Looking for Communities to help

Hello @SOCRATES1 and welcome.

Being diagnosed with a psychotic illness is a big step that may have been arrived at after a very difficult time for your loved one and family.

As someone with lived experience (formerly diagnosed schizophrenic,  currently diagnosed bipolar) I'd suggest that " a "wrap-around" integrative system" might look very different depending on the home situation and life contexts of your loved one. Especially with regard to the person's agency and independence. A young person living with parents, with little insight into their illness, would have very different needs to someone older and in a different domestic situation,  for instance.

Our peer guide @RiverSeal has compiled lists of resources for people living with schizophrenia and started a thread where people can share their experiences.

Hearing voices and psychosis 🗯️ 

You're very welcome to share more about your family situation.

Do you have any particular questions for our friendly forums community?

@SOCRATES1 also see https://www.sane.org/information-and-resources/facts-and-guides/schizophrenia

There's also resources for carers 

Love me a bit of Socrates. @SOCRATES1 wrote on him in my HSC exam ... in another life ...lol

@Dimity is wise.  There are many different ways people exist while carrying those diagnoses.  I am glad you are proactive and trying to envision a good outcome for your loved one. It is difficult, to say the least.  Wrapped around integrated support sounds great, but also boundaries can be important.

There are also differrent approaches, from more clinical, social worker lead, community advocacy and peer lead....so much depends on the individual and their circumstances.

Take care of you as well

Hey there @Appleblossom ,

Thank you for your reply & pls accept my apologies for not having replied to your warm welcome sooner...
Appreciate also your words of wisdom & advisings... All very sound too no doubt.

While this journey has now been in progress for sometime... Things have continued to evolve somewhat slowly for a myriad of reasons I guess... However, we seem to have reached a juncture of sorts, as the family member in question, sort help voluntarily on this occasion...

Hence, a form of acceptance that a problem exists in essence...

I have recently acquired some excellent reading in the book, "Living with Schizophrenia" (Leggatt & Clark), & there appears to be a wealth of useful logic & empathy from within those pages thus far.

In my view, I am hoping that my family will all seek to learn more about this condition, & how best that we might all begin to truly contribute, in the best possible ways to help facilitate recovery...
It appears that there are many useful types of supports systems... However, not all are readily available in our less than ideal mental health system structures today.
Finding the correct path, and educating myself & others within the family circle appears to be of prime import. However, we will also require the services of very supportive clinicians too no doubt...

So although this journey is a continuance, it is really only now commencing, in my view...
Thank you again for the support you & Dimity have already provided.

Yes, the Socrates handle has a story all of its own too really... (perhaps for another day). Have you ever read, "The Allegory of the Cave"?
Quite the epiphany for me...

Thank you again Appleblossom... 8-)

Socrates

Yep @SOCRATES1 Its in The Republic. In my teens I lived with an uncle who did a major in Classical Civilisation, I was given his books, after he passed, and also studied it a little. 

A lot can help be seeing things "outside of the box", and being aware of our position and limits. I can get into otherworldly imaginations as well...but mostly I pay close attention to the earth we are on. lol  I am lucky to have been rich in study and books.

Socrates1 posted to you as well.

@Dimity 

Thanks again @Appleblossom ...  8-)

The Allegory of the Cave, was quite simply a late awakening for me personally... Studied a few units within an arts degree sometime back... Love having a philosophical bent in my life... Find it often more than useful too...

Love books & study! Always looking to read & glean more from the world about me...

To me, philosophy helps me clarify past, present & future... In a manner of speaking...

You sound a wise individual Appleblossom...  Words of philosophy while often seen in a metaphysical context, also hold application within the present too, in my view...

Interestingly, I struggle with imagined religions & deities... (just for the record - so to speak 😉

One of my greatest regrets, is simply that we humans, will never really live anywhere near long enough to truly grasp or approach a better understanding of what this thing we call "Life" really is... and how best to navigate our journeys with any measure of yet another ambiguity, 'success'! It has such broad connotations. Again, in my view of course...  

