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

CP Day

Posted on by Astrid

Yesterday, I heard about an event on November 3 that I was immediately interested in. It’s the Dutch national CP day organized by BOSK, the country’s charity for people with physical disabilities.

For those not aware, CP is an abbreviation of cerebral palsy. Cerebral palsy is a movement disorder caused by brain damage sustained in utero, during birth or in a child’s first year of life. In my own case, I had a brain bleed shortly after birth.

The thing is though, I was never told that I have CP. My parents just told me I’m clumsy. I did get adaptations early in life, such as a large tricycle. I also had lots of physical therapy. When I was around nine though, my parent discontinued my specialist appointments. Even when I developed scoliosis in adolescence, they didn’t tell me. Scoliosis is a common consequence of hemiplegic (affecting one side of the body only) CP.

Last year, I asked my GP about it and was told I have acquired brain injury. Usually though, when someone acquires their brain injury in the first year of life, it doesn’t “count” as ABI. Instead, diagnoses are then made based on symptoms, such as CP in the case of movement difficulties.

CP is classified in five levels of severity. Obviously, since I don’t even know whether I was diagnosed with CP as a child, I’m not sure of my level either. I would have to guess I’m probably level 1 or 2, which are the mildest levels.

CP is not progressive and yet in some ways, it is. The brain damage that causes it doesn’t get worse, but adults can experience worsening pain, muscle stiffness and symptoms related to overuse and overcompensation.

On the CP event, there’ll be various workshops for adults with CP and parents of CP children. The morning workshop that most appealed to me, is about overload. I’d love to explore this from an a CP perspective rather than an autism perspective.

In the afternoon, the workshop I’m wanting to attend is on nutrition. A dietitian will speak about nutritional guidelines for people with CP. While CP affects movement in the limbs mostly, it can also impact on one’s gastrointestinal tract, because after all these are muscles too. I suffer with both constipation and reflux, which will be discussed.

Obviously, I still feel a little self-conscious about going due to my uncertainty about my diagnosis. Because I am sure I had a brain bleed in infancy, my main concern in thsi respect is that I’m not “bad enough”. My parents at one point tried to get me into a school for the physically impaired and were told (or so ‘ve heard) that I wasn’t disabled enough. Now of course I don’t mind not being that disabled, but then of course I shouldn’t be going to an event like this.

Struggle #WotW

Posted on by Astrid

I want to write so bad, but I’m struggling. Struggling to get myself motivated for writing. Or for anything. Struggling to write coherent sentences. Struggling with my thoughts floating through my mind. Struggling with pretty major depression. I’ve been in survival mode just a bit too long. Now I’m ready to crash.

I am participating in Word of the Week (or #WotW) for the first time on this blog. My word for this week isn’t a shiny, happy one. It’s “struggle”.

This week was an eventful one, yet nothing really did happen. If that sounds like a contradiction, it’s because it is.

Early in the week, it became obvious to me that my depression wasn’t lifting like I’d hoped it would. I mean, I’d hoped that, once my support coordinator was back from vacation and I’d have home support three times a week again, I would feel better. I didn’t. I felt worse.

Thankfully, my support coordinator offered to come by on Tuesday for an extra hour of home support. I am so happy she did, for I didn’t know how else to make it through the day.

On Wednesday, my support worker came by in the afternoon. We ran some errands and I thought I’d do better that day. Not so. In the evenng, when it became apparent my husband wouldn’t be home till past 7PM, I had a meltdown.

On Thursday, I slept in till past noon and again lay in bed for a bit at 2PM. I could’ve been in bed all day, but my support coordinator would be here by 3PM. Thankfully, she was able to motivate me to go for a walk. That was when I decided to start the process of hopefully getting into supported housing. I don’t have my hopes up, of course.

I know that if the powers that be see this post and conclude from here that I’m just struggling with depression, they’ll not provide funding. After all, treatment precludes support. Besides, mental illness only qualifies you for temporary support. So I’m hoping the powers that be will see my needs beyond depression. I’m also blind and have a brain injury and autism, after all.

