Receiving a Diagnosis for Your Child

Overview

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.

The Diagnosis Moment

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.

• If you are pregnant or just had your baby, sorting through your emotions is extra-complicated.  Our page on Prenatal and Infant Diagnosis has tips just for you.
• It’s easy to get overwhelmed. Give yourself time after getting the diagnosis to think about what you’ve been told. Maybe figure out what questions you have and write them down. Then, if it wasn’t already set, call to schedule a follow-up visit with the doctor in a few days to go over your child’s diagnosis again and discuss any treatment options or next steps.
• You might want to talk to the doctor alone, so if the doctor asks that you bring your child to the follow-up visit for payment or insurance reasons, you can bring someone else along to sit with your child in the waiting room.
• If you didn’t already get resources or information, call your child’s doctor and ask for books, articles, handouts, or websites to read over to better understand your child’s diagnosis and treatment options.
• Don’t be afraid to get a second opinion. If something doesn’t feel right about what the doctor said, or what they recommend for treatment, take your child to a different doctor or ask if there is another specialist you can see.
• See our page My Child Has a Diagnosis, Where Do I Start? for tips on what to do next.
• See our page on How to Talk to Your Doctor for tips on how to get more out of your next appointments.

Getting Support

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:

• Visit the Texas Parent to Parent website or call them at 866-896-6001 to be put in touch with other parents with children that have the same or a similar diagnosis – or have walked this same journey.
• Look through our Find Services, Groups, and Events section to find programs and organizations near you that help with your child’s specific diagnosis, disability, or special health care needs. They will often have the most up-to-date information on research, treatments, therapies, and specialists who can help you.
• Use our website to connect with other parents. 
• If your child has a rare condition or multiple diagnoses, see our page on Children with Multiple Disabilities, Rare Conditions or are Undiagnosed to find tips and support.