Friday, 14 May 2021

FFS Friday - Firey

It's Friday! We made it!
I'm not quite sure if I'm happy about it being Friday or not. Chai's struggling at the moment so weekends haven't been much fun.
I wish I knew how to help him. He's so easily irritated. It just takes the smallest thing to set him off. Even first thing in the morning when we're still in bed, he'll start. We'll all be in bed having a cuddle then Eljay will roll over so the blanket moves and that starts Chai off because Eljay "pulled" the blanket off him.
He didn't, there's always plenty of blanket, but that's all it takes. The tiniest thing and Chai's off ranting. Once he starts it's all downhill from there. 
Eljay and I walk on eggshells trying to keep Chai calm but it never works. No matter how calm I am, how easy and peaceful the mornings are, some tiny thing always sets him off.
I'm hoping it's just a stage he's going through.  
I read a story on Instagram from the mother of a child with autism. She was saying how having an autistic child is a joy and that the people who have negative things to say are usually the parents of children who've been recently diagnosed. I have so many feelings about that. 
Firstly, I really hope that I can soon find the joy in parenting Chai. I really, really do. At the moment I can't see the forest for the trees. It's been five years of struggling to find out why I'm not coping. Five years of trying to get help for him and for me. 
The diagnosis was a relief but really just the start of another journey.
I got the diagnosis, was told to apply for NDIS and Carers Allowance, was offered a few different medication choices and that's it. The rest is up to me to figure out myself. So yes, being the parent of a newly diagnosed child is difficult. It's been difficult for a very long time.
The entire time I've been trying to find the joy, I really have. 
But surely they can't honestly tell me that parenting their ASD child is always a joy? Surely not? I'd love for that to be true but I just don't see how it could be. 
Life is difficult for these kids. Society expects so much from them and there are very few concessions made for their needs. They're expected to change who they are to fit into society, instead of society accepting them as they are. Because of that they struggle and the family struggles.
I wish the story that I saw showed how to find the joy in parenting. I'd really like to know how to do that. I'd like to know how to help him be calm and happy. 
You know what else I see a lot on the Instagram posts and stories about ASD kids? They say parents should learn from Autistic adults. How am I supposed to do that? Just where do I find a network of Autistic adults willing to allow me to bombard them with my questions? I have questions, so many questions. I'd love to have Autistic adults that I could message with questions. I'd need quite a few so that I wasn't overwhelming one person. 
I just want to make life easier for all of us. That's it. I want a calm, happy life for myself and for my boys. Surely that's not too much to ask. 
On a positive note, we have our wood heater on and this makes me very happy.

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