Top Ten Things to Do After a Diagnosis

Though each child’s diagnosis is unique, and each parent may react differently, many parents report feeling anger, sadness, disappointment, fear, denial, rejection, guilt, and sometimes the feeling of a complete lack of control when their child receives a diagnosis. On the other hand, sometimes a diagnosis comes as a relief: finally, your child can begin getting the right care for his condition. No matter what emotions a family might experience, it’s important to know that those feelings are normal. When a child is diagnosed with a disability or special health care need, the family may face a time of uncertainty while they learn about the diagnosis. It can be a stressful and emotional time. Below, you’ll find a list of 10 things to do that may helpful to focus on after receiving a diagnosis.

1. Take a deep breath, and remember what is important

When receiving a diagnosis, parents and families are often overwhelmed. When you feel this way, pause for a moment. The most important things are right there in front of you: your child and family. Even though you may have feelings of sadness, grief, and fear of the future, you are the parent of a wonderful child who needs you (see You Are Not Alone (McGill Smith)).

2. Understand the diagnosis

When you first talk with medical professionals about your child’s diagnosis, you may be confused by the information, and even the language used. Usually, along with the diagnosis comes a whole lot of unfamiliar medical terms. You will not understand all these terms at first, but you will soon grow familiar with them, and this knowledge will be part of your ability to help your child. Ask the doctor for anything you can read about your child’s condition. If you have questions that were not answered in your first visit, write them down as they come up, and see if you can arrange a little extra time at a future appointment to discuss them. It’s likely you will have even more questions after taking some time to take in the news, and to research your child’s condition on the internet—which leads us to #3.

3. Beware of the internet

It is very common for parents of children who have just received a diagnosis to immediately start searching the internet for information on their child’s condition. Learning about your child’s diagnosis is useful, and the internet is full of good information, but for all of the good, there is just as much bad information. If you are going to do research on the internet, follow these simple guidelines to make sure that you are reading from quality sources (see Finding Quality Information):

  1. Look for the authors’ qualifications on each site you visit. If you cannot find anything about the author’s credentials, you may not be reading trustworthy information.
  2. Look for the mission and target audience of the website—the information should add to and not try to replace the doctor-patient relationship.
  3. Read the website’s privacy policy regarding personal information visitors give to the website.
  4. Look for the source(s) of the health information, the date it was published, or the last update on the pages. Current information and recent updates show that the information is more likely up-to-date and responsibly managed.
  5. Think about the reasons for claims about of any products, treatments, or services. Are these products, treatments, or services evidence-based? Is the website trying to sell something? A sales focus may mean that the website is biased to what they are selling. If you are thinking about a treatment, product, or therapy for your child's condition, share this information with your child’s primary care doctor.

4. Find resources and support in your area

Call your local or state Family Voices (FVAO) or Health Information(F2F) Center or Parent Training and Information Centers (PTI), and ask about resources and support that will be helpful for you (see Services Directory).

5. Start lining up services

If your child will need specialized services such as Early Intervention or Special Education, make the calls to connect with the providers or school district. It can sometimes take a while to get these services started, so don't wait to make these calls (see Early Services, 0-5 Years).

6. Understand the laws that may apply to your child

Become familiar with disability laws that apply to your child on both a national and state level so that you know your child’s rights and can advocate for them successfully (see Legal Issues).

7. Take care of yourself

This is a time in your life when you will feel more stress and anxiety than usual. Because you are entering a whole new world of "unknowns," it is very normal to have these feelings. Getting good sleep, eating right, and spending quality time with your family are just as important as the last six items on this list. Don't feel bad about taking time for yourself. You need these things to be a good parent to your children (see Caring for Yourself).

8. Take care of your family

How is your spouse handling the new diagnosis? What about your other children? Share your thoughts and feelings about the diagnosis with each other, and share the information you learn. Help each other to understand the diagnosis, and how to talk about it with others. It is important to help your family understand that the diagnosis is nobody's fault. It does not change the person that is your son, daughter, brother, or sister. Make sure you are aware of the attention that the siblings need, and help them to feel that the diagnosis is not "taking over" your family life (see Taking Care of Yourself and Your Family).

9. Educate your child about her diagnosis

Self-Advocacy is important, and starting early to help a child understand her diagnosis is important. Teaching can happen at all levels, and it is great if a child can explain to others about her condition without feeling embarrassed or that he does not understand it herself.

10. Take another deep breath

Some parents say a new diagnosis is a "rollercoaster," and as that may sometimes be true, it can also be a time to cherish your child. Rather than looking at it as a fast-moving car that takes you up and down and sometimes turns your stomach, try looking at it as a steady race that you can win if you keep a good pace. A new diagnosis is not the end of the world, even though it may feel like it. It is the beginning of a new world.


Information & Support

For Parents and Patients

Parent Training and Information Centers (PTI)
Provide training and information to parents of infants, toddlers, children, and youth with disabilities and to people who work with parents to enable them to participate more fully and effectively with professionals in meeting the educational needs of their children with disabilities. See the link for Download a List of Parent Centers across the USA to find the parent center in your state; U.S. Department of Education.

Family Voices (FVAO) or Health Information(F2F) Center
Family-to-Family Health Information Centers are nonprofit, family-staffed organizations that assist families of children and youth with special health care needs (CYSHCN). Locate state-based F2F HICs, providing support, information, resources, and training.

Authors & Reviewers

Initial publication: February 2013; last update/revision: November 2019
Current Authors and Reviewers:
Author: Tina Persels
Reviewer: Tina Persels
Authoring history
2014: first version: Shena McAuliffe, MFAR
AAuthor; CAContributing Author; SASenior Author; RReviewer