25 Goals

Several weeks ago, I wrote a post about the five most significant events in my first 25 years of life. This post was inspired by a prompt I’d found on Paperblanks, an app on my iPhone. Today, I’m sharing another post inspired by a prompt from there. The prompt asks me to write out 25 goals for the next 25 years of my life. Here goes.

1. Find suitable day activities. This is a relatively short-term goal, as, despite the fact that I’ve been doing pretty well, the staff haven’t made up their minds about me needing to leave my current place. I hope though that, if I can find a place that will accept me, I will be allowed ot stay there for several years at least.

2. Write my autobiography. I’d really like to someday write a memoir about my life. Originally, I intended to title it some variation of “Some former preemies will later go to university”. This is derived from a newspaper article in 2004 about active treatment for 24-weekers, which was controversial at the time (and still is here). That title doesn’t speak to me as much now. After all, I never completed university and the majority of my adult life would even so far not be covered if I focused on this.

3. Buy a house. This requires help from my husband. After all, alone, I will never be able to buy a house with my income. However, divorcing my husband won’t be on this list of goals, so I assume we’ll someday make this work.

4. Get a guide dog. I really hope to get a guide dog someday, as that’ll help me be more independent.

5. Travel to the United States. When I was around sixteen, I dreamt of going to the United States in my third year of college. I never got that far, but still, I’d love to see the U.S. someday.

6. Visit Ireland. My husband traveled to Ireland with his Dad when we’d been dating only for a short while. I’d love to see the country, eat at the high-quality vegan restaurant in Dublin my husband ate at and meet my friend carol anne, who lives in Ireland.

7. Stay at an all-inclusive resort. It doesn’t have to be at some tropical destination or suchlike. Basically, all I’d want is to be able to swim as much as I want and eat as much as I want. We considered going all-in in Germany this year, which would be good eough.

8. Visit Sweden and Norway. I am somehow drawn to these nordic countries. I don’t even know why.

9. Take some more distance learning college classes. I’d really love to pick up psychology again at Open University. I’d also love to study special education/pedagogy and/or social work, but unfortunately the OU doesn’t offer classes in that. Maybe I’ll take those at a for-profit distance learning college.

10. Take some in-person college classes. This is likely to take some years. After all, if you’re under 50, you cannot enroll in specific college classes at university campuses unless you already have a college degree.

11. Get to and keep at a healthy weight. This is again a shorter-tem goal, as I’ve resolved to be at a healthy BMI by 2020.

12. Explore alternative medicine. Maybe I’ll take some courses in that too, although I think I’m fine just reading up about it in books and online.

13. Graduate from treatment at my mental health team. This too is a shorter-term goal, as I have no intention of staying in mental health treatment for 25 years. This requires finishing dialectical behavior therapy and maybe some more therapies.

14. Find out how to best cope with my symptoms of sensory and cognitive overload. I really hope I can get that sensory integration assessment mentioned last week and find some tools to better cope with sensory issues.

15. Do some volunteering. I’d really love to someday have a volunteer job in for example social services.

16. Make some friends. I have no friends now other than my husband. This scares me sometimes and besides, it’s just lonely. I’d really love to develop some friendships that’ll last into my fifties and hopefully beyond.

17. Find a creative outlet that I can pursue by myself or find the right help for. I’m still currently interested in soap making, but who knows what else I’ll find?

18. Stay as healthy as can be. I really hope that by the time I’m 56, my health won’t have declined significantly yet.

19. Get more active. I really hope that, if we buy a house, my husband and I will move to a city or town where I can go about running errands by myself even without a guide dog.

20. Learn to cook independently again. I’d just so love to be able to cook a meal by myself.

21. Join a gym, yoga studio or other out-of-the-house exercise place. This may be a good way of making friends too.

22. Learn basic gardening. If we buy a house it’ll be sure to have a garden again. I love sitting in our current garden, but would also love to learn to work in it.

23. Keep up with technological advancements. By the time I’m 56, I hope I’m still not terribly behind on technology. Like, my parents at 69 and 63 just got their first smartphones, but they’re really awkward with them. I’m finding that I already lag behind in some respects, so I hope the gap doesn’t become unsurmountable.

24. Get to a point where I can genuinely say life is worth it. I don’t have to be over the moon happy, but I’d really love to overcome my depression.

25. Still be alive. Do I need to explain?

Confessions of a New Mummy

An Eventful Week

And again I didn’t write for an entire week. The past week was rather eventful and stressful. I have been distracting mmyself by going on Tumblr and attempting to start something up there. I’ve had one Tumblr account or another ever since 2008 but never quite understood how it works and still I really don’t. However, I’m enjoying the community of mental health users there.

