So, we were handed our piece of paper and it clearly spelt out that little Miss A is autistic.
At this stage it was no shocker, no big revelation, no massive lightbulb moment. We would have been shocked if they had said she wasn’t. This day was seen as just a formality for us, confirmation of what we already knew, so along with the diagnosis, we were given an undeniable feeling of validation.
So much was suddenly obvious to us. Obvious that there was always something. Obvious we were gonna to do anything in our power to help our girl. It was all so obvious, and now we had answers, we could move forward, right?
But what wasn’t so obvious was that I had entered a very new and rapidly evolving stage. Possibly enveloped in this was a grieving stage, certainly lots of frustration, a sense of bewilderment and a zillion other emotions. But this was something I’m not sure is really talked about. I’m not sure we were ‘supposed’ to feel these emotions post diagnosis, or if anyone else is honest about having those emotions anyway.
I think this is a really natural part of the process and I think it would apply to any life impacting diagnosis. When you are handed your newborn bundle of joy, this is not what you are expecting to happen, and for many, it’s not seen coming. The diagnosis hits them in the face like a freight train and bouncing back from that can be hard. Really hard.
I have heard some people say that they were not relieved at all; they wanted to hear that they were going insane, it was all in their head and then they cycle their way through a range of emotions; fear, anger, frustration, desperation, confusion, hope and a myriad more. I guess I’m still processing many of these. I think I’m still whipped up in a whirlwind of emotion and it’s hard to tell what I’m feeling and maybe it will never be 100 percent clear. Perhaps it doesn’t matter.
Maybe I am grieving for our girl and what could have been, or at least what I was sold as what should have been. Is this a sense of grief connected with a sense of loss? Or is it something else? It’s a very confusing time. While I know that our child, of course, is still a part of our lives, do I feel that I have lost the child I expected, or the child I thought we had? I know this isn’t how everyone feels, I certainly don’t view this diagnosis with all doom and gloom, but then maybe it hasn’t quite dawned on me yet how much this diagnosis will impact her life.
Maybe I’m channeling my Eternal Optimist (that so isn’t me). So I really feel for the people who are shocked by the diagnosis, the ones who didn’t see it coming, because for those people it must feel like the day that took their last hope. The realisation that the struggles they were dealing with are not temporary. For those people there must be a shock factor that completely rocks their world. I know for many, there really is a profound sense of grief and a strong sense of loss for what might have been.
For me mostly I feel like the lid has been lifted and all the planets have aligned, and now we can really get down to navigating this new world.
But what are you supposed to do after a life changing diagnosis is handed to you on a silver platter? Well if you are anything like us, you do what any self respecting Melbournian would do - go get a coffee!
We sat sipping our piping hot lattes and chewed it over. It was a really weird feeling - this was life changing and yet in so many ways it changed nothing. We had totally come to terms with Miss A being autistic already, so this day had just been about ticking the right boxes. But the bit we were struggling with was what the next steps would be. What should we do now? How did this work?
With the help of our caffeine loaded beverages, we decided the first thing we needed to do was tell Miss A (more about that in another post) and then move on to getting her support. Support from who though? When? And how? What would it cost and how would we fund it all? This was all a big mystery to us.
The acronym NDIS (the National Disability Insurance Scheme) kept being thrown at us as a means of gaining financial support, but to be honest, I had little idea of what that actually was, or how you even begin with that. What was involved? Who do we need to talk to? What did we even need? How would we know if we qualified?
We procrastinated for a good while, probably letting some of the dust settle and sub-consciously absorbing the enormity of it all. After a few months with little to no action, the GP prompted us, and we enter the daunting world of applying for NDIS funding.
Here is where practicality stepped in again, a nice big, fat, chunky form to fill in. More box ticking, in the literal sense. For me this became my temporary happy place, it took some of the pressure off of thinking about how we would navigate the new world we had involuntarily entered.
And while I’m doing this sort of stuff, I don’t have thinking time which is sometimes a good thing, if I’m focusing on the practical stuff I don’t have to focus on the emotional stuff, right?
Distraction can be a wonderful thing. These forms were no walk in the park though - they took hours and hours across several days to fill out. If English is not your first language or you struggle with form filling, this is a massive hoop to jump through to get funding for the supports your child needs.
Looking again at the Psychologist report, it told us that Little Miss A needed lots of allied health supports, and makes recommendations for hours and hours of OT, Speech Therapy and Psychology sessions.
My brain went into a frenzy and internally I started panicking, thinking about how we were supposed to squeeze Miss A into all of these services; shoe horn them into our schedule, when doing everyday things are already overwhelming and causing so much angst? If we can get her to school on a regular basis, we are really winning and let me tell you, that wasn’t happening often (cue another post). So to get her to other services, regardless of how much we deemed she needed them seemed impossible to me, and we hadn’t even allowed ourselves to dwell on the financial impact all this might have on us.
But regardless, the training wheels well and truly came off, and we were on our own, plodding along, slowly filling out the NDIS forms and hoping that we would work out all the ’small details’ like actually finding a Psychologist, Speech Therapist or OT later. Once the forms were actually completed, we sat back and waited - the wheels of government funding do not turn quickly.
While we waited, we were rattling around a system trying to navigate finding appropriate services in a system that is stretched to its limit. We found wait lists were crazy; 6 months to a year seems to be considered a good time frame to be waiting, and that’s if you can even get on a waiting list. So many services have closed their books as they are full to capacity, taking on no new clients.
How you are supposed to navigate this new world in a raw and emotional state is beyond me. The diagnosis is there, the boxes are all ticked, you jumped through all the hoops to get here and you didn’t stumble - and just as you feel like there is light at the end of the tunnel and you are sent off on your merry way to find all the supports your child needs, you hit roadblocks and dead ends at every turn. For us, having NDIS funding would be the make or break for being able to utilise these desperately needed supports.
It was all so completely unclear on every level. We hadn’t been given any referrals or pointed in the direction of any helpful websites. At a time when we were probably at our most vulnerable, we spent countless hours seeking the best information and resources that we could and in the absence of any other avenues, and probably, like many, we became expert investigators. Desperate for knowledge and information and to do the right thing, we read everything that came our way.
The downside to this approach was that with all the information out there it’s really hard to weedle out the good from the bad. The internet is full of misleading, outdated and inaccurate information. It’s so frustrating and confusing. We hunted down what we deemed to be golden nuggets of information or articles that resonated with us. We found a handful of go to websites that became our little of rays of sunshine. Places to go to in a virtual world that we felt would arm us with enough knowledge and insight to begin to put our best foot forward. Some understanding and support, to guide Miss A towards becoming the best version of herself that she could be.
It’s definitely been learning curve, in no way do we have it all sorted but the will is there and as time goes on, I am feeling ever more empowered and rolling with it.
Miss A did get some funding, and we did get the Psychology help she needed. We’re just beginning with the much needed OT help a year in, and as for the rest, we’ll work it out along the way.
For us, having that little piece of paper brings hope; hope that it will give Miss A the knowledge and power to embrace, celebrate, love and understand herself. We all need a bit of that!
Some of the resources we found useful: