I'm not sure if we are crazy, but we agreed to accompany a group of close friends on a trip from Melbourne to Uluru during the Easter Holiday break.
For those people with no concept of the size of Australia, it is like driving from one side of Europe to the other. But in harsher conditions, sometimes with days of no petrol stations or internet services.
Image courtesy of Google
Knowing that Nicholas is special needs meant that packing "lightly" was a bit more of a challenge than usual. I guess his disability isn't as very visual when you only see him every once in a while within a controlled environment. Often people comment that he doesn't look like he has a disability. At social events we can set him up in the corner with his iPad and his cars and he will generally be no problems. There is another four year old on this trip with us. When you put them side by side, you can see the differences quite clearly.
But in the outback, Nicholas can run and continue running. He doesn't respond to "stop", but will respond if we start to sing a Justine Clarke song. That has been the greatest challenge so far on this trip, his ability to go from stand-still to full on running in 5 seconds. Which is manageable if there is an adult looking out for him, but if you turn his back all of a sudden he is half way to Adelaide in the wrong direction. When he gets exhausted he falls to the ground and is a dead weight to pick up. He then re-energises and he is off again.
So we needed to bring a pusher with us. Which took up lots of room in the back of the car and sometimes the pusher was completely impractical in the outback (it is falling to bits and it is not a rough terrain pusher), but the ability to strap Nicholas into a safe space has been so important for his safety and our backs! At 20 kilo's we are pushing the limitations of the stroller a bit.
He is too heavy to go into a camping back pack and when we do horsey rides on our backs he doesn't have the understanding to clasp his hands around our necks. We looked at the piggy back rider, but when he is exhausted he is a dead weight.
Today has been the first time since starting this adventure that I have had a change to read the online newspapers and although I was initially shocked to read the article of the Canberra Primary school that build a "cage like structure" in their classroom. I can totally relate to having a safe space where you can place a high-needs child.
I'd be asking questions like, why does the child need a withdrawal space. For the safety of the child or the rest of the children? What disability does he have. Some autistic children are physically violent and bite. The article leaves out so many details and places all the blame on the school without allowing the reader to understand how the school came to the decision. I am sure that the decision wasn't made in haste and was made to try and ensure a conducive teaching and learning environment for all involved.
In the outback it is harder to allow Nicholas to roam free and do what he wants, he has loved the opportunities to run and feel the soil and use all his senses in this new environment. But his safety has to be paramount.
We have spent the night in Cooper Pedy in a hotel, and for me as a parent it has just been bliss. A confined and safe space with internet access. Tomorrow night we are back to camping and back to the carefully choreography that we go through to enable him and us to enjoy the outback safely.