Jimmy's development is diligently followed by world-renowned experts at
Kennedy Krieger Institute. Kennedy Krieger is a hospital specifically for
developmentally disabled children, and it is associated with Johns Hopkins.
On a more routine basis, Jimmy visits specialists at Strong Memorial
Hospital at the University of Rochester.
We took a trip in 2005 to San Francisco to meet with Lilli Nielsen of
Denmark. She is the world expert on working with children with multiple
disabilities and visual impairments. Since then, we have been
implementing Lilli's Active Learning techniques. To find out more about
Lilli's Active Learning approach, please visit: www.lilliworks.com. Her
books can be purchased at: www.visionkits.com.
In San Francisco, Jimmy took his very first self-initiated steps in a supportive
device called a HOPSA-dress! The HOPSA-dress initially provides children
with vertical orientation without weight bearing. This enables a child to work
towards standing and walking at their own pace...unlike placing a child in a
stander, where they are forced to bear weight. Gradually, the child is
introduced to weight bearing. The result is a happier child who is able to
move freely and explore things independently (The photo below was taken
only 15 minutes after Jimmy's first use of a HOPSA-dress! Note the
interesting materials placed at Jimmy's feet, which inspired him to move and
explore!).
Also, Jimmy now wears glasses! His vision is much-improved. His
chorioretinal scarring has healed-over in many areas, causing him to have
more useful vision than before. He even has some of his central vision
intact!
The Baby Safe Feeder is
great for children who
need help in developing
oral motor skills. It allows
the child to learn to chew
food without the threat of
choking! The Baby Safe
Feeder can be purchased
at Babies R Us for $9.99.
Jimmy in a HOPSA-dress!
Lilli Nielsen's Little Room enables
a disabled or visually impaired
child to learn spatial relations, and
makes them more aware of their
surrounding environment. The
Little Room has a reinforcing effect
on the child's motivation to be
active. Every item the child comes
in contact with produces a sound
that encourages the child to reach
out for more! There is a resonant
quality to the Little Room which
produces a unique echo with each
movement the child makes. Visit
www.lilliworks.com for information
on Lilli Nielsen's equipment and
methods!
Homemade Activity Board (aka:
"Busy Board"!), based on ideas
from Lilli Nielsen's 2005 Active
Learning Conference. The board
has the following qualities:
1) Made of pegboard so items
can be changed easily
2) Board size is such that it
makes everything reachable
by the child when placed as a
tray in front of them
3) Items are fastened with 1/4"
elastic, so they can be pulled
and played with, but they will
always return to their original
position
4) Items have interesting textures
and sounds, and are placed
next to other items that are
similar, but different, so the
child can learn to compare
objects
5) Transitional object is never
moved from its location on the
board. It is the item that the
child plays with first each time
the board is placed in front of
them
Buy the book that changed our
lives, The Ketogenic Diet, at
Amazon.com! This book, written
by the Pediatric Epilepsy Dept.
of Johns Hopkins, explains the
Ketogenic Diet in easy-to-
understand terms. The
Ketogenic Diet is the key to
medication-free seizure control!
Jimmy's first day of preschool ended with a nap! We were lucky
to have Deb, Jimmy's Teacher of the Visually Impaired who has
worked with him since he was 6 months old, there to make the
transition to school easier.
A Few of Jimmy's Favorite Things....
A Cascade DAFO (Dynamic
Ankle-Foot Orthosis)
Cascade has been the leader in
dynamic orthosis manufacturing for
over 25 years. DAFOs support the
foot and ankle, and thereby effect
the motion of the entire body. They
are custom-made to fit each child.
They are different than typical AFOs
because they are much more
comfortable, there are color
choices, and they cover the dorsum
(typical AFOs do not).
DAFOs are known for the
following characteristics:
1) Correcting the foot to the best
possible position of function, to
provide appropriate stability
2) Improving standing and walking
abilities
3) Preventing and/or correcting
deformity
4) Maintaining and/or increasing
range of motion
5) Facilitating the development of
peripheral skills by diminishing the
work and concentration required
for standing and ambulation
For more info about DAFOs, click
here.
Jimmy uses McKie Thumb Splints to help
keep his hands open. The splint utilizes the
concepts of balancing muscle pull and
strengthening weaker muscles through
everyday use, which are emergent concepts
in the field of neuro-rehab. They are made of
washable neoprene. The thumb splints have
the following characteristics and results:
1) Sized for children as young as 3 months
old, it supports more normal grasp
development during the critical first year of life.
2) Aligns with natural muscle pull to draw the
thumb into opposition. Supports thumb joint
integrity and palmar arch development while
preventing web space shortening.
3) Minimal coverage of palm is not only
cooler, but allows room for manipulation of
objects as well as tactile exploration, both
essential for tactile sense development.
4) Encourages balanced muscle return
following stroke or neurological injury.
5) Diminished joint play and cushions the
thenar eminance in repetitive strain injuries,
sports injuries, and other types of trauma to
the thumb.
6) When worn throughout the day, facilitates
more balanced muscle development.
Thumb Splint plus Supinator Strap:
Pulls hand into supination, radial deviation
and wrist extension. Supports both grasp
and weight bearing hand functions.
Jimmy, wearing McKie
Thumb Splints!
