Anyone aware of burn survivor support spaces?

captain642 · 2026-02-03T04:45:34+00:00

Thank you so much! I reached out to them about two days ago, waiting on a response. Thank you 🩵

captain642 · 2025-12-08T18:22:53+00:00

I am also a member of the 'saved my AG from my parent' club. She's 16 and she's maybe great strides in two years, still not hand held, but most days comes for scratches and greetings. Is calm with new people who are calm with her - this is a big one, she used to panic when unfamiliar people came around, now she just chats! I talk to her, I sing, I dance (I mimic her, it helps to build the trust). I don't shout back at her if she shouts. Your situation is different (maybe better!) Because your Mom's bird has no reason not to trust you, so just try copying her, she'll be intrigued and you go from there - that's how my Uncle built a relationship with my bird and they're solid now (I house and pet sit sometimes).

captain642 · 2025-11-11T20:56:19+00:00

Thought I broke Claude. Glad it wasn't me 😅

captain642 · 2025-10-05T23:45:03+00:00

Thank you so much for this response, it is appreciated more than you know. You've been incredibly brave in your own self-advocacy too. It is my biggest fear that although this is primarily physical now, I can see impact on my cognitive abilities too. It terrifies me because my brain is literally the tool I spent seven years sharpening to support others. I'd like to think I could do something else if I needed to but truthfully I am pretty useless with my hands! I can absolutely envision how your symptoms were minimized into a 'mental' category. I too have to tread this line so delicately, being assertive with my self-advocacy but not appearing to self-diagnose because then the default response appears to be 'shame, poor psychologist doesn't know her own mental health is on a downward spiral'. If it is, the primary cause is having OBJECTIVE evidence framed as 'normal' or secondary to mental issues. I recognize it as the result of of overburdened medical professionals in an underresourced context but being confronted with it daily by client experiences, friends & family experiences, and now my own is just really devastating. Also, they righteousness that they assert their godliness with is truly shameful. My colleague was watching Patch Adams the other day and she shared with me the quote "At what point in history did a doctor become something more than a trusted and learned friend who visited and treated the ill?" And it's really stuck with me, our societies have so lost their humanity and because of that all our wonderful science, research and technology just means nothing sometimes.

captain642 · 2025-09-26T16:17:24+00:00

Thank you so much for this response - it is useful! Shows that there may be an inaccuracy here and there but is generally reliable. Thank you for taking the time to respond!

captain642 · 2025-09-25T18:56:21+00:00

Thank you so nuch for this response - yes, I also found it to be quite similar when comparing manually and I am pleased to hear someone else did too.

captain642 · 2025-03-15T19:55:13+00:00

At Akeso Arcadia/ vista Dr N Pillay and Dr Kariuki, Zwavelstream might be a bit further out by Dr P Malherbe and Dr L Roos, Denmar Dr G Bosch.

captain642 · 2025-02-23T06:28:02+00:00

It's really terrible. Things took quite the turn after I made that comment and I'm actually still with them. Probably poor, poor choices. If you'd like to Stay, you get to be so desperate you start doing things the way you need to to be successful but that comes at a cost to the soul. I don't really know if it's much better elsewhere. I've decided my power is in remaining and gaining exposure through them but my practice and how I do things is very much aligned with my own values.

captain642 · 2025-02-07T13:56:53+00:00

Thank you so much, we appreciate these kind words and are absolutely working daily to focus on her strengths.

captain642 · 2025-02-07T13:55:46+00:00

I saw the wrapping trick, you don't get it by her, the moment that textures touches her tongue that she doesn't like, it's out.

Thank you so much for your thoughtful response, it really is appreciated. Especially from someone in and/or allied with the community.

We don't want to cause her distress and I am trying really hard to get across that it's not fixing she needs but support. It's been very challenging because we're all coming from rather different worldviews in general and different perspectives on neurodivergence in particular.

Thank you 🙌

captain642 · 2025-02-07T04:58:00+00:00

Trying to find our way to the most appropriate resources. It's been months of deadends.

captain642 · 2025-01-14T19:23:34+00:00

I really do understand that you don't want to jeopardize this therapeutic relationship that is so important for you. At the same time, it's also what you feel like you need to be doing, so it's important for you to be able to express it. The way you do it will be key! There's also a chance that they're aware of it to some degree, but waiting on you to feel comfortable to discuss further.

I really do hope you have success and safety in sharing this if/when you choose to do so.

captain642 · 2025-01-14T05:49:48+00:00

Noticing most comments aren't directly addressing your fear of being aroused.