Appleblossom, have you had much experience with 'Schizophrenia'?

As of this moment, I am somewhat unable to resile my many reservations concerning the mental services & institutions here in Australia... Naturally, like many others here I am certain, I love and care a great deal for my afflicted family member...

Nevertheless, I do realise that delving into the subject holds many a 'wicked problem' to contend with, if you take my meaning... (?)

Thank you for your support again as always...

Night for now...

Socrates

For some reason my tagging has technical issue.  SOCRATES and I haven't been able to fix it yet.

hope you still get some notification cos you started this thread.

I believe psychiatrists would profoundly benefit from doing a little bit of philosophy.  It means Love of Wisdom, and they learn to be a little more curious, humble and develop insight into the consequences of their many actions, rather than hide behind legal loopholes. I am sure there are some good and caring and passionate ones, whose eyes have been opened to possible harms done by the so called mental health system.

I have a great deal of experience with Schizophrenia from a range of points of view. Unfortunately many SANE workers do not. Briefly, apparently, I am the daughter of 2 schizophrenics and married a high functioning man with schizophrenia, who also wanted me to take on the care of a baby born to a lady who was overprivileged but low functiong as she was very fond of illicit drugs mixing with her meds. HMMMM. So just there are 4, whom I have long term intimate anecdotes for.

I have made a life long study of mental illness, with intial focus on Schizophrenia, but for some reason they wont lock me up. I have never been hospitalised.  So I am pretty analytical about many aspects of it from a patient population to Lived Experience and various professional iterations within the field. 

Use your philosophy to connect with your Loved One struggling with said condition. Find your own authentic boundaries. You shouldnt have to agree with things you do not believe are true, with both your family member and the services.  Dont put the services on a pedestal. They are very fallible. but we all have to work in our best way with all that comes into our orbit. Just take them with a dash of salt, and dont be too naieve. Still, they may be the only option you have at certain times.  Options may open up at different times.  I believe its important NOT to pathologise one member in a family system, which tends to have "fluid" dynamics. @SOCRATES1 . Ach ... something re tagging is working but its still a bit skewed.   Oooopsee daisy.

Its important to care for self and do your own research, and maybe also gently and politely, keep the services accountable, if your family member is unable to adequately advocate for themselves..

I might try turning my computer off and see if that sets my tagging function.

Hey again. @Appleblossom 

In my first response to you & Dimity... I was not using the @ tagging system at all...

Unfortunately for me Appleblossom, I too have some issues of my own to contend with...

I have an extremely rare type of blood cancer, (Mylefibrosis - MF – insert chronic form of Leukaemia). It is a blood cancer that ultimately scars the bone tissue, causing what they term as 'Fibrosis'. Which eventually can lead to bone structure failure etc. Or worse, terminal (Acute Myeloid Leukaemia - AML)

All of that said, "Fatigue" is possibly my greatest challenge, that: ubiquitous bone pain; cold sweats; tinnitus; vision issues; headaches; nausea; Trans-ischemic attacks (TIAs - minor brain strokes), and they're just the main highlights but there are many others too... sadly...

While there is a "Cure" of sorts... Allogenic Stem Cell Transplant (ASCT), unfortunately, the success rate is far from ideal & quite abysmal in reality, & often leaving those who attempt the procedure much worse off, & about 1/3 deceased etc.

Hence, thus far, for me and in my case, I have elected to educate myself, (as best I may), and manage my condition pro-actively by self-advocating and helping others to also learn how to come to terms with the condition, (in one or more of its diverse forms of expression).

Built a small patients website, created a FORUM, and we have meetings every Six (6) to talk about anything & everything etc...

We also try to do some small amounts of Fundraising for Research, (registered NFP with the ACNC), simply because these blood cancers are so rare, and so little is presently being undertaken etc.

All of that said, I hasten to add... It's much better now than it was 2016 when first diagnosed (Dx).

Still what we do is such a very small thing in reality, but even if it helps just one person learn how to best cope, then we have been successful, in my view...  😉

Hopefully, whatever computer issues you are having might soon be rectified, as I would truly love to learn so much more from you if we can arrange that somehow...

