Preverbal Trauma

Posted on by Astrid

Today, I wrote in a Facebook group about preverbal trauma. I know for a fact that I endured a lot that could have caused PTSD from birth on. I was born prematurely, spent the first three months of my life in hospital and was hospitalized several more times before the age of five.

About seven or eight years ago, I started experiencing body memories that I immediately associated with a medical emergency that I endured at age four. At the time, my trachea closed up and I as a result had difficulty breathing. I never completely repressed that memory, always knew that it’s something that actually did happen.

So I wonder if I made said association because it makes more sense than connecting the body memory to preverbal trauma. I mean, preverbal trauma is very controversial, because people do not form that clear memories until the age of three. That doesn’t mean people cannot be affected by preverbal trauma. It just means the memory is hard to recover.

I have alters. About six years ago, an alter emerged that is constantly curled up in a fetal position. We don’t know more about her. A seven-year-old alter who also emerged around that same time talks about that alter as a baby in the incubator. Now of course babies in incubators are not in the fetal position, so yeah.

Still, it all makes me wonder whether I’m making all this trauma stuff up. I mean, yes, I was born prematurely. Yes, I spent three months in hospital and had repeated re-admissions before the age of five. But my parents say that until age seven, I was completely fine and carefree. I mean, it’s not like everyone who endured trauma develops PTSD. So could it be I’m just making this whole preverbal trauma thing up?

In a preemie parent support group, I asked whether anyone has experience with their child getting EMDR for medical trauma. I have always wondered whether EMDR could help me. It was recommended when I had just been diagnosed with dissociative identity disorder in 2010. Then I heard it’s not recommended unless you’re very stable otherwise. Well, the consultant I talked with on Monday said that’s no longer the case. So maybe I could benefit from it. Several parents responded about reading their child a “life story” about their birth and hospital stay while the psychologist did the EMDR. Since my parents aren’t very supportive, I cannot ask them to help me with this, but I could create my own life story based on what my alers tell me.

Consultation Meeting at Day Activities

Posted on by Astrid

So I had a meeting with the Center for Consultation and Expertise consultant at day activities this morning. First, I talked some with her alone. We discussed my care needs in some more depth than we’d done when she’d visited me and my husband at our home. I still feel the ideal situation is that my husband and I could still live togehter but close by a care facility. I also mentioned that, though my husband supports me wherever I go, he has some reservations about us living in a lean-on apartment together. A lean-on apartment is where you still live independently, but close by a care facility. Since my husband and I together make too much money for renting a home too, and we don’t have a huge financial reserve, choices are limited. This means most likely I’ll either have to manage with the same amount of care I get now, but we could move to a larger town, or I’ll need to go the long-term care route and essentially live away from my husband during the week. I can manage okay’ish now and I don’t want to risk my marriage for better care, so I’ve already reluctantly set my mind on the former.

We also discussed my needs for mental health treatment. We discussed the insiders and I named a few. The consultant, herself an educational psychologist, took my experience surprisingly seriously. I had expected she wouldn’t, given how she seemed to respond when my husband said he’s married to Astrid, “pieces” or not. I mentioned having come out to my psychiatrist. I’ll have a meeting with her and my nurse practitioner on October 2. I mentioned the psychiatrist having said that my treatment may take another five years. Again surprisingly, the consultant didn’t react negatively to that, saying instead that if I felt it’d be beneficial in the end, I should go for it. We also went into childhood trauma a bit, which is the reason the insiders are here. The consultant recommended I discuss getting EMDR with my psychiatrist and nurse practitioner. I said this had been recommended by the psychologist who rediagnosed me with autism in 2017 and on whose report my treatment plan is based. However, that psychologist recommended I do dialectical behavior therapy first. The consultant disagreed, saying that nowadays, people who aren’t very stable or even people with intellectual disabilities can benefit from modified EMDR. She mentioned a therapist’s name that I couldn’t fully understand and a quick Google search came up with nothing.

