CHARGE Syndrome Canada Newsletter SPECIAL EDITION 2007 Vol. 1 No.15 © copywrite |
Carnitine Deficiency in CHARGE Syndrome
International CHARGE Syndrome conference summary
Dr. van Dijk updates on Russian research
Behaviour-Borderline Personality Disorder
Past Edition of the Newsletter
Dr. van Dijk Updates on Russian Research
Long been a mentor to many in specialized education of the deafblind, it was a privilage having Dr. van Dijk in Canada to report on his research from the collaboration with Children's House at Sergiev Posad in the Russian Federation. He encouraged the implementation of research-based practices, and says with any technique, you need to be able to say "here is my data".
During the presentation at W. Ross Macdonald School for the Visually Impaired and Deafblind in Brantford, Dr. van Dijk talked about many of the historical mistakes made in education of the deafblind and cautions that "we need to change the environment to meet the needs of the child" rather then focus on modification of the child's behavior. He uses his long standing theories of attachment to show how "Positive Behaviour Support (PBS) are useful techniques, which he demonstrated through video clips.
He used the example of infants who were exposed to the Rubella virus in the first 3 months gestation. Besides cataracts, these babies had many severe medical complications which meant extended hospital stays removed them from the early natural rhythm and comfort of the mother. "Thirty years later they still want to rock, and still want to touch you and be close". The behaviour is very fundamentally based on a need for comfort and security and cautions that we need to explore ways to meet those needs and not be afraid to touch.
In his 2002 research (Janssen, Riken-Walraven, van Dijk) they found body flapping often witnessed in children who are deafblind serves a functional purpose, and is a sign of stress. Stress hormones measured in saliva increased when the children flapped, as did respiration and heart-rate. When they tried to intervene and stop what was seen as "unproductive" behaviour, the stress level went up.
He cautioned that techniques for educating many of these unique children are different because motor systems can be impaired and delayed. He said that educators often get frustrated teaching sign language, but they need to find out, "can they imitate?" and "can they remember a series of motor movements?" which are more generalized. Techniques suggested include when they are flapping, join in. Introduce a ribbon on a stick and work beside them to create further movement. His "resonance" theory is basic to the concepts of imitation and bonding to help develop positive interactions. In the study, when they followed the boy's initiative, they became more interactive. He stressed that "the children should indicate preferred activities".
A workshop with van Dijk would not be complete without his mention of the "van Dijk Calendar System". This is a system where memory is preserved using shoeboxes to collect representational concrete objects, and later pictures if vision allows. He cautions that the children "need to keep it for years after years" and it should include "their favorite things". In the research, the use of the calendars served to decrease anxiety. "It gives them a past so they can talk about the future".
Finally he demonstrated by video how allowing time to process information is needed for many children who are deafblind, and this alone can serve to help reduce anxiety. The video clip demonstrated a child reviewing the concrete calendar and having the control over how much time was needed to process.
An interactive CD-Rom "From Russia with Love and Care for Children with Multiple Disabilities and Challenging Behaviour: A Demonstration Model" is available for $45.00 US. CHARGE Syndrome Canada also has a booklet which further helps parents through early communication experiences using the Calendar techniques.
~ Report by Ann Gloyn, Education Specialist
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