As a rare parent advocate, one of the questions I get asked most by newly diagnosed families is “What do I do next? How will I manage this?”
My good friend and colleague, Anne Bruns, and I co-authored this article for Exceptional Parents Magazine’s annual “Navigating Special Needs Resources” magazine tackling just this topic. Click here to read “The Next Day: Steps to Take After Receiving a Rare Diagnosis.”
Read an excerpt from this article:
Finding out your child has been given a tough diagnosis is not something you can prepare for and the next steps can be just as hard. A few insights from what I did and what I wish I would have done.
What do I do now?
Breathe. Deep breaths over and over. Take some time to yourself and try to clear your mind. It is absolutely normal for you brain to be racing with questions, frustration and fear.
- Try to clear your mind as much as possible and grab the closest pen and paper.
- Write down everything that comes to mind. The questions you have, what you are afraid of and any thoughts coming to you.
- Take your list to someone you trust to help you read through it. Begin to organize your questions with your most important needs first. As you begin to work through your list, your most important concerns will become clearer and will be the starting point for your education.
- Talk to your child’s doctor and care team about the medical concerns you have. Be honest and frank with them – let them know this is overwhelming and you are going to need to ask a lot of questions, some over and over. Although this may be a brand-new situation for you, your child’s healthcare team will have experience with newly diagnosed children of various disorders.
Work with the healthcare team to help you determine the next steps on the clinical side.