Receiving a diagnosis for your child can be devastating. It’s confronting to have your fears confirmed, hear the condition said out loud and seea diagnosis next to your child’s name for the first time.

A diagnosis for your child makes things real. It closes the door on the hope that you’re just imagining things. It heralds the start of a new journey, on a different path to the one you originally planned to take.

In an instant your worldview changes. Your original plans and expectations are shattered. Your whole life is turned upside down. You now have an answer but it might not be the one you were hoping for. Having an answer is also little comfort when you have no idea what to do next.

Don’t ignore your emotions

Following a diagnosis, you can feel more isolated and alone than ever before. You may find yourself going through the motions as you keep on working, caring for the rest of your family and tending to the house while trying to make sense of the news.

Don’t ignore your feelings. If you keep powering on, it will be harder to process and accept these emotions down the track. Allow yourself time to grieve and to acknowledge what the diagnosis means, so you can start accepting the news and better support your child.

Find someone to confide in and take the opportunity to talk through your fears, sadness and despair. Acknowledging these feelings early on will help you better manage them as you move forward on this new journey.


How to move on after the diagnosis

The best advice I ever received (a few years after the first of our many diagnoses) was that the diagnosis was not an end, but a beginning. Once the initial shock has worn off, it’s important to find support, discover perspective and start to map out a new way forward.

It might be the end of your original plans and dreams for parenting, however, a diagnosis doesn’t mean you give up having dreams for your child. It gives you the opportunity to create new ones, which can be a wonderful and empowering thing.

If you are a parent to a newly diagnosed child, or you know someone who is, here are some suggestions for moving forward following a diagnosis.


Recognise you are not alone – you may feel isolated but there are others going through similar experiences. Find them on social media, join a support group or research information online.


Make time for yourself – the period following a diagnosis can be a whirlwind of appointments and meetings. Don’t forget your own needs in the new life you are building – make time for you.


Trust your instincts – it’s overwhelming having to make decisions on treatments and therapies following a diagnosis. But, you know your child best. Believe in yourself – you can do this.


Knowledge is power – don’t rely only on the information you receive from specialists. Do your own research so you can ask questions and better advocate for your child’s needs.


Discover adult advocates – listen to the experiences of adults who share your child’s diagnosis. Understand the opportunities and challenges that may lie ahead. Learn from them.


Understand your role – remember, this journey is about your child, not about you. Do your best to set aside your own fears and beliefs so you make the best decisions possible for your child.


Be open to the positives – a diagnosis is usually seen to be a negative, making it hard to find the positives. Challenge yourself to look at things differently, focus on your child’s strengths and find the opportunities amongst the challenges (because they are there and you can find them).


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