Bitten by you: This Grill'd burger never tasted so good

I'm sitting here in our living room with One Tree Hill nostalgia playing on the screen as I write this. Mostly listening to music from my past, not really watching, just thinking about the day and writing, and eating the Grill'd burger Dan went out and got me, as he knew how my day had gone and wanted to make it better. 

"What do you guys do if there’s a safety risk or public nudity risk when taking your kid out?" 
I wanted to pose this question in a parenting support group on Facebook. I didn't. I've always felt a level of vulnerability that feels different when it's in one of those forums, as opposed to writing here in my blog. There's the same level of privacy (none) in both places. I could have posted it anonymously, but I feel funny about that too. 

It's like, with all these other parents, going through the same things, or similar, I don't want to reach out specifically to them. I'm sure they have enough going on, like I do, that it would only be adding worry or concern to their plate for a stranger on the internet that they don't really know. 

So instead, I've come here, and I'll tell you about my day. You can choose to click away now if you like. It's not pretty, but if you do want to keep reading, to understand more about a day in our lives, then welcome, and thank you. 

A really hard day from school drop to butt plop 😅

To explain NDIS support needs of a child with ASD, you would need to spend a day with them and then a week, and then a month. 

Because good days come and go, just as bad days come and go. And really bad days come and go. And mild to moderate days come and go. 

Today was a really bad day. 

My son from school drop of to after school seemed to be disinterested in doing anything I needed him to do. And consumed with his own fascination. 

I indulged his fascination this afternoon. I took him down to a playground near the local beach. His interest, however, was not in the playground, but in walking away from the grassy area, across the road (without care for the cars coming along - I skilfully manoeuvred him to safety here) and down the wooden steps to the beach. 

Finny doesn’t have a support worker (only Tobi), so it was just us and the beach. He then flung off his clothes, tried to climb the dangerous rocks and dive into the waves that were far too rocky, so I then had to drag him away from this place he loves so much. It just wasn’t safe. 

On the way back to the car he fought my grasp. Pulled himself into contortion and bit my arms until they bled blue. The 100mtrs from the beach to the car felt like 100kms.

A kind lady near the carpark saw me struggling and asked if I needed help. Marion, if you’re out there, thank you. Thank you for your understanding, for taking my keys and Finnys clothes, for helping hold him while I rested before continuing to the car, not more than 20mtrs away.

It’s not always like this, but it can be. Marion, as lovely as she was, said, maybe don’t come back here without your support 😅 but the funny thing is, we were denied access to support for Finny. 

The report from the NDIS read “not reasonable or necessary”… so, I’m not sure what to do. Plan better next time? Don't go out without another adult present? Pick and choose "safe" places?

Appeal, again? 

Things I can control

• Where and when we go places
• What we bring on our outings
• My own strength and patience
• Whether or not we appeal the NDIS decision around support for Finneas

Things I can't control

• Whether or not Finneas will run away if we are in an open space
• Whether or not he chooses danger over safety
• Whether or not the weather is good enough for an outdoor excursion
• What the NDIS decides when we appeal
• What other people do, think and say

Why am I sharing this?

I said earlier, I didn't feel good about sharing and asking for advice in the parents' support group. So why share at all? I guess, because I do want to reach out. I'm feeling quite vulnerable, and yet I know that, as tired as I am, advocacy matters. I feel like all I do, all I want to write about and share is about our lives with the boys. But that's because it is, all-consuming.  

I don't believe that any parent should have to choose between isolation and danger, but I feel like it's something I do have to do now when we go out. I've turned down invitations from friends if Dan wasn't home with me, and I've chosen to stay at home instead of going out with the boys many times in the past few years.

If you work in policy, disability services, or community planning, I hope you're still reading and listening to stories like these. I'd like to work with you. To see what can be done to improve the lives of families like mine. 

If you'd like to get in touch please email me: vikki@xanadugroup.com.au  or reach out to me on LinkedIn