Pediatric Series

Early Intervention Possibilities

Best Practice Ideas for Now & Where EI Goes from Here

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ROCKET IMAGE/ISTOCKPHOTO.COM/ AGUSTINC

The dreams of expectant parents start well before their baby is born. Will their child grow up to be a doctor? A teacher? An astronaut? Will their baby travel the world? Go to college? Have a family of his or her own?

Once the baby arrives, new parents seek advice from more experienced moms and dads, who offer glimpses of the future: Have you baby-proofed the house yet? You can’t take your eyes off them once they start to crawl.

For parents of a special needs child, the path after their baby’s arrival can be different. Medical conditions alter expectations for crawling, standing and walking. The result can be a child who does not become independently mobile alongside typically developing peers.

Pediatric specialists know that delayed mobility can mean delayed cognitive development. Advances in seating and wheeled technology are helping to put independent mobility within reach for more children, and at younger ages.

But obstacles still persist.

Expectations & Common Ground

Gabriel Romero is VP of sales & marketing for Stealth Products and also directs its business development. He has a passion for bringing independent mobility to children who don’t have it and to families who perhaps have been told not to expect it.

Romero says parents routinely, maybe instinctively, pass advice to peers who have younger children, so that “a mother holding her 3-year-old will tell a mother that’s holding her 2-month-old what to expect: By the time they’re 1, they’ll start taking steps or starting to stand.” It’s common ground, he says, between parents.

But with children who are highly involved, Romero has noticed the “common ground” of milestones to expect isn’t there. Instead, parents might hear a lot of medical experts tell them what they shouldn’t expect from their children.

Romero recalls a long-ago assessment of an 18-month-old from Montana whose parents were local university students. The boy’s doctor had told the parents their child wouldn’t live past age 3.

“I could care less about what’s been said,” Romero recalls, “because I see the life that the child has right then and there.”

Romero set up “a sensor on a very small headrest and kind of a stroller-style seat that we were able to fit into a pediatric power chair and make it safe. With that client in the chair, I would click it, and the chair would move. I was looking for a reaction. Was this something that would intrigue him? I was thinking, Cognitively, can he do it? Physically, is he capable of doing it?”

The boy didn’t react.

The Impact of Motor Learning

Lisa Rotelli is the director of Adaptive Switch Laboratories. She is passionate about early-intervention mobility because she knows what very young children miss out on when they aren’t mobile.

“Kids need to be mobile for motor learning,” she says. “They’re missing out on all those motor experiences, which is literally causing secondary disabilities. It’s causing them to be more delayed because they don’t have the opportunity to get to something to learn.”

Rotelli will tell you that the ability of a small child to wander about, to run after a dog at the park, or to run away from the dog to instead pick up a pine cone, doesn’t just make for great exercise and exploration. The act of mobility itself is powerfully necessary to learn and demonstrates what the child is interested in.

“Motor learning is essential to growth,” she says. “Synapses can’t grow and connect if there’s not motor planning with a child, and if we don’t augment mobility, we’re going to cause secondary disabilities for them.”

Rotelli would like to see a new perspective on powered mobility for very young children.

“I am never going to tell a parent that we’re giving up on walking,” she says. “Never. No matter what. That will always be there, but I need your child to be involved in activities instead of standing back here, waiting. We’re augmenting your mobility. I’m adding, not taking away.”

And she adds that whatever obstacles to early-intervention might exist, the child being assessed isn’t one of them.

“I have not seen a child not be interested in controlling a power wheelchair,” Rotelli says.

Kids Want to Move

Romero agrees that his biggest concern in an early-intervention assessment isn’t whether or not the child wants to be mobile.

“There’s no doubt in my mind that the client wants to move and find a way to move,” Romero says. “That’s not the challenge.”

Remember that Montana toddler who didn’t get excited once Romero showed him how the chair moved?

“I see that [the parents] have a baby bag and there’s a toy in it,” Romero says. “I asked if that was his favorite toy, and the mom said yes, it makes sounds. I asked the dad to stand behind the child and squeeze the toy and rattle it.

“You just see the child’s eyes lighting up and sure enough, he clicks the switch and starts to turn. He turns a little bit, and then he stops because he’s trying to figure it out. But we had this chair set up to where you could stop it with your pinky if you had to. Not too, too slow where you can’t tell the chair’s moving, but I had reduced the power on the motors, so it was going to be safe.”

