Advice to Today’s High Schoolers

Posted on by Astrid

This week, one of the prompts over at Mama’s Losin’ It is to share advice you’d give today’s high school students. I cringed a lot at Mama Kat’s own post, as it was based on the idea that all high schoolers have parents who have their best interest in mind. I mean, I lied regularly as a teen. Though I wouldn’t advocate for that, it was all I could, because honesty led to harsh punishment.

I am not sure how much of my experiences was shaped by my neurotype, ie. being autistic. I mean, the main reasons I was ridiculed and punished harshly were because I was “weird”. However, there are lots of high schoolers who for whatever reason cannot follow Mama Kat’s advice, either because of their own situation or because of their parents.

For this reason, the main piece of advice I would give any high schooler is that it’s okay to be themselves no matter what. Whether your parents accept you, is something about them, not you. Do stand up for yourself if they are abusive or hurtful. You may be a minor, but that doesn’t mean your parents are all-powerful and all-knowing (especially that).

Also, seek out adult role models other than your parents. I felt helped a lot by being in contact with disabled adults. Even for neurotypical, non-disabled teens, it is useful to have people that inspire them other than their own parents.

Use social media, but of course use it wisely. There are spaces on social media for people just like you. Of course, I know most parents supervise their teens’ social media use and I think there is some good reason for that. Mine thankfully didn’t, but then again I was pretty careful not to engage in unsafe behavior online.

I do agree with Mama Kat that honesty is part of a good family dynamic. It has to come both ways though. As teens, it will help you to not give your parents reasons to snoop on your private life by being open about it. If your parents aren’t safe, seek out another adult to talk to.

What advice would you give current high school students?

Mama’s Losin’ It

A Time I Decided to Speak Up for Myself

Posted on by Astrid

The weather has cooled off some, but I’m still somehow lacking motivation to do much. For this reason, I scrolled aimlessly through some journaling prompt books I have in my Kindle app. In one of them, one of the prompts that caught my eye was to recall a time when you spoke up for yourself.

I am usually not one to speak up for myself easily. Especially not when the person I’m needing to advocate to is an authority figure. The memory I’m going to describe involves my last psychologist at the psychiatric hospital.

She was somehow convinced that I have dependent personality disorder. There are good reasons to think so, but her reasons were not among those. To put it bluntly, she thought I misused care.

More importantly than her diagnosis of DPD though was her removing my autism diagnosis that I’d had for nine years. She believed that I could not possibly be autistic because I had a brain bleed as an infant and that instead my diagnosis should be some form of brain injury. She ended up putting hydrocephalus (which I’d developed as a result of the brain bleed) on axis III of the DSM-IV classification and that apparently should suffice in explaining my difficulties. That plus, of course, DPD. Well, it didn’t.

Like I said, I have trouble sticking up for myself. This is indeed a DPD criterion. Honestly I don’t even care whether I might have DPD actually. I can see how I have some traits. But DPD is different from care misuse. And that’s what my psychologist was accusing me of.

So I finally decided to stand up for my rights and demand an independent second opinion. This was extremely hard and my psychologist had been successfully trying to talk me out of it before. Not this time though. In February of 2017, I had an appointment with a clinical neuropsychologist at Radboud university medical center in Nijmegen. Three months later, on my would-be discharge date from the mental hospital, I got my autism diagnosis back.

Autism, of course, doesn’t explain everything I experience. I might have DPD too. And God knows what else. But I don’t misuse care.

My psychologist, interestingly, claimed that I spoke up for myself really well. That’s a rather contradictory statement to the DPD diagnosis. After all, dependents are often seen as passive. I still wonder why she didn’t have the balls to “diagnose” me as a malingerer.

My Daily Routine (Or Lack Thereof)

Posted on by Astrid

And still it’s incredibly hot here! It did start to rain last night, but it’s not cooled down much in my room. It’s already past 9PM here and I don’t feel like writing. Or doing anything else. But I bet I cannot sleep either. Therefore, I blog.

Today’s #FDDA prompt is “your daily routine”. My daily what, I ask?

Unlike many other autistics, I am not one for clear routines. In the mental hospital, I would just lie around and do whatever, just like I see many people do now during the COVID-19 lockdown. I didn’t have a set time I’d go to bed or get up. I didn’t have a daily personal hygiene routine, as I hated most personal care tasks and there was no-one to say I needed to do them. Well, there was the staff, of course, but it was their view that I was responsible enough to decide these things for myself.

Once I lived with my husband, I did go to a day center each weekday morning. This meant I did have to get up at the same time each day. I did have an okay morning routine back then, as my husband had instilled the importance of personal care into me.

