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.
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 from Perkins School for the Blind 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
Educating a child with CHARGE is very complex. When developing an educational program many components should be considered. The following article explores those components.
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
Early Education
Early childhood is a time of great stress for a parent of a child with CHARGE syndrome. There are medical issues, surgeries, therapies, the Early Intervention and Special Education systems, sensory issues, and concerns about overall development. You will sometimes wonder how to fit everything into your day. We hope that this page will provide you with the necessary information to assist your young child with his/her development so you can enjoy spending time together.
See more about Early Education
School Years
Find information about navigating the School Years with your individual with CHARGE syndrome.
See more about School Years
Paths to Literacy
Paths to Literacy is an online hub for information related to literacy for students who are blind or visually impaired, including those with additional disabilities or deafblindness. Content includes an overview of literacy at various stages of development and special challenges, as well as an exploration of different media (print, braille, auditory strategies).
See Paths to Literacy
The following is a checklist tool that can be used by school teams and early intervention specialists to help guide educational services for individuals with CHARGE syndrome.
See CHARGE Educational Checklist
Interveners
Interveners are professionals who have received specialized training to work with people who are deafblind. An intervener helps the person with deafblindess gain access to environmental information, facilitates communication, as well as promoting social and emotional development. An intervener may be part of your son’s or daughter’s education team.
See more about Interveners
Transition to Adulthood
Planning for adulthood is an exciting time in a young person’s life. When that young person has CHARGE syndrome, extra care and thought must go into the process as families move from entitlement based services to eligibility based services. Planning is crucial to obtain the necessary supports for independent living, employment, medical care, continuing education, recreation and social needs.
See more about Transition to Adulthood
