My Favorite Holiday

Posted on by Astrid

Carol anne’s most recent question of the day is about holidays. She asks us what our favorite holiday tradition is. She herself loves Christmas for its presents. My favorite holiday is also in December and we also celebrate it with presents. Today, I am going to share about that.

First of all, we’re not one for holidays. We don’t like the adjustment and lack of structure. However, we love getting presents. As such, our favorite holiday is Santa Clause. It’s celebrated here in the Netherlands on December 5.

Santa Clause is in many ways similar to Christmas in the United States. It is celebrated on December 5 in honor of St. Nicholas’ birthday. In reality, St. Nicholas, who isn’t a real saint in the Catholic church anymore, died on December 6.

Santa Clause is celebrated with lots of presents, which the Santa is said to deliver through the chimney. they are usually packaged in a surprising kind of way and it’s a tradition that Santa Clause leaves a poem for the children. These poems are intended to be a bit moralistic, telling the child what they need to learn next year to be a better child.

There is also a lot of candy that’s specific to St. Nicholas. I love most of these candies!

As young children, we of course believe that Santa Clause is real. I was about eight when I learned that he isn’t. One of my fondest childhood memories is of my father playing Santa Clause’s helper Black Peter being stuck in the chimney.

I obviously no longer believe in Santa Clause, though I’m not sure what the littles will think if I say this. As an older child, after I’d stopped believing, I found it very hard to play along with the game. Now though, I’m enjoying it. Most of my fellow clients at day activities believe in Santa Clause, which makes the holiday extra magical for me too.

Phone Appt With Our Psychiatrist

Posted on by Astrid

Like I said last week, we’d have a phone check-in with our psychiatrist on Tuesday. We called the team’s secretary fifteen minutes after the psychiatrist was due to call us. Normally we wouldn’t be so impatient, but we were at day activities and didn’t have our phone with us all the time. The secretary put us through to the psychiatrist.

The phone appt was better than some of us had expected. That was mostly due to the fact that the psychiatrist didn’t berate us for trying to get into supported housing. She didn’t comment on it at all, which confuses us a little.

The psychiatrist talked about her proposal in early October to get us on the waiting list for a trauma/dissociation assessment. This had given us a lot of stress. Some of us want it, because they feel it’ll enable us to get trauma-informed therapy. Most of us are scared though. Some of us don’t even believe we’re dissociative. Some of us do, but don’t think anyone will believe us. In short, most of us would only want the assessment if we knew it’d validate us. That’s unlikely though.

The psychiatrist also talked about our E-mail to our nurse practitioner. We had written to him that we’re unsure whether we want to continue with our DBT skills training, because we fear we’ll need to make ourselves look better than we are. I’m not even sure what whoever wrote that E-mail meant by it, but I know change is scary.

The psychiatrist now proposed to give us a “break” from treatment. This’d mean our GP would handle our medications and we’d basically be discharged from the mental health team. We could still get some sessions with our nurse practitioner to help us create a good crisis prevention plan for our support staff.

Many of us have all sorts of mixed feelings about this. Some feel relief, while others feel fear. Some cling to the wish for a trauma-informed therapist. Particularly the littles wish to be validated. I don’t know though whether that needs to be by a trauma therapist. They have so far felt most validated by our intellectual disability agency staff, after all.

Mother As Source

Posted on by Astrid

I was finally able to read The Emotionally Absent Mother again, since transferring it from my computer to my iPhone. Until I did this, I was unable to read any of my EPUB eBooks, because the program I used for it was no longer supported by my screen reader. I missed reading this book in particular, since it had a lot of eye-opening questions in it. I last wrote about it last August, when I shared about good enough mother messages. Now, I am moving on in the book and starting with the roles good enough mothers have. The first one is mother as source.

This section starts with the assertion that mother is what we’re made of. It goes on to assert that, both literally and on a more spiritual level, we come from mother. Literally, we come out of her womb. Spiritually, nature is often seen as coming from the ocean, which is in mythology seen as a mother goddess.

This whole assertion seems a bit off to me. Like I said in my post last August, I was raised primarily by my father as a child. Obviously, I came from my mother’s womb, but this is hard to imagine.

