Five Years

Today marks five years since our DID diagnosis got removed and changed to BPD. I’m not sure how to feel about it. I mean, that diagnosis was most likely incorrect but so is the BPD (which later got downgraded to BPD traits, which I do think we have but then again who doesn’t?). I mean, we rarely if ever experience amnesia and don’t go around disclosing ourselves when it’s not safe, but we do clearly exist as multiple identities.

Besides, the therapist who diagnosed us with DID at least took us more seriously than any before or after her (except for maybe our current psychiatrist, whom we just came out to three weeks ago). She didn’t allow us to be out with the nursing staff, which was okay’ish with us, but she did allow all of us to talk to her and didn’t try to fit us in a therapeutic box. The therapist who changed our diagnosis to BPD did, mislabeling Jane as a “punitive parent” and telling her to go away.

We at one point insisted on getting formal testing for DID. The therapist administered the SCID-D (a structured interview for diagnosing dissociation) to us but never finished the report. I wish she had even if it showed we’re fake. I mean, we have a right to information, don’t we? She also never responded to our E-mail, once our diagnosis was changed, asking her whether she’d ever suspected BPD in us.

I feel really odd now. I don’t know where we’re headed with regards to our mental health treatment. It’s all so scary. What if we’re really all imaginary? Since it’s unlikely we’ll ever be diagnosed with a dissociative disorder or get related trauma treatment again, will we ever learn to not exist?

A while back, someone asked in an FB group what happens to those misdiagnosed with DID after they get de-diagnosed. Whether their parts vanish. I don’t know really what I hope happens to us. I mean, we’ve tried to hide for a long time after our diagnosis got changed, but it was unsuccessful. We’ve tried to identify with the natural/endogenic multiple community before, since we felt not having a diagnosis meant we shouldn’t intrude upon the DID community. That was unsuccessful too. Does the fact that we can’t hide successfully for a long time mean we’re real after all, or does it mean I’m just terribly stubborn? I initially wrote “we” instead of “I”, but of course if we’re fake, we are not we anymore and never have been.

Dear Autism Parents: On Unconditional Acceptance

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.

An Eighth Grade Memory

I’ve been meaning to write a lot, but I can’t. I am having a lot of memories. That’s what they’re supposed to be. I already survived and am now safe and an adult, age 32, living with my husband. I don’t care, this pretty freakin’ hurts. One of my inner teens, Karin, hurts the most.

On November 17, 2000, I hid under a coat rack during recess. I don’t even know why. I mean, yes, I was feeling miserable and lonely. Kids in my class were bullying me and I had no friends. I was mainstreamed at the time, being the only blind student in my school.

My French teacher found me and called for the coordinator. My tutor had just gone on sick leave the day before and never returned to our school. The coordinator would act as my tutor from that point on. He sat across from me in the room where I’d been hiding under the coat rack. He held my hands and said: “Is something wrong?” I couldn’t communiicate. Not speak, not move, nothing. I was completely frozen.

Several months later, by the time my now tutor had become aware that I was feeling left out and lonely and being bullied by my classmates, he organized a class conference. Without me there. My classmates were allowed to say what they didn’t like about me. Then I was supposed to change those things. I was supposed to take better care of my personal hygiene and develop better social skills, so that I’d be less curt.

My tutor died in 2016. He cannot read this now, but my old tutor, the one who went on sick leave just before the coat rack thing, can. She found my Dutch website last year. Granted, it has my real name in the URL and this one doesn’t, but still. Maybe I shouldn’t write this, or publish this. But I want to. I want to get this off my chest.

I want to show that it’s not okay to blame a bullying victim for being bullied, even if the victim “elicits” it by acting weird. It’s good to teach a child about social skills and personal hygiene. I won’t deny that. It’s quite another thing to link that to bullying and say “You bring it onto yourself”. That’s what many people around me did say. That’s victim-blaming and it’s not okay.

Another thing I want to say is, if you wouldn’t subject a non-disabled student to something, chances are you shouldn’t subject your disabled students to it. Another boy in my class was being bullied too. My classmates asked for a class conference similar to the one held about me. The boy didn’t want it and this was respected. I was never even asked whether I wanted a class conference, because apparently, being blind, I was so special that I shouldn’t have a say. For clarity’s sake: I think class conferences like thsi one are an example of victim-blaming whether the bullied student agrees to them or not.

Remembering the Onset of My Temper Outbursts

I have been a member of groups on the topic of disruptive mood dysregulaiton 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 arund 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 expressng 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.

