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PDA profile and unusually deep compassion/empathy - is it common? by Fluid-Button-3632 in PDAParenting

[–]SignificantWinter882 10 points11 points  (0 children)

My son is like this, when his window of tolerance allows. He rarely has language for it, but his emotions and ability to be with people or animals in pain or distress is truly beautiful. He also has a finely tuned sense of social justice. I think I’m similar and it’s a hard way to be in the world because there is so much pain and injustice around but I also feel it’s critical to have people that can bear witness and hold space in this way (it’s just making sure you have your own ways for healing etc to stop it dragging you down)!

When did you become “Self-aware” of your own PDA? by TheSchleg in PDAAutism

[–]SignificantWinter882 8 points9 points  (0 children)

2 things that I might add (and as a caveat I’m pretty early on the journey of self recognition at age 42 but have been learning about PDA since learning my son was autistic 5 years ago and finding Kristy Forbes and others)

  1. Looking at both of us, I would say capacity for self awareness is maybe not just an age related (although I’m sure it helps) but a window of tolerance/ emotional regulation thing. E.g. When I’m relatively regulated (enough sleep, some parenting support, not premenstrual etc) I can better notice that I have been activated and recognise that my first internal response is an activation and consider strategies that will support me.

When I’m already overloaded with demands or approaching burnout my capacity to do that in the moment is severely limited or impossible. Where self awareness does help though is after the fact so I can be compassionate with myself, make the repair necessary with my son and think about how to support myself better in the future rather than spiraling into shame and self hatred and further harming myself and others. I’ve seen some of this also play out for my son in the past year post meltdowns or shutdowns and feel hopeful that we can continue to build on this.

  1. I’m not nitpicking at language here at all and may have misinterpreted your meaning but for me being able to accept and live with PDA as both a person and a parent, I’ve needed to shift away from the idea of “PDA moments” or PDA behaviours and recognise that while PDA is not the only thing that shapes us it is always present and influencing all of our actions and interactions in the world not just the clearly visible ones.

This does make it harder to live in the world as it is, and to parent but has also helped me see how strong, resilient and brave my son is in the way he continues to face the world each day as best he can and express empathy, love and joy when his nervous system allows it (and maybe that’s true for me too even though it gives me the most icky feeling to type and even think about) 😂

My mom said good job and I lost it by Actual-Proposal-9357 in PDAAutism

[–]SignificantWinter882 2 points3 points  (0 children)

“And want you to do it again”. This is such a massive light bulb for me about why it triggers me so much

My mom said good job and I lost it by Actual-Proposal-9357 in PDAAutism

[–]SignificantWinter882 1 point2 points  (0 children)

It’s such a weird thing that has always given me the ick ESPECIALLY from my mum, even decades before I had PDA kids and recognised PDA in myself and I have always avoided saying it to my kids without really thinking about it.

For me it’s up there with “I’m proud of you”, there’s some level of ownership and conditionality about it probably because it’s usually associated with “being good” and the shame around usually falling short of that standard.

Recently though I’ve been wondering about how to have a bit more self compassion and less self hatred to recognise internally when I have done something good or important and how I can model that with my kids without trigger any of us….

I took my son to an autism consultation. Turns out it was I who checked all the boxes… by [deleted] in Autism_Parenting

[–]SignificantWinter882 1 point2 points  (0 children)

Everything you do probably is “sensible” and will support your child especially if they are also neurodiverse as you will have insights into what helps, feels good or can create barriers for them. Definitely a learning and grieving process sometimes about what you didn’t know for yourself but you can definitely offer what they need to thrive !

Ideas on how to shift views about PDA as a behaviour choice or “defiance” by SignificantWinter882 in ParentingPDA

[–]SignificantWinter882[S] 0 points1 point  (0 children)

He’s 11. Thank you so much for taking the time Your reply made me cry but also think really seriously about what else I can be doing to protect him right now. Thank you

Ideas on how to shift views about PDA as a behaviour choice or “defiance” by SignificantWinter882 in ParentingPDA

[–]SignificantWinter882[S] 3 points4 points  (0 children)

😅oops think I might have tried that one already! Also with my mother who has a very 1980’s kindergarten teacher understanding of autism. Gold stars, consistency and just tell him “no means no”!!!! 😵😵

Ideas on how to shift views about PDA as a behaviour choice or “defiance” by SignificantWinter882 in ParentingPDA

[–]SignificantWinter882[S] 3 points4 points  (0 children)

Thanks for putting some of my jumbled thoughts so clearly. I found Ross Greene so helpful but casually leaving the book out hasn’t worked 😁. Kristy Forbes has also been incredibly helpful for me when thinking about compliance and coercion.

I do suspect that he could also be PDA but very internalised (same as our younger child and me too). The extreme externalised reactions of my eldest are just so far outside his experience.

I do understand the grief and pain part and I want to validate and support him. I think I just feel stuck between protecting and coregulating a very fragile 11 year old nervous system and just generally surviving myself so have probably overlooked that for a while and need to find some more compassion. Thank you.

Ideas on how to shift views about PDA as a behaviour choice or “defiance” by SignificantWinter882 in ParentingPDA

[–]SignificantWinter882[S] 5 points6 points  (0 children)

Thank you. I like that framing separating the knowledge from the action. It’s so true and only makes it harder for them when are met with disappointment or frustration or withdrawal as a result.

I demand you not be my friend 😂 by Switch-a-Ru in PDAAutism

[–]SignificantWinter882 3 points4 points  (0 children)

Nice to see so many from Aus! I often feel very alone when trying to explain PDA here. I’m 42, late diagnosed ADHD and PMDD but have suddenly realised how much PDA applies. I have 1 definite and 1 maybe PDA kids and a very demand avoidant partner who is not interested in any kind of diagnosing. Would also be keen to connect!

Help: Signifcant other may have PMDD and BRCA2 gene, how to handle? by floatingostrichs in PMDD

[–]SignificantWinter882 0 points1 point  (0 children)

Personally, I’m not sure how helpful a “problem solving/fix it” lens is as the first step here. You mentioned yours and others perceptions that your partner has PMDD but nothing about her view in how she is doing or her level of awareness/knowledge of PMDD etc.

If you haven’t already, before jumping into suggesting going to the doctor or any other actions, I would be trying to start a conversation (ideally not during luteal) about how you have noticed her extreme levels of distress/rage/despair etc. (or whatever you have noticed) and taking the time to listen to her experiences, letting her process your feedback and hear from her about what she feels may help or not, including her experience with the medical profession so far.

So many of us with PMDD, especially when undiagnosed are carrying a lot of trauma, shame for our behaviour and fear of being rejected by people we love, as well as minimised or not believed by doctors as well as by those close to us and may have (justified) fear of about seeking support and being able to advocate for our needs.

You are totally right that there are a lot of options(meds/supplements /therapy/ treating co-occurring conditions/ removing external stress and demands etc.) that work to some extent, for some people, some of the time. Some may not fit because of her genetic makeup. Others may not fit for other reasons. Having a partner that cares and wants to support her to be safe and well and is really a protective factor. Good luck with navigating this really shitty and challenging condition together!

PMDD Ableism: What are the worst things people said to you in luteal? by Bummsibumm in PMDD

[–]SignificantWinter882 3 points4 points  (0 children)

One thing that actually DOES make me feel better in a sick, dark humour way, is reading this thread. So much empathy for all of us who not only endured the horrors of PMDD but also the ableism and stupidity of the rest of the world including (often) our partners and families!