Friday 1 April 2022

FFS Friday - Well

Parenting Chai is the hardest, most difficult part of my life. He's a gorgeous boy but life isn't easy for him and that breaks my heart. I wish that I could make his life easier. I'm constantly searching for ways to make his life easier. 
 
Tiger is not doing anything to help. He took eight months to read Chai's diagnosis report, has done nothing to educate himself about any of Chai's conditions and does nothing to help make life easier for Chai. 
 
I gave up trying to get him to be involved in managing Chai's therapies years ago, he's just not interested. Truth be told, he was one of the many people over the five years it took me to get Chai diagnosed, who said that there wasn't anything wrong. He regularly told me I was wasting money when I was trying to get help. Clearly I ignored him.
 
I've accepted that I have to deal with everything myself, but what really annoys me is when I make a decision and Tiger criticises it. As far as I'm concerned, if he chooses not to be part of the decision making process, he has no right to criticise any decisions I make. That's not how it works. Either we make decisions together or he keeps his opinion to himself. Simple.
 
A few months ago Chai and I decided to try medication. We've tried in the past and it has failed badly, but Chai wanted to try again so we did. 
As usual, the medication didn't work, it made things worse, so Chai is no longer taking it.
 
Tiger won't stop carrying on about what a mistake it was. Every time he brings it up I shut him down. I tell him he refused to be a part of the decision making process so he doesn't get to complain. It's not stopping him. I'm over hearing about it. 
 
I had an appointment with Chai's psych yesterday and it's left me feeling even more worried than I normally am. She confirmed everything I was thinking which is not a good thing. 
 
The discussion went like this:
Psych: He isn't going to cope at a mainstream high school.
Me: I know.
Psych: But there are no other options.
Me: Yep.
Psych: He really needs to be under the care of a psychiatrist.
Me: I know. 
Psych: But you can't get in to one.
Me: Yep.
Psych: You really need the care of a good paediatrician.
Me: I put in 19 applications, got 11 rejection letters and the other 8 never got back to me. I'm going to see if I can find practitioners in Sydney or Melbourne who'll do telehealth.
Psych: That's not ideal for him but it'd be better than nothing. They've all got long waiting lists though.
 
How the f@ck am I supposed to get help? How am I supposed to make things better? There are no services, I can't get in to a paediatrician, I can't get in to a psychiatrist, I can't get an OT, I can't get to see the Educational Psychologist, I can't get any of the services that we need. WTF am I supposed to do? Move to another country where there are services available? I can't get help through the public or the private health system. We pay a small fortune in private health cover, yet I can't access the help that we need. 
 
I am so very worried for the future, especially next year when Chai starts high school. Without the help and support that he needs I don't know what's going to happen. 

Swift action needs to be taken to ensure that people can access the services they need. It won't though and people will continue to struggle. Families will continue to be broken, parents won't cope and children will be raised with so many issues that they wouldn't have had if they were able to access the services they needed.

Enough whinging. I hope you are all well and have a beautiful weekend.

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