Dr. Lilli Niesen

Dr. Lilli Niesen

Now retired, Dr. Nielsen has lectured, trained and consulted hundreds of times throughout the world for decade. Dr. Nielsen is considered by many to be the top expert in education of children with multiple disabilities.

With 4 blind siblings, Dr. Nielsen, PhD, has had a unique perspective on vision and multiple disabilities in her 40+ year career.

She was a special education advisor from 1967-96 for the Refsnaesskolen, National Institute for Blind and Partially Sighted Children and Youth in Denmark. She is a preschool teacher and psychologist, with her PhD thesis on spatial relations of congenitally blind infants.

When she retired from Refsnaesskolen she got the finest recommendation you can ever get in Denmark. The Queen of Denmark knighted Lilli by giving her the decorationof The Knight of the Dannebrog. It is a very exclusive award.

She has authored many professional articles and books on challenged learners, including:

Space and Self

Spatial Relations in Congenitally Blind Infants

Are You Blind?

Educational Approaches

Visual Impairment - Understanding Needs of Young Children

The Comprehending Hand

Early Learning Step By Step

Functional Scheme: Final Skills Assessment

The FIELA Curriculum - 730 Learning Environments

Reprinted from LilliWorks.Org

A Very Special Educator

An Article by Dave DeRoche

Some great educators have learned by studying the theories of education, some have learned from a lifetime of hands-on experiences with countless youngsters, and others excel because of their finely honed ability to convey information. In a perfect world, one educator might have all three attributes. In an imperfect world, there is all the more reason to celebrate the alignment of heavenly teaching talents.

Lilli Nielsen, born 78 years ago on a remote Danish island, is the world’s premier teacher of the blind and multiply disabled. If the multiply disabled pose the biggest challenge to educators, then Nielsen is the ultimate teacher. Dr. Nielsen has all the advanced degrees, has read all the research, and has written many groundbreaking books on her own research. Her innovative theories are studied and used around the world. But if Lilli hadn’t been born into a family with four blind brothers and sisters, her life and career might have gone a different direction. When charged at age seven with the responsibility of taking care of her blind younger brother, this serious woman with the pixieish smile and twinkling eyes took the assignment very seriously.

Seventy years of hands-on experience later, this great educator is leading her final training seminar this February 7-9, 2005 in Oakland, California. There she will teach her methods to teachers, special educators, physical and occupational therapists, social workers, developmental pediatricians, and parents of special-needs children. They will have this last opportunity to have her help them develop and sharpen their skills as teachers, therapists, and parents.

In essence, her three-day seminar (for more information, contact: ; tel. 510 814-9111) is a workshop in how humans learn. Special-needs children have huge obstacles in their path to learning -- blindness or cortical vision impairment, mental retardation, cerebral palsy, autism, severe or pervasive developmental delays, hearing loss, speech disabilities – but Dr. Nielsen’s research has proven that the way they learn is the same, just delayed, and that their stages of development are the same building-blocks staircase, just more slippery. In understanding the essence of learning, devising ways of circumventing stumbling blocks, and passing that wealth of knowledge on to an auditorium full of eager, hopeful special-needs educators and parents – this is where Lilli is the brightest star in the night sky.

In the corner of a living room, atop an exactingly designed birch plywood Resonance Board, stands a Support Bench. It is one of Lilli’s seemingly simple inventions. Atop the adjustable bench lies a blind 5-year-old boy with cerebral palsy who can’t support himself sitting, much less stand. He lies chest-down on the bench, arms dangling forward into a pile of noisemaking and feel-good toys. His legs that can’t walk dangle backward down to where his bare toes encounter a bowl of dry beans. For perhaps the first time on his own, his cerebral palsied body is liberated from the burden of trying to support his own body weight. His chest and abdomen are supported; nothing impinges any movement of his arms, head, and legs. Each exploratory movement produces a rewarding sound and feel. The child first moves tentatively, then curiously, then excitedly. Ten feet away, his mother quietly breaks into tears, then sobs, and then a smile. “In his five years of life,” she says, “this is the happiest I’ve ever seen him.”

