The Power of Early Intervention

If you’ve ever tried to keep up with an older infant or a toddler, you know only the energetic need apply. Very young children are hardly ever still — they can find endless adventure in pulling themselves up while gripping the edge of a coffee table, walking around it and reaching for the treasures on top of it. Every object within reach is to be touched and investigated — all this typically before a child turns 1.

Children with medical conditions that affect their independent mobility are no different in their need to explore. But medical professionals, parents and funding sources haven’t always agreed or been able to keep up, which in the past has led to these children relying on caregivers rather than doing for themselves.

What impact can that passivity have on the cognitive and physical development of a very young child? And what kind of difference can early-intervention seating & mobility really make?

Early Positioning: When & Why?

The term “early intervention” has evolved over the years, as young children continue to prove they can benefit from postural positioning and in many cases can propel or drive their own wheelchairs at increasingly younger ages.

When it comes to seating & mobility intervention, the experts participating in this story agreed it’s best to let the children set the bar and to reflect, as much as possible, the development schedule that able-bodied children typically follow.
For seating, therefore, Sharon Pratt (PT, director of education, Sunrise Medical) says, “Generally, clinical practice supports the idea that the child should be allowed to meet recognized milestones, even if modified, and should be encouraged to develop stable sitting at an appropriate age. Children normally achieve momentary, unstable sitting when placed in position between 3 and 7 months. Therefore we should strive to provide our children with effective support in sitting at an equivalent age.”

Proper positioning is critical, says Amy Meyer (PT/ATP, pediatric & standing product specialist, Permobil), for both physical and developmental reasons.

“When you’re speaking strictly from a postural concern, we want to try to get that child as upright as possible: promoting extension in their spine, opening up their chest cavity and getting them more properly positioned,” Meyer says.
Meyer cites PT Mary Massery’s well-known work in explaining why such a position is important. “She says, ‘If you can’t breathe, you can’t function,’” Meyer explains. “Breathing is probably the most basic and essential function of our bodies, and anything we’re doing in a seating system needs to keep the focus that the chest cavity needs to be able to expand, the respiratory muscles need to be able to work, and the lungs need to be able to expand.”

Sue Johnson, VP of sales and marketing for Convaid, points out other practical advantages of early-as-possible positioning: “A lot of these kids have feeding issues and other developmental delays. So it’s important that they be seated well in order to participate in feeding and other therapies.”

Johnson recently attended the clinician-centered 2008 Celebrating Connections conference in West Virginia. “In this program, they’re talking birth to 3, and they’re really starting right away with therapies, many of which would benefit from the child being well seated in the first place,” she says.

Postural seating systems can also place an infant in a position that facilitates exploring and learning. When a child isn’t supported, says Meyer, “Typically what happens is gravity pulls that child forward, shoulders come down, they come into this slumped posture with increased kyphosis. Their head’s usually down. You’re really impairing a child’s visual interaction.
“(That position) definitely affects your reaching. When you’re slumping forward, your upper extremities tend to also internally rotate, so that’s going to put stress and strain on those muscles, which not only are going to affect your ability to work and reach, but also can create pain and pain disorders.”

Independent Mobility: A Whole New World

Not long ago, independent mobility for young children meant two things: waiting until pre-school or later, and getting a power chair. But mobility choices and timeframes are expanding.

Much as she believes postural seating should reflect “normal” developmental timelines, Pratt says the “ideal” time to provide mobility equipment is when the child would be expected to learn to walk: between the ages of 8 and 15 months.

“Basically, it is similar to giving children who can crawl and toddle the freedom to explore, develop and learn in safe and age-appropriate environments,” Pratt says. “Benefits also include social interaction and inclusion, which results from increasing the child’s access to the environment; increasing access to the child by peers; and decreased apprehension of others.”

Giving children the ability to actively wander and explore at that age is critical to development, Meyer says: “Kids who don’t have independent mobility basically learn to be helpless. People will do everything for them, and they don’t have the desire or the motivation to do things for themselves because it’s always been done for them.”

Gayle Scaramuzzi, a CRTS and pediatric specialist at AAA Medical, Lakewood, Colo., is co-authoring a study with Dr. Pamela Wilson at The Children’s Hospital in Aurora, Colo. The subject: manual wheelchair usage for very young children.

“There is truly no research in manual wheelchair usage and outcomes for children nine months old,” Scaramuzzi notes. “There is none; it’s all on power. Studies on power usually start at a year and a half. And they have proven that children develop through exposure, experience, curiosity, investigation, and those children are doing so much better than when they’re limited in their mobility.”

The spinal cord injury and spina bifida patients Scaramuzzi works with through The Children’s Hospital are typically put in manual chairs at 9 months of age. “In this study, what we’ll be determining will be at how many weeks after they’re in the chair do they touch the wheels or do they push the wheels forward,” Scaramuzzi says of her young clients. “We’ve broken down all the particular skills of propelling a manual wheelchair, and now we are starting to collect the data.”