One of the thought-provoking questions in this section is to imagine yourself in your mother’s womb. If you can’t imagine this, you are encouraged to imagine being engulfed by her energy. This gave me uneasy feelings. I have never felt able to see that I come from my mother. In fact, my parents used to joke that the neonatologist brought me into the world, not my mother.

Good enough mother-sources are able to create a positive and welcoming environment for their children with their presence. They make the child feel proud to be of her. As such, the next question in the book is whether you wanted to be similar to your mother or as different as possible (or anything in between). If someone were to say you’re so like your mother, would you be proud?

I have to clarify here that my mother herself didn’t and still doesn’t have the healthiest self-esteem. She used to say, and it came across only half jokingly, that I inherited all my bad characteristics from her and all the good ones from my father. As untrue as this is, I didn’t grow up feeling proud to be like my mother, because she didn’t convey that she had any characteristics to be proud of.

With respect to my father, who primarily raised me, I wanted to be like him as much as possible. Until I was an adolescent, I saw my father as the ultimate embodiment of success and every other positive quality. Then I started realizing that he too has his flaws. I now feel more closely related to my mother than to him.

The next question is whether you can imagine being proud to be of your mother. Do you identify yourself in relation to her? My short answer to this is “No”. I identify myself more in relation to my mother-in-law than my own mother.

In short, I do not feel my mother was able to be a good enough source. Of course, physically she wasn’t, by no fault of her own. By this I mean that all her pregnancies were complicated and the one with me ended in my premature birth. I don’t want to say that somehow she rejected me, because I know she didn’t. Once I was born, in fact, I was more unconditionally – or should I say less conditionally? – welcomed by her than by my father.

Of course, the stress of having had four pregnancy losses prior to being pregnant with me, could’ve caused her body to be less welcoming to a fetus. That, however, and I want to be very clear about this, isn’t her fault, or anyone’s fault. There is nothing my mother did to cause my premature birth!

Blogging on My iPhone

Posted on by Astrid

Man, it’s been so long since I last wrote! I really want to write, but I don’t know what about. I’ve been starting and restarting this blog post a few times. I write it on my iPhone to see if I can get the WordPress app working properly. So far, it seems to work really well. That doesn’t get me out of writer’s block though. 🤣

My husband said on Monday that he believes I’ll buy one more laptop before doing everything on my phone. He says smartphones are the future, so he recommended I try to do most of my work on my iPhone. Over the past few days, I’ve been trying to do this. Not just to satisfy my husband, but also because my rather outdated version of the screen reader on my laptop doesn’t support an increasingly large number of apps. Like, it doesn’t work with Kindle, Adobe Digital Editions (which I used to use for eBooks) or even Firefox or Thunderbird.

So I’ve been trying to transfer my stuff from my computer to my iPhone. I started with books, because my inability to read those on my laptop was frustrating me the most. Now I can read all my books again, yay!

Also, I discovered this afternoon when at my in-laws’ house, that I can actually work my mother-in-law’s iPad without any difficulty. Isn’t it amazing that I can now just use any iDevice without the need to install special software? I wish computers were the same.

I am not sure what else to share right now. It’s still a bit awkward blogging on my iPhone, but I’ll hopefully get used to it real soon.

To Live a Meaningful Life

Posted on by Astrid

What does it mean to live a meaningful life? Does it mean to be successful? To contribute to society? I used to think that’s what it meant. I was raised with the idea that, in order to be worthy, you needed to contribute. Many people sitll hold this opinion and it creeps up in my mind every now and again.

Since I’m nowhere near successful by non-disabled standards, does this mean I don’t live a meaningful life? Especially since I used to conform to these non-disableed standards? Until my crisis of 2007, I lived a pretty normal, fulfilling, successful life. Now I seemingly don’t.

I mean, I need considerable care. I’m still not fully convinced that I even contribute to my marriage, even though my husband says I do. I don’t work. I live semi-independently, but this is so hard that I am applying to move into long-term care again. I do day activities at a place for people with severe intellectual disabilities.

Yet if I say this means I don’t live a meaningful life, am I not saying the same of those other people at my day activities place? They don’t contribute to society in any kind of tangible way. Yet they spread kindness and smiles all over the place.

