#WeekendCoffeeShare (July 26, 2020)

Hi all on this summerly late Sunday evening – or should I say early night, as it’s actually past my bedtime right now? I’m still wide awake though, so thought I’d join in with #WeekendCoffeeShare. It’s too late for me to grab a coffee, but if you’d like one, I can make you one.

If we were having coffee, I would share that we were supposed to get heavy rain here today. We got some light rain in the morning and did get rain at night, but overall, it’s been a pretty rain-free day. I got to take an evening walk at 9PM. That suited the staff, as most other clients are in bed by then.

If we were having coffee, of course I’d share that I got approved for a higher care profile last Thursday. This means that the facility gets more money for me and they might be able to get some extra staff hours in. I found the letter detailing the decision in my government inbox on Friday. It was a bit hard to read how challenging my behavior really is. This care profile is called “living with very intensive support and very intensive care” and is the highest care profile for people with visual impairment.

If we were having coffee, I would tell you I made another keychain, this one for my husband. I like this one more than I do the one I did for my sister-in-law. My staff got the heart-shaped keyrings at a budget store.

If we were having coffee, I would tell you that after Tuesday’s appt with my nurse practitioner, I’ve been feeling at the same time more out of sorts and more feisty than ever. I do know there’s a great risk that, if I get assessed for trauma-related symptoms, the assessor will deny I have them because I’m too open about my trauma. However, a lot of people in dissociative disorder groups have been validating my experience. Of course, I’ll need a diagnosis of at least (C-)PTSD to get treatment and the prejudices among professionals suck in this respect. However, I’m feeling more and more that I may’ve found a community I belong to and find that I can access support from them.

If we were having coffee, I would tell you that I’m feeling similarly about my body and food. I mean, I at once feel very disorganized and disordered, and at the same time I’m trying to do something about it. Not that it’s any more than just trying at this point. I mean, I just noticed how my jeans fit a little better around my waistline, and that’s not a good thing, as they were rather loose. This upsets me, but it’s quite a challenge getting all of me to agree on how to change it.

If we were having coffee, lastly I would share that this week-end wasn’t quite the healthy food week-end. On Friday, we had French fries and snacks and ice cream for dessert. I also ate a whole bag of sweet liquorice between Thursday and Saturday. That though is a win, in that I’d normally have eaten it all in one sitting. I guess I’ll need to dialogue with myselves to get us on the same page re healthier living.

How have you been?

Something I Struggle With

A few weeks ago, Marquessa over at The Next Chapter started a writing challenge to get herself motivated to write everyday. Yesterday, I saw that Cyranny had joined in. Cyranny started with the first prompt. That one didn’t appeal to me, so I will go to the second. It is to share something you struggle with.

Regular readers may be able to guess what I’m going to share. It wasn’t the first thing that came to mind, but I got inspired by Marquessa’s post. She shared that she struggles with being called “pretty”. She then goes on to say that brains matter more to her than beauty. Well, I wouldn’t exactly say I’m the opposite, but I do struggle with being called “intelligent”.

As a child, I was often called intelligent. My parents loved bragging about my so-called genius. After I had an IQ test at age twelve, this became even worse. The IQ test, though not the first one administered to me, was the first one about which the assessor actually told my parents the exact IQ outcome. My performance IQ can’t be measured because I’m blind, but my verbal IQ was identified as being 154 on the Wechsler scale. This means I was supposedly within the highly gifted range.

As a preteen and early teen, I didn’t mind my parents bragging about this three-digit number as much. I was proud that, according to my mother, I had the same IQ as my father. Now the only time my father had an IQ test administered, he at least told me that was in the pub with a psychologist friend and he was rather drunk. I’m assuming his real IQ may be higher.

As I grew older though, my apparent high IQ more and more stood in the way of my being myself. It was frequently used by my parents and professionals to “prove” that I should be capable of solving my own problems in social situations. This got me interested in the concept of giftedness as asynchronous development. Later, I was diagnosed with autism. Still, my parents reasoned that I was just extremely intelligent.

The reason I struggle greatly with being called “intelligent” is the assumption that I am smart enough to solve non-intellectual problems. This may be so in most gifted people – I think I remember recent research disproves the theory of asynchronous development -, but it isn’t the case for me. Like I mentioned a few weeks ago, my emotional level is equivalent to someone approximately 18 months of age.

