A Beautiful Memory: Clowns

It looks like, even though I’m still depressed, I’m getting a little bit of my writing mojo back. I have at least been commenting more on other people’s posts and feel like I want to write again. I was inspired to write this post by a question over at Pointless Overthinking. The question was about your most beautiful memory from last year. In 2018, my most beautiful memory was of saying goodbye at my old day activities. I already posted about that when it actually happened though. For this reason, I’m choosing another memory to share.

On November 23, 2017, my old day activities organized a “day out” for all clients. The reason it was called that was because they get money to take each client on an outing each year. This hadn’t happened in years though and, with many clients being profoundly and multiply disabled, it would’ve been hard. Instead of going out with those who could do this, the staff chose to have a “day in”. They organized for two clowns to visit the center.

I attended the group for profoundly and multiply disabled people at the time. I am not profoundly disabled, but I most enjoyed the sensory activities at that group. The clowns visited us and started interacting with the clients. None of the other clients can talk, but they thoroughly enjoyed it. So did I.

In addition to the clowns visiting, the staff had organized for a snack and fries delivery truck to come by. The clients at my group couldn’t make it clear what they wanted from the truck, so at first I too was just given a particular snack. When I discovered you were actually allowed to order your own snacks and fries, and as much as you wanted, I joined the people at the more able industrial group to fetch myself snacks. It was a ton of fun.

I was reminded of this day a few weeks ago, when a staff’s ddaughter visited us practising as a clown. She was in the process of auditioning to become a hospital clown and wanted some practice. She was really good. Unfortunately, she didn’t pass the auditions though.

Independence Training: My Journey Through Rehabilitation Programs #AtoZChallenge

Welcome to day nine in the #AtoZChallenge. I wasn’t sure what to write about till literally minutes ago. My support coordinator was in touch with the long-term care funding agency today. I still can’t disclose details, but it brought back memories of all the rehabilitation and training programs I’ve been in. Let me share.

I didn’t get a lot in the way of independence training while at the school for the blind, but I got some. It wasn’t efffective though. I don’t know why, but part of the reason was probably my parents constantly arguing with the school on what was important for me to learn. Another reason was my struggle with generalizing skills I’d learned at school into other settings. Once I went to mainstream secondary school, I didn’t get any independence training at all. I was pretty bad at life skills by the time I graduated high school.

I decided not to go straight to university after high school. Instead, I chose to go into the country’s only residential rehabilitation center for the blind’s basic program. I learned some skills, but still had trouble making use of them in the real world.

The same happened when I went into an independence training home. At first, I thought highly of myself and wanted to do things independently I really couldn’t. My plan was to get training for eight months and then leave for university. Those eight months became eighteen and then I was basically made to go to university.

I tried a ton of independence training while hospitalized on the psych unit too. It didn’t work. Whenever I tried to do something independently, such as clean or travel using my white cane, I struggled greatly. I didn’t fully realize this, not even at the long-term care assessment last January, but I really overestimated myself. My husband can attest to that. He’s had to get me out of trouble many times.

Why I struggle so much, no-one has been fully able to figure out. It’s probably a combination of my multiple disabilities (blindness and cerebral palsy) and my emotionally low functioning level.

It’s been recommended that I get more independence training. Maybe, after I complete dialectical behavior therapy for my emotion regulation issues, I’ll not feel as frustrated with myself and be more able to learn. I don’t think this is going to solve the problem though, since doing something with someone present, isn’t the same as doing something on your own.

Dealing with Some High School Memories

We are struggling quite a bit. We hardly know why, but yesterday, a memory appeared. It’s not like we weren’t aware of this having happened before, so it’s not a repressed memory. However, it still feels as though only certain insiders can “own” the memory, if this makes sense.

This is hard, because we got told last Thursday by our nurse practitioner that it’s good people aren’t validating our experience of dissociation. For example, they’re reminding us that the body is 32 and we’re all Astrid. That may be so, but it’s only getting us to further disconnect from ourselves.

He told us that being a child at heart is not wrong, but claiming to be a child is. Or something like that. He more or less told us to look beyond the emotional parts’ words to what was actually troubling us. For example, Jace saying she has to move out by age eighteen meant we’re afraid we won’t get long-term care funding. Fine by me but I think it’s not that simple. I think this may be an actual memory bothering Jace and it was just triggered by the long-term care stuff.