Interestingly, I had no problem convincing my psychiatric nurse practitioner that I do need 24-hour support. He was one of the first to ditch the dependent personality disorder label I’d been given by my last institution psychologist. As he said when I called him on Friday, I may be a little dependent, but that’s normal because, duh, I’m blind. I’m not sure that’s entirely true, in that to my knowledge most people who are “just blind” don’t need as much support as I do. However, I’m not “just blind”.

The Reading Residence

Consultation Meeting at Day Activities

Posted on by Astrid

So I had a meeting with the Center for Consultation and Expertise consultant at day activities this morning. First, I talked some with her alone. We discussed my care needs in some more depth than we’d done when she’d visited me and my husband at our home. I still feel the ideal situation is that my husband and I could still live togehter but close by a care facility. I also mentioned that, though my husband supports me wherever I go, he has some reservations about us living in a lean-on apartment together. A lean-on apartment is where you still live independently, but close by a care facility. Since my husband and I together make too much money for renting a home too, and we don’t have a huge financial reserve, choices are limited. This means most likely I’ll either have to manage with the same amount of care I get now, but we could move to a larger town, or I’ll need to go the long-term care route and essentially live away from my husband during the week. I can manage okay’ish now and I don’t want to risk my marriage for better care, so I’ve already reluctantly set my mind on the former.

We also discussed my needs for mental health treatment. We discussed the insiders and I named a few. The consultant, herself an educational psychologist, took my experience surprisingly seriously. I had expected she wouldn’t, given how she seemed to respond when my husband said he’s married to Astrid, “pieces” or not. I mentioned having come out to my psychiatrist. I’ll have a meeting with her and my nurse practitioner on October 2. I mentioned the psychiatrist having said that my treatment may take another five years. Again surprisingly, the consultant didn’t react negatively to that, saying instead that if I felt it’d be beneficial in the end, I should go for it. We also went into childhood trauma a bit, which is the reason the insiders are here. The consultant recommended I discuss getting EMDR with my psychiatrist and nurse practitioner. I said this had been recommended by the psychologist who rediagnosed me with autism in 2017 and on whose report my treatment plan is based. However, that psychologist recommended I do dialectical behavior therapy first. The consultant disagreed, saying that nowadays, people who aren’t very stable or even people with intellectual disabilities can benefit from modified EMDR. She mentioned a therapist’s name that I couldn’t fully understand and a quick Google search came up with nothing.

Then, we drank coffee and after that, the consultant talked with my day activities staff. She asked what activities I do during the day. She also recommended my staff respond proactively to my becoming overloaded. I’m not so sure I like that, but I think it’s for my own good anyway. I mean, we again went on a long walk this morning and I couldn’t fully keep up. As a result, at the end the staff decided not to take me on the full, hour-long walk again for now. I so badly want to meet my goal of 10,000 steps a day, so I feel pretty awful having to cut back.

On October 4, the consultant will make her recommendations at a meeting with my home support coordinator, assigned day activities staff and me. I’m hoping for the best.

#WeekendCoffeeShare (September 8, 2018)

Posted on by Astrid

This week, I’m once again joining in with Weekend Coffee Share. On the surface, I don’t have much to write about, but I’ll try anyway.

If we were having coffee, I’d ask you how you have been. It’s sometimes hard for me to remember this, but when I’m feeling like I’m now, I’d genuinely much rather hear about your day than share about mine. Since I don’t know who will be joining me for coffee, as this is just a writing exercise, this is rather fruitless though.

If we were having coffee, I’d try to share how off I’ve been feeling lately. Most people notice right away, but it’s hard for me to put my finger onto what is going on. I guess I may be in a prolonged freeze mode. This is one of Pete Walker’s four types of trauma responses and it describes a state of dissociation. I’m so disconnected from myself that I can’t even tell who I am right now. I mean, yes, I respond to the name given to me at birth, but I hardly connect that name, or any of y alters’ names, to my current experience.

I don’t know what triggered it. I’m not having flashbacks. I’m not even having memories that aren’t full-blown visual flashbacks. Rather, I retreat into my own inner world with a book. Currently, this is Where Has Mummy Gone? by Cathy Glass. This is a very sad foster care memoir. I know I’m supposed to feel sympathy for the child who is the main character in this memoir and on some level I do, but it’s all very distant.