Last year, my IQ was used against me to deny me long-term care. I mean, due to my multiple disabilities and low emotional functioning level, I do best in a care setting normally catering towards severely intellectually disabled people. Because of my IQ though, I can’t get funding based on developmental disability. I am lucky that I’m blind in this respect, because I ultimately did get funding based on that.

Contrary to Marquessa, I do not struggle with compliments about my intelligence because I don’t agree with them. I mean, the IQ test I took at age twelve is rather outdated now and I scored much lower when I took another one in 2017. However, I still know I’m indeed intelligent. That being said, that’s not all I am. In the future, I’d like to be able to take pride in my intellectual abilities without them triggering the fear that I’ll need to be good at other things too.

Thankful Thursday (July 23, 2020): My Care Team

Hi everyone! How are you all doing on this warm Thursday evening? I’m doing a lot better than I was earlier this week. I could actually do an early gratitude list, as there’s more than one thing I’m grateful for. A simple list wouldn’t do justice to how huge these gratefuls are though. Let me share. I’m joining in with Thankful Thursday.

First, I still need to update you all on my appt with my nurse practitioner and CPN on Tuesday. It went better than I expected. The outcome is that my nurse practitioner is going to talk to the psychiatrist and see if he can find us a psychologist to do trauma therapy and work on our emotion regulation issues. I don’t remember all the details of the meeting, but at one point, I/someone in me blurted out that we’re in Facebook groups for dissociative disorders. I quickly added that really that’s none of my nurse practitioner’s business, but still we feel a lot of shame surrounding this.

Then on Tuesday evening, a discussion erupted on Twitter about the ISST-D’s guidelines for diagnosing and treating people with dissociative disorders. There’s this article from 2001 that’s still being used to weed out alleged fakers. It uses such things as being open about your DID or trauma to people other than a few close confidants, showing no obvious shame when talking about your trauma, being in support groups for DID, etc., as apparent proof that you’re fake. Now I must say I’m still conflicted about going the actual trauma/DID assessment route, but this did trigger us. However, my support staff are on my side.

We were still recovering from the shame about all this when we heard the main good news I was planning to share here. I got a higher care profile allocated to me by the long-term care funding authority. I still can’t quite believe it, but I’m so happy. The application hadn’t gone out till last week, but this afternoon, my staff got a call that it’d been approved. I’m still waiting on the letter in my government inbox confirming it, but this is really good news. I now have the highest care profile for blind people in the long-term care system.

I was feeling a bit disconnected when I heard the news. Like I said, I still can’t quite believe it, but it’s such amazing news. I’m so glad my staff were so perseverant that they actually applied for this.

Looking forward to hearing what you all are grateful for today.

Yet Another Night-Time Crisis

Honestly, I don’t know why I want to share this. It’s late Monday evening here and I’m feeling okay’ish. Tomorrow, I’ll have another meeting with my CPN and nurse practitioner to discuss my treatment. This got us worrying a lot last night, so much so that we ended up in crisis.

As I probably said a few weeks ago, my nurse practitioner wants me to try acceptance and commitment therapy. This wasn’t what we’d expected at all and honestly I still don’t understand how he thinks it’s a good fit for my issues. I mean, it’s evidence-based for depression, anxiety and OCD, none of which we deal with to a significant degree.

He was also pretty dismissive of my trauma-related symptoms. Obviously he doesn’t believe we’re plural. Fine by me, though not by some of the others. But somehhow he seemed not to believe I suffer with any type of trauma-related condition at all. At least, he didn’t feel that trauma treatment could or should help us.

This got us worrying last night, as we really have no idea how to advocate for ourself without coming across like a malingerer. It got so bad that we ended up impulsively leaving our room.

After our last case of elopement, the staff decided to lock the door to our home, so I couldn’t go outside. The night staff though hadn’t come to my room to check on me yet. It was 11:10PM. The night shift normally starts at 10:30. Eventually, a substitute night staff came by, saying he had to do one-on-one with another client, that the real night staff was delayed and he was really busy so could I please go back to my room? That upset us greatly, so even though we went back to our room as requested, some of us started self-harming.

