DIR and Medically Complex Children: Trauma-Informed Care

Photo by Nicola Barts

This Week’s Podcast

This week’s podcast features DIR Expert Erin Forward, a speech-language pathologist and certified lactation counselor at Cincinnati Children’s Hospital. She is a part of their interdisciplinary feeding team and their outpatient setting. Erin has advanced training in pediatric feeding and swallowing disorders, early language, AAC, and trauma–specifically for medically complex children, is an Advanced DIR®Floortime Provider, and a TBRI® Trained Practitioner (Trust-Based Relational Intervention). She is also the regular co host of the podcast First Bite with fellow SLP Michelle L. W. Dawson.

Taylor Anderson is a pediatric speech-language pathologist in Tampa, Florida, who is passionate about neurodiversity-affirming care, interdisciplinary collaboration, and a play-based approach rooted in relationships. Taylor is a Basic DIR/Floortime Provider and a TBRI®Trained Practitioner. Our topic this week is DIR/Floortime in medically complex children, based on Erin & Taylor’s recent presentation at the 2024 DIR conference in New York City.

Trauma-Informed Care is Aligned with DIR

Taylor starts us off by explaining that the focus of trauma-informed care very much aligns with DIRFloortime: Connecting with a child, giving them autonomy, and building collaborative goals (Collin-Vézina et al., 2020), and doing this all in the mindset of what the child’s been through up until then, what systems they’ve been involved in, who is part of their care team, and making sure everybody is on the same page. Erin adds that you can’t have trauma-informed care without also being neurodiversity-affirming because that is a culture and experience that somebody has, which also has to be recognized. 

In any hospital setting, Erin continues, you have to overcome traumatic experiences that a child has been through. There’s a lot Erin tries to do, as a clinician, to help a child feel safe in a setting that is likely to invoke trauma. She can’t know everything they’ve been through, but she knows that experiences in the hospital are very traumatic. I shared my experience of being in the hospital with my own son for four months when he was two years old and how traumatic that was. 

I asked if she is only specifically referring to that hospital trauma. Erin said that they treat trauma as all-encompassing no matter the little or big ‘T’ trauma that refers to the ‘ACEs’ (Adverse Childhood Experiences such as violence, abuse, neglect) that children have been through. All trauma and experiences are valid, Erin says. We don’t have control over the way our body reacts over trauma, she says. She uses the metaphor of the rings of a tree. We may not always see it. She will always assume there is some trauma there and use trauma-informed care with new families. The focus is always on the family, Taylor adds.

‘Felt’ Safety

Erin says that the goal is always to have the client have a sense of ‘felt’ safety. Karyn Purvis–who developed the TRBI–talks about how a child can feel unsafe long after the trauma, even if their current physical environment is safe. It takes time to get to know the family to understand this, Erin says. I pointed out that my son may not remember his hospitalization, but his emotional system has stored that fear of bandaids.

Accepting All Forms of Communication

Erin and Taylor are both speech-language pathologists so I asked them about communication including presuming competence, promoting autonomy, and the concept of dignity of risk. Erin says that with her medically complex clients, who often spend years in the hospital–whether they’re getting a transplant or something else–they don’t have control over what happens to them. The medical team is trying to save them. We want to provide a sense of autonomy with trauma-informed practice, she explains.

We know that children who have medical disability have a higher risk of abuse, so when they say, “No“, we want to honour that. Erin noticed that a client shut down every time her and the mother started talking–even if about the weather, and the child said, “All done. All done.” Even though it was only 10 minutes into the session, Erin suggested they end so the child would be more likely to come back next time. 

Especially with individuals who have motor challenges and/or cannot speak with words, Erin says we have to make sure that every way that they communicate is being honoured and valued. This is where circles of communication play a huge role, Erin says. Communication starts as involuntary behaviour when babies flail their arms or grimace. We honour it and build attachment and attunement. For us to help expand a child’s world, that’s when we work with communication to build off of their ideas so we can help them with what they imagine. They deserve to experience the world in the way they want to. 

Autonomy versus Independence

Taylor continues that if we want a child to be independent, without support, using a communication system such as an AAC device, we might limit what they have access to. Maybe on their own, she says, they can access this, but with a partner, can they access more vocabulary and expand on this if we’re not so focused on removing supports so they can do things independently.

We can better support the person if we are supporting autonomy, Taylor says. As a Speech-Language Pathologist, her role is helping the person communicate by saying whatever they want to say, when and how they want to say it, with whatever supports are required. They are no longer writing goals for communication without supports. Requiring support to accomplish a task is not a diminishing factor, she insists. Knowing who you are and being able to ask for the supports you need is powerful, she adds.

