So here we are, PDD-NOS diagnosis and no idea where to start. We were set up with an appointment with Autism SA and given our report from the Women’s and Children’s Hospital that day. One thing I haven’t mentioned thus far is for us we never hid the fact that we were having issues with Zac and that we were seeking some sort of diagnosis or answers as to why things were the way they were and I’ve got to say that really did benefit us in the end.
Because we took this approach I really think, not only did we get a lot of understanding (or at least what we perceived as understanding) but we did find out information we wouldn’t have normally gotten. Thanks to a random conversation my husband had with someone at work we were introduced to the Early Intervention Research Program that was running at Flinders University at the time. Unfortunately this doesn’t exist the same way anymore but there are other organisations that do still offer that therapy, it just costs a lot of money.
Finding out about this I immediately put us on the waiting list (which at that stage was around 8 months). He wasn’t even diagnosed but I figured that didn’t matter as the reality was if he didn’t get diagnosed with anything then I would simply take myself off the waiting list.
This program was part of the information I was given by the Women’s and Children’s Hospital so that also gave me comfort knowing I was kind of on the right track. At this stage he had already been having some Speech and OT based on DIR Floortime as well so I really felt that the two combined were going to help.
I won’t go too much into therapy today because I’m actually going to talk about that in a later blog but the only thing I will say now is that you need to do your own research and trust YOUR instincts on what is best for your child. It’s sad to say that I did come across some therapists in my travels (and continue to do so) that seemed to have their own agenda as to what was “best” for my child. Many of them would discourage or be negative about some of the approaches I was taking (I’m a Naturopath for goodness sakes, I do think diet / supplements and other alternative therapies need to be incorporated) plus I combined therapies together that were opposites in their approach but I found they gave us some “balance”.
Anyway, enough of that…
So how did we survive that year… Firstly I was only working 1 day per month.. I know.. not much really but the reality was this HAD to be the focus for awhile.. he wasn’t verbal.. but thankfully he’d moved on slightly from the “Weetbix Diet”…
I’m not proud to say but my daughter definitely had to take a backseat for awhile… She was 6 years old and really, I’m blessed with the fact that she was such a calm soul .. she just blended in, would help me whenever she could just to be around me I think, and became my assistant therapist.
Zac, bless him, worked hard… Therapy and the hours required to do it were long and hard but he did it and frankly.. I can’t remember the exact first word he said (it was one of the therapy words) but the first day he repeated a word I cried…
EVERYTHING became a therapy session!!!
Going to the fruit and veg I’d have him using the tongs to grab salad and put it in the bag, I would get him to point out the different coloured cars when we were driving, the poor kid was constantly having to point to things and repeat things and show me things every waking moment… BUT… it was worth it because his development started to really get moving.
That year we came leaps and bounds with his development.. language was improving, and meltdowns did start to slowly calm down.. not a lot but enough… don’t get me wrong though, that was NOT an easy year… what it did give us though was hope.. hope that things were going to get better and hope that we may at some point have some sort of “normal” existence.
It was incredibly slow when I look back but given how things had been every improvement was a glimmer of hope into the future and I hope by reading this it might inspire you to know that the hard work pays off.
Until next time, stay calm and stay healthy.