In my positioning, I am a parent of the loved one who is afflicted... While it started when my progeny was somewhat younger, the situation as evolved growing worse slowly over a longer period...

However, I believe that we may have finally come to a juncture where, acceptance of this condition is finally beginning to be understood...  (fingers crossed of course)

For in my view, a problem cannot be solved, at least and up to the point when first it is acknowledged as being extant...

In any event, really appreciate your invaluable input Appleblossom...

Thank you for your ongoing support...

[edited by moderator]

PS. Happy to share sometime how & why the Socrates tag came about... quite a story really...  😉

Hey @SOCRATES1 - I've edited your post to remove your first name, in line with our anonymity guideline. Nothing you need to do, just letting you know!

@Jynx 

Ah I see...

If you feel that is best(?)

Thank you for the advising Jynx

Happy to continue as Socrates if you prefer...

Many thanks

S

@SOCRATES1 

Seems tagging is fixed.

Somehow my @ and " were swapped, it took me a bit to figure out but not too big a BYTE.

Being in parenting role is different, but maybe not that different. I do have a son that has mental health challenges but his presentation is not Schizophrenia, just one of the reasons I now doubt that belief decades ago, that it was genetic.  Thats what everybody said, and as a kid, its a scary diagnosis to have parents with, so I did a lot of investigation, on a number of levels. For us, I believe it is intergenerational transmission of trauma.

Gently find appropriate boundaries that make sense with your particular child, and your physical condition. LOVE is not to be underestimated, but I am not so naieve to say that love cures all. We also need a hefty dose of luck. Work and develop your child's sense of ethics, in an open and creative way, rather than being moralistic.  Philosophy really can be great.  Tho, as parent one doesnt want to overdo any approach.  My poor son has to put up with my dorky sense of humour: worse than dad jokes.

Bottomline: the 4 so called Schizophrenics mentioned previously were ALL very very different, even taking into consideration gender and generation.  Oooops 2 gens ... lol.... .

CONGRATS on making a forum to help people with your condition.  Good on you doing your own research.  Sorry. I no longer put any medicos on a pedestal. Yes we have to trust and reach out to them, but I wish they werent so damn greedy, and were held more accountable. 

Another bottomline re Schizophrenia. There may be vulnerabilities and odd thoughts, but there is no need to catastrophise and turn them into delusions.  I now believe that poorly trained pdocs presume, and jump on a thought that is a bit different to theirs, without really doing due diligence and seeing person in full psychosocial circumstances. Ie... Seeing what they think they are looking for.

If they had treated my son with more competence and ethics, I might be a bit more impressed, but they have not. 

What kind of work/study did you do outside of humanities?

@Appleblossom 

I've been adaptable over the years I guess...

Studied engineering & spent quite some time in that field; general develop residential & commercial build & construction.

Later, after a bit of travelling abroad in SE Asia, saw & witnessed many natural calamities.

Gained much insight into how at least 2/3s to 3/4s of our world live in dire poverty...

Modern philosopher, John Rawls proposed many theories when he coined the term; " Lottery of Life"

Essentially, that so-called lottery contends that if you were born of western environmental influences, and you were fair skinned, (insert White), then you had already won the "Lottery of Life". And those who were so deemed, had a head start on the evolutionary scale of  survival of the fittest, for want of better phraseology...  His book entitled - Theory of Justice, makes for an interesting read. However, some aspects proposed seem more logically derived than others,... one could say, it all depends upon where an individual's reality commenced with thin Plato's Cave...   Pardon my pun...    😉

Just prior to my diagnosis (Dx), I had finally landed a position through a DFAT programme in SE Asia, working in International Relations, International Aid & Sustainable Development...

However, after circa 6 years of study, I was rejected because my newfound Dx meant that I was required to undergo extensive testing before ultimately being deemed unfit to continue the role etc. That was quite a challenge for me personally too...

