More about communication with non-verbal children by Louise Kinross
When Queen’s University student Sam Noyek did a systematic review of studies on how children who don’t speak, write or type express their emotions, she found a gap. “Most of the research was about creating high-tech communication devices, but they were used in lab settings or a single place such as the home, and not transferrable to multiple contexts including school, parks, a grandparent’s house or clinic,” she says.
“One method that may be more authentic and feasible is the insight from parents who can pick up on a child’s unique emotional cues and signals. By not including these high-quality interpreters in research, we leave out a critical way of understanding these kids.”
Next month Sam is defending her PhD study in Rehabilitation Science. The study identified emotions in nine children and youth with severe motor and communication impairments through photos and videos of their everyday lives, interpreted by parents and other familiar people.
BLOOM: How did you get interested in studying children who don’t communicate conventionally?
Sam Noyek: I’ve always loved going to camp and in my undergrad years at Western I was looking at opportunities in volunteering and heard about Spiral Garden. I was a volunteer counsellor there. I love crafts, I love kids and I wanted to make sure kids with disabilities could have fun. One of the things that stood out to me at Spiral Garden was the autonomy the kids had. I remember participants woodworking with these tools, and being able to make choices to go to different stations and just being given space to be kids. I got an understanding of working with children with complex needs and I remember a picture communication system one child used.
BLOOM: Why was there a need for your PhD study?
Sam Noyek: This research hasn’t been done before. High-tech communication systems are really important, but what’s being done in the everyday to understand kids’ emotions in different contexts and relationships? The familiar person’s insight is often belittled and not emphasised.
BLOOM: How did your study work?
Sam Noyek: I recruited nine families with children and youth aged five to 25 who can’t use, or have difficulty using, a paper and pencil, speaking verbally or typing on a keyboard. I asked parents to take photos or videos in their everyday life that showed how their child indicates their emotions and what contributes to their emotional experiences. I received 108 photos and videos, each with a written description that really brought the participants to life. I really got to see their personalities and their preferences and who they are as people.
Before looking at the descriptions of the images, I interpreted them myself, and I had an occupational therapist, who works with children who use alternative and augmentative communication, do the same thing.
BLOOM: How often were you accurate?
Sam Noyek: I got better as I went along but it was tough! A couple of times if I saw a red face I would think ‘sadness,’ but a lot of time it was ‘joy’ or ‘laughing hysterically.’ It was interesting in the videos to see changes in body posture or vocalisations. Then I did qualitative interviews with the parents. After that I wanted to make sure I comprehensively understood the child in different contexts and relationships, so I interviewed up to five people who know the child or youth well. It could be a sibling, teacher, grandparent or friend or caregiver.
BLOOM: It reminds me of a study done here that looked at the physiological changes in children who couldn’t speak or move when our therapeutic clowns paid them a visit. There were very specific changes that happened when they interacted with the clowns that didn’t show up when the child was watching a TV show. It really brought home that so much can be happening in a child that can’t be read by someone who doesn’t know them.
Sam Noyek: This knowledge that parents have has to be validated as knowledge. Parents go into a clinic and say ‘My child is in pain’ or ‘My child isn’t well,” and the clinician will say ‘How do you know?’ I’ve had feedback from parents that sometimes that question is hard because, well, you just know! We know what our child or youth looks like or sounds like or interacts like when they’re feeling themselves, and when they’re not.
BLOOM: What were key results?
Sam Noyek: The power or importance of high-quality interpreters for this population’s emotional wellbeing. Someone who can confidently pick up on small cues. It could be one eyebrow is raised a bit to show pride. Or a tiny bit of a change in the child’s lip is a smile. These interpreters can ensure the child’s preferences are being met, that they’re doing the things they want to do and having choices. They can relay the information to other people so the child can participate in activities THEY like.
Another thing that sounds obvious, but people often overlook for children with disabilities, is the importance of interpersonal interactions for children who are non-verbal. That need is not diminished, just because a child communicates in a different way.
One theme that came up was disengagement when disrespected, or whether a child felt involved in experiences. Let’s say a child is on a walk with a parent or friend and someone passes by and says hello, but doesn’t allow the child time to respond in their own way, or maybe doesn’t say hello at all.
The child or youth may put their head down, get quieter or change their posture or facial expression. Parents say they almost ‘went within themselves’ and did not want to engage.
Something I’ve learned about, which I don’t see in other research, is all of the amazing personality traits of these youth. They’re funny and caring and kind. I loved hearing about the pranks and the funny things these children did. You really got to know them as people. Research tends to focus more on the medical aspects of physical health and pain, but not on individual characteristics and personality traits and preferences.
BLOOM: There’s more emphasis on studying problems vs. richness. Did anything surprise you about the results?
Sam Noyek: There were a couple of things that weren’t necessarily surprising, but which I found interesting. I was eager to learn about the extensive co-regulation strategies parents had with their child or youth. Let’s say the child is going to an appointment at the hospital and is nervous. The parent will tune in to that, and provide the child with sunglasses and a blanket and a hat, so that some sensory stimulation is blocked out. Then the child feels ‘I’m okay, I can handle this.’ Often the child or youth had specific music that helped calm them.
One young man is able to elevate his heart rate monitor in his room so it starts an alarm to get his parent’s attention. He and his mother call it his Ninja power. As soon as his parent comes into his room, he brings it down. He’s figured out a way to say ‘Hey, come here!’ with this alarm. It could be that he needs the TV channel changed, or that he needs help or wants to show something. This is very unique!
Another interesting thing was that people other than parents helped the individual to try new or different things.
One participant’s aunt was very involved with the church and went to a church band practice every Wednesday night. She asked if it was okay for the participant to come to church so she could try to get him to hold onto the drum sticks and play the drums. The mom said ‘Yea, sure, but I don’t think that will be possible for him.’ It ended up that the aunt couldn’t pry the drum sticks out of his hands and he went back for the next 10 years.
BLOOM: What do you hope children’s rehab professionals take from the study?
Sam Noyek: Clinicians need to validate and understand the power of the skilled interpreter’s insight, and to believe parents that they know their child best. Each child or youth has emotions that are expressed in different ways, and only by understanding these cues can the child be truly seen.
BLOOM: How can your research benefit families?
Sam Noyek: By educating other clinicians and researchers. I hope it can be used to create tools families can use that would give them a quick summary of their child’s expressions that they can share. So it might be five photos on a laminated sheet that show indicators of common emotions. However, I think parents have enough stuff on their plate already, so I’d love it if researchers or clinicians created an easy way to create these infographics. Perhaps it could be an app where it’s easy to input photos and text.
I’d love to hear from parents or family members. What are the five most important emotions you feel clinicians or other unfamiliar people need to recognise in your child or youth? Please e-mail me at firstname.lastname@example.org
To learn more about Sam’s study, check out this presentation she did recently for Luke’s Legacy Research Rounds.