Here is a link to one of the best articles I’ve seen describing PDA …
Actually autistic
Educated
I just finished reading Educated by Tara Westover. I’m not really going to review the book, other than to say that it is well written, and interesting. I would have liked more description of emotion but as we’ve discussed before, that’s a me thing. The book is good. I would recommend it. I don’t actually want to talk about the book though. I want to talk about the thoughts the book inspired.
Towards the end she, Tara, has a conversation with her mother where she felt seen, finally. Without getting to deeply into the story (I don’t want to spoil anything), this conversation sparked an internal shift in Tara. Upon reflection, she realized that the shame she had carried throughout her life wasn’t about her life circumstances, it had much more to do with the messages she received about herself, her worth, her identity, through her parents words and actions. Their refusal to accept her for the whole and unique person that she is.
This got me thinking about the weight we carry as parents. The responsibility that we have to our children. And the almost hypnotic power our parents tend to still have over us as adults. I’m not sure we ever fully get out from underneath those wounds.
The chances of my own mother ever fully seeing and accepting me as I am is near zero. I’ve accepted that and that I have to be that source of acceptance and validation for myself. I was going to write that I’m not sure I know how to do that, but no, I am sure that I do not. It’s something that I struggle with constantly and I’m sure will to some degree all of my life.
How, knowing the affect our parents have had on us, do we go about parenting our own children? I understand that it isn’t possible to not cause your child any damage, but I definitely would like to minimize any negative affect my unhealed parts have on my son and maximize the affect of the opposite.
I don’t know. I’m struggling here.
As I’ve talked about before, my son is autistic, PDA profile. I’ve finally (after about two years of searching) found someone who should be able to accurately assess him that I can afford. My hope is that she will be able to recommend appropriate support. Even with support, I’m having a hard time seeing how I can find balance in my life. Balance between his needs and my own.
I’ve recently seen a few videos about a study done on the effects of parenting a PDA child on the parents (link to first video in the series) and I received this comment, “PDA tends to be the hardest parenting, a 110% job”, when emailing about my son’s upcoming assessment. Both of these things were highly validating.
I’m not going to sit here and complain. I am so grateful for my son. It took me twenty years to get him (long story, I’ll save that for another day). He is my miracle and I love him so much. But…In this society, with the lack of support given to any and all parents, how are we meant to not only survive but thrive as parents? To give our children the best of ourselves so that we can stop passing down these old wounds that no longer serve anyone? Please, comment with your thoughts and experiences.
Writing Hard Stories
I just finished reading Writing Hard Stories by Melanie Brooks.
I had purchased it second hand and was surprised to find that this copy was signed by the author 😊
I liked this book but I was simultaneously bored by it. Writing Hard Stories is a collection of essays based off of interviews with memoirists who have done just that, written hard stories. Stories mostly of loss and grief.
It’s well written and the interviews are informative and inspiring but… While all of the authors have their own unique voices, the things that are said all amount to pretty much the same thing. The upside of this and the thing that makes me glad that I read it, despite the tedium, is that in speaking of their process. Not their writing process exactly but the way that these books came to be, well, books. Their struggles. Their confusion over what story it is that they are telling and how to best tell it. Their feelings throughout. These things are all reflected in my own journey.
In reading this book, I’ve come to the conclusion that everything that I’m stressing about while trying to bring my book to life, is the process. This is how books like mine come to exist. I’m exactly where I’m meant to be. I am right on time. My journey is coming together perfectly.
The Kiss
I just finished reading The Kiss by Kathryn Harrison. It feels uncomfortable to critique a memoir for anything past the writing itself. Having an opinion on the story feels a bit bizarre, I mean, it’s someone’s lived experience but… Here we are.
For as much as I fear people, man do I love the beautifully complex creatures that we are. I really liked this book. This story could be easily dismissed for the perverse nature of the story (and affair between a father and adult daughter) and it seems there were quite a few people trying to do just that when it was first published but that isn’t how I see it. All I see is how vulnerable are our psyches. How vulnerable we are emotionally. How rich and vibrantly complex our lives, even in the messy, the moments that we and most definitely society would consider failings.
