Monthly Archives: March 2014

That Was Unexpected #Theprompt

It’s time for the prompt over at Mum Turned Mom again, and this week’s prompt is: “That was unexpected.” My thought: well, what isn’t?

I have often been one to plan ahead, to make life seem predictable. I have another post in the w orks about my plans for the then future, now present, that didn’t come true. What I want to focus on now, however, is an unexpected occurrence that was positive: meeting my husband.

In Septembe rof 2007, I was strugglign greatly living on my own, feeling very alone. I wrote about this on a forum on which my now husband happened to be active back then too. He was looking to expand his circle of friends and sent me a private message asking to meet over coffee or tea somewhere in the city I lived in at the time. We first met in real life on September 19, 2007. It took over half a year from then before we were officially in a relationship, but that is beyodn the scope of htis post.

I used to believe in some western variety of karma. That is, when I was still badly depressed during the first few months in the psychiatric hospital, I believed my situation was some kind of punishment for my childhood behavior problems. I was almost completely oblivious to the guy visiting me roughly every other week, sometimes more often, and certainly didn’t realize he was in love with me. Isn’t it odd how the mind can play tricks on us during times of strong emotions or distress?


Three Wishes #Theprompt

I stumbled across #theprompt via Kizzy’s post for this week, which I came across through a blogging community on Facebook. This week’s prompt is: “If I had three wishes…”

Unlike Kizzy, I don’t think big when thinking of what wishes I’d like granted. In fact, this may be selfish, but the firist two I was able to think of, only directly impact me or my family, and the third, I had a hard tiem thinking of.

Wish 1: proper care and support for myself, so that I can live a fulfilling life and have my health and social care needs met. I know this sounds selfih, but I’ve for the last several years always said that, if I won the lottery, I’d spend the money mostly on hiring support staff. I could reframe my wish so that everyone gets the care and support they need, and this would be ideal, but honestly, the first thing that would come out of my mouth if a genie popped out of a bottle, would likely be to wish this for myself.

Wish 2: for my husband to get a great job. I initially wrote “his dream job” here, but I have no clue what that is and I think neither does he. I guess I’ll leave it up to the genie to figure that out.

Wish 3: for every Internet site, book and other media source to be completely accessible to everyone, including people with disabilities. I don’t mean that pictures need to be banned, because that would make media inaccessible to visual thinkers, but I would like to have a way to make them accessible to the blind. This would require technological advancements, but oh well, it isn’t my job to instruct the genie on how to make my wish come true, is it? 😉 That third wish was particularly hard to think of. I originally thought of wanting to see a little again, so this might come out of my mouth if a genie showed up, but since now writing this post, I have more time to think, I realize that what I truly miss is the ability to access visual media sources. Oh, I miss being able to see colors too, but I tried to think of something bigger that would impact other people too, and color detectors are already available, they’re just very expensive.

Okay, now I realize maybe I should’ve wished for wrld peace, an end to discrimination, and an end to poverty. As a teen, these would’ve come to mind quite quickly, I guess. I was involved in politics and not just out of self-centeredness – cause what impact did the war on Iraq have on me? Now that I’m an adult, I’m less idealistic and in a way more selfish, wishing mostly a good life for me and my husband. Oh well, maybe as a teen, if I had little time to make a wish, something more futile like a new laptop would come out of my mouth. 😉


If I Knew Then…

I don’t remember where I got it – maybe on a journaling site or in a forum game -, but the question was asked which time you’d travel back to if you could go back with all the knwoeldge you have now. This is an interesting question, as I’ve made quite a few mistakes in my life, or just things I would’ve done differently if I could go back.

Looking at the past seven years in my mental health journey alone, i’ve had a few regrets. The most obvious is of cours emy crisis in November of 2007. What would’ve happened if that hadn’t occurred and I hadn’t been hospitalized? Would I by now be living in a supported housing accommodation, which I was after all being considered for the waiting list for? Would I have had a university degree by now? Most likely not. Besides, the knowledge I have now could not have prevented this crisis. It wasn’t that I could think more than a few hours ahead, so knowing that my crisis would lead to long-term institutionalization, would not have helped. The thing about crises is that people in them can’t oversee the long-term consequences of their actions.

Once I was in the hospital, however, several possible long-term living solutions came by. One was a tiny accommodation in the middle of nowhere which I reected because of its rural location and because the intake people treated me like a freak. Both were irrational argumnts, but with my current knowledge, I wouldn’t go back and get in there, cause what I didn’t know then and do know now, is that the accommodation want bankrupt one or two years later.

