With life being busy, busy, busy and stress being high, it’s been a while since I’ve written anything really meaningful, or full of thought. And today, I’m back, but I’m not writing with a focus on Down syndrome today. I just wanted to share some thoughts I had after a conversation I had with another parent just recently.

I was speaking with a parent who is currently going through the process of having their child assessed expecting a diagnosis of autism. In having this chat, it occurred to me just how difficult it is for parents going through this. With Down syndrome, the diagnosis was easy. Hope was born… she had Down syndrome. There was no denying it, there was no waiting for confirmation, we just knew right from the start. With autism, it’s not that simple, there’s no quick diagnosis at birth, and over the first few years as you watch a child, you start to discover that perhaps something isn’t quite the same as others. It then becomes a long, exhausting, and expensive process to get an assessment, and all the reports needed to finally get a diagnosis. Not only that, it involves quite a large amount of money. The parent I had been talking to has already spent more than $2000 and is still waiting for answers.

$2000… just think about that for a while. That’s a HUGE amount of money for most of us. $2000 to get a diagnosis to say that your child is possibly going to need extra help throughout their life.

That just seems crazy to me. Here is this parent, trying to parent the best she can and being amazing at it, while managing a job and everything else life brings. She’s realised that something isn’t quite right when it comes to her child’s development, she wants to do what’s right for her child, but the one thing she needs is that diagnosis and that is going to cost a large amount of money.

What happens to all those parents who CAN’T afford it? Are they left trying to deal with things themselves? They can’t get the diagnosis because they don’t have the funds, so do they not get the help that they need? I know there’s likely some Medicare help that will cover some of the cost, but it’s still potentially a large amount of money that someone has to find. Something just doesn’t feel right about that. It just doesn’t feel fair. Unfortunately, I don’t know that there’s much we can do about it. I understand people need to be paid for the work they do, and they can’t give out a diagnosis just like that, but I just feel like it must be such a burden for some families who are possibly already struggling.

There are a lot of parents also going through this that really just don’t know what to do. Not only are they trying to parent their child through this and trying to find funds they really don’t have, they are also trying to navigate a system they don’t understand. To make it worse, when they do get the diagnosis, there’s a whole new world of difficult to understand when it comes to the NDIS.

So now that I’ve shared, here is a message for all the parents who are going through this battle, or who may be thinking that it’s something they’re going to have to go through…

Don’t give in! Don’t give up! No matter how hard it is, your child is worth it! All the tears and the pain, it’ll be worth it in the end. While it may be difficult now, it won’t always be THIS difficult. I’m not going to say a diagnosis will make it easier, but it will help you understand, and it will help ensure your child can get the help they need. It may be expensive and you may question whether you are doing the right thing. You may wonder whether you could have parented differently in those first few years to change what’s happening now. All of those thoughts are understandable. Being a parent isn’t always easy and it involves constant work and learning. Some children are going to need extra help, and that’s ok. What you can do is everything in your power to ensure they can get that help. And that’s exactly what you are doing! While I personally don’t have experience in parenting a child with autism or going through the process of getting a diagnosis, I do know what it’s like to raise a child who has some extra needs. Sometimes you may just need an ear to listen, or a shoulder to cry on and my shoulders and ears are always free to anyone who needs them. Don’t ever feel like you are facing things on your own and if you do feel this way, reach out. We’re here for you too!