I know many criticized the author for publishing this story. Called her attention seeking, creepy and implied that what was most definitely abuse was not because of her age at the time of the affair. I can only see the sharing of her story as brave and necessary, really. Things like this persist because we keep them hidden. The book should make you feel uncomfortable, hopefully uncomfortable enough to not look the other way in the face of abuse in and around you own life.
Oops
Apparently, I forgot to share this here🤷
Crying in H Mart
I just finished reading Crying in H Mart by Michelle Zauner. If you don’t already know, as a makeshift crash course on memoir writing, I have been reading memoir almost exclusively. Every list of recommended memoirs includes Crying in H Mart, like every damn list. So… I read it. I have mixed feelings.
The book is well written. Much of the prose quite beautiful and though the timeline in nonlinear, it didn’t feel confusing to me in the slightest. That said, I really didn’t like it. Like it was ok. It was fine. Not how I want to feel after reading a memoir… I want my heart ripped out of my chest. I want it to hurt in the best way and then… Then I want the wound to be dressed and cared for, gently. I want to feel made whole again by words alone. I want inspiration. And I didn’t get that here. For me, I feel like the description of outside events, environment, what have you, far outweighed internal experience and quite frankly, I was bored.
I’ve come to realize that I may have different taste than the average reader and/or whoever the readers are that decide that a book is so good and deserves all the praise. This isn’t the first highly recommended memoir that I’ve felt this way about. It always comes down to the same thing. I am so much more interested in the writer’s internal experience, the description of their thoughts and emotions than I am the outside world. I have to be able to relate to the author and I have to be able to relate emotionally.
I don’t know why any of this is surprising to me. This is absolutely the reason that I consume media, whether it be books, movies/shows or music. Unless I am in it to learn, which is also huge for me (I need to know all the things, ALL THE THINGS), I’m basically using it to process my emotions. I have difficulty with identifying my own emotions. I’m very good at seeing them in others but myself, well, it’s s struggle. I need someone outside of myself to trigger these emotions so that I can feel and process them fully.
This post is definitely not a dis on Crying in H Mart or Michelle Zauner’s writing. It is a well written book. If you enjoy books that are highly descriptive of the environment, this may be for you, especially if you like descriptions of food or foreign cultures. If you’re like me and are more interested in the internal, maybe not (in maybe a third of the book there is more emotional description), maybe then you’d like the book I just read (Unbearable Lightness by Portia de Rossi) or the one I’m reading currently (Girl in Need of a Tourniquet by Merri Lisa Johnso) more 🤷
Anyway, this has me thinking about writing and my memoir. I’ve heard over and over that most writers new to memoir struggle with the whole show don’t tell thing but that that is easy to learn. That the real struggle tends to be understanding that when you are writing your memoir, you aren’t just talking about yourself, you are making a connection with a wider theme. You are using your story as an example of some wisdom that you attempting to impart. It isn’t about you, it’s about the lesson.
I think that may be backward for me. I may struggle with the former much more then the latter. The general point of my public writing is to use my life, my story, my struggles to help others feel less alone. I definitely use it for my own processing but I do so by connecting my experience to larger societal themes, right? I feel like that kind of comes naturally to be but description of things outside of myself… that may be a struggle for me.
Like I said, it doesn’t interest me. If I’m being completely honest, at times I just skim the outside description. It feels like unnecessary filler and it bores me. Given that much of my life had been lived inside of my head, that makes sense. What about you? How do you feel about description in writing? Do you prefer description of the scenery? The action? Or are you similar to me and prefer the internal landscape? Maybe both are equally important for you? I’m genuinely curious. Please drop a comment and let me know.
On Oppression
I watched the movie The Hate U Give. I woke up the next morning with these weird I running through my mind…
To those who have walked before me
I carry your pain in my heart
Your tears staining my face
Alongside my own
For all those who have lost their voice
Had their voice stripped
Existence dismantled
To become the emptiness
The nothingness
We speak
We shout
We cry out in agony
We cry out
Let us be heard
For all of those with no voice
I shall learn to use my own
The Hook
I’m still reading and participating in the exercises in Kelly Notaras‘ The Book you were Born to Write.
