Lived Experience Forum

[tyme]

Hi there @Harry25 . Welcome to the forums! I'm sorry it's been so hard for you to get the support you need. How old is your girl? (If you don't mind me asking - no pressure to respond).

I'm hearing how you much time and effort has gone into fighting for what you need for you and your girl. It can be heartbreaking.

I hope you find the support and connection you deserve as you browse through the forums.

Hi @Daddymac @McFluffy @LilMapleLeaf - hoping you are well today.

[McFluffy]

@tyme thankyou for asking.  Physically fit today and brain working rather well.  Had to see a new phycologist today who wasn't my cup of tea.  I think a key component is to listen, and don't fall back into inferred or projected queer stereotypes  It's a little draining and disappointing.  Hope your day was good too and thank you for asking. 

[Harry25]

Not enough  is done for the carer. The kids in this situation.  We have young children.  Finances are tight , my girl thinks she can just spend,  it's the kids that are missing out. When she goes in full time care I doubt I'll get to keep our house . That's if her care doesn't chew it up so I have to sell. So hard @tyme 

[tyme]

Hey @McFluffy , good to hear from you. I'm glad you feel physically fit today and your brain's working rather well! I think I'm the opposite lol! Finding a suitable psychologist can be tricky. I hope you find a more suitable one. At this stage, psychologists are so hard to come by, let alone being about to choose! But if you have the luxury of doing so, go right ahead!

I'd love to hear how you go with it!

@Harry25 , I'm sorry to hear how hard things are for carers. Is there a care team supporting your girl who can look at long term supports? Are your children's school/s aware of your situation? I wonder if they can find ways to support?

[McFluffy]

@Harry25 wow, what a terrible situation.  I'd call it a shit sandwich.  If it's any help, there is an ombudsman with offices connection s in every state (don't hold me to that).  I did have a problem with NDIS once,, really the care provider company.  I did find a polite but slightly pushy call for support from a state senator worked well.  I know it sounds daft, but I also found a photo of me my dog added to all correspondence personased it.  It's much harder to say no to someone you can put a face with and you like.  Just my experiences, might not be best fit for you.

[Daddymac]

@tyme good morning

my day is starting of greeting my kids good morning then of to physio w my son and spending the day w him w my support worker. 

[Daddymac]

@Harry25 good morning
NDIS is hard to navigate it took 3 attempts to get funding my career has taken care of all of that.
My experience that I learnt is using the right words and having a good OT occupational therapy write reports and other services that your daughter uses
Im Here for a chat

[McFluffy]

@tyme it's not so much have the opportunity to play around with finding a new psychologist, rather if you're there on the advice it's important for the psych person to listen. Particularly if you need to travel 8 hour return by bus and stay the night in a "foreign" city for the appointment.  I don't need to hear about a nephew and niece are marching in the Mardi gras.  Might be a big fat old poof... but I don't care.  I don't need half the appointment listening to someone on leather armchair mucking about.  Sorry to chew you're ear, but really pissed off.  A useless appointment places me at risk.  Last time I had to travel to a special specialist by plane, I ended up in ER with half the airport locked down and fed police mobilised due to a seizure.  This psych person new about it and was part of the reason for being at the appointment, but no, had to listen to rubbish about drag.  Again sorry to chew your ear it's not personal, just very miffed.

[tyme]

Hey @McFluffy ,

No stress! Don't worry about chewing my ear off. That's what I'm here for. You're human. You deserve to have your voice heard, especially if it comes to your care.

Do you have the support of a case manager who can pull all these supports together so each specialist can 'listen' to each other? It's so important there is holistic care - otherwise it's each to their own....

[McFluffy]

@tyme again sorry to chew your ear.  And thank you for asking a cranky old bugger about his welfare.  Yes, I do have a support team.  Will be having a combined get together at the end of the month.  We will chat about the person I'm not happy with and seek an alternative arrangement.  It's just very very very annoying, and if your brain is full of holes it makes it tricky to understand.  Again sorry to chew your ear.