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.