Then I went into long-term care. Pre-COVID, I still had somewhat of a routine, as I was expected to go to the day center each weekday (except for every other Friday). I tried to maintain such a routine when the day center closed, but I cannot seem to really.

Still, I have some set activities I do each day. I go for a walk in the morning and one in the afternoon too. We also have coffee, lunch and dinner at the same time each day. Now that it’s hot though, I don’t go for walks and often skip coffee break too.

These last few weeks, the days have truly been merging into each other like time didn’t really matter. I do still try to blog most days, usually around the same time.

Sometimes, I wish I had more of a strict daily routine. That’s not really possible though and I’m not sure it’s really what would be best for me.

What about you? Do you thrive on routine?

If I Could Have Any Pet

Posted on by Astrid

Today’s topic for Fandango’s Dog Days of August (#FDDA) is “pet”. One of the suggested topics is to talk about which animal you’d have if you could have any pet. I am going to use this topic as a starter for today’s blog entry.

As regular readers of my blog might know, my husband and I have a cat. We first got a cat, Harry, when we were first planning on living together in 2013. We’ve had Harry since kittenhood. However, he was pretty hyperactive, so we got Barry, thinking the two might make great playmates. Well, they didn’t, so we ultimately rehomed Harry. Now we still have Barry.

I always grew up with cats. The thing with them though is, they invariably seem to sense my inadequacy. Whether this is due to my blindness, I don’t know.

Regardless, cats aren’t quite as confortable with me as I’d like them to be. I still hope I will someday have a cat that will have a true liking for me, but that’s not in cats’ nature, I’m afraid. They’re more introverted than some other animals. Or maybe that’s just been the cats I’ve had so far.

All that to say that, if I could have any pet I wanted, I would like a dog. However, I’d for sure like it to be a psychiatric service dog as well as a trained guide dog. That seems a bit much, maybe, but I know some blind people whose guide dogs also help them with their mental health issues.

I may also want to have a pet rabbit or guinea pig. Rabbits generally need a lot of space, though my sister-in-law keeps three (if I’m correct) in her house. She does have a garden, so I hope they’re able to roam about there at times too.

In general though, I don’t think I’m that much of a pet person. I fed Barry dutifully when I still lived with my husband, and though I did take delight in it, I wouldn’t say he’s like my child or something. I’d love to develop more of a connection to Barry and to whichever future pets I might have. I do care deeply about them, but I just don’t feel the natural attunement to my pets that others do. I can’t say it’s an autistic thing, as a common autism stereotype (thanks, Temple Grandin) is that we have a strong connection to animals. I guess I for one don’t.

#IWSG: The Form Will Find Me?

Posted on by Astrid

IWSG

It’s the first Wednesday of the month and regular readers know what this means: it’s time for the Insecure Writer’s Support Group (#IWSG) posting day.

Well, let me say I’m pretty insecure indeed. I did pretty well on the blogging front this past month, but I always dream bigger than I actually live. I mean, I remember saying about four years ago that, within the next five years, I’d like to write my memoir and yet there’s not a single word down on the page. That plus I haven’t a clue where to start. Stories or pieces of non-fiction would flow so easily when I was younger. I have one work in progress that could’ve turned into a young adult novel if I’d just had the willpower to finish it. Not saying it’d be published – it certainly wouldn’t, as it’s rather unoriginal -, but well.

I keep remembering that Stephen King quote in DIY MFA about how you need to write 2000 words a day. I know, the author said this isn’t true, but I do need to write.

Thankfully, I do write. I got a premium subscription to Day One, a journaling app for iOS. Though I haven’t written in my journals everyday, I do find that the words come more easily already after a week of having it. As a result, I did write on my blog everyday for the past week. I really could use some guidance on how to transform my blogging practice into something more powerful.

Now on to the optional prompt question. It’s a quote that says that, although you may write in a certain genre, you don’t have to have that predetermined. Rather, the form or genre will find you once you write. I indeed must say I agree with this to some extent. Though I often set out to write in a specific form, my words don’t usually come out in that form eventually. Even if I do choose a genre in advance, my words often flow more easily when I let them rather than plan what I’m writing in advance.

A Trip to Berlin

Posted on by Astrid

Fandango has started a new challenge for the month of August and the prompt word for today is Trip. I’m going to write about a train trip my parents, sister and I took to Berlin in 2002.

At the time, you had this bargain called “schönes Wochenende” in Germany, which meant that for just €28, four people could travel all over Germany by train on a Saturday or Sunday. The only catch was that you had to take local railroads.

My parents, sister and I at the time lived in Apeldoorn, Netherlands, which isn’t too far from the German border. So we drove to Bad Bentheim to go on the train. The first train we took, drove us to Osnabrück. Then we took three more trains until we finally arrived at Berlin Hauptbahnhof. The last train we took, I remember, had Frankfurt an der Oder as its final destination. I found that fascinating.

