How many times in the past week have you doubted yourself?

By Kelly Wilton

The ability to keep our head held high in the face of all the different pressures of special needs parenting will vary for us all. It may be a constant nagging feeling that you are never doing enough for your child, that you are missing something for them – a particular therapy, diet or an alternative way of looking at something. Or maybe you’ve had an NDIS meeting and you are disappointed with the outcome.  

The constant noise in your head can become overwhelming. 

And I haven’t even touched on the iceberg that are spouses and partners! It’s likely that from time to time, you aren’t going to agree either. How many times are you not ‘on the same page’ and you are seemingly arguing about the same thing over and over again? 

The expectations and pressure seems to come from all angles. 

I used to think that I had to do it all, have everything under control, because that what was expected of me – that was the advice coming ‘at me’.  

That’s a pretty tough expectation to put on anyone.  

So why as special needs parents do we feel under such pressure?  

In the early days of my son Mikey’s diagnosis I was not once told to take a breath and be kind to myself. I didn’t have a network of support yet, I was still finding my feet in this new world, or trying to, in between all the appointment dashing! I was exhausted, stressed and constantly questioning myself. 

Right from the outset we need support and understanding from our wider community. This begins in the doctor’s room where we get that first piece of information about our child; that news that turns our world upside down.  

Everything we had imagined about our future gets replaced with a world that we had never anticipated nor ‘dreamt’ about. Our children are vulnerable as it is, so when a diagnosis is added to the mix, it is quite understandably frightening to parents. Yet, not once early on did anyone tell me that it was going to be ok.  That somehow we would figure it all out, with Mikey leading the way… 

Maybe if we had a better way of supporting families on this unique parenting journey in those early months, years and beyond we would have fewer mental health issues amongst special needs families and the subsequent breakdown of relationships. 

I am all too aware of the mental health issues surround special needs parenting. I’ve witnessed it and experienced it firsthand. I wonder at times if things would have been different if I’d had professional advice to support ‘me’ rather than ‘talk at me’; if at the first appointment or at the first therapy session, there was a social worker there or a counsellor or just someone who could offer practical support and realistic expectations to help me through things. Would this then help my family as a whole?  

Right now it’s up to us to put ourselves first – no one else will do it for us.  Statistically our kids are still one of the most vulnerable and marginalised groups in society. So what does that make us? As parents, that puts us in this group also. 

But it doesn’t have to continue to be like this. We can start to push back and make our voices heard. The biggest swell only needs to start with a single ripple… so whatever it is, go out there and start to make the change you want to see happen, and talk to others who want to help you!  

Let’s support one another fiercely again, to the point where we are no longer breaking down, but building each other up to be the strength we need in our community, our families and for ourselves.

Follow more of Kelly & Mikey Danger’s journey at www.lovingdanger.org. Their patient page for HHE Families can be found at: www.rareconnect.org/en