Anyway, yesterday evening we started experiencing high school memories. Our high school tutor was our safe person at the time. We trusted him more than we did our parents. Our parents weren’t okay with this. When in ninth grade, we had been struggling and our schoolwork was suffering. Our tutor asked us to tell him what was going on. We wrote it down. Then our tutor told our father, who worked at our school. He refused to disclose what we’d written though. I understand this, but it got our parents angry and led to an incident of bad mental abuse.

Anyway, like I said, this tutor was our safe person. He was the first one to know about our being multiple other than a handful of readers of my online diary at the time. He wasn’t impressed by it as much. In fact, he told us we’re just manipulative. This got us to go in denial and not tell anyone else.

It still upsets us that we could’ve had a chance for real help if we hadn’t been in denial at the time. I mean, the tutor told our first psychologist about our experience. This psychologist suspected DID, but we denied everything. It’s understandable, because we were still in somewhat of an unsafe situation at the time.

We trusted our high school tutor, but he betrayed our trust in some rather overt ways. He told our parents that we suspected we were on the autism spectrum. Not that there was no other way for them to find out, as we wrote about it in our public online diary. However, he told them that we’re a hypochondriac for it. In this sense, he was on our parents’ side. And yet, we didn’t see it.

Then again, is it okay for me to think in terms of being on someone’s side or not? I mean, our parents were supportive in some ways. Our mother was at least. Our father was and still is too self-absorbed to actually care about anything other than his intersts and opinions. It’s not black-or-white. People can be good and still do bad things. Or something like it.

Five of the Most Significant Events in My Life

And once again, I didn’t post for nearly a week. I am beginning to feel pessimistic that I’ll complete the A to Z Challenge in April. However, I still would very much love to make it happen. I am pretty uninspired though.

To get back into the writing habit, I am choosing to write about a topic I’ve already posted about on my old blogs a couple of times. It is good though for my new readers of this blog to get to know me. I am going to share a list of important events in my life. Because I need to explain a little about each, this post may become a bit long.

1. The day I left the hospital at three months of age. I was born over three months premature and had to spend the first 94 days of my life in hospital. The unit I was on is commonly referred to as neonatal intensivecare unit or NICU for short, though I wasn’t in actual intensive care the whole time. I was on a ventilator for the first six weeks and, after I learned to breathe on my own, was moved to medium care, the general ward and eventually home. In the NICU, I sustained a brain bleed and developed an eye condition called retinopathy of prematurity. These two conditions are the main cause of my disabilities. I was finally discharged from the hospital on September 29, 1986.

2. The day I started special education. I started school, as most children here in the Netherlands did at the time, on my fourth birthday (June 27, 1990). I started in the first year of Kindergarten, which takes two years here. Just before the end of my second year in Kindergarten though, on May 11, 1992, I was moved into special education for the visually impaired.

The reason why I had to transfer remains a mystery. My parents say it was because I had to learn Braille, but I didn’t get to learn that till over a year later and only because a totally blind boy joined my class. The school was generally only equipped to educate those with low vision. Besides, the first special school my parents chose for me, was for those with mobility impairments. I was turned down because cerebral palsy isn’t my primary disability.

My inner five-year-old holds some memories of this situation. In our memory, I was ill with what could’ve been a partly psychosomatic illness just before moving to special ed. I cannot prove this though.

3. The day I started mainstream secondary school. My parents fought for years to get me out of special ed again. If I have to believe them, they fought from the moment I started in special ed to get me out again. They were convinced I’m far too intelligent for special ed, despite the fact that most schools for the blind offer a normal elenentary school curriculum. Anyway, they finally succeeded after taking me to the third ed psych in eighteen months, a psychologist who’d never even seen a blind person in his practice. This was also when I got labeled as gifted with a verbal IQ of 154. These three digits haunt me till this day.

I started mainstream secondary school on August 25, 1999 at my city’s grammar school. Those six years were awful. I scored above-average academically, but struggled socially and emotionally. I dissociated through most of my time there and hardly have any real memory of it.

4. The day I suffered my psychiatric crisis. After graduating high school in 2005, I’d taken two gap years to work on independence. While in my second gap year, I was diagnosed as autistic. Leading up to this was my increasingly falling apart at the independence training home. I got sent out to Nijmegen to live on my own on August 1, 2007 though. I fell apart within three months. By late October, I was wandering everyday, had multiple meltdowns a day and ended up suicidal. I was eventually hospitalized on November 3.

5. The day I got kicked out of the hospital again. I remained in a psychiatric hospital for 9 1/2 years, but eventually got kicked out on May 8, 2017. I believe the real reason is the government budget cuts to mental health, but my treatment team at the time blamed me. I have been living semi-independently ever since. As regular readers know though, I’m in the process of hopefully getting into long-term care again.

PoCoLo

Was I Sometimes Raised as a Golden Child?

I have been feeling really off lately. I keep having flashbacks. I also keep having what I’d describe as flashforwards, where I imagine my parents’ reaction to the different possible outcomes of the long-term care situation. These then lead to more flashbacks. One particular flashback I keep having is to a phone conversation I had with my mother when I’d just been admitted to the mental hospital in 2007, or maybe it was shortly before then. She yelled at me “You can’t even wipe your butt without your support worker there”. While this was and still is exaggerated, I do have issues with my personal hygiene, including sometimes with toileting.

I have noticed that there’s a lot of shame attached to my needs. Like, there is this constant nagging voice in my mind saying that I really do manipulate everyone into giving me more care. After all, am I not getting by? This part of me is telling me to erase everyone from my life and just go live on my own, since even if I lived with my husband and no support, there was still my husband to be manipulated.

I was discussing all this with my nurse practitioner last Thursday. He said even if I do manipulate people (and I no doubt do, as does everyone else), these people also let themselves be manipulated. Like, if they have an attitude like they’d rather help me with every little thing than endure my frustration, it’s no wonder I become dependent.

There was this show on Dutch television last Sunday about a second grade class. I didn’t see it, but a term used in it that was repeated often throughout the week, was “curling mother”. I have no idea whether that’s the correct English term, but it refers to a parent who helps their child with everything until they’re eighteen and then magically expects them to have learned independence and leave the nest. My nurse practitioner was reminded of this when I described my parents. It feels odd, because even though yes my parents did help me with every little thing, this expectation that I move out at eighteen was made very explicit from an early age on. It wasn’t like my parents were hoovering over me not realizing that they’d not be there for me forever. In fact, I’m pretty sure they couldn’t wait for me to move out. It just ugh, feels so off. Like I was spoiled somehow because my parents did everything for me.

At this point, I remember a discussion in an inner child healing group in which the original poster commented on some author or speaker saying that the golden child of narcissistic parents suffers a lot. This person was confused, because the golden child is the child favorited by the narcissistic parent, the child who doesn’t get abused (or so it seems). Some people said that the golden child suffers a lot because, well, they are only the narcissist’s favorite as long as they live up to their perfect standards.

I was raised in a household where the golden child/scapegoat roles reversed repeatedly. For those not aware, the scapegoat is the main target of obvious abuse in a narcissistic family. As such, I can relate to a lot of golden child attributes. Like, I was often praised excessively, bragged about and let off the hook. Then again, I was, and this was always very clear, expected to livve up to my parents’ perfect-image plan for me. Once I stopped doing this, I was placed in a clearer scapegoat role.

It still feels off to think of myself as having been spoiled. I know Pete Walker says spoiling is a severe kind of trauma too. However, in society, it is often treated like the spoiled child is to blame for being spoiled. And they definitely aren’t. Only as adults can they choose to undo the effects of this trauma, but they have to admit it first. I have to accept this.

Determined

I want to write so bad, but my shoulder is still hurting. Not as badly as it was, but there’s some kind of bulge on it that keeps acting up whenever I lift my arm up even slightly, as I do for typing. I am determined to beat this stupid thing though.

Determined. That’s Fandango’s word for FOWC today. I rarely participate in these one-word challenges, although I’m subscribed to most blogs that offer them, including Fandango’s. However, today’s word struck a chord.

I told my named support worker at day activities about my crisis of 2007. I realize I’ve never shared my life story on here yet, so some readers will not know what I’m talking about. Let me explain. In 2007, I was living independently and going to university. I had been forced to go that route after essentially being kicked out of an independence training home that I had attended because I’m blind. I had been diagnosed with autism just a few months prior. Neither autism nor blindness alone should keep someone from living independently and going to university, but the combination did cause me a lot of trouble. Within three months, I was in a suicidal crisis. I had to be admitted to the psych ward. Not because I wanted to per se, but because that was what I needed at that point.

