It may be hard to think of what to say or ask after the doctor gives you a diagnosis for your child. And many of the questions you'll need to ask will be specific to your child's condition, age, and prognosis. It's a good idea to write down all the things you want to know and don't understand and bring it with you to the appointment so you won't forget. But bring along this list of 10 more general questions, too. They'll make sure you get a clear idea of the next step for both the doctor and you.
1. What can we do to help our child right now?Your doctor is going to be talking to you about specific procedures and therapies and goals, many of which will play out over months and years. It's worth asking whether there are specific things you can do immediately that will improve your child's health, comfort and functioning. Taking action will also make you feel more in control.
2. What should we tell our child about this?Children with special needs, particularly those who are older, may need to participate in their therapy and treatment. Others may not be able to understand much now, but can benefit from having a frame of reference for their feelings and behaviors. Ask your doctor for some advice on what your child needs to do, know, and comprehend -- and how to get that message through.
3. Are our other children at risk?Many disabilities -- whether medical, developmental, behavioral, or psychological -- have a genetic component. Knowing whether your other children need to be tested, evaluated, or parented in a particular way can help you ensure a better outlook for them, or at least put your mind at ease.
4. Can you recommend a book about this subject?A good book, written to help parents, can give you the information you need at a pace you can tolerate, not the rush of facts and alarms you may get in the doctor's office. See if your doctor can recommend one to you; and if you find one on your own that you find effective, be sure to let your doctor know so he or she can pass the title on to other parents.
5. Can you give our phone number to another family with a similar diagnosis?Parents can be an amazing resource to one another, whether for information or for support. You'll want to know about support groups in your area and Internet e-mail lists, but to start it may be most helpful to find one other family to connect with. While your doctor may not feel comfortable handing out another parent's contact information, he or she may agree to pass yours on to another family and let them decide whether to help.
6. Are there services available in our area for this?Therapy, respite, support groups, tutors, specialists -- your child's diagnosis may lead you to a world of services to seek out, and their proximity and convenience to your home can make a big difference in how complicated caring for your child will be. Ask your doctor for contacts to services in your area. Even if you don't use them right away, you'll want to have your research done so you can move quickly when the time comes.
7. Are there any research opportunities we can participate in?Sometimes, the best way to get your child the most advanced treatment is to participate in research studies. Your doctor may know of some going on at universities or medical facilities in your area, or know how to find out about more far-flung possibilities. Letting your doctor know up-front that you're interested in hearing about any opportunities will put him or her on alert for solutions that may fall outside standard procedures.
8. What's your next step?Doctors may be very forthright about what needs to be done now, or may take a fuzzier, wait-and-see approach. Question the doctor closely on what he or she is going to do next for your child, when that will occur, and what you need to do to facilitate it. If the doctor wants to wait before acting, ask what you can do in the interim and agree on a timetable for future contact and action.
9. What questions should I be asking you?You may only be having the first-diagnosis conversation once, but the doctor's probably had it hundreds of times. Ask him or her what you should be asking. Maybe he's had some great questions from parents in the past, or maybe she's always wished a parent would ask her a particular question. You can benefit from the doctor's experience in more ways than one.
10. What should I do if I think of more questions?As you do research, as you talk to other parents, and as you lie awake during sleepless nights, you're going to come up with other questions to ask the doctor. Find out now the best way to get those answered. Is he available by phone or e-mail? Do you have to make another appointment with her in order to have that conversation? Is there a nurse on staff who's good at answering questions or passing them on? Make sure you know who, when, and how to contact.