Open letter to parents of a child who is newly diagnosed

A roadmap to life after a diagnosis, from a mother who knows what you're going through.

parent of new diagnosed child getting news
Photo: iStockphoto

Dear Parent,

So your child has just been diagnosed with a condition that will affect them in the long term, if not for the rest of their life. Odds are you’re feeling anxious and overwhelmed as you try to get a handle on what this means. You’re likely worried the years ahead will not be easy.

I’m writing to you as the parent of four children who were diagnosed with a variety of mental health, neurodevelopmental and behavioural challenges when they were younger. The good news: After we got their diagnoses and started treatment, things got better—for each child and for the family as a whole.

While every post-diagnosis journey is unique, I can pretty much guarantee that, while the road ahead will have detours, blind corners and bumps, there will also be precious moments when you can coast for a while. I hope this roadmap of sorts will help you start to find your way.

First of all, a diagnosis doesn’t define your child. It’s just a snapshot. In no way does it capture all the unique and wonderful things you’ve come to know and love about him. Nor does it limit him or predict how his life will play out.

That said, a diagnosis does represent a way forward. Knowing what condition you’re dealing with allows you to zero in on the parenting strategies and supports that bring out the best in your child. I learned, for example, that calming myself was the essential first step in calming a child who was spinning like an ADHD-powered top.

A diagnosis also allows you to tap into treatments and supports (at home, at school and in the community) that might not otherwise be available to your child. And it enables you to better help your child understand the nature of her struggles over the years—something that may help her feel a little less frustrated, angry and alone.

Don’t be surprised if you find yourself grappling with a mix of emotions. It’s normal to feel relief (because you finally have some answers), sadness (about the fact that life may be extra challenging for your child) and worry (about what this diagnosis will mean for you and your child, both today and in the years to come).

You might also be beating yourself up about something you did or said that might have made things harder for your child. But please remember you did the best you could, given the information and resources you had at the time. And don’t blame yourself for things that were beyond your control. It’s not healthy for you or helpful to your child for you to become mired in regrets now.

You don’t have to deal with this alone and neither does your child. You’re not on your own, although it may feel that way at first—particularly if you and your partner aren’t on the same page when it comes to how best to help her.

You may find it helpful to join a parent support group (either in your community or online). And you’ll want to create a circle of support for your child (composed of peers and caring adults—sports coaches, teachers, neighbours and anyone else who thinks the world of your child). Friendships with people who get it will prove invaluable for both of you.

You do have to prioritize self-care. It’s easy to neglect your own health and wellbeing in the wake of a child’s diagnosis. But self-care isn’t selfish: It’s self-preservation. So stop treating sleep, physical activity, good food and fun like unnecessary frills. Instead, recognize them for what they are: essentials.

Dr. Google can be your best friend or your worst enemy. Don’t underestimate the power of the Internet to uncover potentially life-changing information—or to give you insomnia. I’ve never met a parent who had difficulty dreaming up worst-case scenarios, so don’t feel like you need to turn to the Internet for help if you feel it will add to your worries.

If you decide to venture online, you’ll want to set ground rules first. Promise yourself you’ll focus on the websites of recognized health authorities—organizations whose names you actually know and trust. And steer clear of websites pushing pricey and unproven miracle cures. (If it sounds too good to be true, it probably is.)

Recognize that this is the beginning, not the end. A diagnosis may feel like the end of the world, but it actually represents a brand new start for your child and your family. You’ll savour the extraordinary moments in the everyday. What might seem like small achievements to outsiders will represent landmarks worth celebrating to you and your inner circle.

You’ll pause to celebrate your family’s strength and resilience.

Your love for child—and your admiration—will grow so much that you’ll feel like your heart is going to explode.

Those are some of the gifts of this journey.

Safe travels.

Read more:
Your ultimate guide to the most common kid illnesses
The working parents guide to dealing with sick kids
Your most frequently asked kids’ health questions answered

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