Lilli Nielsen has invented many important devices or “perceptualizing aids” for helping development and learning in children with multiple disabilities: the Support Bench, the Resonance Board, the HOPSA-dress, the Essef Board, the MFA Table, a Velcro vest of toys, and The Little Room. The Little Room may be her masterwork, representing seven years of research. The Little Room is a 2’x3’x2’ metal frame with side panels and a Plexiglas ceiling that is placed over a blind or multiply handicapped child lying on his back on a Resonance Board. A variety of tactile and auditory toys are suspended with cords from holes drilled in the Plexiglas ceiling. The side panels have attachments that add to the sensory-rich environment. As the child moves his hands, he discovers, feels, and hears the different toys. The Resonance Board acts like a drumhead, vibrating and amplifying the arm movements, toy sounds, kicks, and verbalizations that even the most handicapped will produce. (A deaf child will feel the vibrations.) The only noises the child hears are those he produces himself. This empowers him. It also speeds his comprehension of his environment. The constancy gives him confidence, and over time he becomes master of his environment, which is crucial.

A Very Special Educator – Page 2

This simple invention develops independent play, object manipulation, spatial relationships, motor and cognitive skills, use of close-in vision if it exists, sensory integration, learning by exploring and comparing the properties of objects, vocal play, and self-esteem. Simple inventions make a world of difference for the handicapped. So do simple but profound breakthroughs in educational theory.

If Lilli has spent a lifetime improving the learning environment for disabled people, she has done it by spending half a lifetime studying how normal people learn. Humans learn primarily by doing. Children learn by doing, which starts as play, and disabled children are especially dependent upon learning by doing. Playing, doing, and exploring are the pre-requisites for intellectual development, social development, emotional development, and independence. Lilli would say children exposed to her environments exhibit “Active Learning”. Indeed these two words, the term her approach, adopted by thousands worldwide, is known by, sum up her approach to education and to life.

Lilli Nielsen was born on a small island at the eastern edge of Denmark. She was the second of seven children, four of whom were born blind. “I was the strange sister,” she says, “because I could see.” Her younger brother by one year was as close as a twin with her, but he was born blind. She took it as her challenge to make his world and that of their siblings as bright as hers. (He now runs a photography shop.) “No one came to tell my parents how to care for their four blind children,” she says. So she devised her own techniques by trial and error and observation. Her powers of observation seem almost Sherlockian, but they come only from effort, experience, deep scientific thought, analysis, and devotion. She started her career as a preschool teacher, then worked in a hospital, became a psychologist, and eventually was hired to teach the blind. “It was then I visited blind children who were mentally retarded, had cerebral palsy, or had autism. Fifty percent of my blind students (now 75%) were also mentally retarded. I tried to find research on what to do. I found nothing! So I realized I needed to teach myself how they could learn.”

Lilli studied virtually every blind child in Denmark over the next 30 years, working as a special advisor for the Danish institute for blind children. At the same time she kept studying childhood development of non-handicapped children, for comparison.

Dr. Nielsen filled the knowledge gap by writing 50 professional articles and 9 books. Her books are clear and concise, with each step following logically from the previous. Her research is classic science and her conclusions common sense. She has been remarkably innovative -- revolutionary where appropriate. She tinkered tirelessly with her inventions and labored with manufacturers to get them produced exactingly. Her single-minded goal was to maximize these children’s opportunities for rich lives.

Soon her students, previously deemed unteachable and unreachable, had breakthrough successes. Lilli went on the road lecturing and training around the world to give her solutions the widest possible audience. Those who listened, read her books, or tried her perceptualizing aids on their children became converts and spread the word. But it’s a big world, and education is slow-moving and underfunded. Lilli has circled the globe. She has given at least 300 three-day one-person seminars and has visited 220 educational institutions in 24 countries. She is determined that her teachings live on. Now at age 78, Lilli is making her last lecture trip. Her polio is making travel no longer possible. There are so many children, and so little time.