The reason the week was stressful was because of a lot of emotion-evoking events. First, my grandma died Saturday night. This caused a lot of emotions in me, because my grandma was the only family member I had a good relationship with. Her funeral was yesterday and it was good to see a lot of aunts, uncles and cousins I rarely see at all. The funeral service was good. My sister spoke on behalf of the grandchildren. I couldn’t help but laugh at some of the stories she told.

Another emotional event was the orientation meeting with the coordinator from the Center for Consultation and Expertise (CCE) on my situation re day activities. In attendance were the CCE coordinator, my day activities and home support staff, my mother-in-law (who acts as my informal representative), the local authority social consultant, my psychiatric nurse practitioner and me. The coordinator does the first meeting. If she decides it’s necessary, she’ll involve one or more consultants who will help find solutions to the situation at hand.

As it turns out, my day activities staff were hardly open to any suggestions from the CCE coordinator that would allow me to stay at this center. They kept making excuses about my meltdonws (which I haven’t had in a while) causing seizures and aggressive outbursts in other clients. This never really happened. Besides, these other clients get seizures/outbursts from a lot of behavior that other fellow clients exhibit too. I myself witnessed this on Monday.

We discussed the reasons for my meltdowns. Sensory ovelroad, demands and stress often set me off. The CCE coordinator asked whether I’d ever had a sensory integration assessment. I haven’t. It was at one point suggested by another consultant but my then psychologist (the one who kicked me out of the institution last year) dismissed this. Same for the trauma therapy recommended by the CCE consultant when we had a consultation in 2010.

We also discussed my living situation. This had not been the direct reason for contacting the CCE, but now that we had them involved anyway, my home support coordinator suggested we discuss this too. It is really hard. I mean, I experience a lot of stress now that I live independently with my husband. I was open about the worsening of my depression, including suicidal thoughts. I don’t want to die though, so the CCE coordinator asked what I do want. I honestly don’t know. At one point, the CCE coordinator also asked me directly whether I’d have wanted to live independently had the psychologist not kicked me out of the institution. I said “No”. My home support coordinator talked about the possibility of me and my husband moving closer to supported housing. This may be very difficult bureaucratically, as psychiatric diagnoses (including autism) don’t qualify you for long-term care, but maybe the CCE can help us figure this out.

I have mixed feelings about the meeting. I am somewhat hopeful but also a little pessimistic. Since the day activities staff aren’t open to solutions that will allow me to stay there, we’re at the mercy of a possible other day activities center. I hope we can find one.

Friendly Fill-Ins #2

It’s been forever since I participated in the Friendly Fill-Ins hosted by 15andmeowing but today, I’m participating again. I love today’s questions. Here they are.


  1. I spend ______________ hours per day online.

  2. When I go online, I use my _________________.

  3. Mother’s Day __________________.

  4. I wish ______________________.

And here are my answers.
1. I spend around eight hours per day online, I think. Maybe even more. I spend most of my free time and some of my time at day activities online.

2. When I go online, I use my laptop usually. It’s an almost four-year-old Acer. For E-mail though, I usually use my iPhone SE, as E-mail programs tend not to work with my rather old version of my screen reader. I wish I could get a new laptop with a new version of the screen reader, but getting the screen reader covered by insurance is a bureaucratic hassle.

3. Mother’s Day… well I don’t care. I’m not a mother and my mother doesn’t do Mother’s Day (or any special occasions for that matter). As it is, my relationship is better with my mother-in-law than with my own mother. Last year for Mother’s Day, I made a small gift for my mother-in-law at day activities, but my current group doesn’t do this, presumably because the other clients don’t really understand.

4. I wish… well here I have to copy 15andmeowing’s response, since I too wish we didn’t have to say goodbye to our loved ones. My grandma, like I said on Thursday, is dying. Now that there’s no hope for her, however, I wish she is pain-free and passes peacefully.

What I’ve Been Up To Lately

I’ve been meaning to write a lot lately, but I didn’t. All that I started on were random ramblings that I didn’t finish. Today, I’m writing down these random ramblings in a kind of list, in hopes of finally finishing this post.

First, I had movement therpay on Tuesday. It was good in some ways but not good in a sense too. I dissociated a lot. Like the last time I had movement therapy, a part of me came out. This is good, in that it allowed me to express myself in a way I otherwise can’t. However, since my parts are not fully accepted by my mental health team, I’m not sure whether I’ll be taken out of movement therapy for it “not helping”.