Parents who are leery of placing their small child in a wheelchair are often won over when they see other children of similar ages successfully maneuvering in the clinic, Scaramuzzi says. She makes sure pint-sized wheelchairs are visible to parents visiting the clinic.

“We introduce the idea to Mom; the doctors go in, but I have the chairs there, so when they come in, they start seeing them,” she says. “We make sure that other children are there so that they can see other children pushing around. We try to do that kind of thing, so it kind of gently eases it in. I think when you come up and say, ‘We want to get your child a wheelchair,’ that’s not a really good introduction.”

Once kids are in the manual chairs, their natural instinct to explore — and to mimic what others do — typically takes over.
“We don’t do a whole lot of training with the little kids,” Scaramuzzi says. “They pretty much figure it out on their own. When they start seeing other children pushing, that does it…. If the kids are small and don’t understand what to do, I’ll get in a chair. We’ll play tag.”

Meyer admits adults tend to be leery of allowing such small children to drive themselves. “That’s probably the biggest objection we get to young, early power mobility, that they’re not going to be safe,” she says. “They’re going to continue to require age-appropriate supervision. There’s no question. You’re not going to let your two-year-old child go across the street without holding their hand, and that’s exactly what needs to happen in a power wheelchair, whether it’s through an emergency stop switch or being very close to a child in a difficult environment to navigate.”

Meyer also says it’s important to give kids the ability to control power seating functions, such as tilt.
“One of the big things is educating people about the importance of power seat functions and giving a child the independent ability not only to move and get from here to there, but also to reposition themselves throughout the day,” she explains. “We don’t sit in one static position all day long; we’re constantly readjusting. Kids who can’t do that with their muscular control can do that through power seat functions on their chair.”

Custom Needs, Custom Solutions
All the experts consulted agreed that proper positioning and mobility is important from the very beginning, even when children are small enough to conveniently fit into a general-use type of stroller.

“You put a child in a store-bought, umbrella-type stroller, and they’re immediately going to go into a collapsed position because there’s no postural support whatsoever,” Meyer notes. “Their back is going to curve. Usually those children have some asymmetry or asymmetrical tone anyway, so they’re likely to go into a kind of posture that will predispose them to scoliosis, kyphosis, deformities, tightening of the muscles. In order to visually interact, you have to hyperextend your neck. Visually, you’re having to look up, so you may have headaches…a lot of times, if these kids are non-verbal, they’re not even going to be able to express their discomfort.”

Developmentally, children can be hurt by such strollers, Pratt says. “Upon entering the world, a newborn has only two curves in his/her spine: the mid-back and the base of the spine. These two curves are called the primary or kyphotic curves. The curves in the neck and low back develop later and are termed secondary or lordotic curves.

“The curve in the cervical spine develops as the child begins to lift his head and the neck muscles are strengthened. The curve in the lumbar spine results as the child starts to crawl… These four curves — two primary and two secondary — are extremely important in the spine (both adult and child), for this is how the body handles the stress of gravity. If these curves do not exist, the body’s center of balance is shifted, causing undue stress on the spinal column, spinal cord as well as various other negative consequences. When a child does not get to experience the developmental milestones of lifting their head, rolling, crawling, etc., it is critical that the positioning being practiced in combination with therapy work together to facilitate the development and support of these developing curves. Umbrella and hammocked strollers generally do nothing to support the desired posture.”

The challenge, of course, is in educating parents, other health-care professionals and funding sources as to the importance of early intervention. That’s one of the reasons Scaramuzzi and Wilson are authoring their study.

“For the most part, the insurances have given us everything we’ve asked for and paid for everything,” Scaramuzzi says, referring to the tiny wheelchairs she’s supplied in the past. “Our state Medicaid has been paying for all of it. We just had a change of the guard at our state Medicaid, and now they’re starting to question it. But that’s because I don’t have any documentation; there’s no studies that show this is normal development for these children.”

Johnson just introduced a manual chair with a 5" seat depth, based in part on what experts have said about early intervention: “By the time they’re two years old, it’s really too late. Their cognitive development is affected by their ability to move in space. They need to be able to get around when they’re very, very young.”

Scaramuzzi relishes a story about a young client who not only self-propels her manual chair, but helps with maintenance, too.
“I had a 12-month-old who got her wheelchair, and I had to adjust it,” Scaramuzzi says. “So she was on the floor with me, and I was showing her how to adjust her chair. Every time she sees me, she says, ‘Fix chair, fix chair.’ This little kid now knows how to turn an Allen wrench.

“I think the limitations are the adults,” Scaramuzzi adds. “These kids can do it.”

This article originally appeared in the April 2008 issue of Mobility Management.

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