Voicelessness and Emotional Survival > Voicelessness and Emotional Survival Message Board
Reciprocal Relationships with Others and Ourselves
Twoapenny:
--- Quote from: sKePTiKal on June 13, 2019, 05:48:37 PM ---Tupp, I think all students get a bit stressed and overtired of school at the end of their first year. It's a normal thing when you're ready for a break. College is a big leap into a whole new landscape for freshmen - and for your son, having been homeschooled, he's also navigated a new world. Bet he starts missing his classmates in about a month!
That system of care support you're dealing with sounds like an absolute nightmare. Intentionally obtuse, even. How many assessments need to be done, before the Powers that Be read the previous ones? Not having any experience with that kind of thing that would be helpful, I'll just sit here and marvel at your skills in managing it all.
--- End quote ---
Lol, no skill involved, Skep, I'm just endlessly ploughing through the same thing over and over again. They are intentionally obtuse; the less the service user knows about their rights or the various pieces of legislation that underpin the less support the service user can claim, so the cheaper it is. So when you start asking specific questions about how things are done or time frames, or about re-using previous information they don't like it, because it means they won't be able to do you over as easily. There's also a thing about specific information, I find, they tend to keep things vague so that you can't use anything against them in the future. They also have a thing where they're supposed to tick a box that they have a good working relationship with the family (which is why they like to do things like meet and greets) but my problem with that is that I don't want a working relationship with them - they're paid to do a job and I just want them to do it - I don't want any more to do with them than that. So anything other than a direct trade of information is just a waste of my time and I never rely on them to give me accurate information, because they never do. If I'd gone along with what she proposed yesterday we'd have had three meetings over a six week period before she started writing anything up and then that could take another three months to complete - and there's no guarantee it will be accurate so it might have to be corrected as well. So you're easily looking at five to six months of faffing, if not more. By the end of our conversation, she'd agreed we could do it all in one meeting and she'll score it as she goes so that she can give me a ball park figure for support costs on the day - which means I can start putting together a proposal for a care package straight away (and actually means I've already got a rough idea because they work on a points system, which is on the internet, so I can start doing some investigating now and just confirm things once she's done the assessment). So instead of it taking six months we can do it in four weeks - which you'd think everyone would prefer, but for some reason they prefer to be inefficient and keep people waiting. Baffles me. But onwards and upwards lol xx
lighter:
Hi Tupp:
Sorry the paperwork slog continues to be taxing and inneficient. 4 weeks sounds much better than many months to me too.
About the negativity w friends who don't understand or support you....I think we all require empathy and understanding. I think part of you attempts to educate and explain to these folks, where the people who "get it" have validated, and heard you. There's room for other things....positive things, etc.
Sorry I'm hitting high spots. Oldest DD having wisdom teeth out now, so posting in waiting room.
Miss you guys.
Lighter
Hopalong:
(((((((Tupp))))))))))
I so understand this:
--- Quote ---I find the pain of speaking my truth, and having it dismissed or ignored, so difficult to cope with.
--- End quote ---
I found/find the same in speaking the truth about my D, either to existing friends/acquaintances or potential new ones...very difficult, too. I have found with practice, since it's not as raw for me as it once was, that it's getting faster and a bit easier to remain detached from the A-inadequacy or B-agitation or C-emptiness of people's responses. I know now that most people absolutely cannot take in the fact of estrangement (or for you: the facts of your life and load). So I try to treat it like, this is part of the weather, I need my emotional brolly for a moment here. And risk telling the basic truth anyway.
I think I reframed it for myself as a separate, personal goal: to get more comfortable (not meaning confrontational) in just stating what's true when I feel like doing it. Regardless of how someone reacts to it. Just liking myself so much that I realize to keep that info secret or suppressed or stuffed in order not to face another person's reaction takes just as much energy as speaking and coping-with-response in the first place. On balance, I've decided I like being real. If that limits my crop of potential friends, that's okay. Research suggests that only a few close friends is all one really needs to cultivate. I need a good-sized handful, but not 10.
As to the bureaucracy nightmare. I'll do mah thang again but because it's me, not because it's a good idea. Take with huge shaker of salt.