About twenty minutes later, the real night staff came to check on us. We were upset, so told her to leave. She left and we cried and self-harmed some more because we were still very upset. Our signaling plan says staff are to stay with us if we’re upset even if we tell them to leave, but I don’t know whether the night staff have access to this plan.

Finally, we left our room again and waited, still panicked, for the night staff to be alerted and to come check on us. She was distraught at seeing us so upset. It makes me feel shame and guilt for making her feel this way. She got us a PRN lorazepam, which calmed us slightly. Still, we didn’t sleep till 2AM.

Now I’m feeling okay again, but I’m still not sure what to do with tomorrow’s appt. I mean, after each crisis, my mental health team say I somehow managed to get out of it. They probably mean it as a compliment, but it doesn’t feel that way. Today, I didn’t even care to call the mental health team. I’m still shifting between wanting to give up mental health treatment altogether and demanding trauma therapy. After all, the reason the appt upset me so much is that it triggered my feelings of being unseen, unheard, unsupported. Then again, maybe we’re not worth being seen, heard or supported.

A Year Ago

One of Mama Kat’s writing prompts for this week is to look back at a year ago. Where were you then? What has changed and what hasn’t? Let me share.

A year ago yesterday, I had my intake interview and tour of the care facility in Raalte. We visited the sensory day activities group and snoezelen® room, as well as the home selected for me. At the home at the time was a respite placement for a man I knew from the day center I went to at the time. He greeted me excitedly: “Astrid!” He then went on to babble “respite fun”, “Mommy and Daddy vacation”, etc. I was shown around two rooms, one this man’s room at the time and one another client’s room. I think that client got moved to another room when I came and I now have his room.

Even though I had been invited on a tour of the facility, I didn’t know for at least another month that I had actually been accepted. The reason was that the staff all had to agree they could provide me adequate support and care, given that my needs are in some ways very different from the other clients’. They, after all, all have severe to profound intellectual disability.

Now, a year on, I’m settled nicely into the care facility. I didn’t get to attend day activities at the group they’d shown me. Now though, and for at least another two months, we get day activities at the home.

I think also around a year ago today, my husband had first seen the house in Lobith we ended up buying. I ended up moving to the care facility in the same week we got the keys to our new house. As such, a year ago today, I still lived in the tiny village rental house with my husband.

As I look back, I keep praising God that this whole COVID-19 thing didn’t happen last year. Even though the day center I attended at the time is slowly opening its doors again, community support is still mostly phone-based. I am forever grateful I got my long-term care funding approved last year.

In other news, the weather is drastically different now from last year. Last year, all weather records were broken with temperatures rising to 40°C. Now we’re lucky to reach 20°C and have a few hours of no rain each day.

How is your life different now from last year?

Mama’s Losin’ It

Adult Separation Anxiety

One of the consultant’s comments in my emotional development assessment was that I have a lot of separation anxiety. The rest of my care plan is also full of how I’m afraid to be alone. A little over three years ago, my psychologist at the psych hospital said basically the same by diagnosing me with dependent personality disorder (DPD). Then, I vehemently disagreed. It wasn’t just out of anxiety that I needed lots of care, after all.

Another reason I was in denial of my separation anxiety/DPD, is the judgmental way in which my psychologist approached the matter. She felt I just needed a good kick in the behind and for this reason discharged me from the mental hospital almost with no after care.

Of course, that’s not the way to treat dependent personality disorder. Besides, one of the main features of DPD is not physical dependence, but unquestioning compliance, which I certainly don’t display. I don’t lack assertiveness at all.

I want to clarify here that, at least in my case, I’m not unwilling to be alone. I’m alone right now as I type this blog post. When I’m mentally well, I can be quite happy being alone, as long as I know there’s someone available if I need them.

It’s all too easy to judge people with adult separation anxiety disorder or DPD. Usually though, it’s much more helpful to approach them from an emotional development angle than from a character flaw angle. I again at least don’t want to ask for attention all the time. The things that I get help with from my staff, even though I can sometimes do them myself, I don’t ask for help with because I’m just lazy. In fact, it’s often easier to do some self-care tasks quickly by myself than to ask for help, but then the tasks don’t get done thoroughly.

I have for the majority of my life figured out how to care for myself alone. That’s because, despite all the independence training I got, no-one started with the very basics. Besides, like I said yesterday, I don’t usually distinguish between feelings of hunger, pain, etc. Isn’t it a bit odd then that you’d expect me to remember to do the day’s self-care tasks (which are many!) and actually do them all by myself?

