Tag Archives: Cerebral Palsy

Doctor #WotW #PoCoLo

So I had two doctor’s appointments this week. First, like I said last Monday, I was seeing my GP on Wednesday regarding my mild motor skills impairments. A little explanation is in order. I have always had fine and gross motor skills impairments. Since they are so mild, they have always seemed practically non-existent in the face of the major disability of my blindness. As a child, I held my parents’ hand till I was at least twelve. This was however seen as a lack of self-confidence. I did use my white cane when prompted, but since I had trouble accepting my deterioratng vision, I apparently chose dependence on others over the white cane. When I did use it though, I often used it as a walking stick.

Now I’m no longer ashamed of the white cane. I in fact prefer to have it with me even if I walk sighted guide, because then at least people will see I’m blind. Still, despite having had countless orientation and mobility training sessions, I still cannot seem to use the white cane in its proper way. Even so, I feel very unsteady when walking independently. I would love to learn to improve, because, even though there is no route in our village I’d like to learn to walk without anyone accompanying me, I’d love to be able to walk without holding onto someone’s arm. That would enable me to go to events on my own by accessible transportation, which I now avoid due to not wanting to ask strangers to be my guide.

As for my fine motor skills impairments, I cannot eat neatly no matter how hard I try. I find this terribly embarrassing. I also struggle with preparing my own breakfast, pouring myself drinks and other skills that require the use of both hands. I can perform tasks that require just my right hand just fine and I can use my left hand for support, but activities that require coordinating both hands, just don’t work without adaptations. I’m curious to know whether such adaptations exist.

My GP looked up what seemed to have been a letter written by my previous GP in the institution. It said that I was born prematurely (correct), had a stroke as a baby (not correct, it was a brain bleed) and developed hydrocephalus as a result (correct). The resulting impairments are diagnosable as acquired brain injury. I seem to have read that when a person sustains a brain injury before age one year (or three in some countries), it’s not diagnosed as an ABI. The correct diagnosis, well, I don’t know. Motor impairments are, or so Dr. Google tells me, often diagnosed as cerebral palsy, but then they have to be severe enough, which I doubt mine are. I didn’t question the doctor though, although the confusing diagnosis did frustrate me more than I’d hoped it would. After all, my intention was to ask about treatment options.

The doctor told me that, if I’ve been stable for over two years, there’s no hope for neurological improvement. This timeframe is longer in children, but since I’m now 31, I’ll pretty much have to learn to live with my impairments. Still, I might benefit from occupational therapy and possibly a little physical therapy to help me learn to use adaptations and learn compensatory strategies. The doctor is going to contact the nearest rehabilitation center to ask whether an occupational therapist can take me on. My blindness may be an issue though, in which case I’ll need to see an occupational therapist at the blindness agency. They don’t often know acquired brain injury though. Seeing both is not an option insurance-wise.

I also saw the mental health agency’s general doctor on Thursday. The physical health screening with the nurse and all the things I didn’t know about my childhood conditions, were what had prompted me to see my GP. I discussed the GP visit for a bit. Then we went over the lab work the doctor had ordered. Everything was within the normal range except for one thing, creatinine, which was a little high. The most likely reason for this is that I don’t drink enough water.

With these two appointments and my having been having them on my mind all week, my word of the week is going to be “doctor”.

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Adaptations I’ve Used for My Disabilities

A few months ago, I wrote a post in which I described my limitations in as much detail as I could. I had just agreed to settle on a brain injury diagnosis rather than autism, so had to figure myself out all over again. Since then, that diagnosis was revised several more times and I finally decided to want a second opinion. I want answers to what’s going on with me.

The good point of that post I wrote, however, is that I felt free to describe my limitations in a non-judgmental way. As a follow-up, I am going to write a post today on the adaptations I’ve used throughout my life for dealing with these limitations.