If we were having coffee, I’d then chatter on about random happenings. I’d share that I did finally go on the elliptical yesterday evening after not having been on it in over a week. I’d share that we had pizza for dinner yesterday. It was salami day or so I’ve heard, so I had a delicious salami pizza.

If we were having coffee, ‘d tell you that yesterday marked 130 years since the first incubator was used for a baby. My mother posted that on my timeline on Facebook last night. Since I was born prematurely and spent time in an incubator myself, this is rather intriguing to me.

If we were having coffee, I’d try to round up the conversation then, because I feel my shoulder hurting badly, so I want to do some exercise.

How is your weekend going so far?

Tuesday Ramble

Posted on by Astrid

I don’t really know what to feel. Today was, well, chaotic. It started out with me getting up at 7:10AM as usual, still tired as usual. My energy level usually rises during the day, but being on high doses of psychotropics still means I’m at least somewhat tired all the time.

At day activities, everyhing went okay. I did some table-based activities and went for a walk with one of the staff trying to learn the route around the building. Meanwhle, a lot was on my mind. Yesterday, the staff had been telling the new intern how one of the clients acquired his cognitive disability. This was such a sad tale. I mean, yes, it may not be ideal to be born with a severe intellectual disability, but at least then you don’t know better. This man, the staff said, probably doesn’t realize much of what his life was like before his brain injury.

Still, it made me sad. I, after all, do know about my life before my extreme autistic burn-out in 2007. I could reason that, since high school was hard for me too, I should be happy I no longer experience that level of pressure. And I am. But that part of me, the would-be-university-professor, is still there.

After lunch, I went home. I wasn’t even home for ten minutes when we had a massive power outage. I didn’t discover it at first, only noticing my Internet connection had gone. Then, I discovered that my computer was running on battery power, so I went to check the rest of the house to see if we still had power anywhere. That’s hard, being blind with light perception, as I’m not sure I trust my vision enough to check the lights but I tried to anyway., I eventually went to check some other electronic devices throughout the house. Then, I called my mother-in-law and texted my husband. My mother-in-law texted back that she couldn’t find any news about a power outage, but my husband called back to let me know the whole village was out of power. Later, we joked that I had somehow caused the power outage.

My mother-in-law came to pick me up, so that while at my in-laws’ home I could at least do something on the computer. Which reminds me of how dependent on electronics I am, especially when alone. Like, I hardly ever touch my phone while at day activities, but at home, practically the only thing I do involves my computer or phone.

In the evening, my father called me by accident. He never calls me and even when my paternal grandma was dying, all I got was a text message from my mother. As such, I immediately panicked, because why in the world would he suddenly want to call me? As it turned out, it was nothing.

Now I’m supposed to feel good, or at least okay, but I don’t. Oh well. No time for processing, as I’m off to bed in about fifteen minutes.

A Profound Psychiatrist’s Appointment

Posted on by Astrid

So we had a psychiatrist’s appointment today. Originally, our psychiatrist had asked to see our husband too, but he didn’t want to come. I was a little late due to transportation issues, but we still covered many profound topics.

First, we went into why our husband didn’t want to come to the appointment with us. The psychiatrist was careful not to let me speak through her for my husband or vice versa. I liked this.

Then we went into our treatment goals and why we’re going extremely slowly with the dialectical behavior therapy program we’re following. Our nurse practitioner had already explained that he’d like us to fully understand the concepts before moving on to the next chapter, so that’s why in three months we’ve not gotten beyond the second chapter, which covers core mindfulness skills. There are 24 chapters in the course. Normally, BPD clients in group therapy do one chapter for each session and so they can finish the course within six months.

