1. A List Of Things To Talk About

Before I go to Brody’s appointments, I always write down a list of things that I want to discuss with the health professional. If I don’t, I can guarantee that there will be something I’ll forget. Because of the busy nature of their job (mostly), it’s not always easy to get answers from health professionals unless you’re face to face with them, so being prepared is so important if you want to get the most out of your appointment.

Probably a glaringly obvious tip, but it admittedly took me a while to realise that writing a list is a good idea!

  1. Don’t Be Afraid Of Being ‘That Mum’

We all want to have good relationships with the health professionals involved in our children’s lives. But let’s face it, sometimes when you’re in our shoes you have to fight for services.

Don’t be afraid of being ‘that mum’.

The one who is a little bit pushy (but polite).

The one that sends emails or makes a few telephone calls to ensure that something is done.

The one that has consulted Dr Google and isn’t worried about speaking up about what they found – even if it’s wrong.

You’re your child’s advocate and their voice. Don’t ever be afraid to use it.

We’re all ‘that mum’ at some point (if not all the time).

  1. Bring Someone Along With You (If You Can)

If you can, bring someone along with you to appointments. Most of the time, Brody’s Dad can’t come along to every appointment. There are far too many, it’s impossible. But I’m really lucky that my Mum usually can come along with me. It’s nice to have some moral support. Sometimes you leave appointments feeling upset, sometimes angry and sometimes you just need to offload what was discussed and how you feel. Having someone there with you helps.

It also helps because it’s a bit of extra help watching your child so that you can actually talk. Although I know when you’ve got more than one child this is easier said than done! 

  1. Be Prepared For The Waiting Room

The waiting room can be awful for us. Brody tends to be a little noisier and not overly happy. People stare at us. My anxiety cranks up a notch and I find myself stressing about things like him going for the water cooler, emergency exit, or throwing a toy.

Sometimes no matter how prepared you are the waiting room is still a nightmare.

But, be as prepared as you can be. Bring snacks. Bring an iPad. Bring whatever you feel will make the wait easier for you both (I recommend chocolate). 

  1. Remember It’s Okay To Cry

We’ve all been there. Sometimes appointments are emotional and not everything discussed is easy on the brain or heart.

I admit I try my hardest not to get upset until I’m back in my car, but sometimes it’s just impossible. And that’s okay. That’s always okay. Don’t forget it. 

  1. Don’t Be Afraid To Complain

I’m very British in that I find it uncomfortable officially complaining about anything. And I’ll only do it if absolutely necessary. But sometimes you have to.

When Brody was a toddler, a hospital forgot to refer him for an emergency MRI. They had told me several times that they had and, fed up of waiting, I called both of the potential hospitals where the MRI could be undertaken and found out they knew nothing about it. Turns out a few people had thought ‘someone else’ had done it when nobody had.

Because of that experience, I’m now very much “that mum” with some things. As soon as he’s been referred for anything, I’m calling to make sure that the referral has been received.

At the end of the day, Brody is more important to me than what they think of me.

  1. Talk To Other Parents

Fellow members of the tribe ‘get it’. All of it. And they have what I call ‘been there’ advice – the best kind there is!

Sometimes it helps to ask friends, people you know or online, for help and advice before an appointment. Knowledge is power and sometimes they can help you get the best out of an appointment by letting you know what they know - be it about a particular condition or treatment.

Let’s be honest, sometimes you can be a prepared as a Scout leader and things won’t go to plan. But hey, dyb dyb dyb – it’s worth giving it a go!

You can read more of Laura and Brody's blogs at Brody me and GDD

Laura is also making it her mission to get supermarkets to stock affordable nappies in larger sizes for disabled children, support Laura's Petition here