Although each child’s situation is unique, and parents’ reactions to a diagnosis will vary, many parents report feeling anger, sadness, disappointment, fear, denial, rejection, guilt, and sometimes even a feeling of complete lack of control. On the other hand, sometimes a diagnosis comes as a relief: finally, your child can begin getting appropriate care for his or her condition. No matter what emotions family members experience, it’s important to know that those reactions are normal. When a child receives a diagnosis of a disability or special health care needs, parents, children, and families will 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 items on which it may be helpful to focus after receiving a diagnosis.
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 devastation, grief, and fear of the future, you are the parent of a wonderful child who needs you. (See You Are Not Alone (McGill Smith).
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 in the discussion. Usually, along with the diagnosis comes a whole lot of medical terminology and unfamiliar acronyms. You will not, at first, understand all these terms, but you will soon grow familiar with them, and this is a necessary part of your ability to help your child. Ask your doctor for any information you can read about your child’s condition. Ask about unfamiliar acronyms, and take notes on the answers. 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 future appointment to discuss them. It’s likely you will have even more questions after taking some time to absorb the news, and to research your child’s condition on the internet--which leads us to #3.
Beware of the internet
It is very common for parents of children who have just received a diagnosis to immediately begin searching the Internet for information on their child’s condition, and learning about your child’s diagnosis is useful and important. 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 assure that you are reading quality sources. (See Finding Quality Information):
- 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.
- Look for the mission and target audience of the website – the information should complement and not try to replace the doctor-patient relationship.
- Look for the source(s) of the health information, the date when it was published, or the last update on the pages. Current information and recent updates reflect that the information is more likely up-to-date and responsibly regulated.
- Think about the reasons for claims about advantages and disadvantages of any products, treatments, or services. Are these products, treatments, or services evidence based? Is the website trying to sell something? A commercial focus may indicate that the website is biased.
- If you are considering a particular treatment, product, or therapy for your child's condition, share this information with your child’s primary care physician.
Find resources and support in your area
Call your local or state Family-to-Family Health Information Center or Parent Training and Information Center, and ask about resources and support groups that will be helpful for you. (See Services Directory).
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 delay on making these calls. (See Early Services, 0-5 Years.)
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).
Take care of yourself
This is a time in your life when you will feel more stress, anxiety, and uncertainty 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 6 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.)
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 gather. Help each other to understand the diagnosis, and how to share this information with others. It is important to help yourself, your spouse, and your children understand that the diagnosis is nobody's fault. It does not change the person that is your son, daughter, or sibling. 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.)
Educate your child about his/her diagnosis
Self-Advocacy is important, and starting early to help a child understand their diagnosis is important. Teaching can happen at all levels, and it is great if a child can explain to others about his condition without feeling embarrassed or that he does not understand it himself.
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.