BABY SHOES: PIXABAY/SEBAGEE
Welcoming a baby is a stressful event under the best of circumstances. When that baby is diagnosed with a condition that will cause developmental delays, and a seating and wheeled mobility team is brought in, what should that team’s priorities be?
It’s a complex question with so many possible answers.
Supporting Early Development
Gabriel Romero, VP of Sales & Marketing for Stealth Products, noted a number of priorities related to a special needs child’s development.
“Look at a child who is 6 to 8 months [old],” he said. “If you see somebody holding that child, they’re cradling the neck and head area.”
For children who use complex rehab technology, however, muscles might not develop the way they typically would. “They can be low tone,” Romero said, as an example. “Even at this very early age, there’s a lot of corrective positioning that needs to be established. It’s structured positioning.”
When he first sees a very young child with cerebral palsy, as an example, “I put them into one of two groups: low tone or high tone. That doesn’t explain everything, but at least it tells me what I need to look at. For low tone, I might want to do a neck noodle, because they’re dropping their chin. For high tone, I have to be sure they’re not triggering from the sensory feedback that they can get rubbing from their face or not having their head properly supported.”
Romero also prioritizes getting the child properly oriented: “You’re really trying to understand their breathing, where their eyes are, and a lot of different things because you want to make sure that they’re properly developing. You want to make sure their ears aren’t covered up: In a car seat, the kid’s ears can be [accidentally] covered, depending on how the car seat’s positioning is working. You’re thinking about developmental challenges, and you need to consider all the senses.”
And depending on the diagnosis, such an infant might not be able to reposition himself, which could lead to issues such as flat head syndrome, which can occur when a child lies in the same position for too long.
“You’ve got to monitor [special needs children] who are not able to decide they’re not comfortable in a position so they reposition themselves,” Romero said. “Depending on the diagnosis, they can develop to a state where they show that they want to move or they want to be able to position themselves differently.”
So early-intervention positioning must straddle the line between not enough supportive positioning and too much support, which can restrict movement.
“When a therapist starts to see good movement, you don’t want to restrict that movement, because that movement is developing muscles,” Romero said. “You don’t want to ‘embrace’ somebody so much that they’re not able to utilize muscles that they have.”
Getting Parents on Board
Romero says specialized seating for very young children, including infants, is currently lacking.
“In our industry, I don’t know that there are products that cover that newborn to 1 year properly,” he said. “I think we’re missing that. That’s why some [infants with special needs] are in regular car seats. That’s a big concern for me.” Ideally, Romero said, “Car seats should have devices that are similar to what you’d get on a manual chair. It should have lateral support and proper neck support.”
Another potential challenge is getting parents to support seating and mobility plans. “We get parents who are defeated,” Romero said. “They say, ‘He’s not going to live past age 3, we’ve been told.’ That’s traumatizing.”
Romero said the youngest child he’s ever helped to assess for a power wheelchair was a 10-month-old.
“I could tell the parents weren’t too engaged,” he said. “The kid was looking everywhere and tracking everywhere and very engaged. I asked the therapist what the diagnosis was, and she told me and that he wouldn’t make it to age 3.”
From observing the child, Romero was convinced the baby was a strong candidate for power mobility. But first, he had to convince the parents.
“I told the parents, ‘I’m not going to disagree with what the [doctors] said, but I will tell you one thing: It’s amazing how independence can drive wanting to live.’ I gave the examples of other clients I’ve worked with, and the parents started getting engaged. Dad got a plush toy, and they were amazed that [the baby] was following sounds and he would stop the chair when he got to Dad with the plush toy. This kid got it; he could drive. He was using a switch and moving the power chair around, and when he saw his dad, he stopped. The therapist was blown away.”
When working to get a child involved, Romero looks for something that intrigues the infant, “like siblings, big sister and big brother playing with them. I’m watching everything as we’re getting ready to do our assessment. Parents can tell you all about them, but sometimes it’s the obvious things you can observe. So I’m always watching. I see [the child] following a plush toy and reaching. You’ve got to find something that interests them.”
Finding that something can facilitate a good evaluation, and the good news is that children innately want to move. “We usually don’t ever have a challenge with the child wanting positioning or independence,” Romero said. “It’s everyone else in the room. As a new parent anyway, there are so many things you’re worried about.”
Tracking Progress at Home
To make the most of specialized seating and mobility, Romero said parents can help by keeping track of how the child reacts in different environments and in different equipment.
“It’s so important to document,” he noted. “I tell parents all the time: journal. You should be writing down what you’re seeing in your child throughout the day. If you put them in the chair, and 30 minutes or an hour later, you start to see some changes… start documenting how they look. Their bodies are going to start to react through time, as gravity starts to affect them. Their head starts dropping back at 10 a.m. So tilt back at 9:30 and let them relax.”
This information could guide the clinical team to make additional adjustments, and it could suggest future interventions as well.
Even in a seating and mobility industry heavily invested in pediatrics, Romero said there’s a current technology vacuum for the youngest clients.
“When you’re dealing with infants, it’s a whole different thing,” he said. “They’re so small that nobody knows what to do. I really do believe there is a gap in this space.”
Ideally, Romero said, the industry would close that gap by creating solutions specifically adapted to very small, but growing bodies. Those interventions would include traditional seating and mobility, but also equipment such as car seats.
“When they’re in their parents’ hands, they’re fantastic,” Romero said about infants with special needs. “The parents are providing the shape and support that the kid needs. It’s when they go into devices that aren’t modular enough to support the child the way they need to be. You never know if they’re getting proper back support because you can’t see [through the back] of that car seat.”
A possible answer, he said, could be products such as Tarta Design’s Kid Pro seating system: “It looks like a car seat, but it’s completely open in the back. You can put your fingers through to make sure it’s making contact where it needs to, and you can shape the metal to wrap around. To me, those kinds of concepts are really good for early intervention. You start to see where the body is going to be, and this is where the therapy has to meet up with the product.”
Early-intervention seating has the potential to change the positioning path for complex rehab’s youngest users. “If that positioning is not proper,” Romero said, “as they’re developing and growing older, you’ll start to see these deformities.”