After a Diagnosis or Problem is Identified

When your child or youth is diagnosed with special health care needs, it changes your thoughts about the future. Suddenly, life has seemed to change direction. Worry, fear, shock, 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 embrace 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 health conditions and who also require health and related services of a type or amount beyond that needed 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 created by the federal Maternal and Child Health Bureau, Division of Services for Children with Special Health Care Needs, in partnership with many experts in child health, along with parents, and it has become widely accepted. It includes children with a broad range of health issues or chronic illnesses. Understanding and accepting a diagnosis is something that nobody really thinks about until they are faced with it. It is common for 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 gets a diagnosis later, it is something you cannot help but think about. All of a sudden you have many questions and concerns, such as:
  • 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 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 working with 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 talks with providers. Do not be afraid to stop and ask what things mean; it only helps you to understand. If you do not have the chance to ask, go to our list of definitions and terms that are often used for children with special needs (see Terms/Acronyms/Definitions).
Something to remember if your child is diagnosed with a special health care need is that the diagnosis does not change your child; focus on your child’s abilities rather than her disabilities.

Authors & Reviewers

Initial publication: October 2013; last update/revision: July 2019
Current Authors and Reviewers:
Author: Tina Persels
Contributing Author: Shena McAuliffe, MFA
Authoring history
2013: first version: Tina PerselsA; Gina Pola-MoneyR
AAuthor; CAContributing Author; SASenior Author; RReviewer