Trees van Nunen reports:
Research on CRS continues in the Netherlands! Two organizations – Bartiméus and Kentalis (formerly known as Viataal) – work closely with patients who have combined vision and hearing loss. In 2004, my colleague Anneke Schoenmaker (MD) and I (psychologist) decided to collaborate together with our colleagues from Bartiméus (Josje Kingma, MD and Saskia Damen, psychologist) in a Health Watch Program that addressed both medical and behavioural late onset problems in the adults with CRS. Very few studies have looked at both aspects of the lives of these adults and we thought it might provide some interesting information.
As a first step, we collected medical and psychological data of approximately 65 adults with CRS born before 1985, most of them residential. Our initial reports received very positive reactions from our international colleagues. At the 2007 DBI conference in Perth, Australia, we presented a summary of the data collected and analyzed to determine the medical and psychological impact of congenital rubella syndrome in adults.
We subsequently developed a detailed classification system of psychological and behavioural problems found in this population along with a complete inventory of psychological and behavioural problems. I am happy to report that a student of our colleague, Marleen Janssen, is now analyzing the files of our CRS clients who are participating using the inventory I’ve designed. By studying the files (retrospective research) we hope that we can say something more about CRS as a late onset disease. The statistics will be run in late May. We are very curious about the outcomes and look forward to sharing them with you in the coming year. My goal is to present them during the DbI conference in Brazil in 2011!
Nancy O’Donnell reports:
The Helen Keller National Center continues to collect blood samples of adults with CRS for the Centers for Disease Control and Prevention (CDC). The CDC hopes that they will be able to create a blood test that will definitively diagnose CRS in adults with a questionable or unknown diagnosis.
Our rubella listserv remains active and is an ongoing source of information and support for those with CRS, their families and professionals who work with them. There is still so much to learn about late onset health problems associated with this syndrome. The latest topic on the list is whether a diagnosis of “CRS” entitles a person to certain services and/or financial support. There have been questions about mental health issues and CRS, and we have shared research articles that describe evidence that prenatal infections (including rubella) can contribute to increased risk for schizophrenia. Clearly, more research needs to be done.
Every week, I receive emails from literally all over the world with questions about CRS. We may hear from parents of a pre-school age child who want assistance finding resources for educating their child; a mother of a 2 year old who wants to know what kind of life her child might be able to live, or from a person in their 40s or 50s who is just now realizing that their health problems may be related to something their mother said about German measles many years ago.
This is the first generation of individuals with CRS being studied and followed. We are still learning a lot about this group and the long term effects of this virus. The Rubella Network is a great way to share information about this syndrome.
Sensory Exploration Arts (SEA) program:
EXPLORE, EXPRESS & ENJOY
“The arts motivate in a way that no other force can. It is only through making a mark that no one else could make, that we express the individual creative spark in our own humanity ,giving all individuals every opportunity to discover how wonderfully unique and special it is that they have known life and shared their feelings, responses and perception of living it.”
- Bernie Warren: Using the Creative Arts in Therapy and Healthcare.
The creative tides are high and the imaginative results continue to roll in with the launch of Sensory Exploration Arts (SEA) program.
DeafBlind Ontario Services, Canada is very pleased to share about the Ontario Trillium Foundation funded pilot project – Sensory Exploration Arts (SEA) program. This program is a joint venture with Bob Rumball Association for the Deaf (BRAD) in Milton, Ontario, Canada.
The initial concept of this project began after visiting SENSE Scotland in 2008 and observing the benefits and opportunities of the Arts and Wellbeing program. We wish to acknowledge and thank SENSE Scotland for sharing their insight into such an enriching and imaginative program and their continued guidance and support.
The objective of the Sensory Exploration Arts (SEA) program is to promote and foster artistic and creative expression in a visual arts program for individuals with sensory impairments. This project also includes the broader community through inclusion of local artists who work in various art mediums. The Sensory Exploration Arts (SEA) program is available to the residents of DeafBlind Ontario Services and the clients of Bob Rumball Association for the Deaf (BRAD). An additional objective of the program is to select pieces of art to enter the International Helen Keller Awards, an open multi-media arts competition exploring perceptions of deafblindness from across the world, hosted by SENSE.
The pilot project involves two SEA coordinators, whose roles involve scheduling, developing and facilitating a visual arts program. The facilitation also entails being the conduit between the artist, various creative mediums, and the individuals who are deaf or deafblind and their Interpreter/Intervenors. The pilot project is overseen by a project manager and a steering committee.
This stimulating and collaborative program has already exposed the benefits of creative expression in individuals whom may not have engaged or viewed themselves as an artist before. Our vision for the SEA program is unfolding through the success of the following three fundamentals:
Explore: Experience exploration of life thorough the senses of smell, taste, touch, sound (vibrations) and sight (light/dark intensities) in context to the theme of the week providing individual emotional response, connectedness with the environment, sense of self and well being.
Express: Express the emotional response to the experience in the present moment in an art medium of (collage, painting, sculpture and printmaking) meant to validate ones humanity and wellbeing.
Enjoy: Creative self expression through the arts allows for further communication to others about how each person experiences the world in that moment. The arts validates their unique personality and abilities.
Our budding artists have explored and experienced many themes – animals, nature, sugarbush, and weather through watercolour, scented painting, warm/cool play dough, and barley, sand, beads, string and foil collages, all of which have allowed for play and exploration of their senses, deepening the participants joy of new experiences and life itself.
“Each person had their own perception of the experiences given and created a piece of art that reflected what they had experienced or how they wanted to express themselves in that moment. Everyone had the opportunity to create from their own imagination and make their ideas come to life through their art”, says SEA Coordinator and art therapist Corene Jonat, “Lots of smiling, laughing, quiet focus and excitement can be seen from the artists”.
The artists who are deaf and deafblind have expanded their comfort levels, communication and exploration abilities through these new experiences. We hope to secure more funding for this important project, and look forward to its continued success.
Kelly Patterson and Susan Manahan
DeafBlind Ontario Services
“I sometimes wonder if the hand is not more sensitive to the beauties of sculpture than the eye. I should think the wonderful rhythmical flow of lines and curves could be more subtly felt than seen. Be this as it may, I know that I can feel the heart- throbs of the ancient Greeks in their marble gods and goddesses”
– Helen Keller