But I am still here... 😉

The name Socrates was gifted to me one of my Indonesian hotel students in Padang West Sumatra after a series of very nasty earthquakes...  I had a class of surviving hotel staff ages from 14 – 57, and a gifted student of English as 2nd language, (Rio), made me an email to Post their Final results after the exam. I lived & worked there for just over 3 mths(?) 

Astounding experience, and I am certain I learned much more than I ever taught!

Again the Allegory of the Cave... such an epiphany for me!

S

S

Ahhh ... SELAMAT DATANG ... we used to have engies ... do some of our courses ... @SOCRATES1 

Guess you had to do drill cores etc etc ... but I am not impressed by the engineers who built our local shopping centre .... drrr ... on an old riverbed, LOL...and they wonder why the place is cracking up ...lol ...  they should have taken a few more precautions ... standards are slipping mate....guess you are innocent ,,, didnt work in the field ... so I wont give you too hard a time ... I didnt get to use my fancy education either ... well ... I never regret it ...tho some HECS debt. 

I started in STEM. Guess I got lucky.  Wot R the odds?

Last did stats in 2nd year, and can only just count past 3 these dayz.  LOL

Not impressed by American oversimplifications, as I actually did some stats, was married to an overprivileged American, who dumped all his white guilt on me, without checking his facts first.  Wrecked my health and my family. Neck condition and in chronic pain from overwork since late 20s. So not good.  They get very confused and conflate a lot of things into Black and White. That is also a symptom in the DSM: B&W thinking.  I believe we should be careful importing ideas that may obscure fundamentals about This Great Southern Land, whatever you want to call it. I bin thinking Geological time for a widdle while.

Did stats on Bumiputra populations in Malaysia.

Spent time on Nias and Toba.  Bit of a fan of Sumatra. Maybe why I did Earth Science in the first place. I began it a few months after walking on a live volcano in Bali: Batur.  Dont get me wrong. I actually LOVE REAL SCIENCE. But it wasnt purrfect. Nearly got beaten up and ripped off in Sibolga. Not mad about Sukarno and Suharto. What do you think of the Panca Sila?

I did do Class Civ stuff ... before I left the shores of this our fair land, then sciencey, then literary, then political and then musical.  SO I am REEEEALLY lucky.

Probably ... lol ... did science to learn to stick to logic and facts in the shadow of my parents' diagnoses. Daddy spoke to me of Madame Curie and bought me my desk where I did physics. He died young.  Damn its hard to do that stuff when all you have is a mother with little English and NO education. Maybe it was LUCK. Or maybe it was BLOOD SWEAT and TEARS.  My family were definitely lefties. I was homeless at 6 and 16 years of age.  Most middle class peep cant even cope to have an intelligent conversation with me. There is a lot of unpacking of assumptions required, and they are often not up to doing the work.

When were you last in Indonesia?

I am glad you worked in AID @SOCRATES1 I still have a photo of a Peace worker and an Indonesian guy I helped get off drugs that were destroying the Kuta Beach scene.

Terima Kasih

@Appleblossom 

Selamat malam Appleblossom...

Yes, I also studied a little Bahasa Indonesian... Sadly, & a tad like yourself, I seem to have forgotten more than I remember of either the language or engineering formulas...

All of that was in another lifetime for me...

Long time ago was last in Jakarta & West Sumatra circa very early 2012(?)

Unfortunately, that career ended before it ever began, my Dx of blood cancer brought all of that to a sudden halt! Most disturbing time for me too...

Indonesia has many facets of interesting cultural & historical realities... I also studied a little anthropology too... Fascinating culture in so many ways...

Did you also make the connection in language between Bahasa Indonesian & our Australian First nations peoples? It's so readily obvious by the use of plurality and or size...

Wagga Wagga, Woy Woy, Wangi Wangi...  etc...

Fascinating!

Your journey also sounds quite the adventure too... I would really love to learn more from you and your journeys & experiences...  Sounds like we have a few things in common. Have you ever considered writing? I managed my first 100K word manuscript of speculative fiction. However, it still needs yet another penultimate edit, in my view...  😉

Your lived experience with schizophrenia also sounds book worthy... Have you ever considered utilising your wordsmith skills? I am certain that with all your education & lived wisdom, you could truly compose a masterful text, or even a tome of speculative fiction.