I am so glad my current care facility isn’t as judgemental as my former psychologist was. My current staff don’t assume unwillingness, like she did. We may not find out soon yet what will turn out to have been the best approach. It will also probably depend on what measure of success you use for the outcome: independence, mental wellbeing, cost-effectiveness, etc.

Emotional Development

Last Tuesday, I discussed my care plan with my support coordinator. She needed to update it because the facility is going to apply for a higher care profile for me. Besides, it needed to be made current for my living in the facility rather than at home anyway.

My care plan is divided into several sections, including general health, diagnoses, intellectual, emotional and social functioning. The part about my intellectual functioning unfortunately still lists my IQ as measured 20 years ago. Since it according to the test dropped some 35 points between 1999 and 2017, I’ve wondered whether this is merely due to Flynn effect or something or I’m actually experiencing cognitive decline. Still, my IQ as measured in 2017 was above-average, so it doesn’t really matter for long-term care funding anyway.

In the part about my emotional functioning, I saw for the first time the results of the emotional development impression the consultant from the Center for Consultation and Expertise had written in 2018. This was a bit shocking to be honest. I knew I’m thought of as functioning at an emotional level equivalent of a toddler. It was difficult though reading that in several areas, i’m supposed to function at a level of less than 6 months. This wasn’t surprising though.

For instance, one area in which I function at a level of 0-6 months, is body awareness. The reason the consultant listed was my inability to make contact when overwhelmed. I would add to that my inability to distinguish different bodily sensations, such as hunger and pain. I tend to react to everything that’s physically overwhelming by acting in a self-stimulatory way. The consultant also listed my craving physical stimulation such as rocking as a reason for this.

I also apparently function at 0-6 months with respect to differentiation of emotions. In other words, I don’t do that. The consultant explained that I have a lot of distress and am hardly ever relaxed. While this is true, I’d like to add that I don’t generally distinguish between different strong emotions. Like, at all. Each strong emotion feels equally overwhelming to me, even strong “positive” emotions.

With respect to verbal communication, my level is 3-7 years. Because this scale was developed for people with intellectual disability, the highest level is 7-12 years and I in some ways expected to be qualified as functioning at that level. I do with respect to handling familiar tools, such as my computer. However, the consultant apparently recognized my less-than-great (understatement!) language comprehension.

It was rather interesting to read this assessment, even though of course the concept of mental age used here is a bit off to say the least.

Not Their Baby Anymore

Tomorrow is my 34th birthday. My parents came for a visit today. My mother, for the first time in so many years, didn’t openly reminisce about the time I was a baby. In fact, she seemed rather relaxed.

I was born three months prematurely. My due date would’ve been September 29, 1986 instead of June 27. Most if not all of my multiple disabilities are the direct result of my premature birth. I mean, it’s controversial to say this about autism, as most people in the autistic community claim it’s purely genetic. I have some genetic risk factors too, in that both my father and paternal grandfather are/were of the broader autistic phenotype. We can never be sure though how much my genetics contributed and how much the brain bleed and subsequent hydrocephalus I suffered did. In any case, my blindness and mild cerebral palsy are both due to my premature birth. My blindness is caused by an eye condition called retinopathy of prematurity and my CP is due to the aforementioned brain bleed.

As much as I sometimes seek to discuss my early childhood with my parents, I’m happy neither brought up the topic this year. They were in some rather brutal ways confronted with my current life. After all, due to the COVID-19 measures, I couldn’t be at my husband’s home when they visited. This was one of the first times my parents actually visited me in a care facility. When I was in the psychiatric hospital, either they’d visit me at my student apartment or later at my and my husband’s home. I think there were a few years, probably 2010 and 2011, when I had neither, but they always managed to take me out to some restaurant or something then. They were probably confronted with care facilities a few more times, but not in the past eight or so years.

A fellow resident tried to hug my mother when she came in. She didn’t comment. She did ask at some point whether my fellow clients can talk and I honestly replied that most can’t. When I told her there are clients in other homes I can talk to, she did ask why I didn’t live there then. I just said I didn’t have the right care profile for those homes or there was no available room.

