Children with CHARGE syndrome experience the world differently. Their intelligence is often underestimated due to combined vision and hearing losses and multiple medical issues. Each child’s specific hearing and vision status must be taken into consideration when designing infant stimulation, physical therapy, and speech and language programs. A comprehensive educational program should address balance, muscle tone, breathing, feeding, and other specific needs, including vision, hearing, and communication.
Because most teachers and school districts have no experience with deafblindness we, as parents, need to learn as much as we can to become effective members and leaders of our child’s education team. Your state’s deafblind project and Parent Training Information Centers are available to help you navigate the education system. There are many acronyms used in education, here is a list of the most common acronyms with a short explanation of each.
CHARGE is medically and developmentally one of the most complex conditions known. Children with CHARGE syndrome are also likely to be amongst the most truly ‘multi sensory impaired’ people you will ever meet, having difficulties not just with vision and hearing but also with the senses that perceive balance, touch, temperature, pain, pressure, and smell. For information on the impact of CHARGE syndrome on development, see our Development & Outlook page.
The Impact of CHARGE on Communication and Learning
Martha Majors provides insights on the impact of medical and physical challenges for children in educational environments. She also provides guidance for educators to help them develop an effective educational program that helps improve emotional wellbeing and success in school for students with CHARGE
From 0-3 your child will have an Individualized Family Service Plan (IFSP), which includes the family. The Individualized Education Program (IEP) drives your child’s education from 3-21. For an overview of the differences between the IFSP and the IEP, see www.pacer.org/parent/php/PHP-c59.pdf