knee scooter comprehensive AAC app
Imagine this: you've had an accident, and one of your legs
was badly injured. You endure a period of rest and immobility, and then the
time comes for you to get back on your feet---but you can’t. The weakness, the
pain, the coordination issues . . . that leg is just not ready to do its job quite yet. You meet with a physical therapist and a doctor and discuss different
tools that can aid your mobility, and you ask about the one-legged scooter that
you have researched diligently online---it will take the weight off of your bad leg and
allow you to move quickly, keeping up with everyone in many environments (let’s
pretend you live in a fully ramp-accessible world for this imaginary scenario).
You have been waiting for a long time to get off the sidelines and are eager to
get the scooter, which can help you get around until you have your strength.
Imagine this: You are
a child who has no speech, or very limited speech. You are frustrated (or
rage-y, or sad, or dejected, or deflated) when you want things, or feel things,
or want to comment on things, or have a question about something, or want to
boss someone around, or need to get someone’s attention, or have something
really funny to say . . . because no one understands. Or some people understand
sometimes but then other times they are wrong and it’s not-really-even-worth-telling-them-they’re-wrong-because-you-can’t-figure-out-how-to-tell-them-the-right-thing-anyway. You meet with a speech therapist and a teacher and they sometimes
are very fun but sometimes it’s all just hard work. Your mom comes to talk with
them, and you hear them talking about something, some device, that will help
you talk to people. You’ve been waiting for a long time to get off the
sidelines and you need a way to communicate, effectively, with as little effort
as possible, until you have the means to communicate with speech.
But then, something strange happens. They decide that you
shouldn’t get the scooter just yet.
But then, something
strange happens. They decide that you shouldn’t get a device to help you
communicate just yet.
First, they aren’t sure that you can even use a scooter . .
. they’ve never seen you even show an interest in scooting. They say that the
scooter is so fast and effective that you may just lose interest in ever trying
to walk independently. They think that you may just perseverate on the fun of wheeled
scooter, spinning in circles, being totally irresponsible as you speed aimlessly around, never bothering to actually wheel yourself where you are supposed
to go. They think that the wheeled
scooter is very complex, what with the moving pieces and the brakes and the
features that need to be learned . . . and based on your previous interactions
with them, they aren’t sure that you’re capable of managing it.
They think that first you have to prove that you’re capable
of managing something without wheels, to work up the mobility hierarchy. It is
determined that you will start with a cane-if you are successful you may
graduate to two canes, then to crutches, then to a wheeled office chair (to be
used only when you’re seated in your office, possibly to be expanded to home
use if you are successful), then to the wheeled scooter. The wheeled scooter is
a very good option for those who have mastered the other mobility options, but
they don’t want to overwhelm you with too much speed and freedom. They’ve
always given the cane first.
First, they aren’t
even sure that you can use a speech generating device, or whether you would be
interested. They say that an SGD is so stimulating and fun that you may
just lose interest in even trying to speak with your voice. They think that you
might just stim on the pictures and buttons and sounds of the device, hitting
button after button and never bothering to learn how to actually communicate
with it. They think that a full-bodied AAC device/app is too big: too many
words, too many options, too much navigation . . . and based on what they’ve
seen from you, they aren’t sure that you’re capable of managing it.
They think that first
you have to prove that you’re capable of managing something no- or low-tech. It is determined that you will start with a low tech device with a
field of 6 choices (to be determined by an adult who will pick the things that
they want you to “say”). If you can manage a field of 6 it will increase to 12,
then maybe to 32, and then (if you stay focused for a few months) possibly to
something with a dynamic screen and more reasonable vocabulary size (to be used
only at school during snack time initially, then also in circle time, and
possibly to be expanded to home use if you are successful). The dynamic screens
of AAC apps/devices are great options for those who have proven their
capabilities, but they don’t want to overwhelm you with something too complicated
from the start. They always give low tech first.
This doesn’t seem fair.
This doesn’t seem
fair.
There are clear counterpoints to each point raised by the
treatment team. First, it’s ludicrous to assume that you would prefer to scoot
perpetually—managing the equipment, not being able to move with your peers as
they cross uneven terrain, having to haul the scooter everywhere you go---the
scooter is more work, and less ideal, than natural locomotion. Next, you may spin some wheelies or race
around as you get a feel for the scooter, but this is part of the process of
learning how to navigate on wheels. Third, while the mechanics and maintenance
of the scooter will take some getting used to, there’s no way of knowing if you
can do it without trying (but you’re pretty sure you can do it). Lastly . . . a mobility hierarchy? Really? Why in the world
should you waste your time and energy painfully proving yourself on
things-that-really-won’t-work-long-term, when you could already have the long
term solution in hand? (or, in this case, under leg)
There are clear
counterpoints to each point raised by the treatment team. First, it’s ludicrous
to assume that you would prefer using a talker to speaking**-managing the talker,
not being heard easily in crowded places, having to carry it everywhere you
go---the device is more work, so much slower,
and less ideal than natural speech.
Next, you may press a lot of buttons to learn where words are located, but
this is part of the process of learning how to navigate a speech generating
device. (And even “stimming” on one word over and over is often a way of self-teaching
that word and the melody of it.) Third,
while the navigation, transporting, and usage of the talker will take some
getting used to, there’s no way of knowing if you can do it without trying (but
you probably can do it, with the right modeling and support in your corner). Lastly . . . an AAC hierarchy? Really? Why in the world
should you waste your time and energy painfully proving yourself on
things-that-really-won’t-work-long-term, when you could already have the long
term solution in hand?
Being able to navigate in your world seems like a basic human right. You are entitled to the tool you need to make this happen.
Being able to communicate is, indeed, a basic human right. You are entitled to the tool you need to make this happen.
You tell the therapy team that their proposed course of
action is invalid, for the reasons outlined above. You advocate for yourself
and insist on getting the tool that you need. This shouldn’t even be their
decision. You are the one who is dealing with this limitation, and your vote
counts the most.
You don’t say
anything. Because you can’t.
This shouldn’t even be
their decision. You are the one who is dealing with this limitation, and your
vote counts the most.
Except you don’t get a
vote.
Every child who can’t speak deserves access to a full,
robust, comprehensive communication system. If you have one of these children
in your life*, you’re either on the team that is presuming competence and
fighting for a big system (immediately), or you’re on the team that is standing
in the way.
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*Please note that I included the parent in the treatment team of the nonspeaking child. This isn't accidental. Sometimes the roadblock to a great device is a professional-but sometimes it's the parent who is hesitating.
**PS: And honestly, so
what if an AAC user prefers using their device to speaking? There are reasons
that AAC use is a better option for some verbal users sometimes (particularly in times of
stress or exhaustion). Why should it matter how they choose to communicate, as
long as they have the ability to do so?
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Related post:
The Gatekeepers, in which I discuss the AT evaluator that tried, twice to underserve Maya---the first time providing her with a low tech 32 button system, the second time trying to take her communication app away and replace it with something "simpler."
