Struggles

I love my little boy, I really do. He’s funny, he’s smart, he’s loving, and he’s certainly never boring! He’s taught me such a lot about myself, parenting, compassion, fighting for justice and human decency, and generally just about the world around me. He’s made me a better person. I’m very thankful for those lessons – but I’m really struggling.

I’m struggling with cleaning up poo and having to give him a shower at 1am – though I am thankful that I’m not a single parent because there’s no way I could do that on my own.

I’m struggling with looking for answers as to how to help him feel better, when doctors are at a loss or put everything down to his autism rather than looking for medical answers.

I’m struggling because last night he was awake until 4:30am at least – I crashed around then so don’t know when he actually went to sleep. The night before it was after 3am. I’m struggling hugely because I’m tired, hubby is tired, and we’re finding it difficult to do anything right now.

I’m struggling because school starts back next week, and I have no idea how we’re going to be able to get up early enough to get our kids to school.

I’m struggling because the NDIA have told me that it’s nothing to do with them that we don’t get sleep and are too tired to look after our angel effectively (let alone the other children).

I’m struggling because the NDIA have said that it’s not “reasonable and necessary” for BuddyBoy to get intensive therapy, and they’ve suggested speech therapy and occupational therapy instead. Both of which we’ve got on board and have been utilising on and off for over 6 years and they still haven’t gotten us anywhere.

I’m struggling because the federal and state governments are too focused on the next election, and how they can get any other service to pay for something that they don’t want to even talk about. I’m really struggling because we’re doing a job that would cost DHHS and eventually the NDIA over $1,000,000 per YEAR to do, if we get to the point where we have to drop our son into their office or a police station, because we simply can’t do it anymore.

I’m struggling because I love my son, and he loves me. He needs me – he needs the love and acceptance that I give him over and over every day. He needs me because I can understand him better than anyone else. He needs me because whilst others have left, I’m still here, because I love him. I don’t want to give up on him, and I have told him I will continue to fight for him.

But I’m tired. Really tired.

I’m tired, yet I’m sitting here, writing a blog post at nearly 2am, while watching BuddyBoy on the monitor in case he has to do another poo.

I’m not well – physically or mentally. I can’t cope – physically or mentally.

I’m letting my other children down, I’m letting my marriage down, and I’m letting myself down.

I’m also letting BuddyBoy down, because I don’t have the energy to keep fighting and fighting and fighting. I try, but it’s so hard. It’s so damn hard.

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