The first adaptations I remember using, when I was about four, were not for what most people think of as my primary disability, ie. blindness. When I was four or five, I had to have my left foot in a cast to prevent my heel cord from becoming too short. This problem is common in children wth motor difficulties like cerebral palsy, though it occasionally happens to children with other neurological conditions too. I also had limited strength in my hands, so I got to use scissors which bounce back automatically. When I finally got to use a Braille typewriter, it had lengthened keys which were easier to press, too.

When I went to the school for the visually impaired at the end of Kindergarten, I was introduced to large print adn later Braille. I started learning Braille when I was seven-years-old. Because I was a print reader before I became a Braille reader, I had an advantage and a disadvantage. I could already read and knew my letters, but Braille wasn’t my first written language. I didn’t become truly proficient at Braille till I was around twelve and still can’t read it as fast as some blind people.

Apparently, around age seven, I had enough vision to ride a bike. I didn’t have the balance though. I still don’t know whether it was my parents being pushy or I truly had enough vision to safely ride a bike, but in any case I got a large trike paid for through the city department of disability services. My parents transported it to our new city when we moved when I was nine, even though this required approval from the authorities. I used the tricycle for about five years, until I became too blind to safely ride it even for purely leisurely purposes in my quiet neighborhood.

By the time I transferred to the school for the blind at age nine, I no longer needed most adaptations for my motor difficulties. I could use a regular Braille typewriter and in fourth grade, we weren’t crafting anymore anyway, so no scissors. I had also by this time become a full-time Braille user, though particularly in fifth and sixth grade I still peeked at the large print atlas every now and again. I got a handheld magnifier for my birthday or St. Nicholas around that time, because without it I couldn’t use the atlas. I had a large collection of tactile maps too, which I also loved.

When I was eleven, I got my first laptop with Braille display. I had occasionally used my parents’ computer before then, but had by this time long been too blind to even see very large letters on the screen. I tried for a bit to use a screen magnifier on the school computer, but I quickly learned to use Braille and syntehtic speech on my own computer.

I also had a white cane, of course. I started cane travel lessons when I was around seven, but rarely used my cane until I was fourteen. Then, when I had entered eighth grade in mainstream education, I had realized I was going to look blind compared to all fully sighted fellow students anyway so I’d better use a cane.

I went through school using mostly my computer for learning. We had a number of tactile educational materials, but I rarely used these. I hated tactile drawings, because I had an extremely hard time figuring them out.

In college and university, I used my computer with Braille display only. I also had gotten a scanner, so that I could scan books that weren’t available in accessible formats. A few years ago, I bought myself an OpticBook scanner that is especially good for scanning books. I rarely used it though, because eBooks became accessible to screen reader users in like 2013. I also rediscovered the library for the blind and last summer, like I’ve said, became Bookshare member.

I never used adaptations for cognitive impairments even after my autism diagnosis. I wanted to learn to use some and I still badly want to get a weighted blanket someday. I also am currently exploring adaptations for my fine motor issues. Because I felt more secure this way, I did for a while use a mobility cane. However, it was too long, then when someone had sawn off a piece it was too short. Also, it isn’t safe to use a mobility cane for me without also using my white cane and because of limited use of my left hand, I can’t use both. The adaptive equipment store does sell mobility canes with the white cane look, but these only have the advantage of making one recognizable as blind. They can’t be used for feeling around for obstacles. I could of course use a mobility cane with the white cane look in place of my white cane when walking sighted guide. However, I have learned to use my white cane for some support. The main reason I choose to use my white cane rather than a mobility cane with white cane look, however, is that I feel too self-conscious. I feel that I’m not mobility-impaired enough for this. I do wonder whether I’d feel more confident walking if I had a mobility cane, but I fear people will judge me for exaggerating my disability.

Education of Disabled Students: Inclusion vs. Mainstreaming

In his book, I’m Not Here to Inspire You, Rob J. Quinn published an essay on mainsreaming vs. inclusion and why inclusion has failed. He writes that, when he was mainstreamed in the 1980s, he had to somehow prove he was capable of going to regular school, whereas currently disabled students are included in regular education at all costs.