Then came the organization my elementary school friend recommended in late 2008. It’s currently quite an established supported housing organization here in the province, but back then, it was relatively new. I had an introductory meeting and was advised to go to an accommodation in a town three hours by public transportation from where my husband lived at the time. I was sent some paperwork, including a list of patronizing house rules and the report from the introductory meeting. The report said that I’d had a psychotic break, and got a few other facts about me wrong. I didn’t want to go to the town far away from my husband, but did for a while consider going t o the accommodation that happens to be in the next or second next town from my current institttion and my husband.

I was at a meeting for autistics yesterday, and this organization was mentioned again. They have an accommodation for autistics in the nearest big city, which obviously they didn’t have back in 2008. They also now have two accomodatioons in that next or second next town. I am now considering asking to have an introductory meeting and possibly intake interview for one of these accommodations again. The accommodation for autistics doesn’t provide 24-hour care, but the two accommodations in the nearby town do.

To get back to the question of going back in time with current knowledge, I would likely go back there to 2008. Back then, I thought I could cope with part-time support, ie. living in an accommodation that had support available only at certain hours of the day. I found the organization too restrictive, but I realize now I need a somewhat restrictive environment Maybe I didn’t if I’d left the institution right in 2008. I’m now kind of afraid that these accommodations will not provide the support I need, but then again, I can only find out by asking.

I Am Astrid’s Functioning Label

Back in 2008, Bev over at Square 8 wrote a post entitled I Am Joe’s Functioning Label. The post struck a chord with me right the first time I read it, and, over the years, it has become more relevant. For those who don’t want to hop over to read the post, it’s about what the label “high-functioning” is perceived to say about an autistic person, and how this impacts the way autistics are treated.

For clartiy’s sake: I am not saying that people with an intellectual disability have it easy. The cuts to care and the accompanying independence doctrine affect them too. What I do mean is that it is often easier to understand why a person with an intellectual disability needs care than if you have a high IQ.

It is often presumed that a person who can do a cognitively challenging task like operate a computer, can also do more basic tasks like brush their teeth. In reality, these skills have nothing to do with each other. Another assumption is that people who know how to perform a task and/or why it’s necessary, can also perform that task. I remember even years before Bev’s post reading on about a woman who was getting ulcers beecause social services presumed that if she knew about hygiene, she must be albe to wash herself.

There are many more assumptions about people labeled high-functioning. Here are a few that are affecting my life.

  1. Because of my functioning label, I am presumed to be safe in traffic. Since starting to learn a tiny route around the building, I am not only allowed to leave the ward alone without any purpose, but am expected to leave the ward if I’m angry.

  2. Because of my functioning label, I am presumed to be able to take care of my personal hygiene without reminders or help. This is in a way somehting I don’t want to change, because the reason I’m not able to perform some skills of personal care is because of sensory issues.

  3. Because of my functioning label, I am presumed to know how to solve problems myself even when anxious or overloaded (my fuctioning label dictates that overload is just an excuse to avoid demands). I am presumed to be able to make my needs known in very specific terms.

  4. Because of my functioning label, I am thought to be able to perform practical skills like making a bed or pouring coffee myself. Ironically, the motor deficits which cause me to be unable to perform these tass, were originally thought to be especially common in Asperger’s Syndrome.

  5. Because of my functioning label, I apparently don’t need a lot of structure. This means I am presumed to be able ot schedule activities without help.

  6. If I get overloaded, my functioning label dictates that it was my own choice and I’m depriving other people of the right to make noise.

  7. If I have a meltdown because my routine is interrupted, again, my functioning label dictates that I’m just spoiled and trying to always get my way.

  8. Because of my functioning label, I am presumed not to engage in aggressive or self-injurious behavior. If I do, it’s obviously because of BPD-related attention-seeking.

Yes, I see that a lot of these assumptions are not just based on my functioning label, but also on my co-occurring diagnosis of BPD. Before I had this diagnosis, not only was I not presumed to be unwilling to act normally, but my autism was presumed not to be as mild as it is now. Hence, an additional diagnosis makes it seem as though I’m less severely affected. Isn’t that ironic? By the way, if instead of Asperger’s and BPD, my diagnosis had been multiple complex developmental disorder (McDD), which is characterized by practically the same symptoms, I would likely have been seen as quite severely autistic.

Making Your Disabled Child Do Chores

A few days ago, the author of Brielle and Me had a post up about making your disabled child do chores I was never really expected to do chores. This was partly because my parents didn’t know how to teach me and felt the household would be running much smo other if they did thigns themselves. In this sense, they were lucky that my sister was always veyr independent, but even then, isn’t a chore always over quicker if you do it yourslef rather than have a child do it?

