The heart breaking truth about NDIS support

Blog Image for article The heart breaking truth about NDIS support

My son was in and out of hospital from the age of 18 months. He had developed a respiratory issue that was exactly like asthma and treated like asthma, but they didn’t call it asthma. They didn’t really call it anything. But over the next two years, he’d be hospitalised from having low blood oxygen levels, which all began with a cough and worsened quickly from there.


These hospital visits would often occur in the early hours of the morning after I’d had little to no sleep. Trying to hold it together for my son, despite being physically and mentally fatigued in a way I’d never before known. And of course, riddled with fear. I mean, his breathing was the issue, naturally, this was worrying.

So, he doesn't say much…

On one of the first visits, after the doctors had asked all the questions I’d spent the last few hours answering with the nurses and the triage, they asked me about his speech, which had absolutely nothing to do with his breathing condition at all. 

“He’s almost 2 years old and he doesn’t speak,” the doctor stated like this was news to me. Also, he was 18 months old. “This is cause for concern,” he continued. I wasn’t too concerned, I’d not really noticed, if I’m being honest. Sure I knew he didn’t say much but I didn’t know any other 18-month-olds. There was nothing to compare to.

And so therapy begins

Shortly after, we began attending speech therapy sessions and occupational therapy sessions. Two things here; they’re very expensive and they’re boring as bat-shit. We don’t need to pretend they’re not. We’re not bad parents for it. Some things are educational and help our children’s progression and they’re fun. And some things are a drag but we have to do them and we have to pretend they’re fun for the sake of our kids.

But from me to you, these things are as dull as dishwater.

And yes, they are very expensive. We applied for funding from NDIS, and fortunately, we got it. But the process is a heart-breaking one and I don’t know if I expected any sort of warning before undertaking it, but just in case someone reads this at the time of applying for funding, it’s difficult.

The challenge is real

It’s difficult for two reasons. Firstly, I’m an idiot and I get confused by paperwork as soon as my name is on it. Secondly, the application requires you to acknowledge how difficult it is to be the parent of a child with a disability. You have to give as many accounts as you can of occasions where your child’s disability has meant that you have had to make special arrangements, or not been able to function as you would if they didn’t have it.

I had to document how my son’s speech delay meant that he was unable to participate in team sports, how we couldn’t leave him with anyone who didn’t know well enough to be able to communicate with him, how teaching him to do simple things was hindered by the lack of language and communication.

To fill out a form where you’re forced to think of all the things about your child that are a burden is, in short, horrific. It’s really heart breaking.

So if you do have to apply for such a thing, please give yourself a break. You’re doing an amazing job and so is your child. My son’s speech delay, severe though as it was, afforded me this amazing opportunity to get to know him in a way that I really don’t think I would have if he was able to speak to me. I learned to read him so accurately simply by the way he was sitting or standing. It was as much a gift as anything else, NDIS paperwork be damned.

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