Friday Evening Ramblings

Hi all,

A lot has happened over the past few days. Last Tuesday or Wednesday, we were checking out the website for our current care agency and we found out they have stories from clients, family and staff on the website. One of the stories was about a woman who lives with minimal brain dysfunction. This is the old term for invisible effects of brain injury. She had this from birth. I loved reading her story. It was so relatable. Then again, some of us were feeling off. Like, this woman lives in housing for people with brain injury and some wondered whether we can do this too.

Then we had an idea. We read about a training program called Hersenz. This translates roughly to “brain etc.” It is kind of like a continued course about the effects of brain injury and learning to handle those at home. For like when you can’t be in a rehabilitation center but can’t quite cope at home either. I don’t know whether it’s for people who live independently only, as we have no intention of leaving this facility.
I then inquired about whether there’s a brain injury cafe in my area, where people with brain injury come once a month to discuss their issues. There isn’t as far as we can tell, so oh well. Oh, you all know that we have some level of brain injury from a brain bleed we sustained shortly after birth right?
We also have been thinking of asking whether we can have our story on the agency website too. That would be fab!
Today we had a meeting with our psych nurse and nurse practitioner from the mental health team. I can’t quite remember all that we discussed but it was a good meeting.
Oh by the way, I’m Danique. I’m 21 like Clarissa and I guess I split off from her. Not really sure why. I don’t care though. There’s someone softly telling me that splitting isn’t possible in adulthood unless you experience recurring trauma, which we don’t right now. Well I don’t care. We also think we found a younger one who is 11 and is called Janita or Janique Or Janelle but she isn’t really sure about her name.
I feel pretty awesome right now! I guess there’s someone else feeling triggered or sad or whatever, as I sense those feelings too.

Danique

Premature Birth: Living with “Preemie Syndrome” #AtoZChallenge

Welcome to day 16 in the #AtoZChallenge. I am feeling very uninspired and unmotivated once again. In fact, when my husband suggested I postpone today’s post to tomorrow and do it on procrastination, that felt tempting for a bit. Instead, I am doing it on the effects of premature birth.

I was born at 26 weeks gestation. This means I was over three months premature. I weighed only 850 grams. I had to be put into an incubator and had to be on the ventilator for six weeks.

I already shared in my B and C posts about the effects of my premature birth on my eyes and brain. Retinopathy of prematurity caused me to go legally blind. A brain bleed, called an intraventricular hemorrhage, caused me to develop hydrocephalus and possible cerebral palsy.

Because some preemies have a ton of hard-to-explain issues that fall under no one particular diagnosis, the members of the PREEMIE-CHILD mailing list coined the term “preemie syndrome”. This is of course not a real syndrome, but it is used to describe the fact that many children who were born prematurely fit into multiple boxes of disability to a certain extent, but may not meet the full criteria. For instance, some children’s motor impairments are too mild to be classified as cerebral palsy. Mine might be.

It is known that preemies are at an increased risk of developing neurodevelopmental disorders such as autism or ADHD. Then again, some clinicians don’t diagnose these conditions in preemies, as they reason this is somehow a different condition. I am not sure how I feel about this, as I don’t care about the exact syndrome but more about the symptoms. This was exactly what my psychologist told me to do, and then she changed my diagnosis for all kinds of weird reasons. But I digress.

I don’t mean “preemie syndrome” as yet another label to identify myself with. It’s not that simple. It’s just that we tend to fall through the cracks and I want to prevent that.

Cerebral Palsy: And Other Effects of my Brain Injury #AtoZChallenge

Welcome to day three in the #AtoZChallenge. I am feeling a little off today, as my support worker canceled our appointment tomorrow and my husband will be home from work late this evening. For this reason, I’m feeling a little unmotivated to write. I hope that forcing myself to write today’s A to Z post anyway will help me snap out of the bad mood. Today, I am sharing about a disability that I have had since infancy, but that I didn’t know much about till a few years ago.

Like I mentioned on Monday, my autism diagnosis got taken away in 2016, because my then psychologist thought my having had a brain bleed as a baby precludes an autism diagnosis. It doesn’t, but it did help me gain some new perspective on my issues. Could I possibly be suffering from the effects of neonatal brain injury?

I asked my parents, starting with the obvious. I have left-sided weakness, affecting both my arm and leg, which I assumed was due to the brain bleed. I had heard of cerebral palsy and had figured out I might have this. I asked my father, but he didn’t answer my question. Possibly, he wasn’t told by the doctors, because my mobility impairment is relatively mild.

I did see a rehabilitation physician and had regular physical therapy until I was around eight. I also needed a cast on my left foot because my achilles tendon was at risk of becoming too short. Later, at age fifteen, I was diagnosed with scoliosis. This isn’t so uncommon that it alone warrants another diagnosis. However, coupled with all the other issues, I put two and two together.

Cerebral palsy, for those who don’t know, is basically a mobility impairment due to a brain injury acquired in utero, at birth or in the first year of life.