I was mainstreamed from 1999 to 2005. I, like Quinn, had to prove I was capable of being mainstreamed. Unlike Quinn, I was the only student with my disability in my school, which I until I read Quinn’s essay considered a definition of mainstreaming: the school really caters to non-disabled people but allows disabled people in who prove they’re capable.

Quinn considiers inclusion to do a disservice to disabled students because they’re given too much assistance. As an example, he writes about a girl with a similar level of cerebral palsy to himself who was given special assistance in all of her classes, while Quinn had to get by without extra assistance. Similarly, except in a few math classes, I did not get extra assistance. In these math classes, they were older students giving me assistance, not aides.

I understand Quinn’s point about overassistance. However, I see him writing from the point of view of someone who doesn’t have a cognitive disability. He points out that he heard of a girl with Down Syndrome being placed in advanced classes because “the kids are nicer there”. I can understand this erodes the meaning of advanced placements. Besides, I agree with Quinn that kids with disabilities need to be prepared for the real world and therefore as I said should not be overprotected or overassisted. However, this does not mean that students with cognitive disabilities need to be shoved away into special ed classes until they somehow prove they can get by in regular education.

Another objection Quinn has to inclusion is the lack of exporsure to other students with similar disabilities. When he was mainstreamed all kids with cerebral palsy went to the same schoool in the district. This is not what mainstreaming is like here: I was the only blind student in my school. In this sense, I’d love to have been given an education like Quinn’s, having exposure to people without disabilities as well as those with disabilities. In the Netherlands, unfortunately, at least in the 1990s, you either were the only kid with a sensory or physical disability, or you went to special education and were surrounded by students with your disability.

Quinn concludes that students with disabilities, according to him, need to somehow prove they are capable of mainstreaming if they want to be in regular education. I disagree. After all, people with significant disabilities shouldn’t have to prove they have a right to live in our society, right? I know some pro-institution people disagree, but other than in his essay on mainstreaming, Quinn doesn’t advocate exclusion. Maybe he would for those with intellectual disabilities. I for one won’t.

Life with a Disability Isn’t Easy

I decided to buy a new eBook again and went with I’m Not Here to Inspire You by Rob J. Quinn, a collection of essays (most originally posted on his blog) on life with severe cerebral palsy. In the first essay, Quinn tackles the assumption among people with disabilities that life with disabilities is easy for other people.

I have seen this assumption, and held this assumption myself. Interestingly, I’ve seen it within the disability community too. When I disclosed my autism diagnosis on a blindness E-mail list, I was told that this need not keep me from living a productive life. Look at Temple Grandin! And since blindness by the philosophy of this group did not need to keep me from living a fulfilling life, there were no limits to me obtaining a Ph.D. Other than the fact that 95% of the non-disabled population don’t have a Ph.D., I might say.

We’d like to believe that all people need to do to achieve a productive life is ignore their limits. When you have a physical disability, these limits in the media are multiplied, and therefore the overcoming of them is a thousand times more inspiring. Reading these stories, sometimes actually endorsed by disability organizations, makes the ordinary disabled person look totally meek. I, for one, have never felt encouraged by Helen Keller or Temple Grandin, at least not by the inspiraporn that surrounds them. People with disabilities who live productive lives can offer valuable advice, but it’s not like their mere existence inspires me.

I remember reading a 1950s fictional book about a teen going blind and going to a special school. In it, one of his classmates, a totally blind boy, wants to run a shop when he’s older. People find him an inspiration, but he says something like: “If I want to run a shop when I’m older, I need to pour as much energy into it as my far-away uncle who sits on the government does.” This book dates from the 1950s as I said, when you could only become a telephone operator if you were blind and living in the Netherlands. However, what it signifies as that living a productive life with a disability is hard.

Like Quinn, I don’t mean this to discourage people with disabilities. However, I want to say that it’s not like a disability has no impact. It’s not like you can just ignore it and say “So what?” to eveyr hurdle and move on. Of course, keeping a positive attitude is better than to dwell on negativity, but it’s not like it will magically get you your dream job. Besides, keeping a positive attitude is not the same as never being frustrated.

