark and enclosed.

Consultations with PCDA's Feeding Team

Julie says that while they do some consulting outside of California, their licensure laws restrict them from practicing outside of California so it is tricky. They can, however, consult with the home clinicians (OT, SLP). They cannot be the person ‘treating’ the client.

During the pandemic, they’ve had to change to consulting virtually with their local clients, which has been interesting because the caregiver has had to take on more of a role to support the child rather than relying solely on the clinician.

In addition, she’s learned that many times, families hear one recommendation and think that that is the way to treat feeding. Julie cautions, however, that what works for one child is not a panacea. Every case is individualized and even within one case, it’s usually not just one thing that solves the problem.

The focus for the team is, “How do we decrease the stress and overwhelm for the child and family?” rather than just “How do we expand the diet?” It’s a process. It can take a lot of time to resolve feeding issues.

What Runs in Families

Julie says that often when a child comes in with a limited diet, there’s often someone in the family who is also a picky eater. It could be one parent, or both. Sometimes they still have a limited diet and will say that they don’t want their child to also have a limited diet. But that’s hard, Julie says. It’s expecting the child to have more of a variety than the parent models. It’s a bit of work with families around these types of issues. 

Affect Autism Member Question: Help! Meal time with my Kids is Really Challenging!

A mother asks what to do with her two sons. The younger child is very small and has a very limited diet, sometimes throwing up when they don’t eat enough, and is constantly moving around and finds it challenging to sit. The other is eating well, but tends to eat the same types of carbohydrates. 

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The older child will be drawing or doing other things during meal time at the table. The mother is overwhelmed and not sure what to focus on. She’s tried many strategies including having a plate on the side for food that is not liked. She’s tried making different meals and experimenting with different foods.

Julie says that she sees this a lot: where there are multiple children with different needs and the family is trying to make everyone come together. There may be similar problems around bedtime, too, for instance. She says, though, that meal time happens a few times each day and how much the parenting experience is wrapped up in the feeding experience. A parent’s feeling of comfort and confidence can be challenged.

What stands out for Julie is the experience of vomiting of the younger child. Sometimes sensory aversions around food can trigger a gag response but usually doesn’t trigger a full vomit, so she would want that to be looked at. It is a very strong sensory response. It could also be a behaviour reason, according to some. It’s not comfortable to vomit, Julie says, so maybe there could be a medical condition of reflux, for instance. It makes her wonder if the child is getting enough volume to maintain growth, even though some small children are fine and still in the expected ranges. 

Regarding the preferred food of carbs, Julie says that a part of that is a child resonating with the feeling of fullness. They give your tummy a strong feeling of fullness and they are foods that break down in saliva a lot more easily. 

Julie’s suggestions: Start without bringing out any foods they don’t eat. Work first to see if your goal is having the two children eating together. Let them eat in a shared location, having the foods they both enjoy. If the goal is food variety and the weight gain overrides the children eating together, maybe one parent will eat with one child and the other parent will eat with the other. There’s a bit more support for each child, especially with children who have baseline regulatory challenges. Focus on regulation for both children.

Julie says to look at each child’s developmental capacities. This allows you to determine what to work on. If the child is working on regulation, the focus should be on regulation. Another factor is hunger. Hungry children can’t organize themselves well. The idea of withholding food to get them hungry enough backfires. She advises not to do that. Also, sometimes it might be too hard for some kids to sit together and need to sit alone to feel safe. We need to honour our children–especially older children.

What about Bribes?

What about enticing children to eat using rewards such as promising video games if they finish eating, I asked Julie. She says there’s a difference between saying, “Let’s finish up dinner so we can move on to something else.” and “Your reward for finishing is getting to play with your Nintendo.” Instead you’re stating a limit and using pacing as a mark for the end of meal time. Sometimes children just need that clarified expectation.

Julie offers us three great reasons not to use bribes with mealtime:

  1. What if the reward is suddenly not available, or what if it’s no longer a currency that the child wants?
  2. Using rewards really puts the adult in the lead rather than having the child be intrinsically interested in meal time and having self-control. It separates the food acceptance versus the food experience, making it more external.
  3. It puts a higher stress on the child because the child is already overwhelmed and now you’re adding stress to that child. This impacts baseline regulation, your ability to cope with sensory demands on you, and it affects digestion negatively. Instead of building sensory tolerance from that foundation of comfort, you’re flooding the child’s system by adding stress to it.
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This week's PRACTICE TIP:

This week let’s try to assess the family culture of meals in our homes. Does our child feel safe and regulated at meal times?

For example: What factors might be contributing to the child not feeling safe. What are we doing that we can change to help support the child’s regulation around meal time?

Thank you to Julie Miller for sharing her time with us to give us an overview of many aspects of the complex issues around feeding in our children. If you found it useful and helpful, please do share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Also stay tuned for next week’s podcast, Part 3 of 3, where Dr. Brandt Chamberlain and I discuss PCDA’s Child and Family Counselling department.

Until next week, here’s to affecting autism through playful interactions!

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