After a Diagnosis or Problem is Identified

When your child or youth is diagnosed with special health care needs, it changes your vision of the future. Suddenly, you’re moving in a different direction, taking a road quite different from the one you thought you were traveling. Worry, fear, confusion, sadness, and grief are common feelings for parents of children and youth with special health care needs (CYSHCN). You’re facing a big change, but you can learn to make adjustments. You and your family can find healing and acceptance on this new road.
Children with special health care needs are those children who have or are at risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally. It is estimated that approximately 15% (Child Health Data National Survey of CSHCN) of the nation’s children between the ages of 0 and 17 have a special health care need.
This definition was developed by the Maternal and Child Health Bureau, Division of Services for Children with Special Health Care Needs, in collaboration with many experts in child health, including parents, and it has become widely accepted. This definition includes children with a broad range of conditions or chronic illnesses. Adjusting to a diagnosis is something that nobody really thinks about until they are faced with it. It is common for expecting parents to say, “we don’t care if it is a girl or boy, as long as it is healthy,” but when you have a child that is not healthy, or receives a diagnosis later, it is something you cannot help but think about. Suddenly you have so many question and uncertainties.
  • What does this diagnosis mean for my child? How will it change his/our lives?
  • How are we going to deal with this?
  • Do other families feel like we feel?
  • How can we learn the most about how to help our child?
  • Where can we find help?
The most important adjustment you can make when your child receives a diagnosis is to remember that the diagnosis does not change your child; focus on your child’s abilities rather than her disabilities.
This section of the Portal has content for families of children with a new diagnosis. We hope to help with information, including:
  • Knowing You are Not Alone
  • Working with Health Care Providers and Medical Homes
  • Learning about the Diagnosis
  • Caring for Your Child with Special Needs
  • Taking Care of Your Family and Yourself
When visiting the specialists and other health care professionals for a diagnosis and treatment for your child, you may hear many terms you are unsure about. Many abbreviations and acronyms may come up in your conversations with providers. Do not be afraid to stop the conversation and ask what things mean; it only makes you more informed. If you do not have the chance to ask, go to our list of definitions and terms that are commonly used for children with special needs.
To learn more about Children and Youth with Special Health Care Needs (CYSHCN), go to Child Health Data National Survey of CSHCN.

Authors & Reviewers

Initial publication: October 2013; last update/revision: May 2016
Current Authors and Reviewers:
Author: Tina Persels
Contributing Author: Shena McAuliffe, MFA
Reviewer: Gina Pola-Money