Can’t I redefine meaningful living in a similar way that the National Federation of the Blind wrote a new slogan? They used to say that, with proper training and opportunity, blindness can be reduced to a physical nuisance. They also used to say that the average blind person can do the average job as well as the average sighted person can. This was significantly dismissive of those with multiple disabilities, or those who for any other reason couldn’t contribute as much to society as the average non-disabled person. Now they say you can live the life you want, blindness isn’t what’s holding you back. This is more tuned into the wishes of people to live meaningful lives in such a way that feels good to them. It moves away the focus from the need to contribute and onto the wish to fulfill one’s own dreams. How wonderful!

Linking up with Stream of Consciousness Saturday. The prompt for this week is “Mean(s)”.

Mental Health Ramble

Posted on by Astrid

I want to write, but I’m feeling stuck. A thousand thoughts are going through my mind. I’m not even sure that I’m being myself as I write this. Who am I, anyway? I don’t know. I can pinpoint it fairly clearly when I’m in one of my ego states. When I’m not, I doubt everything.

I would’ve had DBT yesterday, but my nurse practitioner was off sick. The psychiatrist would be calling me, but when she did, I pushed the wrong button. She left a message saying she wanted to call me because my nurse practitioner is off sick, but also to discuss “how things are progressing”. I’m guessing she’ll tell me off for wanting to go into supported housing, for feeling happy in developmental disabilities services and for not being sure I feel mental health treatment is benefiting me.

Right now, I’m not sure I care. I’m not sure whether I want to go the route my psychiatrist is wanting me to go, which is do DBT for now and be put on the list for trauma diagnosis. I don’t even know for sure whether my trauma symptoms are severe enough to warrant treatment, or whether I want them to be. Usually whenever I doubt this, it’s a sign that some memory or new aspect of myself is surfacing. I have no idea this time.

I feel, above all, that what I need is safety. This means being assured that I get the support I need. I’m mot sure my psychiatrist is of that opinion too. She told me at our last meeting in early October, that she felt day activities were underserving me, not challenging me enough. I panicked, called my support coordinator, who called the consultant psychologist involved in my case. She then E-mailed my psychiatrist. Maybe the way I did it, it feels as though I’m trying to use the cosultant to tell my psychiatrist off. That wasn’t my intention.

That being said, I do feel much more comfotable with my support team from the intellectual disability agency than with my treatment team from mental health. I don’t know whether that means I’m too comfortable being taken care of. I don’t know whether I care.

Anyway, my psychiatrist will be calling me again on Tuesday. Then I’ll be at day activities, so if I feel distressed by something she says, I can go to one of the staff.

CP Conference Last Saturday

Posted on by Astrid

So I attended the Netherlands’ national conference day on cerebral palsy on Saturday. Before I went, i was incredibly scared. Would I be able to connect to other people or would I be left on the sidelines all day? Would there be people willing to help me navigate the school building in which the conference was being organized? Would I arrive on time? But my main worry was related to my own diagnosis of cerebral palsy, or rather the lack thereof. You see, I was never told that I have CP by my parents and was too young to understand medical jargon by the time they stopped taking me to specialists. Maybe my parents didn’t even know, as doctors do not always clearly communicate and my parents were mostly looking for reassurance.

My GP also was a bit vague when I asked him last year, citing a probably relatively recent letter saying that I had acquired brain injury. Now I do happen to know that doctors disagree on whether brain injury acquired shortly after birth counts as ABI or a diagnosis of CP or the like should be made instead. So I’m a member of Facebook groups for both CP and ABI. However, ABI is a diagnosis regardless of symptoms and CP requires mobility impairments. I wonder therefore, are my mobility impairments severe enough to count?

I arrived at the school forty minutes before the doors were officially open, but someone took me to a chair anyway and gave me a cup of coffee. Soon, a man I’d been talking to via Facebook messenger arrived too and we sat and chatted some.

Gradually, other people arrived and it was soon time for the official opening speech. This was partly about Steptember, a movement challenge to collect money for research on CP.

Then, a neuropsychology professor spoke about the effects of movement and mental or physical effort on cognition in people with and without CP. It turns out that effort, whether that be mental or physical, strengthens brain connections to the frontal and parietal cortex, which are responsible for higher-order cognitive functions such as planning, organizing and impulse control. He also briefly touched on the effects of music, which can also help strengthen these connections. In short, moving and exerting ourselves as much as we can within the limits of our CP helps our cognitive functions. Of course, past age 30, these brain areas no longer grow and actually decline, but still exerting yourself enables you to learn more effectively regardless of your age.