Kelly encourages writers to develop several “hooks” for their book. A hook being a short , attention-grabbing statement that describes the essence of your book and entices readers to want to learn more. She then suggests asking any followers you may have their opinion. So, here we go… Which of these do you like best? Which book would you be mostly likely to read? Is their one that stands out? None? A combination of two or more? Please let me know and again, please honesty and kindness.
- Growing up as an undiagnosed autistic woman, trapped in a world of addiction, self-harm, and codependency, living as though invisible and misunderstood. This raw, unflinching memoir reveals my battle to survive, break free from the glass, and finally be seen for who I truly am.
- Growing up as an undiagnosed autistic woman, fighting through addiction, self-harm, and codependency, all while feeling invisible in a world that doesn’t understand. This searing memoir is the story of my struggle to survive, break free from the glass, and reclaim life on my own terms.
- How not knowing I’m autistic caused me to live a life disconnected from myself and my journey back home.
- The author recalls a life of invisibility as an undiagnosed autistic woman and the events that led to her finally learning to live life on her own terms
- A memoir of a life of invisibility and how my children, the one I have and the one I almost had, lead to my autism diagnosis and self acceptance.
The Book you were Born to Write
I’ve been reading The Book you were Born to Write by Kelly Notaras.
I’m only about a third of the way through but so far, I’m finding it helpful. I’ve started working on my first memoir. I have actually written something, not much but something. I still didn’t have a full grasp on what I’m writing. I’ve got the gist but I’m still struggling with the structure and what I want to include. To help, I’ve been reading only writing books and memoirs. I’m using them like a class of sorts.
Anyway, The Book you were Born to Write…Kelly includes exercises that have nothing to do with the actual writing but more of the motivation to write, and getting clearer on your vision. She suggests that you make a mock cover for you book so that you have something tangible to hold in your hands. I don’t have the means to have one actually printed out but I did decide to make one so that I can visualize my book as well, a book. I’d like to know your opinions. Keep in mind that’s it’s really basic (I made it in Google photos in a very short amount of time). Please, if you give your opinion, be honest but also kind. Thank you ❤️
Pervasive Drive for Autonomy
I’ve mentioned before that my son is autistic with a PDA profile. PDA stands for pathological demand avoidance. There is push within the autism community to change the name to pervasive drive for autonomy. Aside from the fact that the term pathological demand avoidance is just plain stigmatizing, the reason for the proposed change is that the new name reflects what is really going on, a pervasive drive for autonomy.
People with PDA have a nervous system that becomes activated, i.e. they go into fight/flight/freeze, anytime there is a perceived loss of autonomy. Loss of autonomy is perceived as a threat to their life. This drive for autonomy outweighs all of their other survival drives and can make it difficult (if not impossible at times) for them to access survival needs like eating or sleep. This can look like demand avoidance but that is not the only way that it presents. At this point, I don’t think anyone really knows why this is, only that it is. What I know for sure, is that PDA children are intensely sensitive beings.
My sister and I were talking about this the other day. We were talking about how difficult it can be parenting a child with PDA because of their intense sensitivity. Casey from At Peace Parents says that in every interaction with your PDA child, you are either accommodating or activating their nervous system. Knowing my son the way that I do, I believe this is 100% accurate. Because of this, there is a need to think about what you’re doing in any interaction with your child in a way that a parent of a typical child would not have to. In what way should I phrase what I’m about to say to my child so that I don’t send him into fight or flight? Is what he is asking for doable? Who is involved? Are there any issues of safety? Do I have the energy to accommodate him? If I don’t, will he end up in a meltdown that requires more energy from me? And so on.