Some principles of Active Learning:

• 1) Everyone can learn. Everyone can learn more – in the right environment.
• 2) We all learn best by actively doing, rather than by passively receiving information.
• 3) Observe typical or able children and note how they move to explore and how they participate in interactions. “Keep in mind what the normal child is doing at that stage of development,” says Lilli. Disabilities can impair or retard many interactions, so set up the special child’s environment to encourage exploration and interaction.
• 4) Observe each child and assess his or her stage of development, his existing skills, his preferences, and then observe his disabilities and compensating mechanisms.

A Very Special Educator – Page 3

• 5) Patiently wait for the special child to explore on his own. A child learns from his own attempts and repetitions. To learn, the child must have his own success. Don’t suggest strategies. Don’t correct. The parent or teacher’s role is to provide favorable conditions, choices, safety, and increased and updated challenges that stimulate at just the right level and keep boredom at bay.
• 6) With developmentally threatened children, exhibiting autism-spectrum disorders, let the child play according to his level of emotional development. Lilli sees autism as an arrested stage of emotional development. A goal for these children is to help them develop emotionally to near their intellectual level. Emotional-Development Level should be top priority. Discover the child’s language or non-verbal language and reply to it. If the child exhibits stereotyped behavior or “unvaried activity”, entice the child to vary his activities with playful challenges with which he can succeed. His unvaried activities should be respected, but his varied activities should be discovered and encouraged. Lilli has a five-phase method for facilitating learning for these children.
• 7) Let the child have control of his own hands, with vision-impaired children especially. For example, a blind child or any child should not have a rattle toy shoved into his hands and then his fingers squeezed around it and his hand shaken. The discovery and use must be made on his own. It is counterproductive to put your hands on a child’s hands and do things for him or demonstrate for him your suggested hand-use strategies. Their hands are often the best or only tools these children have and the foundation upon which they have built their strategies for dealing with the world. Thus blind people’s hands are extremely sensitized, considered highly personal, and zealously guarded.
• 8) Lilli rarely talks to a child while he is exploring and actively learning. “Don’t talk, even to praise. It interrupts learning and fizzles the neurons,” she says. “After he’s had his fill, then talk with him about the exciting things he’s done.”
• 9) “I never teach a child -- I let him learn. Let him find ‘the right way’. Let him experiment. Let him fail! Let him learn how not to do it –
• 10) “Learning from his own active exploration, the child will achieve skills that become part of his personality and will then be natural for him to use; they will gradually make him react relevantly to education and develop independence.”

Paraphrasing Lilli’s concepts is not the same as watching her work.

In her seminars, Lilli is a captivating lecturer. She explains clearly, cogently, and personably. She uses anecdotes and humor to self-deprecatingly walk rapt listeners through the steps of how she discovered something, and you get the sense of discovering it with her.

She balances theories with hands-on (actually, hands-off) advice. She balances descriptions of how disabled children are different from typical children with descriptions of how they are similar. By the seminar’s conclusion, her audience has absorbed her theories, her methodology, her tips, her practicality, and her personality, and they are raring to work with – and play with, and silently observe – their children. When visiting a classroom of multiply disabled children, she keeps her heartfelt pleasantries brief and gets down to the work of play, rummaging around for devices that can provide learning opportunities, making suggestions to the teachers, plopping herself down on the floor to assess each child, and creating enticing learning environments.

Lilli is many things: a teacher of special-needs children, a teacher of teachers, a researcher, a writer, an inventor, a motivational speaker, a psychologist, a therapist, and a role model. She is vibrant, energetic, elderly, modern, old-world, intense, light-hearted, cajoling, and above all, devoted.

She has spent a lifetime working with the blind and the multiply disabled, and she remains the eternal optimist. Her rewards are great: converted professionals; the spread of her methods through schools and institutions around the world; increasing exposure of her books and inventions; letters from ecstatic parents proclaiming “...he’s never done that before!”; and a treasury full of children’s proud smiles of accomplishment.

Reprinted from LilliWorks.Org