Pediatric Series: Early-Intervention Positioning

Proper Positioning from the Start

MM: Gabriel Romero is the director of sales & marketing for Stealth Products, manufacturer of specialty positioning components and hardware, including many products for pediatric seating & mobility. Here, in his own words, Romero describes the challenges — and rewards — of working with families of kids with special needs.

GR: Families don’t always know what to look for, and we can’t put all the responsibility on therapists and ATPs. Everyone has to be proactive. I’m a very strong believer in educating families, because the family is going to be with the child for the longest periods of time.

When I say “educating them,” I just mean knowing what things to look for — not to actually make changes. I’m not taking that power away from professionals who should really work on that.

MM: He gave an example of a recent meeting with a father of a young girl with complex positioning needs. She was already in a chair that had positioning components.

GR: I started talking to the dad. I asked how long she could be in her chair, and he told me, “Only two hours.” That wasn’t very functional, because she’s at school, which means they’re picking her up and putting her in a recliner, which doesn’t give her the proper positioning. What was amazing to me is that this gentleman really relied on the product that was given to him to be the product that he needed.

I didn’t do a mat evaluation or anything, but I could see that her armrest was too low, so one arm was hanging off . And guess which arm it was: It was the arm where the scoliosis was leaning to. There was no support there.

So I asked him: Do you have a tray? He said yes, but she hardly ever used it. I told him we rely a lot on our arm supports as ablebodied people, because gravity pulls us. He said, “I didn’t even think about that.”

I said, “You see the laterals there? People think they will stop her from going to that side, but there are no hip guides to stop the hip from sliding the other way,” which was causing the scoliosis and a lot of the other things that were happening. So I think it’s really important to look at that positioning with children.

MM: The girl, now 13, has used a wheelchair for years.

GR: (Her father) started thinking about it and said, “A lot of these things probably could have been prevented” with early-intervention positioning. So when you look at this realm we’re in — and there are a lot of good people that are in it who are doing this — the importance of educating dealers is without a doubt the most important thing. ATPs understanding this, being able to create these systems, is very important.

As companies we need to be very transparent in the media of what we do and in explaining it to families. (Our company) plans on talking to families, having videos of us talking to moms about simple things, like making sure the hip guides stay in the position they need to and understanding that.

With this father, I gave him an example. I put my arms in the middle of my lap with no arm support. I said, ‘What you’re going to find out is my arms will pull my body down because they’re weight that’s not supported.”

I told him that trays could be viewed in a lot of different ways — they could be padded and be made really nice for her. And they don’t have to be so big — they can be cut in half and just used for supporting her hands.

She has tilt, too. I asked if she used it, and he said yes, but only when she’s going to sleep. So I talked to him about looking at and understanding her body and what it’s going through. She’s not dynamic; the laterals are keeping her in a neutral position. If we stayed in a neutral position being able bodied, we’d be sweating, we’d be fatiguing, we’d be showing tone. We’d be so frustrated that our bodies would react. Our muscles would react. We have to do proper gravity shifting, but families don’t understand that.

So now we have children whose heads are touching their shoulders because they’re so fatigued. They’ve never had an opportunity to tilt back to relax for a little bit.

Maybe it’s never been thought of — understanding how to manage the child’s positioning every hour so the child re-energizes, so the child can relax and now the body naturally comes into a non-fatigued position.

Things like that are really important to address and important for the industry to put focus into.

It’s great when we come from a show and say, “Did you see that tilt study from the U.K.?!?” But when that doesn’t get out to families, I end up talking here with a father who doesn’t understand the true benefits.

MM: Understanding of the importance of positioning, Romero says, will benefit both the child and the family — and he gives an example.

GR: Information needs to be explained to families so they can understand how important eye contact is and what it promotes — that it promotes good communication for their child, so their child’s going to be able to understand and interpret body language and facial expressions when they see them. I have a 5-year-old, and I learned to come down to his level, to look at him so he didn’t feel intimidated and he could understand me.

A lot of children in chairs can’t hold their heads up. They have a hard time understanding what you’re saying because one of their ears is covered up by their shoulder because their head’s leaning that way. Or a hard time being able to see correctly what you’re trying to show them.

When we’re doing inservices and seeing families and working with ATPs, the first thing I look for is Where is this family? How educated are they on their child’s diagnosis? If they’re not as educated and they’re more interested in a product’s aesthetics, I’ve got to find a way to leave them with the thought Maybe we should be more educated.

This article originally appeared in the April 2012 issue of Mobility Management.

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