Second, on Tuesday evening, my mother sent me and my sister a text message that she and my father were at my paternal grandma’s. She is being kept asleep for pain control and will soon die. This is terribly sad. I mean, yes, she’s 94 and in a lot of pain in addition to having long suffered significant cognitive decline. However, I cherish my grandma greatly. She was an official witness at my wedding in 2011. This was in th eearly stages of her cognitive decline, when she was still just able enough to fulfill this role. I am so glad I had her for this role, as I didn’t have the greatest relationship with my parents or sister at the time, so didn’t want to ask them.

Third, I started at yet another increased dose of citalopram last Monday. I told my psychiatrist on Friday what I’d written down here and she concluded that the medication is helping some but not enough, so she increased it to 40mg a day.

Fourth, yesterday I reached the recomended daily step goal of 10,000 steps despite the hot weather. This is only the second time since I bought my Fitbit activity tracker last February.

Fifth, I’ve been reading some good books lately. I finally finshed Angels with Dirty Faces by Casey Watson, a collection of five previously published mini eBooks. I may post a review soon. On Tuesday, I bought my first Kindle eBook. I wasn’t 100% sure whether it’d work with my screen reader, since it wasn’t mentioned explicitly that it would, but it did. It’s What Every Autistic Girl Wishes Her Parents Knew by the Autism Women’s Network. So far, I’m really enjoying this book.

Increase in My Antidepressant Dose: Is It Working?

Tomorrow, I will see my psychiatrist for a medication review. Last month, the dose of my citalopram, an SSRI antidepressant, was increased. Do I truly feel it helps?

When I started on the higher dose of citalopram, I had no idea what to expect. I’d originally been prescribed this medication in September of 2010 and had never had its effecacy evaluated. I seem to remember I was put on citalopram after the dose of my Abilify had been increased twice in a few months’ time and I was still very irritable. Abilify is an atypical antipsychotic commonly used for irritability and emotional dysregulation of all kinds. Citalopram is primarily used for depression and anxiety, but it can also help with emotional dysregulation, or so I seem to remember my psychiatrist having said.

Even before I started on my higher dose of citalopram, my mood started to lift a little, possibly because of anticipation. Once I started on the higher dose, my mood remained relatively good for a short time. Things were looking up in the day activities department, so that also helped.

One thing I have clearly been noticing, is that I’m more active. I have less need for sleep during the day. I am also a little more motivated and inspired to get things done. Though I obviously did’t complete the #AtoZChallenge, I did write far more regularly on this blog last month than i’d done in almost two years before.

Another positive that I’ve noticed is that I am more able to keep myself from engaging in self-destructive behavior. I do still have urges, but I’m more able to reach out for help first.

Though these are all very positive changes, I must say that if I’m truly honest, my depressed mood is still the same if not worse. Same for my irritability. I still experience this feeling as though a heavy weight is on my shoulders. I still get agitated very easily. I still experience suicidal thoughts.

Then again, these are most likely more symptoms of emotional regulation issues rather than major depression. Unfortunately, there’s no medication that targets these specifically. I won’t have my first appointment with my new treatment coordinator till the 17th, and I assume we won’t be diving back into dialetical behavior therapy right then. I try to use the skills I’m learning through self-help groups and apps, but it’s all rather hard.

Rays of Sunlight – April 2018

It’s been months since I last posted a list of things I’ve liked and loved, otherwise known as my Rays of Sunlight post. In fact, it’s been over a year, although I did post some positive posts more recently.

April 2018 was really a mixed bag. I’ve been struggling a lot, but there were also lots of positives. Today, I’m sharing these positives.

1. The beautiful weather. Today is a cloudy day, but last week, I was actually able to wear a skirt for the first time this year. It was over 25 degrees Celsius and sunny. I loved it!

2. My mood improving. I mentioned this in my gratitude post as part of the #AtoZChallenge already. Now that I’ve been on the increased dose of my antidepressant for over three weeks, I think I can sincerely say it’s helping some. I am not over the moon happy, but then again I didn’t believe I’d be. Instead, I feel calmer and a little more able to handle stressors such as my husband being home late from work. It’s still hard, but I’m less likely to engage in self-destructive behaviors. Yesterday, for example, hubby wasn’t home till 8:30PM and I felt quite stressed. However, instead of doing something self-destructive, I called the on-call nurse at the mental hospital.