Fast forward 9 1/2 years and I was kicked out of the psych unit again. Yes, I stayed in a psychiatric hospital for 9 1/2 years. Not because I wanted to, but because no other place wanted me. Those for people with just autism, couldn’t deal with my blindness and vice versa. There are places for people who are blind with multiple disabilities, but most of the clients going there have some type of intellectual disability. That was obviously not where I belong. Or was it?

I’ve now been living independently with my husband since May of 2017. Despite lots of support, it’s a struggle. I am surviving, but I’m barely living.

So I decided to apply for long-term care. Which had originally been determined to be best for me by the psychiatrist who admitted me to hospital in 2007. I am determineed that, if we stop looking at just my labels and start looking at me, we’ll find someplace for me.

Then again, is this determination? Am I not essentially underachieving if I admit I need 24-hour care? Or am I actually determined to follow my own path to happiness and the best possible quality of life?

Loss #WotW

This was truly a mixed week. I wanted to write a gratitude list for it, and maybe I will do so tonight, but right now I don’t feel like it.

On Monday, I attended day activities as usual. A fellow client, an older man, attended too as usual, but he was very unwell. He had been ill for a long time and the staff had feared for his life on a few prior occasions. I attended day activities during the morning only and I worried in the afternoon that he’d die soon.

On Tuesday, the man wasn’t at day activities. I heard the staff talk about his group home staff having had a scare in the morning, but he was still alive. In the afternoon, I heard them talking about palliative care. By late afternoon, when us clients werre ready to leave, I heard that he’d passed. For those who don’t know, my day activities group is for people with severe intellectual disabilities, so i’m the only one who understands the conversations staff have among themselves basically.

On Wednesday, the other clients were told that this man had died. Most still don’t fully understand, but some have made beautiful drawings in his memory that will be given to his family on Monday. Near the center’s front door is a table with (electric) candles, a picture of the man and all the drawings. I decided to make a butterfly soap for it. I made it on Wednesday afternoon with my support coordinator. It turned out great, a beautiful lavender blue with lavender fragrance oil.

On Thursday, I was off from day activities and I spent the morning in bed. It didn’t really feel good, but I had nothing planned for the day except for horseback riding at 4:30PM. That was a great experience. I rode Aagje, a fjord horse with long hair (which is unusual for this breed).

Today, I showed my day activities staff the butterfly soap I’d made and placed it on the client’s remembrance table. We tried to do day activities as usual as much as possible. We walked to the marketplace in the morning. In the afternoon, when I went for a short walk with the day activities coordinator, I told her I wanted to ask a rude question. I wanted to ask whether, now that this other client had died, I could take his place at day activities on Thursdays. I still feel pretty awkward having asked this, but she understood that, if I waited a while, they might’ve gotten a new application. I E-mailed my support coordinator on this issue too.

Early this week, I got an E-mail from my support coordinator forwarding the termination letter from the Center for Consultation and Expertise. I didn’t understand this, as the consultant had offered to be my contact for the long-term care funding agency. Apparently, she still is somehow. I really hope I hear from that agency soon. My support coordinator did E-mail the local authority’s social consultant, who is in charge of my community care funding, to extend my funding for two months as we wait for long-term care to kick in.

Right now I feel… numb? I was a bit dissociated this afternoon, as my day activities staff were discusing clients’ severe challenging behaviors (not current fellow clients of mine). I remembered my time on the locked psychiatric unit, where I was often threatened with seclusion for problem behaviors and was in fact secluded or restrained a few times. It felt good disclosing this to my staff, but I did feel a bit awkward.

Now I’m waiting for my husband to get home from work. He’s going to bring French fries and snacks. I look forward to that.

I am linking up with Word of the Week. I choose “loss” as my word of the week in my fellow client’s memory.

Ten of The Most Memorable Gifts I Ever Received

Originally, I wanted to post about the lovely box filled with snacks and gifts I received for Christmas at day activities earlier this week. It’s a tradition here that employers give their employees such a box for Christmas. Of course, day activities isn’t a real job, but we get a Christmas box anyway. Ours was even more special, since it had been partly personalized for each of us by our staff. Maybe I could devote a post to this box, but then I remembered that Finish the Sentence Friday is about gifts too. I am twisting the prompt a little and not just writing about the gifts I received as a child or for Christmas specifically. After all, like I may’ve said before, Christmas isn’t as important a gift-giving celebration as St. Nicholas on December 5. Besides, I don’t always remember which gifts I got for St. Nick and which for my birthday. For this reason, I’m creating a list of the most memorable gifts I received throughout my life.

