Friends, Family & Carers Forum

[Former-Member]

It is so very hard to lighten up @Determined when we are struggling to keep things going and when we are not shown appreciation or encouragement. Not to mention when dark clouds are rolling in.

I must say things improved for me/us when I did. I started with simple things such as when something is spilled, which would previously stress Mr D and subsequently myself,   I now smile and say 'there's always one ... ' or the like.  He copes with spills better now. When there is grumpiness with kids, when appropriate, the tickle monster comes out. Little traditions like saying what we are thankful for at a red light, perhaps telling a joke might be an alternative, something similar or different if stopped at a school crossing or before dessert is served ... different ways of lightening things up. 

My carer support person deals with NDIS and assures me it is a disheartening process as one needs to focus on the worst of times to get the services one needs. 

[Smc]

@Determined, getting help from official sources is pretty much always gruelling. I was the main advocate for our Older Son (high IQ but coupled with specific learning disorder) and Older Daughter (yeah, you know about her) getting DSP, then ended up having to go through the process for myself as well due to depression. At least when it came to me, we had backup from our very competent clinical psychologist, who put together a detailed submission.
But what said psychologist pointed out to me is that when you're applying for help, you have to pull out all the bad stuff. If you go into an interview saying "Yeah, this is a problem but we're doing this to cope with it and hope it'll help long term", then you run the risk of it being seen as a temporary problem, or one that's being managed well enough already, and thus Ta-Da! you don't get the help you need.

The thing is that once you have the help approved, you can make good use of it to meet the real needs. But you don't want to get bogged down in the "bad news" that got you across the line.

[Determined]

@Smc I am always anxious about disclosing how dysfunctional things can be at home as I dont want to be seen as incapable of caring for our children. Just a phobia I have despite being assured by multiple professional people I have nothing to worry about.

Re NDIS meeting I was quietly thinking more of this applies to the mummy than the child. 

We did have a good example of our poor S1s shortcomings this afternoon when nanny arrived home ( have I mentioned that yet Yaaaaa!!!! Mum inlaw came home this afternoon 😁😁😁)   S3 (3 y.o.) while ecstatic to see Gran ran and waited behind a post for the car to stop. S1 (13) almost ran under the car 😱😳🤯 and even opened the door before the car had stopped. 

[Determined]

At the start of the meeting when asked what we needed my reply was no idea. We do what we do because he is our child and dont like to measure him against what is considered normal. So the questions while intense and draining served their purpose well.

[Former-Member]

Would your Darling be amenable to utilising supports that are available with NDIS @Determined? MH support groups such as Wellways, One Door have people trained who would possibly be of help.  I won't tag but Eth on LE side might have a thread about her experiences.

[Former-Member]

PS Lovely to hear MIL home

Teenager = yikes

[Determined]

@Former-Member I have wondered about that but she resented me going to a carer qld support group meeting so thinking she would not be overly receptive. I suppose I wont know if I dont ask but dont have the emotional capacity at the moment to find out lol 

She was negative to the point of nastiness about me going to the carer queensland meeting. To her me being carer = her being controlled. That is why I prefer the term support except when dealing with official channels for the reasons SMC outlined quite well above. 

[Former-Member]

@Determined 

I hope I am not being discouraging, having supports in place that would help lighten your load was my thinking behind the question. 

[Determined]

Not at all discouraging @Former-Member . Often your input is most encouraging to me and I appreciate your thoughts always. 

I have often thought about it but see it as being a big barrier for darling. Insight is lacking. Or it could even be that denial v acceptance for her. Accepting all is not well may well fuel fears of rejection? Who knows when we can never talk about it.

It is much easier for her to believe that I am an obnoxious belligerent #$%! and the cause of all of her problems 😣

Sorry a out the negativity but unfortunately that sums up my thoughts on the situation.

Uni councillor (if she is still there next year... budget cuts.. people being axed everywhere) is going to support me in getting darling linked in with the local hospital mental health team. They have previously refused us due to darling seeing a private psyc but this lady seems to know what buttons to push strings to pull and things to say. So with some back up support we may get somewhere. (Assuming that is darling cooperates once all of the hard work is done). 

[Smc]

@Determined, so glad to hear that your MIL is home... and that S1's excitement didn't end too badly.

Anyone dealing with child welfare gets used to seeing the differences between a stressed household and an abusive/neglectful household. I expect their reassurances are very genuine.

It's one of those hard facts that when the person being cared for won't admit they have a problem, and therefore need care, a bigger load falls back on the carer because they can't get adequte assistance in their role. Oooh that sounds clinical... It may be that S1 having "identified needs" may give you access to extra help. It would certainly be worth finding out. Am glad that at least you've got a counsellor's support.