#WeekendCoffeeShare for June 3, 2018

Welcome to this week’s #WeekendCoffeeShare. I’m a little late this week, as yesterday my husband and I spent most of the day at my in-laws and I didn’t have my computer or external keyboard for my phone with me, so I could barely type. So grab a cup of your favorite drink and sit with me as I write about this week. I’ll have a cup of green tea instead of coffee even though it isn’t terribly late here yet.

On Saturday last week, I finally went onto the scale again. I hadn’t weighed myself in a few weeks. As I feared, I had gained weight, but even more than I expected. I’d gained 2kg. I was so angry with myself. I mean, yes, we’d eaten pizza three evenings that week, but that couldn’t possibly explain such a huge weight gain. My husband tried to reassure me, saying I was probably constipated. This may be so, as the next day I’d gained another 800 grams. Tomorrow marks one year since the start of my weight loss journey and I’m afraid I will not reach my goal of having a BMI under 30. Then again, last January, I did reach this goal already and stayed at that weight all through early May.

On Sunday evening, the Center for Consultation and Expertise (CCE) coordinator E-mailed me and my support coordinator. As we’d had the meeting with her on the 15th of May, she’d planned on discussing my case on the following Monday but hadn’t realized this was a bank holiday. She had eventually discussed me with her colleague and had decided to ask a consultant to focus assessment on my needs and wishes rather than on a diagnosis. On Tuesday, she E-mailed us again to let us know she’d found a suitable consultant and we’d be contacted again to set an appointment for a first meeting.

My support coordinator had also inquired about getting long-term care funding for me. Whether this is possible, depends on whether my blindness is the primary reason for my care or my mental health or autism. If it’s blindness, I may get long-term care funding, whereas if it’s autism or mental illness, I definitely won’t. Long-term care funding would enable me to move to supported housing for the disabled or get more support while living with my husband.

On Thursday, I had my first session of dialectical behavior therapy (DBT) with my new nurse practitioner. DBT was originally developed for treating people with borderline personality disorder (BPD). It’s usually group therapy. Though I do have BPD traits, I’m also autistic, which means that group therapy would be hard for me. I therefore do the DBT individually. I had already started DBT with my community psychiatric nurse, who left recently. My nurse practitioner, who took over from her, proposed to start at the beginning of the therapy manual again. We only managed to work through the first page, which details the goals of DBT. There are four skills domains on which I’ll work: mindfulness, emotion regulation, interpersonal effectiveness and distress tolerance.

I also realized as I was talking to my nurse practtitioner how angry I still am at the psychologist from the institution who kicked me out almost with no after care last year. My nurse practitioner did the intake interview for this team with me last year and mentioned how he and the psychiatrist got a totally different impression of me than said psychologist had painted. The psychologist had diagnosed me with dependent personality disorder for claiming care I supposedly didn’t need. She removed my autism diagnosis. The nurse practitioner and psychiatrist saw pretty soon that I’m not dependent at all. Yes, I need a lot of support, but that’s due to my disabilities (including autism), not low self-esteem. In fact, I just realized how this psychologist had in fact broken my self-determination. I don’t feel safe to ask for help much now and am a lot more passive than I was when I had this dependency diagnosis. My nurse practitioner validated my feelings, in fact saying that the reason for the CCE involvement is in part the poor after care this psychologist had arranged for.

On Friday, I went adaptive horseback riding again. Angie, my horse, was scared of a car passing by and attempted to go on the run while I sat on her back. This was terrifying. Thankfully, I managed to keep seated on her back. She was quickly calmed down again, but I was shocked for a bit aftwards. So was the girl who held the horse. Thanfkully, the instructor always walks beside my horse because of my blindness, so the girl wasn’t on her own. I still had fun horseback riding.

I’ve yet to think of what I want for my birthday at the end of the month. I will have to look at sensory toy shops for inspiration. I’m also thinking of starting up the soap making craft again, so maybe I’ll ask for supplies for that.

What have you all been up to this past week?

My Favorite Place

I want to write, but once again I don’t know what about, so I looked through one of my collections of journaling prompts. One prompt that stood out to me was to finish the following thought: “My favorite place in the whole world is…”

As regular readers of this blog may know, I’m an inner wanderer. What this means is, I rarely if ever truly feel at home. The most safe I’ve ever felt was in the institution in Nijmegen but that, too, wasn’t home. I wasn’t supposed to stay there for life, after all.

I don’t even know whether the fact that I never feel at home anywhere – no, not even in my current home with my husband -, is a thing related to the physical place I am in. Of course, there are things my dream house has that this house doesn’t have – a bathtub, for example -, and of course there are many, many things I’d want close by that this tiny village doesn’t have. However, even in my dream house in my dream town, I’d probably still feel like something’s missing.

What was it in the institution that had me feel closest to home? It was, in part, the fact that I had support I could rely on, who saw me as I was. Then again, my husband sees me as I am too and tries to support me as much as he can when he’s home. Would I feel better if I had support nearby whenever he’s not home? Yes, I think so. But would that fill the void of never ever belonging anywhere? No.

This evening, I was sad because I don’t have a meaningful life. I mean, sure I go to day activities, but we barely do anything that has any sort of meaning beyond sensory stimulation there. That’s what the group is for, after all. My husband mentioned my blog, but I have little to write about. I have long let go of the illusion that I’ll ever have a real job, but I’d really like to make soap again. I know, I will never do it fully independently, and that’s sort of okay with me, but I haven’t done it in months at all. My husband said I could ask him to help me. Same for making smoothies or the like. That helps.

