Friday, 19 March 2021

FFS Friday - Lucky

It's Friday! Even better, Tiger has the whole weekend off! It's the first weekend he's had off since the 26th of January.
 
I had my NDIS meeting this week. I was really nervous about it because of all the horror stories I've heard, however the man I got was lovely, very supportive and helpful. He said he'll make sure we get a really good plan which is great. I'm hopefully optimistic.

This has all been so confronting. Accepting that our baby has a lifelong disability, changing from being just a mum to being a carer, wondering what his future is going to look like. I'm so worried for my baby. I'm worried what his adulthood will look like, if he'll be able to sustain employment, if he'll get the wife and babies that he's already talking about, if he'll be a happy adult. 

Going to meetings and talking about how he struggles is rough. I feel like I'm betraying him, speaking behind his back. It's difficult to speak about him as if he has a disability, to me that's just the way he is. 

I've realised that's why I have so much trouble filling out the paperwork for him. I don't see him as disabled. To me he's just a normal kid. Yes, we've had to change every aspect of our lives to support his needs, but that's just the way it is. I've never seen it as abnormal. 
 
This week we had a class meeting with Chai's teachers. They were talking about the different types of homework they give and how they'll make it appropriate for each child. For some children the homework might be help your parents make tea, or make your bed. As they were saying this the ASD parents were nodding and saying they loved that idea. The parent behind me muttered "that's not homework, it's normal kid behaviour, things they should be doing." 
Clearly she doesn't have an ASD child so has no idea the privilege she has. 
 
It got me wondering what privileges I have that I don't even realise. There are so many things I take for granted that others can only wish for. In all the tough times I keep on reminding myself how fortunate I really am. 
 
Have a beautiful weekend!

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