I at the time had train routes as one of my autistic special interests. It was totally awesome learning all about the German local railroads.

The holiday in Berlin itself wasn’t a good experience. I had a lot of meltdowns and was pretty confused. I did like visiting a street called Straße des 17. Juni, because that year on 17 June I had first opened up about my distress that I’d suffered with for years. The street was named after a protest in east Berlin in 1953.

This was, actually, the last trip I took with my parents. The next year, I went to computer camp in Switzerland and the year after that, to blindness skills camp at the country’s training center for blind people. The year after that, I graduated from high school.

I feel pretty sad that I don’t have many memories about the trip to Berlin and the ones I do have, aren’t good. I guess trips rarely were enjoyable for me. That’s probably why I haven’t been on vacation with my husband in six years.

Something I Struggle With

Posted on by Astrid

A few weeks ago, Marquessa over at The Next Chapter started a writing challenge to get herself motivated to write everyday. Yesterday, I saw that Cyranny had joined in. Cyranny started with the first prompt. That one didn’t appeal to me, so I will go to the second. It is to share something you struggle with.

Regular readers may be able to guess what I’m going to share. It wasn’t the first thing that came to mind, but I got inspired by Marquessa’s post. She shared that she struggles with being called “pretty”. She then goes on to say that brains matter more to her than beauty. Well, I wouldn’t exactly say I’m the opposite, but I do struggle with being called “intelligent”.

As a child, I was often called intelligent. My parents loved bragging about my so-called genius. After I had an IQ test at age twelve, this became even worse. The IQ test, though not the first one administered to me, was the first one about which the assessor actually told my parents the exact IQ outcome. My performance IQ can’t be measured because I’m blind, but my verbal IQ was identified as being 154 on the Wechsler scale. This means I was supposedly within the highly gifted range.

As a preteen and early teen, I didn’t mind my parents bragging about this three-digit number as much. I was proud that, according to my mother, I had the same IQ as my father. Now the only time my father had an IQ test administered, he at least told me that was in the pub with a psychologist friend and he was rather drunk. I’m assuming his real IQ may be higher.

As I grew older though, my apparent high IQ more and more stood in the way of my being myself. It was frequently used by my parents and professionals to “prove” that I should be capable of solving my own problems in social situations. This got me interested in the concept of giftedness as asynchronous development. Later, I was diagnosed with autism. Still, my parents reasoned that I was just extremely intelligent.

The reason I struggle greatly with being called “intelligent” is the assumption that I am smart enough to solve non-intellectual problems. This may be so in most gifted people – I think I remember recent research disproves the theory of asynchronous development -, but it isn’t the case for me. Like I mentioned a few weeks ago, my emotional level is equivalent to someone approximately 18 months of age.

Last year, my IQ was used against me to deny me long-term care. I mean, due to my multiple disabilities and low emotional functioning level, I do best in a care setting normally catering towards severely intellectually disabled people. Because of my IQ though, I can’t get funding based on developmental disability. I am lucky that I’m blind in this respect, because I ultimately did get funding based on that.

Contrary to Marquessa, I do not struggle with compliments about my intelligence because I don’t agree with them. I mean, the IQ test I took at age twelve is rather outdated now and I scored much lower when I took another one in 2017. However, I still know I’m indeed intelligent. That being said, that’s not all I am. In the future, I’d like to be able to take pride in my intellectual abilities without them triggering the fear that I’ll need to be good at other things too.

A Year Ago

Posted on by Astrid

One of Mama Kat’s writing prompts for this week is to look back at a year ago. Where were you then? What has changed and what hasn’t? Let me share.

A year ago yesterday, I had my intake interview and tour of the care facility in Raalte. We visited the sensory day activities group and snoezelen® room, as well as the home selected for me. At the home at the time was a respite placement for a man I knew from the day center I went to at the time. He greeted me excitedly: “Astrid!” He then went on to babble “respite fun”, “Mommy and Daddy vacation”, etc. I was shown around two rooms, one this man’s room at the time and one another client’s room. I think that client got moved to another room when I came and I now have his room.

Even though I had been invited on a tour of the facility, I didn’t know for at least another month that I had actually been accepted. The reason was that the staff all had to agree they could provide me adequate support and care, given that my needs are in some ways very different from the other clients’. They, after all, all have severe to profound intellectual disability.

Now, a year on, I’m settled nicely into the care facility. I didn’t get to attend day activities at the group they’d shown me. Now though, and for at least another two months, we get day activities at the home.

I think also around a year ago today, my husband had first seen the house in Lobith we ended up buying. I ended up moving to the care facility in the same week we got the keys to our new house. As such, a year ago today, I still lived in the tiny village rental house with my husband.