To conclude, I’d say my favorite place in the whole world is not a physical place. It’s a state of mind: that of being sort of content with my life.

#WeekendCoffeeShare for May 26, 2018

Today, I’m linking up with Ali’s #WeekendCoffeeShare. The idea behind #WeekendCoffeeShare is to catch up on how your week has been. It’s a good way to share how you’ve been doing without having to devote a separate blog post to everything you’re up to. So sit back and grab a cup of your favorite drink (it’s rather late for coffee here).

The week started off rather relaxed with Monday being a holiday because of it being the day after Pentecost. That being said, I don’t really like days off, as I tend to sleep away the day anyway and feel bored when I’m awake. I’d have rather gone to day activities.

When I came to day activities again on Tuesday, I was a little anxious. There’s a family day at the center next week. Originally, my mother-in-law would be attending, but given the fact that I’m being kicked out of this center anyway, I feel it’d be useless. Besides, I have an appointment with my psychiatric nurse practitioner for dialectical behavior therapy that afternoon. I just told a white lie by omission and said my appointment was the reason I and my mother-in-law won’t be there.

On Wednesday, I had an okay day. My home support coordinator came by. She’d visit me on Thursday too, as my regular home support worker couldn’t come. I may get another support worker in her place, as she has a rather heavy workload. My mother-in-law also took me on some errands.

I found out on Thursday that things might not be as hopeless on the day activities front as I thought them to be. My support coordinator had contacted a day activities farm about 25km from my house. Farming isn’t my ideal sort of day activities, but I’m willing to go take a look there. The coordinator for that place had referred her to another person for placement inquiries. This placement person said they have three other day activities places in that area, all roughly 20-25km from my home. This is quite a bit farther off than the 15km to my current day activities (which is already relatively far), so transportation may be an issue. However, I’m sure my support coordinator will find a solution to this. I’ll be going to visit all four places on June 11. There is the farm, which was said to be good for those seeking experience-based activities too, so you’re not necessarily required to work hard. Then there’s an industrial place (but the placement person said not to worry about pressure), an artsy place with a shop and a day center similar to the one I attend now.

I am feeling slightly optimistic about one of these places possibly being a good fit for me. I actually am thinking of mentioning my experience with soap and skin care product making in hopes that I can get the support to pick up that hobby again, either at the artsy place or the day center.

Yesterday I went to the adaptive riding school for horseback riding. Everyone in my class was more noisy than usual and I experienced a bit of overload. Nonetheless, I enjoyed riding my current horse, Angie.

Today, my husband and I went to my in-laws to spend the afternoon and part of the evening. My in-laws have a pretty large house in the countryside. They have horses there. I helped brush one of my mother-in-law’s horses, Remco. We also ate homemade pizza. One half of each of our pizzas had a cauliflower crust. I actually liked it better than the regular crust.

What have you been up to this past week?

Sensory Processing Issues: Touch

Today, I listened to a Dutch video about sensory processing and creating a sensory valuable environment for clients with challenging behavior due to sensory processing issues. As I may’ve shared, the Center for Consultation amd Expertise (CCE) coordinator asked whether I’d ever had a sensory integration assessment. I haven’t and figuring out my sensory needs by myself is really tough.

It doesn’t help that I have little memory of my sensory needs growing up. As you might know, my parens don’t believe I’m autistic, believing instead that I choose to misbehave out of a will to manipulate. As such, I cannot ask them (particularly my father) to provide insights into my sensory needs. As the video presenter didn’t say whether sensory needs can change over time, and I am unsure about my childhood, I do not know whether my needs are valid.

After finishing the video, I read The Realistic Autistic’s post on touch-based sensory processing issues. This was really insightful. I could relate to a lot of the issues Sarah, the post author, describes. For example, growing up, I do remember hating the seams in socks and possibly the tags in clothes too. Now that I’m an adult, I don’t experience this issue that much anymore.

Like Sarah, I also prefer deep pressure to light touch, but I don’t have a problem with light touch usually when I’m okay mood-wise. Unlike Sarah, I’m more sensitive to cold than to heat.

One particular aspect of touch that Sarah didn’t touch on (no pun intended), is the experience of tactile stimuli in the mouth. I seem to have a lot of issues with this and always have.

In some respects, I seek extra stimulation in this sense. As a child, I’d very often chew or suck on my clothes and, later, my hair. I still chew on my hair on occasion (though, having had a haircut a few weeks ago, I no longer can).

On the other hand, I hate the feel and taste of teeth-brushing, particularly with toothpaste. I couldn’t stand brushing my teeth with toothpaste until I was eighteen and even now, I want it over with quickly.

What I also notice is that, if I have control over the stimulus, I may seek out more stimuli or avoid them less than when others impose them on me. For instance, Sarah talked about the issue of having a haircut. I hate this. Interestingly though, hair-twirling is one of my main stims.

In the Dutch video, it was mentioned that between eleven and thirteen million stimuli get to our brains each second. Most are immediately filtered out, but roughly 4,000 are processed on some level. For this reason too, the presenter said eliminating all stimuli is not possible. I find that sometimes adding a stimulus will help me deal with overload. For example, I recently discovered some weighted stuffed animals at day activities. These provide a form of deep pressure that helps me feel calmer when overstimulated.

Keep Calm and Carry On Linking Sunday

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