There isn't a writer out there whose words are not at least semi-biographical in content... After all, any writer worth their salt, can only write on topics that they are truly familiar with...

I've often wondered how much blame I might owe in respect of my child's ailment? I believe that at least some of that blame must be owned by me... My first marriage (& only) ended poorly. And the trauma suffered by my only child when I made my departure still echoes in my mind...

I am all but certain of that aspect of our lives...

In any event, hopefully, at some stage a good clinician might help unravel that question with greater clarity. 

As always Appleblossom, terimah kasih banyak...

Selamat malam...

Thank you for your thoughtful response @SOCRATES1 

I have only left Australian shores, once, for a year in 1981.  So thats when I was in Indonesia. I actually am saddened by too many plane trips being taken by people of all ethnicities, although I have often made the joke, that I dont have to travel any more cos the world is coming to me.

My first friend in the 3rd orphanage was indigenous. My father also had close ties to Kulin and Wiradjuri peoples, as living under the same roof generates a sense of kinship.  I have paid a lot of rent, and appreciate Daddirri, deep listening, and Wayapa Wurrk challenges.  I even did a cooee to get the audience attention when we had our performance today.  I go "Waa" to the crows. 

Blood cancer would be a difficult diagnosis to adjust to.  How is it impacting your life at the moment?

Regarding responsibility for a child's mental health issues. It is complicated.  They used to always blame the mother, the most and I am not seeing a lot of reasonable respect for parenting generally. There is a fellow called Winnicott, who came up with concept of Good Enough Parenting. I have done enuff stats, to know my circumstances were pretty unusual. I didnt really know how to laugh til about 5 years ago, so it took me 60 years. Slow learner. I can joke about stats, now and question the sample size of many mental health studies. 

Boundaries for your only child may gently lay a path for more thriving. Only children have their own challenges. Him or Her finding the edges of her body, mind and soul, as they journey into their own future.  

Online content, can easily be distorted when the mind is panicked and under threat, delusions can grow.  Rational argument doesnt always help, but neither does enabling irrational thoughts.   Holding or containing the space for inner growth and change may help ... They have to find their own sense of security and beliefs about what I call the spiritual or liminal. There are Hearing Voices networks and a group called Schizzyinc, which focusses on creative approaches.  The variety in outcomes for people with the Schizophrenia label is massive. The Power Threat Meaning Framework may be useful. Also a homegrown therapy called Narrative therapy.

I have done postgrad in writing and an indigenous lecturer was crossing boundaries with me. He is published and famous since he met me. I recoiled and licked my wounds again. SO I have a LOT of experiences with a range of peoples on this soil. I know enough, to prefer nuanced and authentic conversation about all the issues, beyond limited bit or bytes on social media.  Words were always my first love. I am planning to do more writing again next year. I have a good clinician, and hope they will walk with me for long enough to be useful, without being freaked out by my son's struggles. I am pretty polite and functional and its been hard for me to get good treatment. Hmmm.

Dont have excess faith in them unless they manage to actually develop a therapeutic relationship with your child, not just casually add pathologising labels, and pose like experts. Make sure they do some work for their pay. Private system is better if you can afford it. Where some therapy may actually unfold.

I am really upset this week from being confronted with the HARM my son's mental health care team, have done him. I did trust the services, but not anymore. I feel ethically obliged to urge caution to you. Its great you are not frightened of research.  Yep. Look at symptomology, diagnosis and side effect of the meds. Hmmm. All of it.  But honestly the science is a never-ending pool of possible speculations and generalisations. In my experience it's like they haven't got a clue, they seem to play drug experiments on clients and drop the ball, cos they got another job somewhere else [edited by moderator]. There are people better qualified than I who have opinions. Eg Niall MacLaren is an Australian psychiatrist:

https://www.madinamerica.com/author/nmclaren/

Respect and honour the relationship you have.  Guilt can only do so much, if genuine reconciliation has been sought, you have to forgive yourself. At least you are alive and care. My dad died when I was 11.

