What to expect when things are unexpected

Diagnosis. It’s a life changing word that no one expects to hear. When it’s not part of your immediate world, it can feel like a foreign thing that only happens to other people.

Some diagnoses are given at birth. Others come months or even years later when the signs start to emerge. Everyone’s situation is unique.

For us, there wasn’t anything obvious about our child’s challenges in their first year of life. We never missed a check-up or medical appointment. No issues were flagged. In the next year, things started to change. I couldn’t quite put my finger on how things weren’t quite coming together as I would have expected. These signs showed up so gradually that it was hard to know when there was enough cause to take action. The doctors saw the same things but didn’t want to make any diagnosis too quickly.   

We spent more than three years living on the edge of a diagnosis for our child. I lost time and sleep trying to work through so much uncertainty: did they or didn’t they have certain conditions? Yesterday they did that skill, but today they won’t – what does that mean? Should we just wait and see what happens? Am I over-reacting or is there enough going on that I need to do something? If so, what do I do? But then it can’t be anything serious, because if it was we’d have received a diagnosis right? Do we need a diagnosis before we take action?

Now, a couple of years after my child received multiple diagnoses, here’s what I wished I’d known at the start:

Denial isn’t helpful.

There’s a time and place for waiting and seeing how your child goes. Just don’t hide behind it. If things aren’t developing as expected for your child, making excuses is equal to doing nothing, and doing nothing changes nothing. Your child needs you to advocate for them.

Don’t wait and see for too long.

If you’re waiting and seeing, set some goals and timelines. If your child meets them then that’s great! But if things don’t go as you’d hoped, it could be time to speak to someone. Start with your GP. You could also reach out to your local early childhood intervention provider or community health centre. And connect with other parents through organisations such as Reframing Disability or MyTime or join some online parent groups.

Use the internet sparingly.

It’s easy to jump online and hunt for answers. It’s also easy to spend waaaay too much time reading and watching whatever you get your hands on. Some things might be helpful but lots may also be confusing, overwhelming and not entirely accurate. Find some credible resources and stick with those. Or better yet, go directly to a professional or talk to parents on a similar journey.

Ask the professionals your questions.

You’re not wasting anybody’s time; it’s part of their job and is a valid use of their time. You’re probably actually saving time in the long run because the sooner you put a program in place to support your child, the sooner both you and your child start to build knowledge and develop skills. Don’t forget that other parents are knowledgeable experts in their own right as well.

Focus on getting your child help, not why they need help.

You can tie yourself in knots trying to work out why things are a challenge for your child. Simply put: focus on the solution, not the challenge. Be informed but don’t overthink. Instead find your child help through formal and informal supports to remove the barriers to their challenges. Not only will you be helping them be the best version of themselves but this approach may lead to finding the answers you wanted anyway, and possibly even a formal diagnosis.

Don’t fear a diagnosis, it can be helpful.

If/when your child gets a diagnosis, don’t assume a label is limiting. A diagnosis helps us to better understand our kids and improve our relationships with them. It may also give access to funding and can open up opportunities for extra help in the areas of life where it’s needed. A diagnosis can also help our kids to better understand themselves and be proud of who they are.

The words ‘disability’ or ‘delay’ might sound scary at first.

They won’t always feel like this though. It might even change you and your family for the better. I bet I know what you’re thinking though, and you’re not alone: no one believes this at first. But give it time and you’ll see what I mean.

Finding your tribe will be one of the best things you can do.

Friends come and go on this journey. However, other parents of kids with disabilities and delays will welcome you into their community with open arms and without any kind of judgement, with or without a diagnosis. I’ve never experienced such a supportive parenting community anywhere else and I wish I’d connected in sooner. Lots are on Facebook but some are face to face. Some are run by parents and others by disability organisations.

Take care of your own mental health support.

Connect with friends, see a professional – do whatever is helpful to you. But do it yesterday. I can’t emphasise this enough.

Communicate and support each other.

All the people who love this child will react and cope differently at different points in time. This can be challenging for everyone. There’s no easy answer for this, except to try to be aware of it and remind each other to communicate as you need in a safe space.  

Your child is still your child.

Your child is not a diagnosis or a label. They are the same person they were before you started this journey. You’re still their parent. You are setting them up for their best life possible – same as any other parent – and you’ve totally got this.

By Bethany Woollatt.

Bethany is a mum to one of the cheekiest kids she knows, who just happens to be taking her on a journey into the world of disability and delays. Having a child who sees the world differently has challenged Bethany to see it differently too. As a result, she threw away the map. Now she’s exploring and embracing this new world, hand-in-hand with her child.

Bethany has a background in marketing and communications. She’s also doing post-graduate studies in inclusion, which she is deeply passionate about, so she can try to bridge the world she used to know with the new one she lives in now.