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Back when middle school was still called junior high, there was no distinctive name for the period starting approximately in fifth grade and going through eighth grade, even though developmentally, it was a time of such change. Remember? What your friends thought suddenly became much more important than the opinions of Mom or Dad. Teachers expected you to move among different classrooms throughout the day while carrying the correct books from a locker whose combination you kept forgetting. You had a little more freedom, but everyone expected so much more from you, too. And you had to negotiate all of it while experiencing the rather bewildering and sometimes embarrassing symptoms of puberty.
Of course, all of that is still true, but now there is a name for those kids — tweens, a shortened form of between, as in between childhood and adolescence, and also a play off the word teen. It’s a loosely defined period starting at about age 9 and ending when the young person becomes a teenager, though sometimes tweens are considered synonymous with middle-schoolers, who can be 13 or 14 years old.
Thanks to changing bodies, changing expectations, changing environments and evolving social, emotional and cognitive skills, tweenhood is a transformative time in young people’s lives. All those factors can also make it a challenging time for tweens, their families and, in the case of tweens who use seating & mobility equipment, the professionals who work with them.
Growing Up Overnight
Humans go through two major periods of growth in their lives: from toddler to early school age, then from late childhood to adolescence — including tweenhood.
That’s a challenge enough for parents trying to keep their refrigerators stocked and properly fitted shoes on their kids’ ever-growing feet. But it’s an additional challenge when the child is a wheelchair user — and when funding sources expect a wheelchair being fit for a fourth grader to still be functional in eighth grade or beyond.
Further complicating the picture is that tweens with special mobility needs may grow differently than typically developing peers.
Michelle Lange, OTR, ABDA, ATP/SMS, says of wheelchair-using tweens, “Part of the challenge is depending on the diagnoses, a lot of children can have either precocious puberty, where puberty starts early, or sometimes puberty can be quite delayed. So sometimes when we’re doing a seating & mobility evaluation at this age range, I need to rely on the medical team to let me know if they’re noticing onset of puberty — certain physical changes that they’re looking for. And if I think puberty is imminent or just starting, that’s telling me that there’s a really good chance of a sudden growth spurt.”
Angie Kiger, M.Ed., CTRS, ATP/SMS, marketing channel & education manager for Sunrise Medical, also looks for clues via the client’s family. “It’s helpful to understand how growth spurts impact a client’s body related to genetics, diagnosis, nutrition, etc.,” she says. “For example, having an idea of the heights of parents, grandparents, and/or siblings may help with determining how tall the client may grow. If there is an older sibling of the same sex, ask the caregivers how (onset of puberty, length of time for growth spurt, how much, etc.) that sibling developed during the tween years.”
While adolescence generally means growth both in height and in width and weight gain, Lange says many pediatric wheelchair users experience more of the former than the latter.
“It depends tremendously on the diagnosis,” she says. “I work with a lot of kids who have cerebral palsy, and those kids often just don’t get hips. They stay really, really lean. With kids with muscle diseases, it depends on the muscle disease. If you’re working with someone with spinal muscular atrophy, they have a very different body shape [than kids with other diagnoses].”
What is more often an issue, especially for tweens with cerebral palsy, is the orthopaedic effect, Lange says. “When you have a teen with high muscle tone — teens with cerebral palsy or traumatic brain injury — now you have a child who’s suddenly growing, and their tight muscles can’t keep up with the bones. So typical teens might complain of growing pains because they are growing very rapidly, but the muscles and bones grow together. When someone has tight, tight muscles, those muscles are being stretched as that growth occurs, and it can influence the growth of the bone. So that’s where we get orthopaedic changes.”
Lange adds that these issues are more common in tweens and teens than in very young children, whose tone often isn’t as severe at that early age. “But during the teen years, that’s when we can see big changes occur at the spine and sometimes at the hip. And that’s where some of those orthopaedic surgeries start occurring, too.”
Growth spurts can also require other changes that aren’t so obvious as seat width and depth.
“Our arms work a certain way to reach out to something like a joystick,” Lange says. “But now I’ve suddenly grown and those little arms have changed. It’s not uncommon at all during the teen years for access to change. I see a lot of teens who used to use one type of access method let’s say for their power chair or for their communication device, and suddenly it’s not working any more. We need to make a change.”