What would happen if you told this nice bureaucrat something like (HOPSSCRIPT ALERT): "This might be an unusual request, but I'd like to explain why it's important to me to have as clear a timeline as possible. I'm very mildly on the spectrum. I can be really efficient when I can plan things ahead, knowing what step of the process comes when. I know you may not be able to guarantee every specific date, but would you be willing to answer some extra questions about the timeline? Knowing how I need to plan for that will make my work for my son much easier. Can we proceed that way?" (If you get a No, you might kindly--not angrily--say: Oh dear, I can see this puts you into difficulty. Is there someone at another level who might be able to offer me that accomodation?)
That way, you might solicit her helpfulness...because she's in a helping role. Maybe, IF you are comfortable offering an insight about your own wiring as one reason, that would make sense, and she'd recognize that this would be a good way to be of service. Or understand your need, which was presented very logically. Responsibly.
(Of course it would not be good if you think it'd be used against you somehow. But it's a way to be real and share something that might motivate a decent human to slow down, spell out more dates/tasks you need to know about, etc.) Maybe you could do a gut-check about that individual bureaucrat, and decide case by case.
Or discard the notion immediately if it's a terrible idea! You're the one who lives with it.
SO much support and cheering you on...
love
Hops
Twoapenny:
--- Quote from: lighter on June 14, 2019, 10:29:15 AM ---Hi Tupp:
Sorry the paperwork slog continues to be taxing and inneficient. 4 weeks sounds much better than many months to me too.
About the negativity w friends who don't understand or support you....I think we all require empathy and understanding. I think part of you attempts to educate and explain to these folks, where the people who "get it" have validated, and heard you. There's room for other things....positive things, etc.
Sorry I'm hitting high spots. Oldest DD having wisdom teeth out now, so posting in waiting room.
Miss you guys.
Lighter
--- End quote ---
I hope DDs teeth are okay now, Lighter, in or out! I've always been very lucky that I have a big mouth with plenty of space for many teeth :) I hope she's okay.
The good news on the friend front is that I am making good connections with new people who are just lovely. Very understanding but also very proactive - they're not sitting agreeing with everything and then doing nothing to change. They're working together, helping each other out, passing on useful info and still laughing even when things are difficult. They have a different energy about them to my previous friends who I am increasingly feeling little or no connection to. We went to the sports group yesterday and gave another mum and her son a lift - they live near us and she doesn't drive. I know how hard buses can be when you have a disablity and we have space in the car so it was nice to be able to help them out, but they're also just really nice people - very friendly and chatty and she knows other people who she introduced me to. Chatted to another mum there who is also lovely, met her husband as well, they're just nice people with lovely kids who are amazing even though they have so many problems, bless them. And sat talking to another mum who is 78 and still having to provide care for her 40 year old disabled daughter, even though she's been in a residential home since her 20s. She gave me loads of information about provision for adults in the area; there are some really good projects going on that I will check out over the summer holidays. But her situation is what I'm up against; even ticking all the boxes, there are still days when her daughter will not go anywhere unless they take her, because there isn't a staff member available, and they are still having to pay for medical equipment for her and organise appointments and so on because it just doesn't happen on its own. The system is just inadequate - but, at least I'm seeing that early and i can find ways to avoid those problems in the future.
Tell DD get well soon from us :) xx
Twoapenny:
--- Quote from: Hopalong on June 14, 2019, 05:01:29 PM ---(((((((Tupp))))))))))
I so understand this:
--- Quote ---I find the pain of speaking my truth, and having it dismissed or ignored, so difficult to cope with.
--- End quote ---
I found/find the same in speaking the truth about my D, either to existing friends/acquaintances or potential new ones...very difficult, too. I have found with practice, since it's not as raw for me as it once was, that it's getting faster and a bit easier to remain detached from the A-inadequacy or B-agitation or C-emptiness of people's responses. I know now that most people absolutely cannot take in the fact of estrangement (or for you: the facts of your life and load). So I try to treat it like, this is part of the weather, I need my emotional brolly for a moment here. And risk telling the basic truth anyway.