After this, you could choose to follow a workshop session. The one I followed was on overload. This was a bit of a chaotic workshop, as the presenter allowed for questions while presenting. I am quite familiar with overload, as a person with autism, but I loved to explore it from a CP perspective. I mean, physically I do have some more limitations than those without CP. As a result, walking may give me energy, but it also costs me energy more so than it does non-disabled people. This was rather interesting, because I often tend to sometimes give everything and more of myself physically and other times I tend not to bother. Something the presenter said that really struck a chord was that mental overload can be counteracted by physical activity and vice versa.

In the afternoon, we could also pick a workshop to follow. The one I chose was on nutrition. A registered dietitian had developed nutritional guidelines for children and adults with CP. Topics that were discussed included underweight and overweight. The presenter said that, as a general rule, people with CP need fewer calories than those without CP. The reason is that, even though our movement costs more energy and hence burns more calories, we tend not to move as much.

Another topic that was discussed was swallowing difficulties. Did you know that up to 99% of people with CP, even those with mild CP, have swallowing issues? I didn’t. This was so validating, because I happen to have some rather significant swallowing issues.

Other topics of discussion included reflux, constipation and bone development. There is little research into these, as particularly constipation and osteoporosis are common within the general population anyway.

Overall, I loved this day. It was also very validating. Not only did no-one say I don’t look like someone with CP, but I actually met several people who are at least as mildly affecte as I am.

Confessions of a New Mummy

Activities That Give Me Inner Peace

Posted on by Astrid

I’ve been feeling a bit low again, but not as low as I was early last month. I’m not even really depressed, but just rather uninspired. I’d rather play games on my iPHone than do something productive, like blogging. To get myself writing again, I looked at The Self Exploration Journal once again. One of the prompts is about activities that give you inner peace. Here goes.

1. Yoga. I really need to do this more often. I don’t practice yoga much, as it feels like exercise yet doesn’t lead to weight loss. However, it does have other benefits. For example, it can help with my flexibility. It can also definitely help me find inner peace.

2. Meditation. I have Insight Timer, a free meditation app, on my phone. I love it, but I don’t practice meditation nearly enough. I tried it again yesterday, but when I was in the middle of a guided meditation, my husband came home.

3. Listening to soothing music. I used to always have calming whale sounds on when in the snoezelen (sensory) room at my old day activities. Unfortunately, I couldn’t copy the CD when moving day activities and it’s no longer being sold. I have yet to try to listen to my own soothing music on Spotify when in the sensory room. I really want to do more imagery-based activities using soothing music too.

4. Walking. I love going for walks. It truly helps me process my thoughts and move towards greater inner peace. It’s a more active way of creating inner balance, whereas the above three activities are more passive. I mean, yes, yoga requires movement, but it doesn’t require as much movement as does walking.

5. Exercise. Going on the elliptical has the same effect as walking, but amplified. I do this alone, whereas I always go on walks with other people. This means that I can quietly process my thoughts when on the elliptical, while at the same time getting my much-needed activity.

6. Writing. I really want to do this everyday, like I did when starting this blog. I really want to do more freewrites or diary entries too. This should definitely help me process my thoughts and gain inner peace.

What activities give you inner peace?

Weight Loss (Or Rather, Weight Gain) Update

Posted on by Astrid

It’s been months since I last posted an update on my weight loss and healthier living journey. My last update was very positive. This one, not so, but it has a silver lining.

I had not at all been following my diet. Not that I generally follow a specific diet, but when trying to lose weight, I try to moderate my food intake and limit myself on snacks and sweets. I don’t want to completely deny myself any sweets or snacks, but I really had been snacking far too much.

I wasn’t motivated to expose myself on the scale, so I didn’t weigh myself. Today though I did and the result was as expected: I’m now 71.3kg. This means I gained 2.4kg or roughly 5lbs in these three months. My BMI is over 30 once again.