And Lange pointed out another group of youngsters typically experiencing major changes in their tweens and early teens.
“The other kids who change during those years are kids with progressive conditions and where the teen years see a lot of action are with guys with Duchenne muscular dystrophy,” she says. “Those boys are, depending on the individual, ambulatory for awhile. Then they might end up in manual mobility for awhile. But during those tween years, they are perhaps going into their first manual chair or moving from a manual into a power chair. And then throughout the teen years, perhaps you’re going from ‘I’ve been able to use a joystick’ to — depending on the boy, sometimes in the teens, sometimes in the late teens — ‘The standard joystick is too hard now, and I need to change to a mini joystick or something different. Maybe I didn’t need power seating before, because I could wiggle around some, but now I do. I might even be adding a ventilator to my chair base.’”
Growing Ultralightweight Chairs
For tweens propelling themselves in ultralightweight manual chairs — or for younger kids being fitted for ultralight chairs that will need to last into their tween years — the challenge is building in enough growth without hindering independence, says Brandon Edmondson, OTR/ATP/CRTS, director of clinical sales for Permobil and TiLite.
Independent mobility can be a growing challenge for tweens now expected to navigate much larger middle school campuses after typically spending their elementary school days in single classrooms.
“Growth for me has always been more about length,” Edmondson says. “I worry more about length than width. We do a lot of camber, backrest tapers, just a lot of things to keep the wheel presented to the client so they can push.”
Keeping the rear wheels optimally positioned is mandatory to achieving, then preserving efficient propulsion as the child and the chair grow, he adds. Edmondson explains his priority for kids using ultralights: “They have to have 80 percent of their weight on the rear wheels, they have to have a stable front end, and they have to have the wheel where they can reach the handrim.”
As far as building in seat depth, Edmondson says, “Lengthwise, for those types of chairs, everyone focuses a lot on frame growth and how much you can move your back posts back on your depth-adjustable back. There’s [also] the opportunity to double that growth amount with backrest hardware. All of the backrest hardware, it doesn’t matter whose we’re talking about, can be reverse mounted. You’re generally not limited on an adjustable axle on most of these rigid chairs now. So you can push the axle forward as far as you want, keeping that wheel with them. Your 2″ of back post movement — you usually have 0, 1 and 2 to grow your depth by 2″ — can turn into 5″ by just flipping your hardware around and just slowly letting them slide the backrest back.”
As the tween grows and the ATP or clinician makes adjustments over the years, Edmondson adds, the chair’s configuration will begin to look more typical.
“You’ve got to have the frame length so you have front-end stability; it pushes that caster out,” he says. “But you generally kind of butt your seat depth up right to them, not so it hits the back of the knees, but right at the knees, not interfering with their foot positioning. Generally for an adult, you’re going to leave a little more space. So you’ve got [the tween user] butted up, 5″ of movement between back and back posts, and once they’re fully back, then they have a little bit of frame length to grow into because you’ve extended that. And eventually you get an inch or two of space between the seat and the back of their knees, just like you would have an adult fit.”
Building an adjustable system that remains optimally functional throughout is tricky: “The biggest mistakes I see are people who try to do that and they don’t extend their frame length, so they end up with a very forward, tippy chair,” Edmondson says. “Or they pick a chair where you can’t move the center of gravity as far forward as you need to — generally, [folding chairs] that are boxed in by frame uprights. You have two frame uprights in the rear of your folding chair, and you’ll only have about 3.5″ of center of gravity [adjustment] in your rear wheel. [With a] mono-tube rigid or a dual-frame rigid, you can slide infinitely forward. The mistakes I see are where [seating professionals] use the back to really grow it, but they don’t extend the front, so they’re forward tippy — if the chair hits a crack, it wants to flip forward. Or you’re boxed in by that rear center of gravity, so you try to push the back forward, but you can’t make the wheel go with them, so now their wheels are really far back.
“You’ve given them all the growth, but they can’t reach the wheels. They don’t have their weight on the wheels, you’re caster loading, it’s hard to push and turn.”