1. Wally, the stuffed whale. I got her when I came home from the NICU at three months of age. I slept with her till I was nineteen. Yes, I slept with stuffed animals that long! In fact, I still do. Now I don’t sleep with Wally anymore, but I still own her.

2. Roza, my favorite doll. No, Rosa isn’t spelled with a z in Dutch, but I had no idea. I got her from my paternal grandma for my third birthday. She had bought her in Berlin and we joked about the German word for “doll”, which is similar to the Dutch word for “poop”. Roza remained my favorite doll throughout childhood. When I was seven, I was interviewed for a Dutch magazine for blind children and said that my memory from three years back was tha tit was the year after getting my favorite doll.

3. A Barbie doll I got for my eleventh birthday. The reason this one is so memorable is the fact that my mother regretted giving it to me. She felt it wasn’t “age-appropriate” and I might need to go residential at the school for the blind if I didn’t catch up with my age peers socially and emotionally. I need a separate post to explain the (lack of) logic behind this reasoning.

4. Deodorant. I got this for my fourteenth birthday from my sister. No, not in a package that had other toiletries in it. Just a deodorant stick. She clearly wanted to send me a message. I didn’t get it.

5. A coffee maker. I got it for St. Nicholas when I was 20. I was going to live independently the next year and needed a coffee maker then. My husband is happy he didn’t drink coffee when I still had the apartment I used that coffee maker in, as it quickly got very moldy and dirty from lack of cleaning, as did the rest of the apartment.

6. A Planxty CD. This was the gift my husband gave me for the first birthday after we’d started dating in 2008. I only played it when my husband was there, as I really didn’t like it. Then again, he didn’t like my first gift for him, which was a book of previously unpublished philosophical works.

7. A liquorice “cake”. My husband and I got it for our wedding from my staff at the psychiatric resocialization ward in 2011.

8. The sensory cat soft toy I got for my birthday last year. It can be put in the microwave and then gives off heat and a lovely lavender scent.

9. Rainbow/Sofie, the stuffed unicorn I got from my previous day activities when I left there. She’s truly so cool! She has two names, because two readers of my blog each came up with an equally good one.

10. A weighted unicorn soft toy. Finally, I have to include something from this year’s Christmas box. It is, interestingly, another stuffed unicorn. This one is weighted as to provide sensory benefits. I’m having another contest to name her, like I did with Rainbow/Sofie.

What gifts will you always remember having received?

A Very Validating Experience

As I write this, I deal with a nasty cold that I’ve been feeling come on for a few days but wasn’t willing to accept was coming on. Not that there’s anything I can do about it. Whenever one of us has a cold, my husband always searches the Internet to find out whether they’ve found a cure yet. So far, no luck. I’m not terribly sick as of yet anyway. I think my husband suffers almost more from the weird noises my body makes when I can barely breathe than I do.

A lot has been on my mind lately. I could of course write a gratitude list and devote a sentence or two to each thing. I may do that eventually, but right now, I want to share about a specific experience in more detail.

Last week, we told our staff at day activities about ourselves. We disclosed that we may have dissociative identity disorder (calling it multiple personality) and explained that it’s a trauma-based survival mechanism. The staff member we told was totally fine with it. She actually validated us, saying she’d seen a little come out to her.

Then on Monday this week, we had a flashback while at day activities. A fellow client needs to be given oxygen at times. This reminded one of our littles of the time we needed oxygen as a four-year-old because our trachea had closed up. An adult alter was able to explain this to a staff before the little came out, but then we could no longer keep ourselves from switching and the little popped out.

This little started talking to our staff, the one we’d come out to the week before. She asked to sit on the staff’s lap. We had agreed when we first came out as multiple that this is okay with both the staff and us. It was such a nurturing experience.

Afterwards, an adult did feel the need to check with this staff that it’d been alright with her, but it had been no problem. That’s a good thing about doing day activities at a center for intellectually disabled people. I’m pretty sure that in psychiatric care, we’d not be allowed to express such a “childish” need for affection.

My Favorite Holiday

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.