3. Cuddling with my stuffed animals. I have five stuffed animals in our bed. Until recently, I didn’t know how to arrange them cofortably and still have space for myself and my husband to sleep. Now I seem to have figured it out. I love to cuddle with my stuffies just before going to sleep.

4. Nice wax melt scents. I rediscovered my wax melts on Wednesday. I don’t know which I have in my warmer right now, as I opened it when my husband was at work so couldn’t ask him to read the packaging. I love the scent though.

5. Beautiful music. Thanks to My Inner MishMash, I rediscovered Cara Dillon. She is an Irish singer and I just love her music. It’s so relaxing.

6. Kindle. On Saturday, I had a meltdown because Adobe Digial Editions, which I use for reading eBooks from Kobo, was once again crashing on an eBook I had just bought. I tried out Kindle with some free eBooks then. Amazon only accepts credit cards as payment, which I don’t have, but my husband has said I can use his if I can make Kindle work. With my version of JAWS, my main screen reader software, it isn’t working that well, but with NVDA, a free screen reader, it is. Kindle also works on the iPhone. I am loving the free children’s stories I downloaded. I may write a full review soon.

A Cornish Mum

The Five Most Significant Events

Oh my, why can’t I seem to write when I truly want to? I mean, I feel uninspired, but then again I have a lot of collections of writing prompts. I have at least three eBooks full of writing prompts, a few collections downloaded from the Internet and even an app on my phone. From this app, Paperblanks, comes the prompt I’m going to journal on today. The prompt asks me to name the five most significant events of the first 25 years of my life.

This is going to be really hard, as I’m supposed to name just five. The last nearly seven years do not count, so I cannot mention the day I finally left the psychiatric institution or even the day I got married. I am however more tempted to write on more recent events, whereas my childhood was important too. I just don’t remember it that well.

1. The day I came home from the NICU, September 29, 1986. The first one, hence, is going to be one I have zero memory of but that shaped me for the rest of my life. After all, if I’d not made it home from the hospital at three months of age, I may not have been alive or able to share my story today. I came home on my due date.

2. The day I started in special education, May 11, 1992. I had to leave Kindergarten at a mainstream school before the year was over. Till this day, I don’t know why. My parents claim that the reason I had to transfer to the school for the visually impaired is my need to learn Braille, which I didn’t get to learn until more than a year later. They also say my Kindergarten teacher wouldn’t be able to move to first grade with me and no other teacher could teach me. However, then why did I have to leave so suddenly? In my memory, I was ill shortly before leaving the mainstream school, but I don’t know what that has to do with it, if anything.

3. The day I started back in mainstream secondary education, August 25, 1999. This day is significant because it shows my ability to be determined. A lot of people say I’m not determined at all and give up way too easily, but I did complete the full six years of my level of secondary education even though I hated it. I don’t think my parents deserve all the credits for this.

4. The day I started in rehabilitation for my blindness, August 22, 2005. This day is significant because it symbolizes my self-direction. It was the first time I decided I wanted to work on my own goals rather than those set forth for me by my parents.

5. The day of my admission to the mental hospital, November 3, 2007. Do I really need to explain? This day symbolizes my ultimate break-away from my parents’ power over me. Even though those 9 1/2 years in the institution weren’t too productive, I don’t regret having agreed to be admitted at all.

DIY Daddy

Play

And I didn’t continue with the #AtoZChallenge after all. Now I could write my Q post today and just have enough time to get to Z on April 30, but I have no clue what to write about that starts with Q. Besides, I’d just be too behind. I will continue with random reflections whenever I can, but I’m tiref of sticking to the alphabet. At least, the challenge so far taught me that I can, in fact, write a blog post almost everyday.

A few minutes ago, I looked at the friendly fill-in questions for this week. I’m not inclined to join in with the thing in a traditional way. However one of the prompts stuck out to me. It was: “When I was a child, I loved to play ___”. Today, I’m going to write about the joys of playing as a child (and as an adult, too).

As regular readers know, I’m autistic. However, when I was a toddler, I wasn’t the type to line up my toys. In fact, at about age three, I had three PlayMobil figures called Pekel, Foet and Laren. No, these aren’t common Dutch names. The characters would just eat, drink and go to the toilet. Nothing too interesting but nothing too stereotypical either.

I also loved to play outside. I loved the swings in particular. When we were on vacation at the campsite, I’d also climb a tree. I wasn’t as adventurous as my sister, but I nonetheless enjoyed getting outdoors.