I finally went to my GP in 2017 to ask him, again focusing on my mobility impairment. This, after all, is the defining characteristic of cerebral palsy. I was just told I had acquired brain injury.

Still, in late 2018, I joined the national CP charity in my country. When I went to their conference in November, all puzzle pieces fell in place. Not only were my symptoms – not just the walking difficulties – characteristic of CP, but I met people with milder walking difficulties than mine who had been diagnosed as having CP.

There are five different levels of CP, depending on gross motor functioning (ability to walk or otherwise move around). People in level 1 and 2 can walk independently, though those in level 2 require some handheld mobility aids for long distances or on uneven ground. I would probably score as level 1 or maybe 2, but this motor functioning assessment is appropriate for children and adolescents only. There are also several different types of CP, depending on which limbs are affected and how. I probably have spastic hemiplegia, meaning CP affects one side of my body only.

Currently, I am not looking for an official CP diagnosis. I probably had one as a child, so digging up my old records may reveal it, but I’m not in a position to do so at this point. I also wonder what benefit I could gain from this. The support groups for CP on Facebook allow me in based on the facts of my brain injury and resulting mobility impairment. Besides, like my GP said in 2017, a physical or occupational therapist treating me for my brain injury would have to take into account the major disability of my blindness. Maybe, should I ever go into long-term care for the blind, I’ll be able to afford support for this.

A diagnosis of cerebral palsy requires mobility impairments, but a brain injury can have other effects. At the CP conference, the first presentation I attended was on overload. The same cognitive and affective difficulties that people who acquire a brain injury later in life can endure, can affect those with neonatal brain injury. In that sense, my psychologist may’ve been correct that my emotional and cognitive impairmetns are due to that.

Autistic: Living Life on the Spectrum #AtoZChallenge

Welcome to day one in the #AtoZChallenge, in which I’ll share a collection of miscellaneous musings. For my first post, I’d like to talk about a topic people who used to follow my A to Z posts on my old blog, are thoroughly familiar with, since I chose it for my theme in 2015 and 2017: autism.

I was first diagnosed with autism at the age of 20 in March of 2007. The clinician who diagnosed me, didn’t give me an Asperger’s Syndrome diagnosis, like my support staff at the time had wanted. I didn’t care, as I at the time already didn’t subscribe to the rigid subtypes of autism, be it Asperger’s, PDD-NOS or classic autism, or high-functioning and low-functioning autism for that matter. I believe autism is a spectrum condition presenting differently in every affected person.

Later, in December of 2007, I was diagnosed with Asperger’s after all. This remained my diagnosis, along with a few mental health conditions, until the summer of 2016. Then, my autism/Asperger’s diagnosis got taken away. The psychologist who changed my diagnosis, claimed that my premature birth and the brain bleed I suffered as an infant, preclude an autism diagnosis. As if those genetically wired to be autistic are somehow exempt from being born prematurely or suffering brain bleeds. I know that, because the exact cause of autism is still unknown, it may be hard to differentiate autism from the mental effects of brain injury. However, since said psychologist couldn’t diagnose me with acquired brain injury either, because I sustained the brain bleed before age one, I ended up with no diagnosis at all that could explain my social cognitive differences.

I sought an independent second opinion and, on May 1, 2017, was rediagnosed with autism spectrum disorder under DSM-5. I am diagnosed with level 1 ASD, which is the mildest kind. I am pretty sure that, if the psychologist had taken the opportunity to assess me in a more natural environment, I’d be diagnosed as level 2.

Autism is still diagnosed based on the presence of social communicative difficulties and repetitive behaviors and interests. As of the release of DSM-5 in 2013, sensory issues are finally part of the diagnostic criteria. In my opinion, they aren’t given nearly the amount of attention they deserve. Neither are executive functioning difficulties. This is a term which describes organizational skills. I scored high for ADHD on the initial screening tool, but couldn’t be further assessed for it. Though I’m pretty sure I have some ADHD-inattentive traits, they could just as easily be part of my autism.

Autism, like I said, presents with social communicative differences. These include, in my case, difficulty making and keeping friends, difficulty interpreting non-literal language and tone of voice. Of course, because I am blind, I cannot read body language. My conversations also tend to be one-sided, in which I’m either the listener or the talker.

The other criterion of autism is the presence of repetitive behaviors and interests. I engage in near-constant stereotypical, self-stimulatory movements (or “stimming”). My language can also be repetitive, but this is particularly clear when I’m overloaded. As for special interests, I don’t have a lifelong obsession, like Temple Grandin does with animal behavior. Rather, my interests, though they change often, can be obsessive in intensity and focus. For example, I used to have an obsession with calendar calculation (calculating what day of the week a certain date falls on).

My main autistic trait though is overload. This is also a common brain injury symptom. In that sense, I’m doubly blessed.. I tend to be both sensorially and cognitively very easily overloaded. This then causes me to stim more, use echolalia (repeat other people’s words) and may lead to meltdowns or shutdowns.

