Transcript David Brown`s Presentation

Posture and Movement in
CHARGE Syndrome
Texas CHARGERS
November 6th - 8th 2015
David Brown
Deaf-blind Educational Specialist
The uniqueness and
complexity of CHARGE
syndrome
Working with children with
CHARGE teaches you that
everything is much more
complicated than it seems.
“Why Aren’t You Paying Attention?
The Interaction of Posture & the
Executive Function of Attention”
Three-part webinar by Dinah Reilly
http://www.idahotc.com/Webinars/
tabid/218/categoryid/4/5.aspx
P Hodges, et al (1991) Postural activity of the diaphragm is reduced
in humans when respiratory demand increases Journal of
Physiology 537.3: 999 1008
Every muscle in the trunk is both respiratory and postural
muscle, especially the diaphragm. If breathing is
compromised, postural muscle activation is reduced to focus
on immediate needs of respiration and thus posture is destabilized.
L Yardley, et al (1999) Effect of articulatory and
mental tasks on postural control NeuroReport 10:215219
Articulation increases postural sway in stance in
adults.
We must always remember that
everything joins up!
Self determination + Sensory
perception + Self image + Emotional
competence + The attitude &
behavior of others + Self regulation +
Executive function + Availability for
learning + Previous experience +
Expectations & Motivators +
Communication & language
CHARGE syndrome involves many
more senses than just vision &
hearing, and it is not enough only
to consider the tactile sense as a
compensatory channel.
The Senses
Distance Senses Near Senses
• Vision
• Hearing
• Smell
• Taste
• Touch
• Vestibular
• Proprioception
9
“The Forgotten Senses”
PROPRIOCEPTION
The receptors are
in the muscles and
joints throughout
the body
Tells us about the
position of our body
and all of our limbs,
and if anything is
moving
VESTIBULAR
The receptors are
in the Inner Ears
Tells us about head
position & the pull
of gravity, detects
motion, and it has
very close links with
the eyes and vision
“The only function of the body
is to carry the brain around”
Thomas Edison
12
Whose perception counts?
“The brain, the organ that is responsible
for your conscious experience, is an
eternal prisoner in the solitary
confinement of the skull…and must rely
on information smuggled into it from the
senses…the world is what your brain tells
you it is, and the limitations of your
senses set the boundaries of your
conscious experience.”
Coren, Porac & Ward “Sensation & Perception” (1984,
p2)
Communication
Communication
Communication
Deaf-blind Communication
*communication with one’s own
body
*communication with one’s
immediate environment
*communication with the wider
world
Most children with
CHARGE are not in touch
with/do not feel their
bodies very well
Assessment Questions
D Brown, “Follow the Child” (2001)
•
•
•
•
How do you feel?
What do you like?
What do you want?
What do you do?
Most people focus on the
child’s disabilities, but close
attention to their abilities can
reveal more about the
difficulties they face as well
as the strategies they use to
function effectively.
Everything that children with
CHARGE do has meaning,
and the first obligation on the
teacher is to ascertain that
meaning (or at least to come
up with a really good guess).
“After air to breathe,
postural security is our
next most urgent priority.”
Jean Ayres
[Self-regulation]… “is defined as
the capacity to manage one’s
thoughts, feelings and actions in
adaptive and flexible ways across
a range of contexts”
Jude Nicholas, CHARGE Accounts, Summer 2007
21
The 9 levels of arousal
(Carolina Record of Individual Behavior)
•
•
•
•
•
•
•
•
•
Uncontrollable agitation
Mild agitation
Fussy awake
Active awake
Quiet awake
Drowsy
Active sleep
Quiet sleep
Deep sleep
22
Yes, I believe that posture
should be included as a “selfstimulation” and/or a “selfregulation” behavior
(especially for people with
CHARGE syndrome)
Observing how and when a child
self-stimulates will offer invaluable
insights into who they are and how
they work, for assessment,
teaching, behavior management,
and relationship building
Why is walking a big problem?
•Bone malformations
•Loose joints
•Visual impairment
•Other sensory issues (Proprioceptive &
Vestibular!!!)
•Breathing problems
•Cerebral palsy?
•Stress, depression, fear
•Medication
•Distractibility (one thing at a time)
•Low expectations & over-protection
•Too many faster, safer ways of moving!
Movement Patterns
Roll
Side-winding
5-point crawl
Back scoot
Bum shuffle
Bare foot, flat foot, stamp/slide
Bare foot, tippy-toe, knees bent
Rolling gait (drunken sailor)
Vision and Balance
27
27
Vestibulo-ocular Reflex (VOR)
• Normal head rotation: eyes move
in opposite direction of head to
stabilize retinal image (VOR)
• Conflicting sensory information
from visual and vestibular senses
is a problem
28
28
Where’s my head?
Head weaving
Head binding (hat, sweatband, scarf,
string)
Head holding/ tapping
Head pressing
Jaw clenching
Teeth grinding
Biting/ chewing
What helps?
Physical jerks
Deep pressure
Binding
Good physical support
Regular movement
Controlled environment
Self-taught and taught strategies
Appropriate Vocabulary
So….?????
*Getting the brain in better contact
with the body/postural security
*Preparation for attending and
learning
*Self-regulating
*The importance of sensory
inputs, positioning, &
posture/movement