As I look back, I keep praising God that this whole COVID-19 thing didn’t happen last year. Even though the day center I attended at the time is slowly opening its doors again, community support is still mostly phone-based. I am forever grateful I got my long-term care funding approved last year.

In other news, the weather is drastically different now from last year. Last year, all weather records were broken with temperatures rising to 40°C. Now we’re lucky to reach 20°C and have a few hours of no rain each day.

How is your life different now from last year?

Mama’s Losin’ It

Adult Separation Anxiety

Posted on by Astrid

One of the consultant’s comments in my emotional development assessment was that I have a lot of separation anxiety. The rest of my care plan is also full of how I’m afraid to be alone. A little over three years ago, my psychologist at the psych hospital said basically the same by diagnosing me with dependent personality disorder (DPD). Then, I vehemently disagreed. It wasn’t just out of anxiety that I needed lots of care, after all.

Another reason I was in denial of my separation anxiety/DPD, is the judgmental way in which my psychologist approached the matter. She felt I just needed a good kick in the behind and for this reason discharged me from the mental hospital almost with no after care.

Of course, that’s not the way to treat dependent personality disorder. Besides, one of the main features of DPD is not physical dependence, but unquestioning compliance, which I certainly don’t display. I don’t lack assertiveness at all.

I want to clarify here that, at least in my case, I’m not unwilling to be alone. I’m alone right now as I type this blog post. When I’m mentally well, I can be quite happy being alone, as long as I know there’s someone available if I need them.

It’s all too easy to judge people with adult separation anxiety disorder or DPD. Usually though, it’s much more helpful to approach them from an emotional development angle than from a character flaw angle. I again at least don’t want to ask for attention all the time. The things that I get help with from my staff, even though I can sometimes do them myself, I don’t ask for help with because I’m just lazy. In fact, it’s often easier to do some self-care tasks quickly by myself than to ask for help, but then the tasks don’t get done thoroughly.

I have for the majority of my life figured out how to care for myself alone. That’s because, despite all the independence training I got, no-one started with the very basics. Besides, like I said yesterday, I don’t usually distinguish between feelings of hunger, pain, etc. Isn’t it a bit odd then that you’d expect me to remember to do the day’s self-care tasks (which are many!) and actually do them all by myself?

I am so glad my current care facility isn’t as judgemental as my former psychologist was. My current staff don’t assume unwillingness, like she did. We may not find out soon yet what will turn out to have been the best approach. It will also probably depend on what measure of success you use for the outcome: independence, mental wellbeing, cost-effectiveness, etc.

Emotional Development

Posted on by Astrid

Last Tuesday, I discussed my care plan with my support coordinator. She needed to update it because the facility is going to apply for a higher care profile for me. Besides, it needed to be made current for my living in the facility rather than at home anyway.

My care plan is divided into several sections, including general health, diagnoses, intellectual, emotional and social functioning. The part about my intellectual functioning unfortunately still lists my IQ as measured 20 years ago. Since it according to the test dropped some 35 points between 1999 and 2017, I’ve wondered whether this is merely due to Flynn effect or something or I’m actually experiencing cognitive decline. Still, my IQ as measured in 2017 was above-average, so it doesn’t really matter for long-term care funding anyway.

In the part about my emotional functioning, I saw for the first time the results of the emotional development impression the consultant from the Center for Consultation and Expertise had written in 2018. This was a bit shocking to be honest. I knew I’m thought of as functioning at an emotional level equivalent of a toddler. It was difficult though reading that in several areas, i’m supposed to function at a level of less than 6 months. This wasn’t surprising though.

For instance, one area in which I function at a level of 0-6 months, is body awareness. The reason the consultant listed was my inability to make contact when overwhelmed. I would add to that my inability to distinguish different bodily sensations, such as hunger and pain. I tend to react to everything that’s physically overwhelming by acting in a self-stimulatory way. The consultant also listed my craving physical stimulation such as rocking as a reason for this.

I also apparently function at 0-6 months with respect to differentiation of emotions. In other words, I don’t do that. The consultant explained that I have a lot of distress and am hardly ever relaxed. While this is true, I’d like to add that I don’t generally distinguish between different strong emotions. Like, at all. Each strong emotion feels equally overwhelming to me, even strong “positive” emotions.

With respect to verbal communication, my level is 3-7 years. Because this scale was developed for people with intellectual disability, the highest level is 7-12 years and I in some ways expected to be qualified as functioning at that level. I do with respect to handling familiar tools, such as my computer. However, the consultant apparently recognized my less-than-great (understatement!) language comprehension.

It was rather interesting to read this assessment, even though of course the concept of mental age used here is a bit off to say the least.