I started to explain how I find it incredibly hard to apply the skills into my daily life. Like, there’s one skill called observe, which is intended for taking a little distance (without dissociating) from an overwhelming emotion. For example, you can start by observing what you feel or think without describing it. I thought an example of this distance-taking was to do arithmetic in your head. My psychiatrist says that’s a step too far, as we first need to observe that we’re experiencing an overwhelming emotion (or physical sensation). Then we can take a step back and decide what to do with it. I mentioned the physical sensation of needing to use the toilet, which commonly overwhelms me to the point where I can no longer act fully functionally. (Because I am blind, in most places, going to the loo requires me to ask someone to show me where it is, which requires communication we don’t have access to when overwhelmed.) The psychiatrist told me that, if I do observe this feeling on time, I can still decide what to do with it out of my Wise Mind (DBT jargon for the right combo of feeling and thinking).

Then we went on to discuss the “pieces”, as we call the alters qwhen our mental health team are around (as to avoid self-diagnosing). Our psychiatrist asked us to describe some experiences relating to them, like how many are there (around 25) and what happens when we switch. She then asked whether all of us could agree that there is just one body, whether we like it or not. This was a truly profound question. First, she had us clap our hands and asked whether any of us are still convinced they could use those hands to cover their ears and not listen to what she had to say. That didn’t work, as we still dissociated a little. Then, she held our right hand and asked the same, repeatedly. This brought on a ton of emotional reactions, mostly wonder. We couldn’t say much, but later, when in the taxi back home, some of us were like: “I may not be able to cover my ears w ith those hands, but I can still run from that psychiatrist. Oh no, I can’t, as she’s holding my hand.”

We also went into how to do treatment from here on. We sort of sarcastically said maybe it’s going to take us five years. Our psychiatrist said that, if we truly want to make this work, to count on it that it’ll take that long indeed. I’m not sure how we feel about this. I mean, when we first started DBT a year ago, we were told by this same psychiatrist to do one chapter every two weeks and finish in a year. Of course, we found out pretty soon that this wasn’t working and a lot of other issues got in the way, so we restarted about three months ago.

We’ll meet with our psychiatrist and nurse practitioner together someday in September. Our psychiatrist will then explain a little about how to go from here and then we can hopefully decide whether we want this or not.

At the end, the psychiatrist shook our hand and said: “Now I’m giving you (plural) a hand and say goodbye.” That was such a validating experience. It was good to be validated like we’re multiple minds but also contained in that we only have this one body. As a side note, neither of us ever mentioned DID or dissociation. We think that’s a good thing, in that we don’t need to conform (yet) to any diagnostic box. After all, we don’t “want” to be DID, but we are multiple whether we want it or not.

How to Proceed in Our Mental Health Treatment

Posted on by Astrid

So we met with our nurse practitioner for dialectical behavior therapy again. This was our first session since I started considering dropping out. I am still unsure as to what I want, but I’m pretty sure that just working the manual in a very structured way isn’t working for me. I also wondered out loud how long this treatment is going to take and whether I think it’s worth it. With regards to this, my nurse practitioner explained that behavor change takes a long time because we learned our patterns from babyhood on.

We started discussing the “pieces”, as we call the alters when talking with our treatment team. My nurse practitioner said he wants to discuss this with the psychiatrist. I doubt much will come out of that, as the psychiatrist keeps the status quo as to whether we’re dissociative or not. She most likely believes we’re not, but wants to bring it diplomatically.

We went some into our original trauma, which involves my parents not having been given a choice as to whether I should be actively treated after my premature birth. They weren’t sure themselves and were told the doctors were keeping me alive and not to interfere or they’d lose parental rights.

My nurse practitioner also mentioned a book and movie about a person with multiple personalities (possibly Sybil). I am pretty sure my psychiatrist is going to stomp that association right out of him, as like I said, she probably doesn’t believe I’m dissociative.

After leaving the session, we were pretty unquiet. Katinka tried taking over from Clarissa, who usually does DBT, to get back into daily functioning mode. That was only partly successful. Our support coordinator arrived ten minutes after we got home and we were still pretty unquiet. We were able to calm down eventually and enjoy a walk.

In the evening, when our husband got home, we discussed the session with him and asked him to come to our next psychiatrist’s appointment on Tuesday. The original reason the psychiatrist had asked him to come is that she’d gotten the impression that we have relationship struggles. That upset my husband, of course. I finally managed to say that I want to discuss where to go from here regarding treatment.