Honestly, I’m totally relieved that my parents didnt’criticize me. I know they don’t agree with my being in a care facility. Still, they probably realized I’m not their little baby anymore.

Written for Fandango’s One-Word Challenge (#FOWC): baby.

Decisions

This week, V.J.’s weekly challenge is all about decisions. V.J. is facing a decision regarding an opportunity to buy a house.

My husband and I faced a similar decision last summer. I had been approved for long-term care funding on June 4. This would mean higher costs for my care, as the copay for long-term care is several hundreds of euros a month, while the copay for community care is at most €19. This made our search for a house to buy more urgent. After all, mortgages are usually cheaper than is rent on a similarly-priced house. We had inquired about buying the house we were renting at the time, but the housing corporation had refused.

My husband did most of the visits to possible houses by himself, including the one to the house we ended up buying. This house was about the only house within our budget that wasn’t falling apart or being rented out for an undefined time. The latter of which is illegal, but that didn’t help us.

So my husband ended up choosing our house in Lobith. I was hardly involved with the paperwork, except where I had to be because we’re married. I was pretty sure I wasn’t going to live in this house for long anyway.

Similarly, my husband left all decision-making regarding the care facility I was going into up to me. Of course, this is in a way different, in that I’m a legal owner of our house and he’s not legally anything regarding the care facility.

I ended up moving to the care facility in Raalte just two days before we were to sign the contract on our house.

It’s indeed somewhat interesting that my husband and I leave each other so much room for decision-making regarding our own lives. Other married couples probably do much more shared decision-making. I don’t know whether it’s a good thing or not the way we do it. People have encouraged me to get more involved with the financial and legal aspects of the house. I’ve also been told my husband could (should?) be more involved with my care. But as long as we’re both competent adults, it works okay.

I’ve been thinking of making my mother-in-law my official decision-maker should that ever change in my case. I know my nearest relative would be my husband, but I want in any case to prevent my parents or sister from becoming my guardians. After all, I’m not too sure they truly would have my best interest in mind, though obviously they’d think they do.

Gratitude List (June 20, 2020) #TToT

Hi everyone! How are you all doing? I’m a bit tired, but not ready to go to bed yet. Instead, I’m going to write a gratitude list again. As always, I’m joining in with Ten Things of Thankful (#TToT). Here goes.

1. Sunshine. The weather was really good over the past week. We had some light rain some days, but most days were sunny and warm.

2. An anti-allergy medication. I have bad eczema that itched like hell for some weeks. I finally went to the doctor on Wednesday and got an antihistamine called desloratadine. It didn’t help at all the first few days, or maybe without the medication the itch would’ve been even worse. In any case, now it does seem to help.

3. An antibiotic ointment. One spot, which the doctor initially thought was the result of an insect sting, got inflamed. Thankfully, with some Fucidin applied topically, the inflammation is a lot less now.

4. The night staff. A few nights ago, the itch was so bad and the inflamed spot so painful that I got really scared. I called for the night staff to apply some oily cream to the eczema. She did this, but I remained very scared. Somehow, I had gotten it in my head that I’d get sepsis from this. I pressed the call button again at around 2:30AM. The night staff was so kind and reassuring.

5. Alternatives to bread. I don’t really care for bread for lunch, at least not when topped with the ordinary kind of things you normally put on bread, such as cheese, peanut butter, etc. Thankfully, we had some lettuce left over from making burritos last week, so I had a salad for lunch one day. Another day, I had noodles.

6. Pancakes. Today, two staff came to our home on a voluntary basis just to bake us pancakes. They were so delicious!

7. Reaching my step goal. I reached over 12K steps (my goal being 10K) on three days this week. Today, I didn’t do so well, so I will still need to get some 5K steps tomorrow to break my weekly record of just under 65K steps.

8. The visiting rules at my care facility likely being relaxed as of next week Friday. The announcement will go onto the facility’s COVID-19 page on Monday.

9. My parents offering to visit me. I called my Mom last Sunday and, as we were discussing the visiting rules, my father asked if they could come too. I initially was a bit hesitant and I’m very nervous, but also excited. They will be visiting me next Friday.

Oh, and now I can’t think of a number 10, but whatever. I’m grateful for being able to express my gratitude. Consider that my tenth thankful. Besides, the number is just a suggestion.

What are you grateful for?