Presuming Competence

I asked how Erin and Taylor help parents presume competence and gave my example of being so traumatized by my son’s experience in hospital as a 2-year-old, that I have just done everything for him because I never wanted to see him suffer again, and how that has robbed him of the dignity of risk and being more autonomous, now that he is a teenager.

Erin said that, as an SLP, she never fully realized that how we talk about a child and how we communicate with a caregiver affects mental health. Although she hasn’t experienced what the caregiver experiences, many have shared with her their experiences of being in fight-flight-freeze about making sure their child is safe. Erin says that her number one job is to understand a child and a family. She spends most of her time during the sessions to do that.

She shared a story about a mother just wanting to hear her child say that she loved her. Erin pointed out that while the child may not say those words verbally, the child reached out and touched the mother’s leg, and that is one way that she communicates her love. It doesn’t have to be through words.

The Importance of Play

Play is so valuable because you can release some of that anxiety about your child’s safety through play and being silly. You can give your child the experiences and emotions of going through situations in play, while the demand is less intense, without having to go through them for the first time in real life.

Parent-Child Attunement

Parents also feel defensive about justifying why they are helping their children when others judge that they are ‘babying’ their child. It’s important to educate and advocate for your child’s needs and why it might be important that you are supporting your child in ways that others don’t see as necessary. Parents often know when their children need support better than others looking in.

Taylor adds that this goes back to attunement. Parents are attuned to what their children need, and this can lead to helping to foster their child’s autonomy as well. I pointed out the whole idea of individual differences, as well, where each individual child has different needs and you don’t treat every child the same way.

The Functional Emotional Developmental Capacities in the DIR Model – FEDC 1

FEDC 1: Self-regulation and Interest in the World Erin points out that regulation can change from hour-to-hour with any of us, depending on our sensory input, the environment, our engagement, etc. Children’s regulation is affected by their medical etiologies. One of Erin’s clients has a cardiac condition with gut issues. If the child’s stomach is bothering him, she won’t get the same engagement with him that she might on another day. We have to think about the environment, our therapeutic presence, and what supports we are providing, Erin says. 

We have to learn to trust the children that we work with, Erin says. If a child comes into a session more dysregulated, Erin isn’t thinking they have to push harder. This is information. She has to wonder what happened today? She works with where the child is at in the present moment, and doesn’t expect that they will carry on from where the last session left off. 

Another big piece of regulation with medically complex children is the ones who have low arousal due to their motor differences or experiences, Erin says. Her cardiac patients might fatigue more easily, for instance. She still wants to work with them to have desirable experiences. Regulation does not mean calm, she asserts. It means that my body is ready to engage with the task that I want to engage with.

A child may want to do something that requires higher arousal, but that requires trust, Erin explains. So many people touched their body in a medical setting. The child may require tactile support to have those desired sensory experiences, so Erin will build in some experiences of positive touch first, and see their reaction to it. These are just some considerations, she says. 

I mentioned another presentation at the DIR conference in New York in March by Occupational Therapists Amy Lewis and Gretchen Kamke where they talked about an ‘adaptation window’–a better way of looking at regulation, based on the latest neuroscience. You could have two children looking calm where one is under-aroused and one is over-aroused. You can’t necessarily tell by looking at the child. 

Children are no longer labelled ‘sensory seeking’, for instance, because in some situations they might be sensory seeking, while not in others. OT Virginia Spielmann described this as a control board at a radio station where everyone has different levels of arousal in different environments. I also brought up the interoceptive awareness that can affect regulation. 

My son can now tell me when his stomach hurts and he might be about to have a bowel movement, whereas when he was younger he would get very aggressive and couldn’t articulate why, and then he would have a bowel movement. Erin says that sometimes doctors will say that a tube in the child’s nose shouldn’t bother them without understanding how it affects the child’s sensory or regulation piece. 

Erin gave an example of a mother saying that her daughter was pointing to her leg and asked the doctor to look into it, even though the doctor was brushing it off. The mother trusted her daughter and they did discover that one leg was longer than the other and it created a lot of discomfort. The mother’s advocacy helped her daughter get the required help because the mother trusted the daughter’s communication cues.

The Functional Emotional Developmental Capacities in the DIR Model – FEDC 2

FEDC 2: Engaging and Relating Taylor says that we have to keep in mind that the way a child might seek love, connection, and/or attention may look different depending on their individual differences. This is why we attune to their unique communication style and way of communicating with others. We want to pay attention to their communication cues and their way of relating with others. How is this child in this situation right now? How are they lighting up with excitement?