There are several options. I could proceed as I have until now, which seems like the least productive option. I could stop going to therapy altogether or just stay with the team for med management and the ability to call someone when not feeling well. Or I could do more supportive therapy focusing on my emotional pain. This then could again be focused on several aspects of my life and it could or could not involve the “pieces”. I think that last option sounds best to me, but since it wouldn’t likely be based on a protocol such as DBT, I don’t think my psychiatrist would accept this. A fourth option, which I just realized when talking to someone on Facebook, is staying with my current team for med management and crisis support and going to another therapist for formal psychotherapy. I don’t think that’s a realistic otpion though.

#WeekendCoffeeShare (August 11, 2018)

Posted on by Astrid

I did the #WeekendCoffeeShare for a while on my other blog, but stopped eventually. Now that I’m getting this blog up and running, I think I’ll participate again. I’m currently having a cup of organic green tea with my mother-in-law, but if you’d like coffee, that’s fine with me too.

If we were having coffee, I’d ask you how you’re doing. I hope you’re all doing as well as possible. I hope the weather is good where you are. It is here. For me, that means not soaring hot anymore but not chilly either.

If we were having coffee, I’d share that I started new day activities last Monday. My first week as a whole was as good as my first day. I have been doing a variety of different activities, both indoors and outdoors.

If we were having coffee, I’d share that I’m still enjoying this blogging adventure. It is a challenge to blog everyday, but so far I’m meeting that challenge head on.

If we were having coffee, I’d share that I am considering exploring a low-FODMAP diet for irritalbe bowel syndrome. I discussed this with my mother-in-law, who is trying this too. It is pretty compliicated, particularly the elimination phase, but it may be worth trying. I was provisionally diagnosed with IBS in 2013 after a colonoscopy, bloodwork and a stool sample all came back normal, even though I’m not a classic case. I’m already pretty sure artificial sweeteners trigger my IBS. I consume those in relatively large quantities, as I tend to believe they’re an excuse to consume sweetness without gaining weight. Thankfully, with low-FODMAP, you don’t need to stop eating products that may be triggering altogether. IBS, after all, is painful and annoying, but it is not dangerous.

If we were having coffee, I’d share that I’m enjoying the day at my in-laws. My husband is visiting his grandma, who had a stroke a few weeks back. Unfortunately, due to her cognitive decline, she probably won’t recognize me, so I am not going with him. I’m so happy that I can stay at his parents’, because I don’t like being alone all evening. My father-in-law made a delicious pizza for dinner.

So what have you all been up to lately?

Angry

Posted on by Astrid

Hiya everyone,
My name is Kelly. I am 10-years-old. I am so angry now. I wanna call my mother and shout at her and all that, but the grown-up people say I can’t. I am angry because my parents say I’m angry too easily when in fact it’s them who do stuff like tough love.

I mean my mother says “So you wanna go residential at Bartiméus?”. That’s the school for the blind we go to. So if I’m not being good she’s gonna send me away. She also throws out my toys cause she says I’m defiant because I have too many toys.

Oh and Mrs. B our low vision teacher doesn’t want me to do low vision anymore. Well I don’t care what people think.

I was typing up this memory thingy but then my Internet crashed and I lost the piece I’d written. I will try to share again.

One day a social worker comes by my house to talk to my parents. I dunno who wants it my parents or the social worker. My mother says the social worker had said I’m angry too easily and I need play therapy. I go there during biology class, which is the only interesting class in school. so it sucks. I gotta play with this grown-up man I don’t even know. I wanna flood the water tray and throw out the purple dolls in the dollhouse because ya know, dolls can’t be purple. I don’t know why but my parents take me out of this therpay after four sessions. So why the fuck did they put me into it? I mean I’m not supposed to magically snap out of my anger by four sessions of stupid play therapy am I?

I’m confused now. Yes I’m angry. My parents say I wanna make them miserable. I have stopped caring. They’re gonna put me in residential if I don’t stop playing with my toys anyway and yet I’m suppose to play with this grown-up during biology class. I’m so angry. I don’t know why, cannot write it in English or maybe not even in Dutch either. I’m just pissed off.