Then, we drank coffee and after that, the consultant talked with my day activities staff. She asked what activities I do during the day. She also recommended my staff respond proactively to my becoming overloaded. I’m not so sure I like that, but I think it’s for my own good anyway. I mean, we again went on a long walk this morning and I couldn’t fully keep up. As a result, at the end the staff decided not to take me on the full, hour-long walk again for now. I so badly want to meet my goal of 10,000 steps a day, so I feel pretty awful having to cut back.

On October 4, the consultant will make her recommendations at a meeting with my home support coordinator, assigned day activities staff and me. I’m hoping for the best.

Do I Have to Be Loyal to My Parents?

Posted on by Astrid

Last week, I had a meeting with my nurse practitioner. We discussed my experience of being multiple, of having roughly 25 different selves. We also went into part of the reason I’m like this: childhood trauma.

There are selves who are pretty loyal to my parents. They keep wanting to call them, visit them. They keep worrying about what happens to them shoudl they fall ill. My parents are in their sixties, so it is pretty well possible that their health will fail anytime within the foreseeable future. Of course, I don’t hope so and they’re still pretty active, but well, religion aside, no-one has eternal life.

Then there are parts who have stopped caring about loyalty and who are focusing on me. One of these selves emerged shortly after my grandma’s death last May. This event seemed to be cathartic, having caused me, or at least that part of me, to let go of the idea that my parents will ever be what I wish them to be. Just like I won’t be what my parents wished me to be, they won’t be what I wished them to be.

This split between wanting to be loyal to my parents and wanting to move on with life and my own process, also comes to light on this blog. I usually write pretty openly about my experiences, but each time I keep wondering what my parents will think if they ever read this. Part of me doesn’t care, as I’m not lying about my experiences or feelings. Part of me feels I’ve been scapegoated enough that I have a right to tell the truth even if it hurts. Yet part of me still feels I have to be loyal, show respect, honor the people who brought me into this world.

Linking up with Five Minute Friday. The word for this week is “loyal”.

Emotional Flashbacks: I Tend to Fight

Posted on by Astrid

I just read up on trauma-related symptoms and was flooded with emotional flashbacks. An emotional flashback is where you are reminded of a past traumatic event but don’t remember it in visual detail. Rather, you feel the emotions associated with the event. You then respond in a usually maladaptive way that is associated with your trauma.

According to Pete Walker, there are four types of trauma responses related to emotional flashbacks: fight, flight, freeze and fawn. I have yet to read up on them all in Walker’s book Complex PTSD: From Surviving to Thriving, but I think I most relate to fight, followed by freeze and fawn. Interestingly, in this book, Walker also discusses specific combinations of responses, such as the fight-fawn hybrid (I think that would be me).

I feel sad, because Walker calls the fight response, which is my most common first reaction, “narcissistic” and on his website relates it to being spoiled. I have yet to read up in his book on whether this is the only trauma that can elicit a fight response, as I was not usually spoiled. Or was I?

When discussing my upbringing with the psychologist who gave me my autism diagnosis back in 2017, after another psychologist had taken it away, I mentioned my parents not letting me develop my independence skills. That is, when I tried to develop independence skills, I was often left to my own resources and not consciously taught. Then as soon as I got frustrated (which I reckon is a natural response), my parents gave up and would do stuff for me. The psychologist called this simultaneous over- and underestimation.

I was rather frustrated with the fact that I was seen as having been underestimated, as this didn’t resonate with my feeling of chornic overwhelm. Also, it somehow feels like it’s a character flaw on my part that I got let off the hook, whereas I consider other forms of bad parenting that I endured to be my parents’ responsibility. Really though, ultimately, it’s my responsibility to heal.

Linking up with RDP #83: Remember.

Dropping the Mask: Does It Take a Diagnosis? #TakeTheMaskOff

Posted on by Astrid

Today, the theme for #TakeTheMaskOff is diagnosis or self-discovery and its effects on masking. This is applied mostly to the experience of being autistic, but I can relate to it from a trauma survivor perspective too.