Back three months ago, I was at my lowest weight in five years and had been thinking I could reach a weight in the lower sixties by the end of the year. Obviously, now I can’t. I’m not even sure my ultimate goal is to be at a healthy weight anymore, which for my height is 58kg. I had originally intended to reach that by January of 2020. Now I think I’d need to be content if I can get and keep my weight under 70kg and hence my BMI under 30.

Exercise-wise, I’ve not been doing as well as I wanted to either. I had set myself a goal for October of getting active everyday. Though it looks like I met that goal, I have to be more creative with what I consider “activity” than I’d originally intended on being. Today though was a great day, in that I got 95 active minutes according to my Fitbit and reached my daily step goal of 10,000 steps. Now that has me end this post on a positive note!

Developing My Fighting Spirit

Posted on by Astrid

Over at Pointless Overthinking, DM asked what circumstance got you to learn something surprising about yourself. I already responded there. I explained briefly about the time my psychologist removed my autism diagnosis and diagnosed me with dependent personality disorder instead. In this post, I’m going to expand on my answer.

In August of 2016, it had come to my attention that my psychologist had changed my diagnosis. I was at the time hospitalized long-term and had had an autism diagnosis ever since 2007. For a reason I still only partly understand, she had decided to remove it. I’m pretty sure she didn’t fully understand her own reasoning either, as she kept coming up with different excuses. When I involved the patient liaison person and requested an independent second opinion, she even started to negotiate diagnoses.

Being a little too trusting of people’s good intentions, I at first went along with her proposal of a new diagnosis. I wouldn’t get my autism diagnosis back, but I would get diagnosed with brain injury-related emotional issues, which still gave me a reason to believe my impairments weren’t imaginary. It made some sense, in that my psychologst said the brain bleed I had sustained as a baby, was her reason for removing my autism diagnosis.

By November though, my psychologist came up to me to say that she’d rediagnosed me yet again. This was it and there was no further room for negotiations. My diagnosis was changed to dependent personality disorder, borderline personality disorder traits and “developmental disorder” not otherwise specified. I didn’t know what that last one was, but I accepted it anyway.

A week after that, I found out that the “developmental disorder” had not been put into my records at all, but instead depressive disorder NOS had been written into my chart. In Dutch even more than in English, these words are so differently spelled that it couldn’t have been a typeo. My psychologist finally admitted that she’d not diagnosed me with any type of neurological or neurodevelopmental disorder and wasn’t intending to either. She said she’d written depressive disorder NOS into my file because a diagnosis on axis I of DSM-IV is required for someone to stay in the mental hospital. She was vague as to whether she believed I was depressed, being convinced that I was still mostly just dependent. A nurse added insult to injury by saying the psychologist did me a favor by giving me an axis I diagnosis.

When I was first told I’d been diagnosed with dependent personality disorder, I assumed that the psychologist would probably remove it if I fought it hard enough. After all, DPD is characterized by passivness, compliance and an inability to voice disagreements with others for fear of losing care or approval. She said she wouldn’t. Besides, suggestible as I am, I quite easily tacked off the five out of eight required criteria.

At first, I was just angry and defeated. Pretty soon though, my fighter insider, Leonie, emerged. I requested an independent second opinion and this time I left no room for negotiation. I got re-assessed for autism in early 2017 and got rediagnosed on May 1.

Readers who don’t know me, might be wondering why I care. Well, the reason I care about my diagnosis is that I experience significant limitations that can’t be explained by just blindness. I do try my best and this to me signals that something else is going on. My psychologist felt I was making up my impairments. She didn’t say so, but she did say I couldn’t be diagnosed with autism because of my brain injury, yet I couldn’t be diagnosed with that either. She felt that the fact that occupational therapy was mostly ineffective, proved that I had no self-confidence. Her way of helping me develop self-confidence was to kick me out of the hospital almost with no after care. It was effective, in that it did allow the figher insider to fully develop.

Only later did I find out that, even though she rationalizes her decision to this day, it probably wasn’t about me. There are significant budget cuts to mental hospitals, so my psychologist was under pressure to kick some people out. She picked me, probably because of my relatively young age and the fact that I wasn’t psychotic. She claims that dependent personality disorder was the most appropriate DSM-IV code for someone with bad institutionalization syndrome. That completely overlooks the fact that I’d not been admitted to hospital for no reason 9 1/2 years prior, of course.