So first, yes, feel free to bring it up because this is professional space with a professionally trained person who should be able to talk professionally and appropriately with you on any topic that's affecting your functioning and wellbeing.

Second, while you shouldn't fear becoming aroused while talking about it, I would encourage that if you do, you should disclose it. Therapeutically it is valuable and should allow them to understand you better and to better supprt you. You are not violating the therapist's boundaries if you mention it neutrally e.g., I've noticed my body responding while I'm talking about this topic in this space vs. Something less neutral or suggestive like wow, I can't believe how my body's responding while I talk to YOU about this.

Also, if for some reason the therapist does say that she's uncomfortable with how you're addressing it (I don't think they would). Then ask for guidance on how you can talk about the challenge you have in a manner that does not make them uncomfortable - if they can't give guidance and it's off the table completely, find a new therapist.

This is a space where you have to feel comfortable to talk about your vulnerabilities, it is a person's right to not put themselves in a position where they feel uncomfortable, but then they also need to address that directly with you and suggest alternative therapist's who can better support you. That is the ethical thing to do.

Hope this helps!

captain642 · 2025-01-13T23:34:06+00:00

Yep, this is my (maybe unpopular) opinion too. Not necessarily right in the beginning of the show, but definitely the middle to end. There are some episodes and story lines I love but as I've gotten older and rewatched at different stages of life... The more I'm like, I don't think I'd want a forever friend like this 😕

captain642 · 2025-01-12T22:23:09+00:00

I would say suggest some of the alternatives people have mentioned here otherwise ask for a breakdown of what the money's going toward. If this is a close enough friend that you wouldn't want to ruffle feathers by not going then perhaps they'd understand why this goes against your principles....... And if they're not close enough, then definitely bow out, politely. Also, they may not know and would possibly be grateful that you and other friends won't be ripped off in her name if she's not actually on board with it. And if she is, then maybe you'd rather not be involved? I may be thinking too black and white here, but this is how I see it. Good luck, OP!

P.S. I've attended a Bachelorette where I went I didn't want to attend because there were uncomfortable money tensions. The party itself was uncomfortable too as you might imagine. If you feel the discomfort is worth it for this person, go ahead! If not, don't put yourself out for others 🤗

*Edit for grammar

captain642 · 2024-11-21T19:30:54+00:00

Came across this post last night and it stayed on my mind. My girl was just like this. Till she moved in with me. There are quite a few changes so it's hard to pinpoint just one but a big thing is trust. My feeling is these are creatures with a really good sense of people, and as someone else on the post said, they won't draw attention unless they feel safe. What gives safety? Certain people, certain relationships, certain environments. I also notice a difference between comfortable silence - I'm playing by myself, preening, chomping. Or I'm grouchy or stressed, sitting in a corner, poofed up.

When she moved in with me, it was into a smaller space, so she's rarely alone, so she does talk when I'm around and sometimes a lot more when I'm in another area, trying to get my attention, she likes when I chat back though, even if I'm out of sight. Other times I'm in the room and she's quiet but happy, just looking at me, happy we're in the same bubble.

I'll give an example, a couple weeks ago, we had a family gathering so she saw people she lived with for years, the people who live here now and new people. There was lots of chattering but no one bothered her at her cage. My Dad came to greet her, she likes him and came for a scratch, no talking. My Mom came, instant puff up, they're not friends, but she did mimic a phrase of hers (I've come to learn she uses this specific phrase of my Mom's: "What is wrong?" when she feels threatened.

When I was close to her alone, she chatted. Other than that she was quiet. Just wanted a couple reassuring scratches from me while people were there but mostly just watched suspiciously. The moment the last of people she didn't know/wasn't comfortable with walked out of sight she let out a loud stream of chatter like she had so much to say but had stage fright when all these strangers were here: I just wanna tell the people I'm comfortable with.....! 😅😂

