Future Reflections
Summer 2006
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Connecting with Jimmy
by Sue Elan Holmes
Editor�s
Note: The following article is edited from a presentation given at
the North American Active Learning Convention sponsored by the Lilliworks Foundation,
in the San Francisco area in February of 2005. Since many readers will not be
familiar with the term, Active Learning, or with the equipment mentioned in
the article, we have added definitions, descriptions, and a picture. Here is
the definition followed by what Holme�s has to say about her experience with
the Little Room, and what the Active Learning approach has meant for her son,
Jimmy:
Active Learning--
�Created for children whose developmental age is three-and-a-half years or younger,
the Active Learning approach enables the child with multiple disabilities to
learn in the same way that very young children without disabilities learn--by
doing, rather than being trained or taught. In this approach the child is provided
with opportunities to learn through active exploration and examination of the
environment. Teachers (and parents) set up developmentally appropriate environments
that encourage the child to touch, move, and explore. They then respond to the
child�s actions and sounds and interact with the child at his/her level of interest
and development�.Active Learning works with even the most significantly delayed
and disabled children, enabling them to learn that they can act upon the world
and initiate interaction with others.�
-- This explanation is quoted from materials prepared and distributed by
LilliWorks Learning Foundation, www.lilliworks.org, the sponsors of the North
American Active Learning Convention.
My three-year-old son, Jimmy, has always had tight arms and
legs that were drawn up towards his body. From the beginning, it was extremely
difficult to get him to touch, hold, swipe at, or mouth toys and other objects
that most babies love. Before his first experience in Dr. Lilli Nielsen�s Little
Room, he actually seemed to be tactile-defensive; he did not get enjoyment out
of any toy or object that I presented to him. I remember thinking that maybe
the problem was me, so I had my daughter, my husband, my mother, and my son�s
therapists try to introduce objects to him, but to no avail.
I was desperate for a way to connect with Jimmy. I had the usual
bond a mother gets from breast- feeding her child, but I still had a feeling
of being disconnected from him. I had no way to communicate with him. He is
severely visually impaired, has limited hearing in one ear with complete deafness
in the other, he has spastic quadriplegia, he is missing the occipital lobe
of his brain, and he does not speak. I remember the day I got the news about
his hearing. It was the very last diagnosis to add to an already long list of
complications.
Most parents would hear a diagnosis like this and feel hopeless.
But all I heard that day were possibilities! Jimmy did, in fact, have some hearing.
He was not a candidate for a Cochlear implant, but he could still hear. I never
shed one tear in the doctor�s office, and even the nurse looked puzzled. I remember
her saying, �You�re leaving? How are you doing? Can I get you anything?� I smiled
and told her I was fine. Again looking puzzled, she asked me if the doctor should
come back to explain the diagnosis. Apparently, my smile led her to believe
that I had not just been told my son was severely hearing impaired. I told her
that I�ve never been better. My son could hear! For a moment, I think she considered
escorting me to the psych ward.
When we first ordered our Little Room, I was unsure of how this
pile of metal and wood panels would transform my son into an �active� learner,
much less any kind of a learner. I figured out how to put it together into the
format that allows him to lay down inside it with all the object hanging around
and above him, then put Jimmy in, and�he played�actually played�with the items
hanging in the Little Room for a period of at least a half an hour. This was
huge!
To my surprise, I discovered that Jimmy loves to clack things
against his forehead. He is a jokester, laughing out loud the whole time he
played. Small metal objects, like keys and metal measuring spoons, are among
his favorites. He mouths them, enjoying the cold feeling on his gums and the
texture of the smooth metal on his hands. I also place objects in the Little
Room that have interesting sounds when tapped against other objects. A Koosh
Ball is our central, reference object in the Little Room. Jimmy swishes his
nose back and forth across it with his eyes squinted closed and a smile on his
face, and immediately seems �at home� and familiar with his Little Room.
The Little Room is an acoustical dream! When we use it in conjunction
with a Resonance Board, Jimmy�s vocalizations really begin. He plays with the
echo feedback he gets, immediately kicking with glee. I noticed that taking
special care to turn off the television, and picking a time of day when the
house is at its quietist, leads to a more productive session in the Little Room.
That way, the only noises Jimmy hears are the sounds that he makes by playing
with objects or vocalizing�yes, the Little Room teaches Echo Location!
When used in conjunction with Thera Togs, Jimmy is at his best in the Little
Room. The Thera Togs increase body awareness by �organizing� the body. Jimmy
is not only playing with toys in the Little Room, but actually purposely making
movements towards objects. Albeit shaky at times, he slowly brings his arms
up, opens his hands, and anticipates the touching. His vocalizations in the
Little Room increase, as well.
I have since purchased two of Lilli�s books to help me give
Jimmy the best learning experiences possible. I never expected to learn all
of the things that �good� parents do �wrong,� myself included. Scraping Jimmy�s
chin with the spoon was a big example of doing the �wrong� thing with all good
intentions. Of course, that�s why he associates his chin being touched with
eating instead of concentrating on the movements of his mouth that are necessary
for chewing and swallowing! I had to learn how to undo some of these patterns
and think in a whole different way. I am also learning about, and am forever
amazed at, how everyday objects make the very best toys for Jimmy.
Lilli Nielsen has an innate ability to develop products that
enhance the learning and well being of kids like my Jimmy. But beyond her products,
it is important to first take a look at your approach. The most important point
of Active Learning is one that is the hardest for parents of the medically-and-developmentally-fragile
to accept--it is this: that the child must actively explore on his/her own.
The concept is easy, but I am among the parents that found this so hard to do.
You are so used to holding your child tight after being told that they may not
live past the first day or week of life. But the rewards of �letting go� have
been great, as I can now dream of Jimmy actively exploring our home and the
community, step by step. Letting go a little has made all the difference. Even
now, I find myself having to sit on my hands (literally) to prevent myself from
interfering with Jimmy�s learning process. Connecting with Jimmy is second nature
as he becomes more and more aware of what�s going on around him. How ironic
that in order to connect with my son. I had to first let him actively explore
on his own!
Active Learning Equipment and Materials:
The Little Room: The Little Room consists of a metal
frame supporting three side panels with various textures, a Plexiglas ceiling,
and two play bars from which a variety of objects (everyday objects or toys)
are suspended. This gives the child the opportunity to experience the properties
of objects, to compare different objects, and try out different things to do
with the object on his own without adults interpreting that experience for him.
Since the objects are stable, it allows the child to repeat his actions with
an object as many times as he needs to, at one to two-second intervals, without
dropping and losing it. The immediate repetition enables the child to store
the information gained from the experiences in his memory.
Resonance Board: The resonance board is a thin plywood
panel carefully designed to vibrate to every movement a child makes while lying
on it. It enhances the effectiveness of the Little Room, but can also be used
alone to encourage play and movement.
For information about ordering equipment designed by Lillie
Nielsen, contact:
LilliWorks Foundation
1815 Encinal Avenue
Alameda, California 94501
www.lilliworks.org
(510) 814-9111; fax: (510) 814-3941.
Books and Curriculum: The full line of Dr. Nielsen�s
books is available from:
Vision Associates
2109 US Hwy 90 West Ste. 170 #312
Lake City, Florida 32055
Phone: (407) 352-1200; Fax: (386) 752-7839
www.visionkits.com
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