I haven’t yet read any of the other contributions for this week, but I assume the idea behind this challenge is that discovering you’re autistic, either through professional diagnosis or not, can help you drop a facade.

This is definitely true for me. When I was first diagnosed with autism in 2007, my staff claimed that I was using it as an excuse, because I reacted more to for example loud noises than I’d done before diagnosis. Similarly, my parents claimed that I was over-protected by the staff who felt I’m autistic and this led to my psychiatric hospitalization in November of that year.

To be honest, yes, I may’ve started to use autism more as an explanation for my behavior once I was diagnosed than I did pre-diagnosis. Note that I say “explanation”, not “excuse”. I don’t feel I need an excuse to act like myself, unless acting like myself were harming other people. Saying that we use autism as an excuse for our behavior is really saying that we should conform to non-autistic standards of behavior at any cost. Autism is an explanation for why I can’t conform to these standards, but even if I could, that doesn’t mean I should.

Then again, once my autism diagnosis was taken away in 2016, I did feel like I needed an excuse. And so did many other people. I was kicked out of autism communities that I’d been a valued part of for years. Suddenly, I’d been faking and manipulating and “acting autistic-like” all those years rather than just having been my autistic self. One Dutch autistic women’s forum’s members and admins were notorious for spinning all kinds of theories on why I’d been pretending to be autistic all those years and had finally been unmasked.

<PAnd at long last, I started to believe these people. I started to believe that self-diagnosis may be valid for other people, but it isn't for me. I started to wonder whether my parents were right after all that I'd been fooling every psychologist and psychiatrist before this one into believing I'm autistic.

This process of self-doubt and shame led to my first real episoede of depression. After all, if I’m not autistic, why did I burn out and land in a mental hospital? I’d been diagnosed with dependent personality disorder by the psychologist who removed my autism diagnosis, so were my parents right after all? I suddenly felt like I needed an excuse to act autistic-like, as if being autistic is indeed less than, not just different from being neurotypical.

I sought an independent second opinion and was rediagnosed with autism in May of 2017. I still am not cured of the idea that it takes a professional diagnosis to “excuse” a person from acting non-autistic. I don’t apply this to other people, but I do still apply it to myself and that’s hard.

I use this blog to counteract this self-stigmatizing attitude. This, after all, also applies to my status as a trauma survivor. I got my autism diagnosis back, but I never got and most likely never will get my trauma-related diagnoses back. I still mask, hiding my trauma-related symptoms when I can. And that’s not usually hepful in the long run.

How to Proceed in Our Mental Health Treatment

Posted on by Astrid

So we met with our nurse practitioner for dialectical behavior therapy again. This was our first session since I started considering dropping out. I am still unsure as to what I want, but I’m pretty sure that just working the manual in a very structured way isn’t working for me. I also wondered out loud how long this treatment is going to take and whether I think it’s worth it. With regards to this, my nurse practitioner explained that behavor change takes a long time because we learned our patterns from babyhood on.

We started discussing the “pieces”, as we call the alters when talking with our treatment team. My nurse practitioner said he wants to discuss this with the psychiatrist. I doubt much will come out of that, as the psychiatrist keeps the status quo as to whether we’re dissociative or not. She most likely believes we’re not, but wants to bring it diplomatically.

We went some into our original trauma, which involves my parents not having been given a choice as to whether I should be actively treated after my premature birth. They weren’t sure themselves and were told the doctors were keeping me alive and not to interfere or they’d lose parental rights.

My nurse practitioner also mentioned a book and movie about a person with multiple personalities (possibly Sybil). I am pretty sure my psychiatrist is going to stomp that association right out of him, as like I said, she probably doesn’t believe I’m dissociative.

After leaving the session, we were pretty unquiet. Katinka tried taking over from Clarissa, who usually does DBT, to get back into daily functioning mode. That was only partly successful. Our support coordinator arrived ten minutes after we got home and we were still pretty unquiet. We were able to calm down eventually and enjoy a walk.

In the evening, when our husband got home, we discussed the session with him and asked him to come to our next psychiatrist’s appointment on Tuesday. The original reason the psychiatrist had asked him to come is that she’d gotten the impression that we have relationship struggles. That upset my husband, of course. I finally managed to say that I want to discuss where to go from here regarding treatment.

There are several options. I could proceed as I have until now, which seems like the least productive option. I could stop going to therapy altogether or just stay with the team for med management and the ability to call someone when not feeling well. Or I could do more supportive therapy focusing on my emotional pain. This then could again be focused on several aspects of my life and it could or could not involve the “pieces”. I think that last option sounds best to me, but since it wouldn’t likely be based on a protocol such as DBT, I don’t think my psychiatrist would accept this. A fourth option, which I just realized when talking to someone on Facebook, is staying with my current team for med management and crisis support and going to another therapist for formal psychotherapy. I don’t think that’s a realistic otpion though.

She Walked Through Fire

Posted on by Astrid

She walked through fire but was not burned by it. Her body did not show a sign of the path she’d been traveling through the burning forest or her life. She did not feel pain. She had all feeling neatly folded away in the dirty laundry drawer in her mind. Over the years, walking through a little too many fires, she’d grown accustomed to not showing their effects. She was not burned – at least, not visibly so.

A few months ago, I read up on somatoform dissociation. It is where there’s a disconnect between your body and your mind and it shows itself physically, as opposed to psychologically. Psychological dissociation is a distortion in memory, sense of self or identity. Somatoform dissociation manifests itself in distortions to your physical experience. For example, you may not feel sensation in a particular body part for a while (not explained by the body part just having “fallen asleep”). Or you may have a strong aversion to a food or smell you normally like. You may even react differently to medications depending on your state of mind.

While it is unlikely that someone would not have physical burns from walking through an actual fire, the psychological equivalent describes perfectly what it is like to dissociate. In dissociation, you lock away the feelings or memories associated with a trauma into the unconscious. You walk through a psychological fire (experience a trauma) but don’t get burned – at least, not visibly so.

I once read in a women’s magazine about a person with dissociative identity disorder (DID). This woman’s doctor explained that everyone has a breaking point in life and this may be why people with DID may be able to hold it together for years after their early childhood trauma, but fall apart eventually. In other words, they lock away the pain and burns from walking through fire until a minor injury – hurting their index finger – tears open the horrible burn wounds. In my own case, I was fifteen when I first realized I dissociate, but 23 when I experienced this breaking point. I think the breaking point happened after I was attacked by a fellow patient on the resocialization unit of the psychiatric hospital. I wasn’t diagnosed with DID till more than a year later and that diagnosis has since been taken away, but the psychological burn wounds never disappeared.

This post is part of Reena’s Exploration Challenge #48.

#TakeTheMaskOff: My Experience of Masking

Posted on by Astrid

 

Two weeks ago, the #TakeTheMaskOff campaign for autism accetpance started. I posted an article for it on my main blog, but already then I was thinking of relaunching this blog, for which the original purpose was to be able to be completely honest about my experience. That is, after all, what taking the mask off means. As such, I thought that I’d share this article here too. Like I said, the campaign is aimed at acceptance for the autistic community, but it is also relevant to the trauma survivor community. After all, many people, including myself, mask the reality of their survivorship. So let me share.

 

Today, rather late, I found out about the #TakeTheMaskOff campaign designed to promote autism acceptance and awareness of the effects of masking. I really want to participate, so even though it’s incredibly hot here, I’m writing a post.

 

The campaign consists of six consecutive weekly themes about which participants blog, vlog or post on other social media. The first weekly theme is “What is masking?”

 

 

Masking, put simply, is pretending to be something you’re not. This can be done either consciously or unconsciously. Many autistic adults have learned to mask so well it’s almost second nature. We’re also encouraged to mask on a daily basis when people judge us about being autistic. Then when we mask successfully, we’re told we don’t look autistic.

 

 

For example, I’m often told that I don’t appear autistic. After all, when I hold a conversation, I appear pretty “normal”. I am told I can hold down a reciprocal conversation that doesn’t sound stereotyped or like I’m scripting. I ask people about their interests, for example. Now that it’s been extremely hot here for a few weeks already, I have even mastered some smalltalk about the weather.

 

 

This obviously (to me) does not mean I’m not autistic. Autism, despite what many people think, is not about social niceties. Autism is not the same as a lack of interest in others. Besides, I have 32 years of experience being told how selfish I am for not appearing to show an interest in others. So instead of showing a genuine interest in the people and topics I’m genuinely interested in, I learned to appear to be interested in whatever and whoever I am supposed to be interested in. In other words, I learned to mask my autistic curiosity.

 

 

For example, I was eleven when my mother told me I might be institutionalized if I didn’t become more age-appropriate. My having too many toys and dolls, according to her, contributed to my challenging behavior and I was to get rid of them. Instead, I was supposed to develop an interest in music. I wasn’t all that sophisticated at the time, so rather then developing a genuine-appearing interest in music, I hung Backstreet Boys posters on my wall.

 

 

Similarly, I was encouraged to wear jeans rather than sweatpants even though jeans were a sensory nightmare to me. It was assumed that I wore sweatpants because I didn’t care about my appearance – which is partly true – or because I, being blind, didn’t know that my peers were wearing jeans.

 

 

Masking can become so internalized, apparently natural, that you no longer notice you’re doing it. For instance, I wear jeans without a problem now.

 

 

It is easy to assume that, because the autistic person no longer notices that they’re masking, it must not be affecting them. This often leads to the assumption that, if someone doesn’t appear autistic and isn’t acting out, they must not be autistic after all. Then people go on to assume that, if said neurotypical-appearing person does act out, it must be “manipulativeness”.

 

 

I am, however, definitely masking when I wear jeans, or listen to my husband’s favorite radio station in the car, or engage in smalltalk about the weather or someone’s upcoming vacation. It isn’t always a negative thing, but it is still masking.

 

Good Mother Messages

Posted on by Astrid

I am currently working in the book The Emotionally Absent Mother by Jasmin Lee Cori. My first response to it was: why mothers? I was, after all, raised primarily by my father in my early years. Since my mother didn’t breastfeed me, I’m not even sure she was there much at all when I was an infant. Besides, I spent the first three months of my life in hospital, so didn’t have either parent as a primary caretaker then. As such, my main reason for downloading the book was to work through emotional hurts from my past regardless of which parent inflicted them on me.

In the first chapter, the author talks about “good enough” parenting. She goes on to list “good mother messages” children raised by good enough mothers received. Today, I want to share these and my thoughts on them.

1. I’m glad that you’re here. This message shows that as a child we’re wanted. It isn’t black-or-white though, since many children feel unwanted at times, but this message can be countered by a greater sense of being wanted. Some clear memories pop up into my mind now. The countless times my parents, mainly my mother, threatened to institutionalize me when I attended a school for the blind as a non-residential student from age nine to twelve. Also, when I was fourteen, I was rejected for a summer camp and had a meltdown. At some point, my parents were angry and so was I. I said they’d just as well put me in a children’s home, at which point my father said: “None wants you.”

2. I see you. This message is conveyed through our parents knowing what we’re interested in, how we feel about things, etc. I am not sure about this one. On a deep, emotional level I feel consistently unseen, but no clear memories pop up. My father was relatively tuned in to my interests.

3. You are special to me. The author points out here that this message needs to be paired with us being seen for who we are. Yes, so true. I was seen as special, a genius even, by my mother, but only for superficial achievements such as calendar calculation. I hated this.