Something interesting about overload is that it rarely occurs when I’m engaging with my special interests. This may make you think I’m just lazy, but I’m not. For one thing, my special interests involve little offline interaction. For another, they are my special interests because I’m good at them.

I hope that through this post, you’ve gotten a little glimpse into my life with autism and learned something new. For those not aware, April is autism awareness month. I encourage you to read other blogs by autistic people. You will find that most have a kind of difficult relationship with autism awareness month. I, like them, prefer autism acceptance.

CP Conference Last Saturday

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

Developing My Fighting Spirit

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.

What Is My Body Telling Me? #Write31Days

Welcome to day seven in #Write31Days. Man, I’m getting tired of this challenge, as it doesn’t look like any of my readers care for it. However, I try to remember what the challenge organizer said, that this isn’t about gaining followers. It is instead a writing challenge to get you writing every single day.

Today I picked yet another prompt from The Self-Exploration Journal. It is: “What is your body telling you?”

I find this a really hard question to answer. I don’t focus on my bodily sensations much, yet when I do, they tend to overwhelm me. I regularly have a meltdown because I simply need to use the toilet. Usually this happens when I am not in a position to find the bathroom independently and the need-to-use-the-toilet sensation has robbed me of my speech. I also commonly have meltdowns because of hunger, pain or being cold.

As I focus on my body, I notice how my mouth hurts from having burned it on a hot snack I just ate. I notice my nose is a little runny.

I have distressing pain in my neck and shoulder muscles. It’s not as bad as it was yesterday, but still bad enough to distract me as I type this post. Good thing that this post is focused on my body.

If I have to guess what my body is telling me with these sensations, it’s probably to take a step back. I was impatient with my snack, thinking I’d need time to write this blog post too so I’d better eat my snack fast.

I’m not sure what the neck and shoulder pain are from. My husband says it’s most likely stress, but is that from doing too much or giving in too easily?

I know about the spoon theory, which describes the limited energy levels of people with chronic conditions. My support worker, who works mostly with people with acquired brain injury, reminded me of it on Monday. This morning, I was quite tired from the mere acts of showering and getting dressed. Yet I still can’t shake that little voice that says that, before I had support, I did these things too and never complained.

So my body tells me to take a break. Now I need to decide whether to listen or overpower its noise with my own and go on.

Lessons Learned from Regret #Write31Days

Welcome to day three in my #Write31Days challenge on personal growth. Today, I picked a writing prompt from The Self-Exploration Journal, which is a 90-day challenge. The prompt is about something you regret. What did this experience teach you in the end?

I am choosing my decision to move from the city of Nijmegen psychiatric resocialization unit to a long-term care unit in Wolfheze, a town near Arnhem in 2013.

The rationale for this decision was totally understandable. My husband lived in Doorwerth, a town neighboring on Wolfheze. Since we were exploring the possibility of me moving out of the mental institution and in with him, it seemed just about logical that I’d move to Wolfheze.

What I hadn’t anticipated was that I’d encounter less than supportive staff in Wolfheze. When I went for an intake interview, the responsible psychologist wanted to place me in a sociotherapeutic house, whch meant you’d live practically independently with a few other clients but the staff would come to your house at set times. They reasoned this would be the best preparation for independent living. I don’t think they’re wrong about that, but it became more and more apparent that I couldn’t cope with independent living like this.

So I opted to go into the long-term unit with 24-hour care instead. Even this was a huge adjustment, as staff started expecting me to learn practical independence skills that were too overwhelming.

My new psychologist also pretty soon removed my diagnosis of dissociative identity disorder and PTSD, changing it to borderline personality disorder. From there, it went further downhill. My first psychologist was good enough. She eventually did realize that I’d need lots of long-term support even when going into independent living.

In 2014, I got a new psychologist. This wasn’t my decision, but the old one was leaving. This psychologist had the worst impact on me of all mental health professionals I’ve had in those 9 1/2 years in an institution. She decided right from the start that I’m not autistic. She started to tell me I have acquired brain injury and need to go into a training home to learn independence skills for that. Now let me tell you, i already went into a training home that caters to among other people, those who are blind and those with acquired brain injury. I am confident that this training home offered me the best possible independence training. Yet because it failed, I had failed and I had to try all over again. Since I didn’twant that, I was dependent and misusing care and needed to be kicked out of the institution.

I was eventually kicked out of the institution in 2017. I only later learned that it wasn’t about me, but about the huge budgets cuts to mental health. Of course, the Nijmegen institution would have to face budget cuts too, so I might’ve gone the same route had I stayed in Nijmegen. However, then at least I’d have had supportive staff.

What I learned from this whole thing is that supportive people are the most important. You can live in a better home or a better area, but if the people who support you through and through aren’t there, it’s not going to work.

CP Day

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.