Finding Answers in Disability Limbo

A few months ago, I wrote a post about my need to belong somewhere within the disability community and my possibly intruding upon communities I don’t belong to. One such community is that for brain injury patients. As far as I was concerned, “brain injury” was always followed by “sustained after birth” or preceded by “traumatic” or “acquired”. Yet brain injury can occur at birth too. Only then it’s not called brain injury, right?

Since my autism diagnosis is being questioned again, I’m feeling an increased need to figure out what exactly is wrong with me. In part, this entails putting a name to what I have. Are my motor deficits diagnosable as dyspraxia, mild cerebral palsy, or are they not diagnosable at all? Am I autistic or not? Then again, putting a name to my disabilities is but one of my quests. As I’ve experienced, most communities are open to those with an uncertain diagnosis, so it’s not that I need to have a diagnosis to fit in with a support group.

Back when I was diagnosed with autism, I didn’t want a specific ASD diagnosis. The psychologist, who ultimately gave me an Asperger’s diagnosis anyway, said he wanted to do an assessment of my strengths and weaknesses. I don’t know whether a quick DSM-IV interview amounts to that, but to me, a lot of questions remain unanswered.

It could be my slight neuropsychology obsession, but I want to know why I have issues I do have. I want to understand, in a way, why I can’t function at the level I’m supposed to given my intelligence and verbal abilities. Is it normal to be unable to load the dishwasher but able to write a lengthy blog post? I don’t think a diagnosis, whether it’s autism or brain injury, will answer this question per se, but what will? It is most likely that I have quite bad executive dysfunction, but can this at all be validated? Should it?

It isn’t purely that I’m overanalytical and want to understand my every bit of brain function. It’s more that I’m struggling terribly with being seen as more “high-functioning” than I am in daily life. Not that I want to reinforce the stereotypes surrounding the Asperger’s diagnosis, but my mere existence won’t defeat them either, and I’m sick and tired of having to prove myself.

“Münchausen by Modem”?

i’ve been thinking of a few issues lately, and I want a way to write them out. Particularly, I’ve been thinking about various topics surrndoung my various diagnoses. I’ve only got a few diagnoses – not nearly as many as my Facebook group memberships would suggest -, but I’ve had many off-the-record labels.

Firstly, I have a diagnosis of Asperger’s or autism spectrum disorder. My parents say the diagnostician just gave me thsi label in order to get me services. My former therapist in the old city institution doubted my diagnosis too, thinking my theory of mind is too good for ASD. Now that whole theory-of-mind thing is controversial, but well. This therapist wondered whether a more correct diagnosis would be acquired brain injury, because I had a brain bleed as a newborn which resulted in hydrocephalus. I used this off-the-record label to gain access to some groups for brain injury and am finding them very supportive. (Yes, I did explain my situation in each of the groups and made sure I wasn’t seen as an intruder.) I’ve asked people in the autism groups for their opinion on the brain injury/autsim link, and 90% replied that autism is purely genetic. Kind fo shortsighted in my opinion.

I’ve also been thinking about my mild but slightly worsening motor deficits. I always self-identified as dyspraxic but have recently gotten to wonder what my diagnosis was as a child. I saw a physiatrist (physical disabilities doctor) until around age eight and have many of the syptooms and complications of mild cerebral palsy, including a significant left/right disparity, the need for a cast on my left foot at age five and scoliosis. These issues do not seem to happen to dyspraxics.

In a way, diagnosis shouldn’t matter. I know this. I worry sometimes that I’m only seeking for diagnoses so that I can collect an impressive list of labels. I remember about ten years ago reading something about “Münchausen by Modem”, ie. the tendency of some people to join Internet groups for diseases they don’t have. Am I a classic case of this? I’m not sure, but some people think so. At least, the people in the Dutch DID organization thought so. I guess it’s about time I work on developing a disorder-free sense of self.