The transmission of intergenerational trauma is not only for indigenous peoples. The death rate in my family is significant. I am CALD, but my father was Australian and introduced me to his indigenous friends.

Anyway, thats my 2 cents worth.

@Appleblossom 

Hey and hello again Appleblossom...

Firstly pls accept my most profuse apologies for not having responded sooner... It's just really busy here for me atm... Naturally, I wanted to spend more time in my response etc.

I really am so grateful for the time & wisdom I found you embedded in your retelling of some of your experiences... Thank you Appleblossom...  8-)

I found that there was a great deal to read about in you last Post, & I needed some time to digest it all really... to understand & unpack some of the wisdom and knowing behind your words & your own lived experience...

Thank you too for being so candid in your sharing Appleblossom...

I too have studied a little Bahasa Indonesian, lived in West Sumatera in Padang, teaching English as a 2nd language for approx' 3 months... This all happened immediately after a really nasty series of earthquakes. I even went through quite a large one myself... 6.4 RS. Very interesting experience too!

You mentioned that you had only left Australian shores just the once, & was it for a whole year?

"I have only left Australian shores, once, for a year in 1981.  So thats when I was in Indonesia. I actually am saddened by too many plane trips being taken by people of all ethnicities, although I have often made the joke, that I dont have to travel any more cos the world is coming to me".

Sounds like we are of similar age groups too, you & I ... (67). So were you born in Australia? You mentioned the term "CALD". While not being completely familiar, I 'Google' understand it refers to people of other cultural & linguistic backgrounds... Obviously a great amount of diversity may well exist between one CALD individual & the next...

Also sounds like you too had a tough upbringing in certain respects... Were you referring to yourself when mentioning x3 orphanages? If so, that must have been challenging, as would losing your father at such a young age...

My only child is an adult, & although some of the signs of the illness emerged quite some time ago. The gaining of acceptance that the condition requires professional assistance became a voluntary understanding only this year... And it's still early days yet too I guess...

Some of your experiences with the "Mental Health system" sound somewhat familiar to me with my rare form of blood cancer too...

Most doctors, GPs, Haematologists/Oncologists, are really only becoming more aware of this group of cancers in most recent years... Hence, learning to appreciate a professional's lack of candour & experience was often more of a 'fishing expedition' in that very first instance! Things are slowly improving today... However, that has taken time, patience, research and a more committed role on my part to self-advocate, which eventually led me to understand how best to manage my own condition...

Countering simple human failings, (belonging to narcissistic and obdurate professionals) was something I had to teach myself to navigate through, all but unassisted!

Thank you also for the Professional Links you have provided too...

My role atm, is simply being there whenever needed, but I am really more on the outer edges of the current decision-making matrix, hopefully that makes some sense?

At times, I feel eunuch like in my inability to really assist in a more meaningful way... However, that is where I find a greater understanding in trying always to remain philosophical... While remaining ever vigilant, and on-call should I become needed etc...

Appleblossom, I am curious as to how much you might also be aware of the different medications available out there, and obviously any suggestions or recommendations that you may have concerning the appropriateness of dosage levels/ side-effects etc?  

Yes, I am aware that is a very broad question in essence... So many variables are always in play too...

Appleblossom, thank you again for 'being there'...

And please accept my very best wishes to you & all your family to enjoy some respite, love & of course 'fun' during the season's festivities, & best new year's wishes too...

Thank you...

Socrates

@SOCRATES1 Thanks for Christmas well wishes. Same for you and your family.

My mother's and migrant side was from The Netherlands, as my father died young and had no family, and they had very big family, that side dominated. I am 65.

Regarding medication, the forum community guidelines are fairly strict, so we cannot discuss anything in particular.  Guessing the best bet is to work with your child and the professionals involved.  