My sister and I were talking about this and how with as difficult as it can be, I am so glad that I am his mom. I came to parenting with the idea that children deserve respect and autonomy. I was able to see my son’s struggle as just that, struggle, not misbehavior and have been willing to do my best to accommodate him and learn what he needs from birth. This is not easy and it isn’t made any easier by the general view of how children should be parented in this society and the gross misunderstanding of PDA and autism in general. I practice low demand parenting. Many people, not understanding the PDA nervous system and it’s needs, mistake this as permissive parenting, AKA being a pushover. I’d like to give you an example from my life in order to illustrate what parenting a PDA child can look like in action.
My son likes cheesebread. He likes cheesebread from pizza places and he also likes to make it with his dad. My parents had ordered pizza and cheesebread the other day, so he has had cheesebread for breakfast the past few days. Yes, he eats cheesebread for breakfast. Alongside of it, he will have strawberry milk (a nutrition replacement shake), or his juice (multivitamin/magnesium/minerals) and fruit. This is the only way he will eat, at all… If he has his cheesebread.
He ate the last of it yesterday. He knew this but was not feeling ok with it. Last night, while getting him to sleep, he was insisting that he have cheesebread when we woke up. I explained that we didn’t have any. That if he wanted cheesebread, he would have to make some with Daddy. There were tears but we managed to get to sleep.
This morning, the first and only thing he would talk about was cheesebread. I’m not sure how to explain this in a way that will make sense to someone who isn’t in the situation, someone who doesn’t understand. He knew and understood that there was no cheesebread. He was upset about it but the lack of cheesebread wasn’t the problem. The problem was that he wasn’t able to choose what he wanted for breakfast. That I was telling him not only that he couldn’t have it but that if he wanted it, he had to make it. That I was telling him anything at all. His perception was that he had no autonomy in this situation and that is a threat to his survival.
He became withdrawn and wouldn’t talk, other than to say cheesebread and then began to follow me everywhere. Not demanding cheesebread. We had discussed it many times (“I’m sorry buddy. I know you really want cheesebread. If I could I would give you some. The only way that I know you get cheesebread is to make it”), he was following me because he felt unsafe and would feel that way until something gave him the feeling of having a sense of autonomy.
Other than the following of myself, this came out in what is described as equalizing behavior. Anything I did, he needed to do the opposite. I turned the TV down. He had to turn it up (he couldn’t figure out how so he muted it and watched it without sound). I got him water, he needed it in a different cup….
The thing is, he was hungry. He wanted to eat breakfast. We had other food he likes and did want but he could not let himself eat it until he felt safely autonomous. This autonomy occurred because while he was insisting that there was cheesebread in the fridge, I told him that I couldn’t find it, I needed him to find it for me. I told him that when he found it I would make it for him. We went and looked in the fridge. There was obviously no cheesebread. I asked where it was and he pointed to his juice that I had already mixed up. I gave it to him and everyone is referring to it as cheesebread(honestly, while we this was happening, I felt an immense sense of relief at finding a solution but also an acute sense of terror that someone might accidentally refer to this “cheesebread” as juice. Why? I know the consequence could be him stopping eating ask together or because his nervous system is experiencing distress around food, he’ll go back to being hypersensitive with food which causes him to vomit often. These are things that are always going through my mind). This freed him to be able to ask for what he actually wanted for breakfast… cornbread with honey and strawberry milk.
I don’t know if this is helpful in any way. I’m aware that you may read it and only see a spoiled brat with a permissive mother. I can only assure that that isn’t the case. Or maybe you’re scratching your head and saying but isn’t that just normal young child behavior… Young children are known for being demanding, after all. Again, I assure that is not the case. This behavior is pervasive. It is in all interactions, all of the time. My son is the sweetest boy you’ll ever meet but you can’t always see that. My son, once comfortable with you (because he is high making otherwise) will argue with everything you say because being told something, even if he asked you to tell him, is perceived as a loss of autonomy. It is a threat. My son, and other PDA children feel as if under almost constant threat. All I ask is that you keep an open mind and be gentle with them. And while you’re at it, be gentle with their caregivers and, you know, maybe give us the benefit of the doubt. We do know our children.