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.
Wonder Baby: WonderBaby.org, a project funded by Perkins School for the Blind, is dedicated to helping parents of young children with visual impairments as well as children with multiple disabilities. Find information on parenting, development, communication, apps, education, parent stories, and more. http://www.wonderbaby.org
CHARGE Syndrome Book: Published in 2010 and edited by Timothy Hartshorne, Ph.D, Margaret Hefner, MS, Sandra Davenport, MD, CM, and James Thelin, Ph.D, this book describes the sensory, physical, and behavioral findings in CHARGE, indicates what kinds of studies need to be done to confirm the findings, and describes how these findings affect the function and development of the individual with CHARGE. All royalties from this book benefit the CHARGE Syndrome Foundation. http://www.pluralpublishing.com/publication_cs2.htm
CHARGE syndrome is a complex condition, yet each child is unique and must be treated as such. You will likely have many doctors as part of your medical team. Management, coordination and good record keeping will be essential as your child develops. It is important to know the medical issues in CHARGE and share that information with your child’s medical team. Do not be afraid to ask questions. Please refer to our Medical Features Page to learn more about the effects of CHARGE syndrome.
Early intervention (EI) refers to educational services for young children (birth to age 3) who have disabilities (taken from the NCDB web site). EI will help your child to learn the skills necessary for development and communication.
Overview of Early Intervention – from the Center for Parent Information and Resources (CPIR).
Find Help – from the CHARGE Syndrome Foundation Management Manual for Parents
FAQ Document: New Parent Packet – Frequently Asked Questions
CHARGE Fact Sheet
California Deafblind Services (CDBS): Various articles on Early Intervention
Your child will receive various therapeutic interventions to aid in his/her development. Some of these therapies include but are not limited to, Physical Therapy, Occupational Therapy, Speech and Feed Therapy, Vision Therapy and Hearing Therapy, and Orientation & Mobility. Please refer to our Therapies Page to see a detailed list of therapies and explanations on their importance to a child with CHARGE syndrome.
Webinar: The Forgotten Senses – Deafblind Educator, David Brown, discusses the Vestibular and Proprioceptive senses and their impact on learning and development. The Forgotten Senses Webinar
Literacy begins at birth and builds on relationships and experiences that occur during infancy and early childhood. Children with combined vision and hearing loss miss out on learning experiences that happen incidentally for other children, but rich early learning experiences can be provided when families, teachers, and caregivers build trusting relationships with these children, know what their favorite objects and activities are, and recognize their array of communication signals. http://literacy.nationaldb.org
Perkins School for the Blind Webcast presented by Deirdre Leech, M.Ed. on Early Literacy for Students with Multiple Disabilities or Deafblindness http://www.perkinselearning.org/videos/webcast/early-literacy-students-multiple-disabilities-or-deafblindness
Promoting Early Concept Development Through Adapted Books – presentation by Christine Spratling on August 1, 2015 at the 12th International CHARGE Syndrome Conference
Promoting Early Concept Development Through Adapted Books
Many Ways to Have a Conversation – by Martha M. Majors, Assistant Education Director, Deafblind Program, Perkins School for the Blind
Many Ways to Have a Conversation
Transition to School
After age 3 your child will transition out of Early Intervention into Preschool services. Most children with CHARGE syndrome will continue to need special services and supports to aid in their overall development throughout preschool.
Transition to Preschool – from the Center for Parent Information and Resources (CPIR)
Webinar: A Conversation about Intellectual Assessment: What Parents Need to Know – Perkins School for the Blind/Deafblind Program, Licensed Educational Psychologist Pamela J. Ryan, M.A., CAGS discusses the intellectual assessment process on children with CHARGE syndrome. A Conversation about Intellectual Assessment Webinar
Please share this information with your child’s education team: