Seven Things I Wish My Unsupportive Parents Understood About Me

Posted on by Astrid

I just read BPD Bella’s post about ten things she wishes non-borderlines knew about her. I have only some BPD traits and couldn’t relate to everything she describes. However, this post inspired me to do my own list. I’m dedicating this list to my parents by sharing some things I wish they understood about me. For those who don’t know, my parents are particularly unsupportive of my disability experience.

1. I am not “just blind”. I know that many blind people like to minimize the impact of their disability, to prove that they’re competent adults, blindness and all. My mother at one point told me about one of my sister’s college friends, who is blind. She then remarked she wished every blind person had the same abilities. That’s not how it works. But guess what? Sighted people vary in their abilities and difficulties too.

2. My needs are valid. I wasn’t being “manipulative” when I threatened suicide in 2007 while living on my own. I was desperate. If I had really been able to cope, I would have. Similarly, I’m not being “manipulative” by trying to get into supported housing now. No, I’m not in a suicidal crisis on a daily basis anymore, like I was in 2007. However, I want to prevent it from getting that far.

3. If you want me to have a skill, teach me. This is too late, since my parents should’ve gotten this message when I was young. They expected me to be able to live fully independently right out of high school in 2005, though I didn’t have most daily living skills. I appreciate how hard it was for them to teach me growing up, but that’s no excuse to drop the ball.

4. A family is not a business. One of the reasons my parents didn’t teach me independence, was that it got in the way of them running their family efficiently. That’s not an excuse.

5. Not everything is my IQ. My parents are convinced that I am such a genius intellectually that I should be able to use it to overcome all of my difficulties (except maybe my social ineptness). Also, this genius IQ enables me to manipulate the world into believing what I want them to believe, which is apparently that I’m weak and dependent and need lots of care. (I am not trying to say needing lots of care makes a person weak and dependent.) No. I would’ve graduated university and gotten a job if I could.

6. Depression is real. Some professionals believe that my childhood irritability stems from depression. I’m not sure that’s entirely true, but it’s possible. I definitely suffer from depression on and off in adulthood. My parents instead say it’s an attemtp on my part to make other people feel miserable, presumably because I refuse to accept the fact that I’m blind. Well, going blind can be traumatic and is not something you “just need to accept”.
Besides, depression is an illness, not a weakness or choice. When depressed, I do make other people feel miserable, but it’s not because I want to.

7. I am an adult, I make my own life choices. In 2006, my parents threatened to abandon me over my wanting to delay university one year. In 2008, they showed up at my hospital ward to take me home with them, because they didn’t agree with the social worker’s plan for my follow-up care. I’m pretty sure that, if I go into supported housing, they’ll try to guilt trip me into not doing it. I couldn’t handle that in 2006. I could in 2008. I am pretty sure that, should they decide to abandon me for good this time, I’ll be able to handle it.

I see this list sounds rather accusatory towards my parents. It is. I don’t even intend for my parents to read it. I know that I’m past setting things straight with them. They won’t change. Besides, my childhood and early adulthood won’t change. I can change to an extent, but I doubt this will lead me closer to my parents. I don’t care.

Leaving the Path Paved for Me

Posted on by Astrid

Today’s Finish the Sentence Friday is a stream-of-conscious writing exercise on the prompt of “leave”. I have not been inspired to write much lately, not even snippets that aren’t “blog-worthy” but that I could’ve published here anyway. Yet this prompt immediately turned on a lightbulb in my head.

Yesterday, I made the decision to schedule an appointment with the care consultant for the agency I receive home support and day activities from. We’re going to discuss my options regarding going into supported housing. There I said it and now I’m hoping my parents never read this blog.

Nothing has been decided yet, except for the appointment with the care consultant having been set for October 4. It isn’t certain that I can get funding for supported housing. I’m not getting my hopes up too high, as there are huge budget cuts to long-term care for people with lifelong disabilities, which is the path I want to go. I could also go the community support route, where I could go into supported housing for the mentally ill temporarily. That most likely wouldn’t be of much benefit, as it’s heavily focused on “rehabilitation”.

However, assuming I can get into supported housing one way or the other, this will mean I’m leaving my husband. Not as in divorce, as living together is not required to be married here in the Netherlands and my husband has said he doesn’t want to leave me. In fact, he supports me every step of the way.

It also, however, means leaving my passing-for-non-disabled self behind. It means leaving the path paved for me by my parents (and my last institution psychologist). I’ll be a huge disappointment to them. I have been thinking of how to break the news to my parents. Thankfully, I can wait with that until the point, should it come, where I’m actually moving.

Since I scheduled the appointment yesterday, I’ve been flooded with memories. I told my support staff at day activities and that got me talking about the time I lived independently in 2007. At the time, I considered getting into supported housing too, but my support coordinator said I couldn’t be in their supported housing with my challenging behavior. This may be the case with my current agency’s supported housing too. That’s one advantage of independent living. After all, no matter how much I struggle in independent living, my husband won’t kick me out for needing too much care.

The Greatest Moment of My Life

Posted on by Astrid

Today’s Question of the Day on Pointless overthinking is about the greatest moment of our life so far. I already briefly shared it in the comments, but I want to expand on my answer.

The greatest moment of my life so far is the moment my now husband proposed to me. This was June 4, 2010. I was 23-years-old and struggling with the aftermath of a traumatic childhood unfolding itself to me. My dissociative symptoms had become too unbearable to hide and I was slowly beginning to trust my staff at the psychiatric hospital resocialization unit with my feelings. That day, my named nurse invited my then still boyfriend into a room with me and her to explain some of my symptoms.

After that, my boyfriend took me to the place we had first met each other on September 19, 2007. It was a bus stop near the university’s dentistry department that I’d gotten off the bus from my home that day in 2007. Now, they were working on the road there, so we couldn’t sit at the bus stop. Instead, we sat down in the grass and my boyfriend proposed to me. I at first thought he was joking so I replied: “So you think that’s cool then?” He said yes and went on to propose we get married on September 19, 2011. “Mind getting married on a Monday?”

We chose our wedding date based on the fact that it was exactly four years since we first met. Four, for us, is a code word for kissing, because of a kind of wordplay in Dutch.

A week later, my boyfriend asked whether I’d informed my parents yet that we were getting married. I hadn’t, still thinking he had been joking. As such, I never said an official “Yes” to his proposal. That must’ve felt terribly hurtful to him. I told my parents, sister and grandma that evening.

My family’s responses were not overly supportive. My sister said we were a bit young (I would be 25 and my husband 22). My parents said we should go live together first. This is not a requirement for married couples anymore here in the Netherlands. We wanted to marry each other for no other reason than to prove our love. My parents felt, as did some of my professionals, including the psychologist who kicked me out of the hospital to live with my husband, that love didn’t mean much if you don’t live together as a couple. Fine by me, you’re entitled to your opinion, but we’re entitled to ours.

PoCoLo

Dear Autism Parents: On Unconditional Acceptance

Posted on by Astrid

I just read an essay in What Every Autistic Girl Wishes Her Parents Knew and it touches home with me. In it, the author, Haley Moss, mainly describes how she feels parents need to ucnonditionally accept their autistic daughters. She particularly emphhasizes the need to support the girls’ special interests even if they’re not age-appropriate or girly. Boy, do I want to tell my parents this. It’s too late now, as I’m 32 and have half a lifetime of conditional love behind me already.

Moss herself too was encouraged to develop age- and gender-appropriate interests as a child. She recounts a fourth grade memory of being advised to trade her rare cards for Bratz dolls. I have no idea what they are, but I remember in fifth or sixth grade also being encouraged by my mother (in not so subtle ways) to trade my Barbie dolls for pop music CDs. After all, Barbie dolls may be girly but they’re not deemed appropirate for an eleven-year-old.

The negative effects of one such incident, like Moss experienced, can be undone by a greater occurrence of open acceptance of the autistic’s special interests. For example, Moss’ paretns eventually affirmed her interest in video games. In this respect, I felt generally okay about my interests in fifth and sixth grade, because, though my mother did not support my playing with Barbie dolls, my father did support my drawing maps.

As a general rule though, I have commonly felt only conditionally accepted by my parents. This is reflected in constant victim-blaming when I was bullied. They were at least somewhat consistent in that, in that at least my father spoke negatively about the intellectually disabled girl whom I bullied too. Of course, he set an example of ableism by doing this as much as my parents did by victim-blaming me.

When I went into college to major in applied psychology, I still got my parents’ reluctant approval. After all, though my major wasn’t that well-liked by them and my college wasn’t as prestigious as they had wanted for me, it still was college. Since having experienced my breakdown in 2007, it’s pretty clear my parents are not there for me anymore. That’s sad, but it’s true.

The saddest part about What Every Autistic Girl Wishes Her Parents Knew is, unfortunately, that those parents who most need to hear the messages in it, will not read it. My parents don’t even think I’m autistic despite my having been officially diagnosed half a dozen times. Other parents may’ve gotten the diagnosis but choose to join the likes of Autism Speaks and shout “You are not like my child!” at every autistic adult trying to educate them about acceptance. That’s so sad. However, if some parents are helped by this blog post or by the book in showing unconditional acceptance to their children, that’s already good.

Tuesday Ramble

Posted on by Astrid

I don’t really know what to feel. Today was, well, chaotic. It started out with me getting up at 7:10AM as usual, still tired as usual. My energy level usually rises during the day, but being on high doses of psychotropics still means I’m at least somewhat tired all the time.

At day activities, everyhing went okay. I did some table-based activities and went for a walk with one of the staff trying to learn the route around the building. Meanwhle, a lot was on my mind. Yesterday, the staff had been telling the new intern how one of the clients acquired his cognitive disability. This was such a sad tale. I mean, yes, it may not be ideal to be born with a severe intellectual disability, but at least then you don’t know better. This man, the staff said, probably doesn’t realize much of what his life was like before his brain injury.

Still, it made me sad. I, after all, do know about my life before my extreme autistic burn-out in 2007. I could reason that, since high school was hard for me too, I should be happy I no longer experience that level of pressure. And I am. But that part of me, the would-be-university-professor, is still there.

After lunch, I went home. I wasn’t even home for ten minutes when we had a massive power outage. I didn’t discover it at first, only noticing my Internet connection had gone. Then, I discovered that my computer was running on battery power, so I went to check the rest of the house to see if we still had power anywhere. That’s hard, being blind with light perception, as I’m not sure I trust my vision enough to check the lights but I tried to anyway., I eventually went to check some other electronic devices throughout the house. Then, I called my mother-in-law and texted my husband. My mother-in-law texted back that she couldn’t find any news about a power outage, but my husband called back to let me know the whole village was out of power. Later, we joked that I had somehow caused the power outage.

My mother-in-law came to pick me up, so that while at my in-laws’ home I could at least do something on the computer. Which reminds me of how dependent on electronics I am, especially when alone. Like, I hardly ever touch my phone while at day activities, but at home, practically the only thing I do involves my computer or phone.

In the evening, my father called me by accident. He never calls me and even when my paternal grandma was dying, all I got was a text message from my mother. As such, I immediately panicked, because why in the world would he suddenly want to call me? As it turned out, it was nothing.

Now I’m supposed to feel good, or at least okay, but I don’t. Oh well. No time for processing, as I’m off to bed in about fifteen minutes.

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.

Remembering the Onset of My Temper Outbursts

Posted on by Astrid

I have been a member of groups on the topic of disruptive mood dysregulation disorder (DMDD) for the past year or so. DMDD was introduced to the psychiatrist’s manual with DSM-5 in 2013. It is a condition in which a child or teen is irritable or angry most of the time and has severe temper outbursts on average at least three times a week for a period of at least twelve months. The diagnosis cannot be made in a child under six or a person over eighteen. This being the case, I’m not in these groups because I currently think I may have DMDD, but because I think I may’ve had it as a child.

According to my parents, I was just a little immature emotionally until the age of around seven. I switched schools, transferring from mainstream Kindergarten to a school for the visually impared, when I was nearly six in 1992. In 1993, I started to learn Braille. This is around the time my temper outbursts started. According to my parents, I wasn’t even regularly irritable up to that point. They describe me as a relaxed, cheerful child.

My own memories are hazy. Of course, I remember temper tantrums from before age seven, but what child doesn’t have those at times? Between the ages of seven and nine, my mood got worse and worse. I remember being suicidal at around the age of eight.

So was this DMDD? We will never know, as the diagnosis didn’t exist back in 1993. Was it, like my parents believe, a way of expressing my frustration with the fact that I was going blind? Was I being manipulative, also like my parents think? Trying to elicit care from my parents and professionals by acting out? Or was it a form of autistic burn-out? Had neurotypical developmental expectations overwhelmed my autistic brain?

Like I may’ve said, my parents don’t believe I’m autistic. They believe I have some traits, but not enough to impair my functioning or warrant a diagnosis. They say I’m just blind and of genius intelligence. And oh, the rest is just me trying to manipulate people for attention. They don’t seem to realize, then, that I, too, suffered from my irritability and anger outbursts.

Angry

Posted on by Astrid

Hiya everyone,
My name is Kelly. I am 10-years-old. I am so angry now. I wanna call my mother and shout at her and all that, but the grown-up people say I can’t. I am angry because my parents say I’m angry too easily when in fact it’s them who do stuff like tough love.

I mean my mother says “So you wanna go residential at Bartiméus?”. That’s the school for the blind we go to. So if I’m not being good she’s gonna send me away. She also throws out my toys cause she says I’m defiant because I have too many toys.

Oh and Mrs. B our low vision teacher doesn’t want me to do low vision anymore. Well I don’t care what people think.

I was typing up this memory thingy but then my Internet crashed and I lost the piece I’d written. I will try to share again.

One day a social worker comes by my house to talk to my parents. I dunno who wants it my parents or the social worker. My mother says the social worker had said I’m angry too easily and I need play therapy. I go there during biology class, which is the only interesting class in school. so it sucks. I gotta play with this grown-up man I don’t even know. I wanna flood the water tray and throw out the purple dolls in the dollhouse because ya know, dolls can’t be purple. I don’t know why but my parents take me out of this therpay after four sessions. So why the fuck did they put me into it? I mean I’m not supposed to magically snap out of my anger by four sessions of stupid play therapy am I?

I’m confused now. Yes I’m angry. My parents say I wanna make them miserable. I have stopped caring. They’re gonna put me in residential if I don’t stop playing with my toys anyway and yet I’m suppose to play with this grown-up during biology class. I’m so angry. I don’t know why, cannot write it in English or maybe not even in Dutch either. I’m just pissed off.