The boy started to move the chair again, and everyone in the room can tell what he’s thinking: Hey, that’s me. I’m doing that. He stopped right in front of his dad so they could play.

“And everybody thinks it’s a fluke,” Romero says.

Next, Romero asked the father to move and stand right next to his son, but on the far side so that the child — whose chair is only capable of turning in one direction — would have to turn all the way around to reach his father.

“And the child does it again,” Romero says.

That client from years ago could be a case study for the dos and don’ts of assessing very young children, who may not be verbal and probably have never achieved independent mobility before. Layered on top of those challenges are protective parents who’ve heard more than their share of bad clinical news, and possibly clinicians who might not think powered mobility is a smart idea for such little clients.

That means extra preparation for seating and mobility professionals who work with very young children and their families.

Best Practice 1: Be Prepared

In fact, tip #1 is to prepare for your assessment — and preparation should start well before you meet the client for the first time.

Romero says it’s not enough to show parents and therapists the technology you’d like the child to try. Before you do anything, you need to anticipate what’s likely to be their top concern: safety.

“I envision a parent coming in, carrying their child, and I’m saying, ‘Give him to me, I’m going to put him in this crazy device that I’ve told you nothing about.’ I’d rather win the parent over by being able to clearly explain,” Romero says.

That includes setting up the chair for a demo with a very young first-time user.

“I have everything prepared beforehand,” Romero explains. “Preparation is key to early intervention. I’ve seen people who haven’t prepared the chair not to turn fast, and the child just gets spooked. If somebody with cerebral palsy goes into tone, we’re done. We might as well all leave. Because the child is thinking, I’m not going to jump on a roller coaster when I don’t know what the roller coaster does.”

Romero prefers to set up the chair to move slowly enough that a parent or therapist can effectively stop the chair just by placing a foot in front of the tire. And he likes to demonstrate that fact using an empty chair.

“I’m going to give you safety tools,” he says. “If I grab the back of the power chair, I can stop it with my pinky. I say, ‘Go ahead, Mom, try it.’ The child’s not even in the chair yet. I’m showing them the safety [features] because if I don’t have the buy-in in the beginning, it doesn’t matter what I do. It doesn’t matter if the child starts quoting Shakespeare, the mom is going to say, ‘I don’t feel comfortable with this.’”

Best Practice 2: Repeat and Repeat

While Rotelli says she’s never seen a child be uninterested in operating a power chair, she admits, “I definitely have seen clinicians and people not believe that [children] understand they’re doing it. Or that they understand that they’re going to be able to. I think a lot of time in assessments, we’re looking at the ends instead of the beginnings. Training for mobility is essential, and something we do not understand at most levels.”

Rotelli equates the mobility process to learning a new dance. “You take your partner and go to a lesson; you’re going to learn to do the rumba. You don’t start with the teacher showing you and then saying, ‘Okay, do it.’ You’re shown three steps, and then you back up and you repeat it and repeat it. And once you have that down, you add the next thing and then you go back to the start. And then you add those two things together. Then you go back to the start and add a third thing.

“That’s how we learn as human beings. We completely forget that when we’re trying to teach somebody mobility.”

In addition to being ready to repeat steps, Rotelli works hard to ensure the child is quickly successful.

“At the back of my mind, my only job at that assessment is to get the other people involved with the child to believe that they can [work the chair]. So my job is to make sure that it’s easy and successful and not scary to that child. I don’t care if I believe they’re going to be a joystick driver [eventually]. With young children, I always start with switches, because then I can separate out what they’re doing, and I can give them one thing at a time.”

Rotelli believes a joystick can be “too much information for someone who’s never used one before. It’s too hard to control exactly what you want it to do. With kids 2 and under, it’s It didn’t do what I wanted it to do, so I want to throw it. You lose their attention that quickly. So I need it to be, no matter what, successful. We go a very short distance, and then back it up and do it again. It has to be something that gains their interest. And then we’re going to grow and go from there.”

Best Practice 3: Keep It Simple & Familiar

Both Rotelli and Romero prefer pediatric assessments to take place in a space the child is comfortable in and — surprise! — in a small space rather than a big one.

