Future Reflections  Summer 2006

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Connecting with Jimmy

by Sue Elan Holmes

Dr. Lilli Nielson's Little Room, pictured here on top of a resonance board, is an interactive environment that encourages movement and playEditor’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
(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

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