My Relationship with Food

Today, I’m paging through the eBook Journal Writing Prompts for Child Abuse Survivors. It is definitely worth it. One of the prompts, in the third chapter, which deals with shame, is about your relationship with food. I am going to write about that today.

I am fat. There I said it. I am no longer obese, fortunately, but I still need to lose over 20lbs to be at a healthy BMI. Besides, my body fat is concentrated primarily on my stomach, which means it’s all the more dangerous for my long-term physical health.

I have a long history of disordered eating. When I was around 14, I “wanted” to develop an eating disorder. No, I didn’t read pro-anorexia sites, though I probably would have had I had access to the Internet back then. I didn’t really want to have anorexia, but I wanted badly to overcome the painful relationship with food I had by this time, and my way of doing so was to develop an even more harmful attitude towards it.

The origin of this even more harmful attitude was probably shame. My parents would regularly yell at me for eating too much and I badly wanted to break this habit, but I didn’t knowhow.

I didn’t stop overeating, but I started obsessing over how it’d make me fat. I started keeping food logs and commenting on how much I’d eaten, but it didn’t help me actually stop overeating.

I remember at one time calculating my BMI, which was a little above 20 at the time. I thought that should soothe my mind and it did in a way. I wasn’t fat, after all. Looking back, I now realize said BMI calculator was geared towards adults and a BMI over 20 is in fact overweight for a teen.

I never developed a full-blown eating disorder, even though a part of me engaged in a lot of disordered eating patterns, including purging, up till fairly recently. In fact, this part of me – she’s called Agnes – was the one reasoning last Wednesday that diarrhea is a good thing because it helps me lose weight.

I’ve had a fairly normal relationship with food over the past year or so. At least in terms of behaviors. I no longer purge, rarely overeat and do exercise regularly. However, like I said above, my thought patterns are still pretty disordered.

Angry

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.

It Was the Summer of 2007

Today, for the first time in a long while, I’m linking up with Finish the Sentence Friday (yes, on a Sunday, but I wasn’t inspired on Friday). The prompt this week is “It was the summer of…”.

Last Wednesday marks eleven years since I started living independently in the city of Nijmegen, where I’d go to university. It was a Wednesday back then too. It was the summer of 2007. We’d had a heatwave in July, but as far as I remember, the weather wasn’t good in August.

On August 1, 2007, my parents drove the 40’ish miles from the independence training home in the city of Apeldoorn to Nijmegen with me. The car was packed full of my belongings. While the training home apartments were furnished, I still had some ofmy own furniture. Besides, my new apartment was only partly furnished.

I didn’t feel much on my way to Nijmegen. I was drugged up with the antipsychotic a psychiatrist had prescribed just a week before. I still find it rather weird that I’d started a new medication just a week before a majr transition, because how would we know whether it was working then?

When my parents had put together my new furniture, we went to the nearby Chinese takeaway. I had learned to cook in the independence training home, but I don’t think my parents trusted me enough to do it for them.

After finishing our food and putting the leftovers in the fridge for the next day, I crashed. I cried. I still find it painful to remember, as I was always taught not to cry. My mother saw me cry, whcih was terribly embarrassing. She didn’t comfort me. I was 21-years-old, after all, and no longer my parents’ responsibility.

Good Mother Messages

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.

Creating an Inside Beach

Hi hi, I am Milou. I am 8-years-old and I have blonde hair. Earlier today, Allie wrote about creating an inside beach in therapy. I want one too! I really want to go back to Vlieland to see the real beach, but the bigs say I can’t. So now Esther is helping me create an inside beach. She put up real beach sounds on the computer for me to listen to.

I hear the waves. They are the North Sea waves. I love swimming in the North Sea. The bigs say I can’t go in too far.

I see the sun. It’s evening now that I write this, so the sun is going down soon. I love seeing the sunset. The sun is bright orange.

I can feel the sand under my feet. I can play in the sand. I like to build jellyfish castles. Yeah, that’s real, I add dead jellyfish to my sand castles. The bigs laugh and say it’s yuck. I can also dig a hole in the sand.

The sun has been shining all day, so the breakwaters (that’s what I’m told they’re called in English) are hot. You can stomp your foot in them and leave a footprint. You can also write your name in them with a pointy object. Read me write “MILOU”.

Oh, this was such a fun activity! Like Allie said, we can always add more to our inside beach. I can come play here whenever I want. Nighty-nighty from Milou.