Some children are severely disabled, and it’s often hard to think of what they can do, keeping non-disabled standards in mind. Let me say to this that your child doesn’t need to become like non-disabled children, but they do need to grow in their independence. You can break a skill down into parts. For example, my chore in the institution is to make coffee, but I get someone else to fill the water reserve because it’s too heavy and high for me to work.

One of the reasons you need to make a disabled child do chores, is to give them a sense of pride and self-worth. I have experienced that chores for this purpose need not to be too difficult. For example, I was told when I first came to this institution that I needed to make my own bread, and self-worth was used as an argument. However, I don’t have the fine motor skills to do this and was constantly failing. While failure is part of life, constant failre will only make a child anxious and avoidant. I therefore recommend starting with a chore the child can already do, and introducing more difficult chores later on.

One thing I want to share though: don’t use long0term, vague consequences as threats to make your child do a chore. My staff at first told me stuff like: “You really won’t live with you rhusband if you can’t make your own bread, so go make it now.” That only got me to feel depressed and like I had no hope. For a child with disabilities, even though you as parents need to start planning for their future early, you’re setting them up for despair if you use your plans for their future as an argument why they need to do chores now. For example, I knew early on that I needed to leave the house at eighteen, but this scared the crap out of me because I had no clue how I was going to achieve this. I was as young as nine. Remember: children don’t ave the brains to plan for the distant future, so don’t bother them with it.

Sarah McQuaid in Concert at Peter and Lenie’s, Steendam, Netherlands

I was at my parents’ for the week-end. When I called them last week Monday to say I wanted to come over, my parents invited me right the same week so I could see Sarah McQuaid in Steendam, a town in the province of Groningen in the Netherlands, on Friday. I had heard some of Sarah’s music, but had never attended a concert.

We drove from my parents’ town to Steendam, on our way picking up one of my parents’ friends. We arrived a little early at Peter and Lenie’s, the restaurant where the concert was taking place. We got seated and Sarah arrived. Peter introduced her and Sarah welcomed the audience, specifically mentioning my parents. As I was looking at her website, I found out my father had taken many pictures at previous concerts, and he was photographing again.

Sarah McQuaid Playing the Shruti Box
Sarah McQuaid playing the shruti box. Photo credit: Frans van Woerkom.

Sarah McQuaid sings mostly folk songs and songs in this style she’s written herself. I was impressed at her interpretation of traditionals, one of which dates from the thirteenth century. If I remember correctly, this was the song she played on the shruti box, an Indian instrument similar to a harmonium (see picture above). I also particularly liked one of her songs, In Derby Catherdral, in which she was singing in a loop. Martin Stansbury should be honored here too, as he was working the loop on his laptop. The video below shows Sarah singing this song at a concert in 2011.

I am quite a concert novice and had at first thought I’d like a studio album better than a live performance, but I was wrong. One of the good thigns about a live performance is interaction with the audience. I laughed at Sarah’s attempt at speaking some Dutch, obviously some from a phrase book. This being folk, the audience was also encouraged to sing along. One of the songs is called “Perhaps” or its Spanish equivalent “Quizá”, and some of the audience sang the Dutch “Misschien”. This wasn’t spontaneous of course, but it was fun,

Sarah will be touring the Netherlands, Belgium and Germany until April 6. Check her website for details. She has already announced she’ll be back at Peter and Lenie’s next year.


For my birthday in 2012, I got a blender from my parents. I wanted one, because I wanted to make smoothies. Well, I did this a number of times during the summer (my birthday is in June) and then gave up. Until last Friday that is, when the idea popped into my head again. I bought some ingredients and on Saturday, made quite a delicious smoothie. Well, a nurse ended up doing most of the work, even the things I could do myself. Then yesterday, I made another smoothie myself. Both of these recipes are really easy. I noticed most people say prep time is only five minutes for smoothies, but I took a bit longer.

Banan-orange-kiwifruit smoothie

Prep time: 10 minutes
Cook time: 0 minutes
Servings: 2

  • 1 banana

  • 2 kiwi fruits

  • 1/2 orange

  • 1 cup milk

  • 1 cup yoghurt

Throw all ingredients into the blender and blend till smooth.

Pear-kiwifruit smoothie with fresh mint

Prep time: 10 minutes
Cook time: 0 minutes
Servings: 2

  • 2 kiwi fruits

  • 2 pears

  • A bit of fresh mint (I used only 3 leaves)

  • 1 cup milk

  • 1 cup yoghurt

Again, put everything into the blender and blend till smooth.

Being that I still have a lot of fresh mint left, I think I’m going to make tea out of this. Speaking of which, the idea of making my own herbal teas popped into my mind. I haven’t tried this yet, but when I have, will sure share a recipe.