I have adopted the view that medication may help ameliorate some symptoms, but I really find simplistic clinging to a biochemical model a bit mechanistic and not actually in line with the broad range of scientific material currently available. I do know many psychiatrists in the public system are limited timewise by case numbers, so tend to push that approach, but I see it as a bureacratic lack of resources problem not science.  I still believe it is best to factor in psychological and social circumstances in understanding the life journey of your particular unique child.  

Your intention to remain available and philosophical is great, and probably will have the best outcome.

"My role atm, is simply being there whenever needed, but I am really more on the outer edges of the current decision-making matrix, hopefully that makes some sense?

At times, I feel eunuch like in my inability to really assist in a more meaningful way... However, that is where I find a greater understanding in trying always to remain philosophical... While remaining ever vigilant, and on-call should I become needed etc..."

Yes that all makes lots of sense.  Its similar to my approach. To be available when needed.  My son has struggled with mental health issues a lot, but he presents more as Bipolar 1 than schizophrenic, for what any diagnosis is worth... I personally accept being neurodiverse or aspie, as they diagnosed my son with it, and its a lot less scary than the bigger diagnoses. Bottom line is I accept trauma has a role, while we are all still figuring out how epigenetics actually manifests in each human person.  Words and labels can help understanding but if too rigidly applied, may actually inhibit it.

I feel helpless a lot and uncertain what is the right thing to do, but I continue to do the research and try to stay informed. Just that its usually complicated.

@Appleblossom 

Thank you again Appleblossom...

You do sound very wise & measured in your manner of learning & comprehending "life"

That is quite a skill, & one I hope to emulate one day...

Terimah kasih banyuk Appleblossom

Best wishes...

@SOCRATES1 

Are you able to have much back and forth conversation with your son about the things that matter to you both?

Dont worry I have my foolish and less measured moments!

I am currently writing up a reflection on my times of upwelling, as I call it.  When all my restraint, care and thoughfulness are out the window, and I just speak my truths.  I promised my psychologist I would work on it to talk with her about it.  

@Appleblossom 

Hey Appleblossom...  😉

Yes, we are able to talk... However, I never press the subject matter too hard...

I also try to utilise my own experiences where possible, to relate that w/ my blood cancer Dx, I too must learn to live w/ the consequences of that Dx in order to better manage my 'Quality of Life'. That also involves utilising lifestyle changes, taking my medication, monitoring my symptoms & results regularly so I can stay abreast of any changes etc...

I am also actively working on myself, in order to better manage how I respond, as opposed to how I react! Endeavouring to stay calm, measured, & always trying to listen more deeply to all that is being said, both verbally & in body language where possible...

I just last evening have started creating a 'List' of books I wish to read that I believe will continue to aid me in my endeavours to better comprehend all my child is going through...

The 'Label' of neurodiverse sounds less stigmatised, however, I am not sure how much it will aid, when acceptance of the problem seems to implore openness & rational honesty, if such a things truly exists...?

Not so sure about the topics of guilt & responsibility... Meaning that to some extent, we don't choose our own place in 'Life', while also acknowledging that we all play our part in our own lives & of those we are closest to...

There is no doubt that this subject matter is vast, and trying to grasp relevance of the human mind & condition is no small thing!

Thank you Appleblossom...

Selamat siang...

https://tandemcarers.org.au/p/p/Home.aspx 

not sure if you are aware of carer groups @SOCRATES1 

guilt and responsibilty are also huge topics

I grew up with lots of catholic guilt being thrown around, and have tried to move away from such mindsets, while trying to find agency and do the right things in day to day life and with those around me.  There can also be guilt trippers that have rigid views on what is the responsible thing to do.  Life circumstances are unique, so I prefer the concept of not judging another... trying to walk a mile in their shoes .. to understand .. etc etc

Its great you both can talk, and it can be fine to have space within relationships and conversations.  We dont want our kids to be clones...

Does your child have any good influences, interests or connections?

I also model behaviours that I believe are best, but relationships are fluid.  Each person has a window of choice, though I am not sure how broad those windows actually are.  We do know more about trauma and neuroscience, these days... 

you are right ... its a journey...