What does it look like when your child is engaged with you? When do you feel the most connected with your child? What does that look like? How does that feel? What are their cues? In this capacity we want to set aside our agenda and follow their lead by entering their world and seeing what is important to them. We might need to support them to get there, while maintaining their autonomy, Taylor says.

This is why Erin loves the DIR training, because you really get to see what is so hard to describe. From a trauma-informed lens, you have very little control. The medical team is making the decisions. Even Erin has a hard time, as a clinician, speaking up to a doctor so for a parent, who doesn’t have the same health literacy as she does, she imagines it can be hard.

The Functional Emotional Developmental Capacities in the DIR Model – FEDC 3

FEDC 3: Intentionality and Two-Way Communication Erin’s goal is to help the parent and child feel as connected as possible. Once a caregiver understands that that’s your goal as well, it helps them drop a wall of defensiveness. Erin doesn’t take things personally from caregivers because they come in in the best way they can in that way. She gives them grace. Karyn Purvis talks about trying to say as many times we say ‘yes’ in a day rather than saying ‘no’.

We probably say ‘no’ way more than we realize, Erin points out. How many choices are we making for our child that we don’t realize? For instance, Erin does a lot of feeding therapy and maybe she’s always giving the child the blue spoon. Maybe she will offer a red and a blue spoon, and they might choose the red one–perhaps due to a vision impairment or a preference. We want to provide every option for autonomy.

It’s so important to acknowledge every communication effort that’s being made, even if it doesn’t seem purposeful, because that builds the attunement and relationship. It’s harder to access symbolic language when a child is in pain. Also, parents will often say that the child doesn’t communicate as much at home, but Erin points out that when they’re struggling so hard to communicate all day with people who aren’t understanding them, they may just want to relax at home, because we know that our caregivers understand us best.

Children know that their caregivers understand them best and may choose to communicate by touching your leg instead, for example. Practitioners need to give caregivers permission to allow their children to communicate in whatever ways they want to, Erin says. Language doesn’t always expand connection. Sometimes it does, but this intentionality and two-way communication is where we can start to build this trust in communication.

A client would come to Erin’s sessions with an idea, and one day he came with a piece of paper. It took them 45 minutes, but they figured out what he wanted to do. It was because of the time they spent in FEDC 3 with the communication that they were able to move into that shared problem-solving at FEDC 4. 

I shared an example I found interesting. We recently went to a very familiar water park with another family who were coming for the first time, and they took my son on the water slides while I stayed and watched everyone’s stuff. The other mother later shared with me that when they approached the slide, my son knew to stand in the line up to get a raft before going up the stairs to the slide, but he never communicated that with them. They had to ask questions to get that out of him.

I had shared that example with DIR expert Jackie Bartell who wondered if it wasn’t because our kids are always being so guided by the adults in their lives, that they never have to communicate! The adults do it all for them! It reminded Taylor of going into schools where sometimes she’ll see an autistic child get up to go do something, and the teacher will say that they need to communicate why they’re getting up and what they’re doing. It just might not occur to them to do that, Taylor shares. 

The Functional Emotional Developmental Capacities in the DIR Model – FEDC 4

FEDC 4: Shared Problem Solving Taylor says that we think about sharing ideas, giving choices and the potential for building autonomy in this capacity. The child’s number of communication circles are growing because they’re regulated, engaged, and have that intentionality. This is where we are starting to see their creativity so we want to follow their lead in play, give them choices, expand, and stretch their capacities. 

Taylor continues that we want to see if they’re able to communicate their intentions and that we are attuned to those communication attempts. We can model for them. We want to help them show us their ideas and build on them. Erin continues that a child with Downs Syndrome, a feeding tube, cardiac conditions and more really loves vestibular input, but he needs support from Mom to get the amount that he wants.

They have built this beautiful routine where she helps him rock because if he rocks back and forth himself, he could hurt himself. He trusts his mother to support his body. This is also where communication devices are really helpful as well. There are kids who find something on the device because it’s something they’ve seen or want to experience. Erin will honour that. To end off, Erin shares a nice story about the son of  a fellow Floortime SLP at Play Spark Therapy.

Thank you to Erin and Taylor for sharing their work with medically complex children with us. We hope you found it very enlightening and will consider sharing this post on social media. 

Until next time, here’s to choosing play and experiencing joy everyday!