CHARGE Syndrome – is the most common cause of congenital deafblindness and a true multi-sensory impairment.
The DbI CHARGE Network is an interdisciplinary network composed of teachers, intervenors, educators, therapists and doctors, among others. Whether you work with children or adults, you are welcome to join. We are also open to interested parents, grandparents, other relatives or friends, and to people with CHARGE Syndrome themselves. We believe that sharing knowledge and experiences in this field is critical to our success.
For more information on the Deafblind International CHARGE Network, please contact the chair of our network, Prof. Dr. Andrea Wanka (firstname.lastname@example.org).
We have a special team for CHARGE syndrome. Different specialists work together in this multidisciplinary team. We can be involved in assessments, give advice, provide special education and care.
We made a (never complete!) list of all the positive qualities of children with CHARGE syndrome.
A child with CHARGE faces a lot of difficulties and challenges in daily life. However, persons with CHARGE syndrome are masters in overcoming those challenges in their own unique way. They are creative, humorful, active, regulative, exporative and enthusiast. Observe their qualities and take care for their needs. Laugh, love and live together and help them develop.
C: A child with CHARGE is CREATIVE in finding solutions to COMPENSATE! CLEAR CONCEPTS give insight in a world that is often CHAOTIC for them as a result of the multi sensory impairments. CONCRETE LEARNING EXPERIENCES are essential to give meaning to the world around them.
Children with CHARGE can be very COMMUNICATIVE hereby visual and tactile COMPONENTS can help them. They love to be IN CHARGE and they are often very CHARMING.
H: A child with CHARGE has lots of HUMOR! Social behaviour could seem a bit odd, but children with CHARGE love to be in CONTACT. They are HELPFUL and love to surprise you.
A: The level of AROUSAL changes constantly in children with CHARGE. An ACTIVE, positive
mood can change not on purpose to ANXIETY, fatigue and stress any moment. Starting, continuing and closing ACTIVITIES can become more easy by giving them some more time, visual support and tactile input to complete activities in a positive way. It is an ADVENTURE to be in CHARGE with them and they love to show their AFFECTION.
R: A child with CHARGE needs REST and REGULARITY, this gives structure and lowers stress levels. REPLACE yourself in their situation and give a child with CHARGE the time and support to REGULATE their mood, sensory input, thoughts and actions! READABLE.
G: A child with CHARGE is often GOAL DIRECTED! They often are excellent in finding solutions for their everyday challenges. GIVE them those opportunities to do and focus on their GOOD qualities.
E: Children with CHARGE love to EXPLORE the world and the people in it! They are full of ENERGY and being with them will never give you a dull moment. A child with CHARGE can be EMOTIONALLY UNBALANCED and needs you to help regulate EMOTIONS. You can help by changing the ENVIRONMENT and EXPLICITLY mention and EXPLAIN certain social situations.
The child with CHARGE is the EXPERT about his own possibilities and challenges. Look at and talk with thechild and the parents to EXPLORE how to adapt as good as possible.