I think I reframed it for myself as a separate, personal goal: to get more comfortable (not meaning confrontational) in just stating what's true when I feel like doing it. Regardless of how someone reacts to it. Just liking myself so much that I realize to keep that info secret or suppressed or stuffed in order not to face another person's reaction takes just as much energy as speaking and coping-with-response in the first place. On balance, I've decided I like being real. If that limits my crop of potential friends, that's okay. Research suggests that only a few close friends is all one really needs to cultivate. I need a good-sized handful, but not 10.
As to the bureaucracy nightmare. I'll do mah thang again but because it's me, not because it's a good idea. Take with huge shaker of salt.
What would happen if you told this nice bureaucrat something like (HOPSSCRIPT ALERT): "This might be an unusual request, but I'd like to explain why it's important to me to have as clear a timeline as possible. I'm very mildly on the spectrum. I can be really efficient when I can plan things ahead, knowing what step of the process comes when. I know you may not be able to guarantee every specific date, but would you be willing to answer some extra questions about the timeline? Knowing how I need to plan for that will make my work for my son much easier. Can we proceed that way?" (If you get a No, you might kindly--not angrily--say: Oh dear, I can see this puts you into difficulty. Is there someone at another level who might be able to offer me that accomodation?)
That way, you might solicit her helpfulness...because she's in a helping role. Maybe, IF you are comfortable offering an insight about your own wiring as one reason, that would make sense, and she'd recognize that this would be a good way to be of service. Or understand your need, which was presented very logically. Responsibly.
(Of course it would not be good if you think it'd be used against you somehow. But it's a way to be real and share something that might motivate a decent human to slow down, spell out more dates/tasks you need to know about, etc.) Maybe you could do a gut-check about that individual bureaucrat, and decide case by case.
Or discard the notion immediately if it's a terrible idea! You're the one who lives with it.
SO much support and cheering you on...
love
Hops
--- End quote ---
I'm already ahead of you, Hops! Explained how snowed under I am, single parent care, son needs 24 hour support etc, summer holidays coming up now so I have ten weeks with no time off at all so essential to plan ahead, etc, etc, makes no difference. They just can't hear anything outside of their script. I find the same when I call companies now - if what I want to know isn't part of what that person enters on the computer they can't do it or answer the question. I think things are so systemized now that anyone wanting something that isn't on the list just bangs their head against the wall. The thing that frustrates me the most is that she did eventually give me the information I wanted, after fifteen minutes of arguing back and forth and her insisting she couldn't. So she was perfectly able to, she just didn't want to, and not being treated like an adult irritates me - it feels like the teacher telling you where to sit in class. I increasingly feel that the public sector is simply an extension of the school system and if you're unfortunate enough to have contact with them you're treated like a child who needs to do as they're told and not ask questions. But anyway - sorted now, she gave me the info I wanted, I've checked and some of it's wrong (no surprise there) and we're having one meeting several months away, which means I can get the proposal together, go through it with her on the day, tweak it and hopefully that means everything should be set up in time for son's 18th. I may eventually get to a point where I have nothing to moan about :) Lol.
In other news, I do think I'm spreading myself too thinly and trying to do too many different things each day. I've had a thing in my head if I try and do a little bit of everything I'll chip away at the lists but I think now perhaps I need to stay in the zone and get entire projects finished. So I'm going to try just focusing on myself and the house over the weekend and try to focus on getting paperwork out of the way when son is at college. It is starting to clear; there's just so much I'm not happy about and I try to fix everything thinking it will make me happier but I think I'm going to have to practise just letting some stuff go and ignoring it and concentrating on what I need to do today, to make life a bit less stressful.
And in other, other news, I really fancy the acupuncturist. He is so lovely and invited me to a wellness event that's going on locally. I started to obsess - is he inviting me because he likes me or has he just invited all of his clients along? So I have decided to postpone all thoughts of that nature for the time being - I've got too much else going on to give anything or anyone my time or attention at the moment and I don't want to build this up to something in my head only to realise (again!) that I've got the wrong end of the stick. The trouble is I'm so desperate for company and love that anyone being nice to me takes on a significance to me that it often doesn't to them (from past experience, anyway). So I'm going to carry on just trying to look after myself and deal with the paperwork mountain, have a nice summer holiday and put together a plan of care for son from his birthday next year. One thing at a time :)
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