For every child with a diagnosis, there’s a parent who remembers hearing about it for the first time.
We’ve talked with many parents and found a wide range of experiences with diagnosis. Some were deeply relieved to find answers; others felt like it was hard just to breathe. Some people had a single diagnosis, and others have had as many as 10 for the same child. You might be left reeling, not knowing where to go next. Or you might feel hopeful because you finally have something to grab onto and a direction for finding help for your child. Whatever your child’s diagnosis, and whatever your reaction, know that you aren’t on your own.
Most parents can remember the moment when a doctor told them their child’s diagnosis and the emotions they felt. Parents also remember the way the doctor delivered the news – and the doctor’s style might have made things better or might have made things even worse.
Getting a diagnosis is just one step on your path as the parent of a child with a disability or special health care needs. We hope the information on this page helps you in this part of your journey.
We’ve heard wonderful and less-than-wonderful stories from parents about the moment they received their child’s diagnosis – and how the news was delivered. Some got the diagnosis on the phone while in the grocery store, over email, or in the hallway at the hospital. We’ve heard about doctors changing lives in that key moment. Some held a parent’s hand while giving that life-changing news, and others worked with children to take ownership of their own treatment. On the flip side, we’ve also heard about doctors that made parents think there was no hope for the child’s future.
There are many different bedside manners for doctors and different styles doctors use when giving a diagnosis. After all, doctor-patient communication and doctor-patient interactions are very personal. Our Diagnosis for Physicians page talks about best practices and professionalism in health care; these may or may not match your experience, but are good to know.
No matter what, getting a diagnosis is a big moment for a family. Here are a few ideas we’ve gathered from other parents and professionals to help you during this time.
Right after getting your child’s diagnosis, it can be so valuable to talk to other parents who know what you’re going through. They can tell you which doctors were most helpful for them, give you tips for school, and guide you through the process of getting support.
Here are some ways to find other parents, community support, or specialized programs:
A diagnosis is an explanation of symptoms, not just a label for your child. Before and after diagnosis, your child is still the same person.
A diagnosis is a powerful tool for:
As your child gets older and their symptoms or behaviors change, you might find that the diagnosis or treatment plan no longer fits. Another diagnosis may fit better. Trust your gut and keep asking questions.