“I’m in a tight room, and I’m asked if I want to go out into the hall,” Romero says. “And I say, ‘Nope, I really don’t.’ I start talking about safety and say, ‘This is what we’re going to do today.’ Our expectation is not that we’re going to land someone on Mars today. Our expectation is we’re going to find a solution, we’re going to find positioning, and we’re going to have movement. I explain that we’re turning in place and doing it all in this room. If the child figures it out quickly, then we’re going to give him another direction. Now he’s moving in the opposite direction! Wow! You pushed him in here in a stroller. We’re not going to set expectations to land on Mars today. Instead, set expectations to get safety taken care of.”

Rotelli also prefers small, comfortable areas so the child isn’t distracted or intimidated, and she makes sure the focus is not on the chair, but on what the child can accomplish with the chair.

“The goal here is to not make the chair the activity,” she says. “There always has to be another activity involved. So if I know that they like puppets or they like balls, the goal for that child will be to get to that ball. I’m not going to keep telling them, ‘Hit the switch, hit the switch.’

“[Children] can’t understand how this mobility will help them in their life. But they can understand, I want that ball. I’m going to help them to get it. I never say, ‘Just go drive,’ especially to young children. I don’t want that chair to get all the attention. The attention is on Look what you can do!”

Rotelli also aims to keep directions and language simple, in line with what you’d say to any other toddler.

“I try not to talk about turns or straights,” she notes. Instead, she says, “They can go over here, or they can go over there, or they can come here. They don’t know what turning is, or what left is or right is. No under-2-year-old would. The message is Come here, and this chair is what does that. We have to get down to the most basic, simple level for success.”

If all goes well, the child is learning in a fun, stress-free environment, with no one yelling Stop! (Rotelli: “If I’m worried about what’s happening, I turn the chair off. I try my hardest not to yell. Because if he’s got cerebral palsy, he’s going into extension, and it’s going to get worse. I don’t want them to get scared.”) But Rotelli also likes to leave children wanting more: “I want them to want to get back in [the chair], so I want to take them out before they want to get out. I want them to want it.”

Where Early Intervention Goes Next

Asked what she hopes the future of early-intervention mobility will be like, Rotelli cites the concept that motor learning is critical to cognitive and social development.

“A power chair can augment,” she says. “Mobility can teach that. That’s what it is: a therapeutic tool to help a child grow and learn. That’s how I see powered mobility.”

She would also like to see pediatric power chairs be more family friendly.

“In the world I’d love to live in, people would understand mobility,” she says. “A power chair is not a car for a kid. It is essential to their development and learning, and we’re not moving them forward without it. I hope we come out with chairs that families can manage. No family that has a 2-year-old should have a 300-lb. power chair. It should be manageable, pushable.”

Without an easily manageable pediatric power chair, Rotelli says, parents are more likely to carry their child rather than giving him or her the chance to be independent.

“We’ve got to help families out,” she says. “I think [overly large chairs are] a barrier for families, and I don’t blame them.”

Romero talks about the psychology of alternative driving controls and mobility. He believes that parents need to feel safe and need to understand the process before they’ll give their children the chance to be independently mobile.

“There’s an unknown black hole there for parents,” he says, referring to their expectations for their child. “Every time I’m at a show and I’m talking to parents who have a child in a stroller, I ask, ‘Have you considered [a power chair]?’ And it’s ‘Oh, no, no.’

“I say to the mom, ‘Just as they would get into a Power Wheels, they’re going to be in something safe. They’re going to be in something you can control. There are so many variables we can control, from safety switches to remotes to setting the power to where [the chair] won’t damage walls in your home because it’s crawling. When your other children started crawling, you didn’t just leave them alone. You paid attention. You’re going to do the same thing with [this] child as they’re developing and learning this movement.’”

When it comes to early-intervention mobility, it’s just as much about the parents as the child — and just as children learn, so must their parents.

“A parent [typically] goes from holding a child to now you’re crawling away from me, now you’re walking away from me, now you’re running away from me,” Romero says. “But that whole psychology for our parents goes from they’re holding their child in their arms to now they’re running away in that power chair. The parents had no in-between steps. I try to show them that we do have in-between steps. Look at this: All they’re going to do today is turn in place. I want them to be able to hear a sound and turn toward it; that’s exploring. That’s developing a mind.”

For kids with independent mobility, the sky’s the limit. And that freedom can start with just turning to investigate a sound.

“Then the parent thinks that’s cool,” Romero says. “My ultimate goal is to illuminate any kind of opportunity the child could have. And I will explain the steps it will take to get us there.”

This article originally appeared in the January 2017 issue of Mobility Management.

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