Parenting a child with DCC can be very challenging and time consuming! Typically, a child has a new school teacher each year, as well as various school administrators, therapists, and other caregivers. This resource section was designed to help parents introduce their child to new teachers and treatment professionals with a well-thought-out packet of information. This section represents the collective wisdom of many members of the NODCC and parents whose children have other types of difficulties. Please use these suggestions as you deem best for your child and his or her circumstances.

Introducing … my child!

An Introduction Folder is an effective and efficient tool to help educators and professionals understand your child and his or her diagnosis. It can include information about his or her personality, likes and dislikes, educational accomplishments, educational goals, primary concerns, and critical information for daily functioning. It should also include recommendations for maximizing your child’s performance and handling behavioral challenges. By using a folder, you have a flexible tool that can easily be updated as your child grows and amended to meet the needs of various situations. Introduction Folders can be helpful for teachers and school administrators, as well as therapists (OT, PT, Speech), Scout Troop leaders, church-school teachers, and anyone else.

Here are some topics you may want to include:

  • Basic Information Packet
  • Devices & Equipment Information (for children who use augmentative communication or wheelchairs)
  • Education Information
  • Managing Behavioral Issues
  • Medical & Dietary Information

You can download and print the forms as needed or use them as inspiration for developing your own materials.

Basic Information Packet Sample Forms

Introduction Letter and Goals

General Information about DCC

Materials Supplied by Parent

  • Copy of Child’s Current IEP
  • List of Child’s Strengths (may include photos of things they like and/or are good at)
  • List of Child’s Struggles (may include photos of things that they find difficult)
  • Here are some samples that parents have done for their child’s Strength & Struggles. Please feel free to download and create your own! About my child with DCC

Education Information (Elementary Education)

  • Educational Suggestions for Children with ACC – Written by Kathryn Schilmoeller, Ph.D. in 1999 (download pdf)
  • Recommendations for School Aged Child with DCC – Presented by Kristen Barge, M.A., LCSW at DCC Conference 2006 (download pdf)
  • Parent-Teacher Conference / IEP Meeting Sample Agenda (download pdf – download word document)

Managing Behavioral Issues

  • Social Behavior in Young Children with DCC – Presented by Donna Doherty, M.S., R.N. at DCC Conference 2003 (download pdf)
  • Adolescence and Social Issues in DCC – Presented by Lynn K. Paul, Ph.D. & Janiece Turnbull, Ph.D. at DCC Conference 2003 (download pdf)

Medical and Dietary Information