One other memory that stands out is my learning to rollerskate at aroudn age eight. My next door neighbor, who was the same age as me, used to teach me and my sister and a bunch of other girls (and a few boys). It was fun until I realized how I, being legally blind, wasn’t able to keep up. Once I was about twelve, I eventually learned to rollerblade too. That too didn’t last long, as my vision became too poor.

My sister and I would play with dolls too. I’d often make up the stories. Like, we were going on vacation to Suriname with the dolls, because, you know, my sister’s doll was brown. Though I showed some level of imagination – more so than my neurotypical sister -, I could be quite controlling. For example, I’d get upset whenever my sister said “said the doll” after a sentence that the doll supposedly said.

I continued to play with dolls and Barbie dolls until I was around fourteen. By the time I was thirteen and about to transfer to mainstream school, I decided I really needed to stop playing. However, I didn’t know what else to do. Once my computer and eventually the Internet took my interest, I hardly ever played anymore.

As an adult, I had a time when my inner child parts were particularly active and I’d even buy Barbie dolls for them. They however usually enjoy stuffed animals. I still sleep wth a bunch of stuffies on my bed.

Perseverance and Procrastination (Or Their Exact Opposites) #AtoZChallenge

Welcome to my belated letter P post in the #AtoZChallenge of random reflections. I was rather uninspired yesterday. I also wanted to spend my time upping my activity as tracked by my Fitbit, so that hopefully I’d reach my 10K steps a day – which I almost did. Today too, I wasn’t feeling very inspired. I didn’t know any words with the letter P to write on. Yes, “Preemie”, but I’ve shared my birth story a dozen times already. Or “Psych”, but I didn’t know what to write about then. My husband came up with two this evening that are rather fitting: “Perseverance” and “procrastination”.

I am both quite perseverant and a terrible procrastinator. How can this be? I guess because, though I tend to take frequent breaks in my activities, I almost always manage to carry on after all. This blog post is living proof of that.

Then again, this combination of perseverance and procrastination can also backfire, as I tend to have rather rigid rules about when I can and can’t keep up with some work. For example, if I haven’t posted on a blog for an entire month, I say I have to give up on the blog. This has gotten me to abandon and restart my Dutch blog at least half a dozen times within the past four years. Thankfully, I still manage to keep up with this English blog.

Like I said in my letter N post, I like my perseverance when I’m passionate about something. This perseverance however can backfire too, as I get too obsessed and then am left with lots of stuff and lots of money gone for my special interest when I lose interest again. For example, I probably spent 500 to 1000 euros (closer to 1000 probably) on cardmaking supplies in the year that I was obsessing over cardmaking in 2012. I want to think I didn’t spend as much on soaping supplies in 2016 and I want to think I’ll still pick up that craft. I’m so glad blogging, at least in my style, isn’t as expensive.

As I look back over my post though, I realize maybe here I described the exact opposite of perseverance and procrastination. After all, I jump head first into an interest without procrastination, but once I lose the interest, I don’t really persevere. Sometimes I do, but, except with blogging, I sooner or later always give up.

Over: The Part of My Life I Consider Truly Over #AtoZChallenge

Welcome to day 15 in the #AtoZChallenge. I typed yesterday’s post rather quickly, so that a typeo ended up in the post title. Sorry for that. Today’s letter is O and I have once again chosen a prompt from the 397 journal writing prompts and ideas eBook. It is “Over” and asks me to write about what time of my life I consider truly over.

Last November, I celebrated ten years since my psychiatric crisis that got me admitted to the hospital. I resolved to look to the future from then on and have a positive outlook on life. Indeed, it is unlikely that I will ever be admitted back into a psychiatric hospital even if I land in a similar crisis to the one that got me admitted in 2007. Psychiatry has changed, after all. As such, I consider my psychiatric hospital life truly over.

That being said, the memory is still too fresh to truly close the chapter. So I’ll have to look back at another time in my life that I consider truly and well over. This is my time in high school.

I graduated from high school in 2005. This is thirteen years ago this year. Though I still can’t say I never remember my high school days anymore, I do consider this time of my life really over. I mean, even if I end up in an institution again – which is possible, even if it’s unlikely -, I will never go back to high school. I graduated that, so I won’t have to.

This is also the most recent “success story” in my life. Yeah, I know, leaving a mental institution after 9 1/2 years is a greater accoplishment, but that’s not “normal” success. My parents show pride in my having graduated from high school. They don’t show pride in my living with my husband.

Because of this, my high school days also are symbolic for my obeying my parents’ wishes for me. I don’t do that now. Letting go of my high school years means letting go of the need to meet up to my parents’ expectations. They are not realistic and besides, I don’t live for my parents. I live for myself.