4. I respect you. God, this one strikes a chord. The author explains that a parent who sends this message, allows the child to discover and express their unique self rather than having to conform to the parents’ blueprint for them. One particular memory comes up, which isn’t a traumatic memory but is a funny example of the larger scheme of things. When I thought I was a lesbian at age fifteen, I tried to figure out whether my parents would be open to this before coming out. My mother said: “I accept you as you are, even if you turn out to be a conservative.” Well, that said enough: she didn’t accept me as I am.

5. I love you. As the author says, some children hear this multiple times a day, while others go a lifetime without hearing these words. They also need to be felt as sincere. In my case, my mother would often say “I love you” when we’d just had an argument. She was physically affectionate, but it was usually in a ritualized way. Like, I was given a goodnight kiss each night until I was at least twelve. One memory in this respect, happened when I was around eleven. My parents required me to read a certain number of pages of a Braille book. If I didn’t finish them, I could go to bed but without a kiss or any affection. This is probably a relatively minor incident, but it is again a sign of how affection was used generally.

6. Your needs are important to me. You can turn to me for help. This one is a mixed bag. I was helped, yes, sometimes too much so, but I wasn’t taught how to do things on my own. Then once I turned eighteen, my parents expected me to be fully independent. My needs are currently definitely not important to my parents. As I sometimes half-jokingly say, they fed me for eighteen years and then they thought their job was done.

7. I am here for you. I will make time for you. See above. Until I was eighteen, my parents were a relatively consistent presence in my life. They never actually institutionalized me and they’re still together. Then when I turned eighteen, they said I had to take care of myself and more or less vanished. This was clear to me from an early age on, too. As my father at one point told me, a family is like a business, it has to be run efficiently.

8. I’ll keep you safe. I am not sure. This one feels odd on a deep, emotional level. One memory that pops up though, is my parents consistently blaming me for being the victim of bullying. My parents also were pretty much the opposite of helicopter parents. Like I said, they were hardly involved in my life past age eighteen. Not that I care much now, but it feels as though I was hardly protected by my parents. The author says that those who don’t receive this message, feel small and unable to explore the world. Yes!

9. You can rest in me. I’m not sure. I don’t understand this message really. It conveys feeling at home with your parents. Definitely not. However, I don’t feel like I can be at home with anyone.

10. I delight in you. This one is mostly conveyed in non-verbal ways, of which I’m not aware due to being blind. As a result, I’m not sure of this one.

Quote of the Day (July 28, 2018): No-One Makes Us Feel Inferior

Posted on by Astrid

“No one can make you feel inferior without your consent.”―- Eleanor Roosevelt

This is so beautiful! It pretty much says that you’re yourself responsible for your feelings. NO-one “makes” you feel anything. I won’t go as far as to say we choose our own feelings, but we have remarkable control over our thoughts and our thoughts influence our feelings.

If someone tries to make us feel inferior, it’s our choice to rise above it and see this as something about them, not us. Another person does not define us – we define ourselves.

That doesn’t mean it’s easy owning our feelings. We struggle with this a lot. We are often told we have an external locus of control and that’s probably partly true. In oter wrods, we look to other people or circumstances to “make” us feel good. That’s not how it works and I realize this.

Of course, being a trauma survivor, I do not need to blame myself for having post-traumatic symptoms. A mental illness is not a choice. On the other hand, it’s not my abusers’ or anyone’s responsibility to make me feel better either. In our case, most of the trauma we endured was not intended as abuse. That doesn’t change its effects, of course. It doesn’t mean we don’t suffer and we are allowed to hold the people who hurt us responsible for their actions. But not for our feelings.

This does not mean the trauma we endured is not an explanation for our symptoms. It is. However, it’s not an excuse to wallow in self-pity. Enduring trauma is not a choice. Having post-traumatic symptoms is not a choice. Recovery, however, is a choice.