As for width, Edmondson understands that it’s tempting to build in too much, often because ATPs or clinicians are thinking back to that one case years ago in which a kid outgrew his wheelchair’s width. “But you can’t,” he says. “Usually, you’re leaving a little bit of width room: If you have a kid who’s a 12, you may go with 14. You don’t need a ton. Two inches is plenty, but you have to use camber. You have to present that handrim to them so they can keep their shoulders in tight. I really never worry about width. I worry about being too wide in the beginning.”
Because of all the additional propelling middle schoolers have to do, Edmondson advocates for power-assist systems.
“I’m a big believer in power-assist when they get to those bigger campuses if they’re really having a hard time and they’re exhausted,” he says of tween clients. “Mostly what I monitor or what I ask parents to monitor is [kids’] energy levels. A lot of the kids pushing around ultralights, they can do it, but are they completely spent at the end of the day when they have extracurriculars and homework? How much energy are they using?”
Power-assist, perhaps just used in certain circumstances such as at school and in larger areas, can help preserve a tween’s independence.
“I just don’t want kids getting pushed at school,” he says. “I think it goes much deeper. It’s limiting socially. I think power assist is the biggest bridge to that now.”
He also emphasizes the need, especially for kids, to have extremely lightweight manual chairs to propel.
“You don’t have a 200-lb. guy pushing around a 200-lb. chair,” he says, in explaining why he doesn’t want a 70-lb. fifth-grader propelling a chair that nearly equals his body weight once all the seating components are added.
Lange points out that beyond a newer, probably larger campus, tweens typically experience major changes in their daily routines upon arriving at middle school.
“Younger children usually don’t spend as much time in their wheelchairs,” Lange says. “They’re getting transferred in and out a lot. They’re getting moved to standers, they’re getting moved to gait trainers. They’re in and out because they’re small. As those kids start getting bigger, they all of a sudden go from ‘We used to be able to just have one caregiver transfer them. Now it takes two. It’s just not working.’ And the student has a lot more to do during the day. If I’m in seventh grade, I’ve got to go to math and social studies and science. And I’m getting bigger, so a lot of those alternative positions don’t happen anymore at school, or it’s much more limited.
“I’m convinced that [tweens] spend far more time in their wheelchairs at one time. Now weight shifts and comfort become really important because I’m not getting out of my chair as frequently and maybe not for as long.”
Kiger suggests that seating professionals ask about their tween clients’ daily routines. “Addressing where and how a wheelchair will be utilized should be brought up early in the evaluation process,” she says. “I have found teacher assistants are especially helpful in these cases, because they are with the clients the entire day, assisting with classroom activities, transitions and for activities of daily living.”
The Age of Discovery
Working with tweens as they venture into the larger world can be highly rewarding for their seating & mobility teams — but it’s probably not for the faint of heart. After all, tweens in wheelchairs are experiencing many or all of the emotional and social tribulations that their peers are.
Lange points out that many of her clients are “not as socially aware” as other kids their age, due to cognitive issues or fewer social interactions thus far during their young lives. She worries that inexperience could raise their risk of being sexually harassed or abused, even without their realization. Or sometimes, a kid who literally has difficulty controlling his hands due to spasticity or other muscle tone issues is wrongly accused of reaching out inappropriately toward classmates.
And then there are those times Lange gets called by a school administrator or a parent because they’re not sure whether a tween is having trouble operating a wheelchair…or is just being a tween.
Lange remembers a long-ago client in middle school: “She was really excited about all the cute boys at her school, and she was taking a long time to get to her classes. So [school officials] thought she was having a hard time driving her power chair between classes. Actually, she was a very good driver, but every time she saw a boy, she stopped and stared at him. She wasn’t getting to class on time, and what it came down to is that she was much more interested in boys in the hallway than she was in math class.”
Lange laughs good naturedly about the calls she sometimes gets regarding her tween clients, but in the end, she still finds them an intriguing group to work with.
“They’re very energetic, they’re very passionate, they’re not too worried about acting cool like the high schoolers,” she says. “So half the time they’re still acting like little kids, and half the time they’re trying to fit into their big shoes.”