Title: Box of Deafblindness


[Visual Description] A series of images of a boy on presentation slides.


KIMBERLY LAUGER:
Would like to introduce you to the concept
of the box of deaf-blindness.
This is a visual model designed to help understand how
to facilitate engaged learning
with students who are deaf-blind.
This model came out of my experience as a parent
of a deaf-blind child.
When Dylan was born, we knew he was completely deaf
by the time he was five days old.
Later tests would prove that this was to be true.
We also knew he had blind spots.
These things called colobomas.
What we didn't know was how well he was going
to see with those colobomas.
We were told to wait and see.
So we began to parent Dylan as a deaf child with the vision loss
and celebrated any indication at all that he could see.
But then people started using this word deaf-blind.
Deaf-blind created a horrible image in my mind of Dylan alone
in the dark box trapped, unreachable.
Yes, I knew about Helen Keller and I knew that language
and interaction were possible.
But I also knew that Helen Keller had exposure
to language before she lost her vision and hearing.
How was I going to reach Dylan?
How was I going to know him what he thought, what he felt,
what he believed, what he wanted?
How was he going to know us?
How was I going to let him know
that everything was okay and that I loved him?
Fortunately, that image of Dylan in a box alone, trapped, dark,
unreachable did not last long.
I quickly came to realize that Dylan was in a treasure box,
his very own treasure box, a box that kept him safe
and protected from the world.
And I knew it was going to be up to Roy and I to figure out how
to help Dylan come out of that box and engage with the world.
Now when you think about it,
we all have our own protected treasure boxes too.
If you have a migraine, if you've had a stressful event,
if you didn't get breakfast, if the traffic was bad on the way
to work, many things make us withdraw inside the
treasure box.
But on the other hand there are certain environments
that we know that we come out more easily,
that we participate more fully in life around us.
The same is true for the students that we work with.
Now the box of deaf-blindness is a model
to help us learn how we can help our students become more fully
engaged in life.
What are the things that cause them to retreat
into their protective box?
And what are the things that help them come out
and engage with the world?


[Visual Description] A box with a latch and a key on it. 


We start with the box.
The box contains essence of who Dylan is his personality,
his thoughts, his ideals, his experiences.
There's a lid on top of the box and it's sealed shut
and I don't see a key.
Intuitively, I knew Dylan had the key to open the box
and that I was going to have to enter his world
so that he would be motivated and secure enough to use his key
and to venture out into mine.
But how was I going to enter his world without a key of my own?
Where are the windows?


[Visual Description] the same box, but now pictured with arms, legs, a mouth, nose and ears. 


Now off of this box comes two arms and two legs
and there's two eyes and a nose and a mouth and two ears.
These are the windows into the brain.
But in deaf-blindness these windows aren't fully open.
Now let's look at Dylan's box.


[Visual Description] The same box is shown. Around the box is written: CVI, Limited vision peripheral right central left, no hearing, key inside, question mark smell, and decreased experiences, tube fed, non-verbal. 


What are the windows into his brain?
We know he has no hearing.
Let's cross off the ears.
No indication that he smells, we'll cross off the nose.
Tube fed since he was two week old.
Nonverbal, let's put an arrow
down to indicate those limited oral experiences.
And then his eyes, he has those colobomas, those blind spots
that involve the retina and the optic nerves
but there is some vision left.
Let's see, on the right he has some peripheral vision
available, so the window is partially open there.
And on the left the macula is intact
so he has some central vision available there
but he also has some visual processing difficulties.
So we'll put these antennas with little squiggle lines on the top
of this box to indicate that some of the information coming
in is still not processed efficiently.


[Visual Description] The same box is shown with additional words: Touch, movement, vibration.


What other ways can we reach Dylan?
His skin, throughout his entire body the box is covered
in skin and the box can move.
We can interact and provide information through movement
and vibration, providing input, rhythm, repetition also,
away to provide information to the brain.


[Visual Description] A series of images of a boy on presentation slides.


Now you can imagine with so many sensory channels closed,
with such a lack of information,
but the first advice we received was provide Dylan sensory
stimulation to make sure we provided enough input to make
up for this lack of information.
But as discussed in the video on the brain,
information that does not have meaning is perceived
by the brain as stress.
And what do you think is going to happen to the lid
on the box with stress?
That's right.
The lid is going to close.
It's going to close tight
and do you have the key to open the lid?
No, the child does.
Now each student is going to demonstrate
that their lid is closed in different ways.
The lid being closed simply means the child is not engaged
for learning.
You might see through what we call behaviors.
The child might start acting silly,
might start throwing things, might run out of the classroom.
Maybe they're perceived as underperforming academically
or you might see the lid being closed
through physical complaints.
For Dylan, it's migraines.
For other students it might be seizures.
Some students simply go to sleep.
There's a song that I particularly like,
"You Can't Make Turtle Come Out" by Malvina Reynolds.
She says, "My little friend Noah has some pet turtles,
he called them aguk.
He discovered that you can't make a turtle come out.
The more you make it, the more it won't."
The same is true in deaf-blindness.
If you are a student that has closed the lid, the more you try
to force the lid open the more likely the student is going
to stay safe and secure and withdrawn in that box
or that they might flare up outside of the box.
So if you can't force the lid open what can you do?
The first thing you have is your relationship.
It's through the emotional security and connection
that a student has with their communication partner
that helps them feel that it's okay to come out.
And then you might need to provide environmental supports.
How do you structure the environment
that makes the information available
to them more accessible?
For Dylan, it's things like blocking glare,
shutting out the light and the reflection that's going
to pull his attention away from the visual stimulus
that you need him to focus on.
It's going to be minimizing other distractions in the room.
It may be some of the deaf-blind strategies that you used.
For Dylan we use a lot of hand under hand support.
It helps his eyes and the tactile system work together
to provide more meaning to the information that he's receiving.
There are other kinds of physical supports,
a simple touch to his hips that help him feel grounded
and secure so his eyes can work more steadily when he's working
at the chalkboard or painting the box as seen in the picture.
We have found that for Dylan,
intervention is its own kind of key.
It's the key that has provided individuals that understand how
to form the relationship and how
to use deaf-blind educational strategies in ways
that allow Dylan to use his key and to come out
and engage with the world.
With intervention Dylan is so engaged and independent,
without it he's alone in a world with movement and stimulation.
A world I call la-la, land,
same individual completely different levels
of interaction and function.
With intervention you can help a deaf-blind student come
out their box and engage with the world.