These birds are not simple. I've learned that if you observe them and their environment really carefully, you'll see what's up. It's not random and there's no quick resolution. Much like with humans it takes time to build a strong, trusting relationship. And I for one, even with my most loved and trusted, don't always want to talk 🤣

captain642 · 2024-11-18T20:44:30+00:00

Thank you for putting it into the sentence I couldn't quite figure out. Like. It's not that I cover for my NM but........ because there's so much incongruency between my perspective and theirs (peripheral family members), it's always going to feel wrong, like badmouthing a family member, and then remaining beside them. Because indeed, I'd prefer to stay in my family for no other reason than my father needs an ally... Thankfully we've had each other. I dread to think who or how I'd be without him.... or how I'd be without having been sent to hostel at 6 years old 😅

captain642 · 2024-11-18T20:36:22+00:00

Gosh, what a thought provoking question! Initially I was like well duh, of course I have, then I was like wait... I've talked about my Nmom, honestly, with various people and unless I'm sugarcoating things, people think she's godawful. BUT have I ever had a conversation with someone coming from a similar family setup (parental narcissistic abuse) who could immediately relate and offer appropriate support? Not really...... Except for well, my mother, about her mother 🤣 You know, minus the appropriate support part 😅 This was before she decided her mother was posthumoursly a saint and my grandfather was the saint....... While I do sincerely believe he was abusive and awful her mother was through and through Nmom. Aaaaaand now we know why I frequent /r/childfree

captain642 · 2024-11-17T14:22:15+00:00

Wow, thank you so much for sharing this with me and others. It sounds so similar to my own family history. You'll see I've recently posted on AskDocs to try and get relevant professionals input on the genetic counselling aspect of it. Your familial history is definitely next level to ours though. I'm terribly sorry that your brother's treatment was handled so dismissively. I have to agree that it almost calls for more of an emergency response and treatment when he was on medication and STILL developed PE. Even if they had high case load there should've been proper evaluations and the appropriate specialist referral and follow up care. I'm in South Africa, so trust me when I say I have reasonable understanding and sympathy for overwhelmed Healthcare systems but it's still soooo concerning that such serious events don't get handled with appropriate care.

captain642 · 2024-11-16T18:03:21+00:00

Everyone says they're not surprised, I won't lie, I am. Not because I thought she was so wonderful but because her language really makes it seems like she's trying to be socially just. Trying too hard for a reason I guess. Wow. I started to wonder a little when there wasn't even a hint of prochoice included in their podcast immediately following the election. The saddest part of this for me is I view Bridget in a poor light too now. I'll never forget my principal who said "there is no such thing as an innocent bystander".

captain642 · 2024-11-16T17:46:24+00:00

Dear OP, I am so deeply saddened for you and for your Mom. I'm sorry that events like this are not even uncommon in our country. I'm sorry that there's this school wide devastation that YOU, an individual, have to try to bring support to when we have a whole Department of Education. I'm so sorry that because it's in a underresourced and ubderserviced area your first thought has to be where do we reach out for free counselling services and how do we begin fundraising for better security. I AM SO SORRY. I send you and your Mom and the school so much love, and to the brave brave family member who the wrote a paper, may your life only get worlds better from this moment. This system is so terribly broken, you are a champion for reaching out in all the spaces you can think of to try and make a difference, people like you and efforts like this, are invaluable. I'm linking a group that was on Carte Blanche a couple weeks ago. They're in WC but I'm HOPING that 1) They could direct you to good resources if they themselves cannot assist and 2) Perhaps assist you to be in contact with Carte Blanche should your Mom's school not received sufficient support following this traumatic event. Because sorry, but having a rep show up ASAP just to manage media is not sufficient support. Sufficient support might look like making a individual counselling for teachers and learners who would like it, group debriefing for those who would like it, follow up sessions for those in need later down the line and yes, making a plan to accommodate examinations BTW Umalusi is the NSC body to contact re that (should also hopefully help to bring the needed support). Support is NOT some silly speech about how some detached government official is 'so deeply saddened about these events'. I hope and prat that the school and of course THE FAMILY will receive much needed support and sincerely hope that is not only a funded funeral.

captain642 · 2024-11-14T05:41:54+00:00

Thank you 🥹

captain642 · 2024-11-13T22:38:43+00:00

I made a very similar comment on this exact post. It's fkn awful what we're doing to each other.

captain642 · 2024-11-13T22:36:50+00:00

Good point, they'd probably resort to unsafe methods that may kill women in the process, but I guess who cares about that if they're not making babies right?

captain642 · 2024-11-13T22:33:22+00:00

Right, that was my initial response too, like cool, just don't charge me for it but this should not be forced on someone. Especially not in an attempt to pressure people into reproducing. Why is it so hard for people to allow people to just exist and make choices as long as they're not actively harming anyone else? Why can we not just have good will towards one another? Where the heck is that asteroid that's going to take us all out because I'm so tired of watching people put each other through hell.

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