hugs

[MyNameIsTerry]

I think from what you have told us of your journey through decades of "the system" for your kids you know inside out what it is like and, whilst it must be very demoralising, I suspect you had this in the back of your mind. Kick them, kick them and kick them somemore. These services so often discharge people back out and unless their is some form of advocate pushing them to keep up the work they seem to just forget about people.

Yes, all that matters here is health. Money doesn't. Whilst the NHS should deal with this you as a parent know what you all need without having to worry about the bigger picture of other patients and juggling it all so why not spend money to help him? This isn't some niggling minor thing for an elective op that can wait, this is crucial stuff and you know him better than any of them. If getting him to the right people sooner is what he needs, that's all that matters and we know on here that's what you will always do.

I don't know what to say about your own needs in this because it's such a big situation that you may not have time for them like other events you have seen in your life (your son's operations as a child must have taken over for life for ages, for instance) so perhaps all you can do is snatch the quick moments in between and keep pushing on? You will deal with it, I have every confidence in you from listening to the situations you have dealt with in your life.

Give yourself credit. This place is here when you need it for whatever small help we can offer whether it's a moan or a laugh.

Best wishes to you all x

[whispershadow]

hugs pulisa

[SarahNah]

I want to say I'm surprised they sent your son home so soon- but I'm not. They can try to get short-cuts which is so horrid. I can recall the first time I was taken in, the moment I stopped (TW-Self harm) trying to rip my hair out or clawing at my skin for just a day they handed me back over to my parents who were not at all ready at handle what came. Thinking of you during this time, I know it's so hard but from what I'm reading I can see how you're doing all you can for both of your kids- which can't be easy at all. Really keeping you all in my thoughts during this time xxx

[pulisa]

Thank you Terry, Whisper and Sarah..xxx

I feel very much out of my depth with all this so it helps to know that your parents struggled too, Sarah. i really appreciate your comments and I'm sorry you had such an ordeal yourself. I'm used to living with agitation but my son isn't-hence the self harm and desperation. There aren't any answers but I could do without the ineptitude of the MH team. I should be used to it by now but dealing with all this with the obvious change in my son which sets alarm bells off with my daughter is a nightmare. I will make the most of short breaks in the day to recharge my own batteries which are pretty faulty!! xxx

[Carnation]

Pulisa, I think you have to think of this as a phase in your son's life and everyone else's to some extent, rather than a permanent state. Although these conditions can be ongoing, once on the right treatment and medication it can make life manageable and better.
It must feel like your the only family suffering in this way, but the more you open up, the more you will find others have gone through the same thing.
I know it's cliche, but one step at a time. xx

[SarahNah]

Always here for you Pulisa, feel free to drop me dm at any time if you want x

[pulisa]

Thank you Carnation and Sarah xxx

We are back to being on 24/7 alert. There is a meeting this afternoon and I'm going to be as forthright as I possibly can be regarding future care

[MyNameIsTerry]

That sounds like he's struggling more again? Perhaps this will convince them it was too soon and he needs more dedicated support for a while?

You know if you hold back they will see it as an opportunity to leave it all with you so don't be afraid of telling them how hard this is on you all. I don't know how anyone could be any different.

[pulisa]

That sounds like he's struggling more again? Perhaps this will convince them it was too soon and he needs more dedicated support for a while?

You know if you hold back they will see it as an opportunity to leave it all with you so don't be afraid of telling them how hard this is on you all. I don't know how anyone could be any different.

On the contrary he has been discharged into the care of the CMHT...but I did get to challenge every platitude uttered. It was uncomfortable but necessary as I felt eaten up by anger and I think we are better off without an ineffective team who don't understand ASD. Thank you, Terry x

[Carnation]

You can achieve a lot with anger Pulisa