I haven't posted in a month and a half, and I'm probably be going to write a little less frequently again. I have some backlogging done and a list of topics I'll like to research and write about in the near future. I'm not gonna be posting the backlogs yet because I want to go back and rewrite because I'm confident that I can make them better. When it comes to writing and rewriting posts I've started putting it off again because I don't want to rush through posts, and have them lack in quality. I also want to keep my mind on other things instead of Hydrocephalus, which includes losing the desire to write about. I'm going to try to start another blog about other things that interest me so writing about Hydrocephalus wouldn't be a buzzkill.
I've still been keeping up with my blog stats, so I still know which posts are frequently the most popular and which keywords people are finding my blog by. So I'm going to talk a little bit about each of the 3 main topics that people have been searching for and only finding older posts.
The first is Hydrocephalus awareness month which is the month of September. I usually post a lot this month on my personal Facebook but I've only posted anything Hydrocephalus related at all this year because of the same reason that I haven't been writing. There's several Hydrocephalus foundations that are doing some pretty cool things this month mostly via their social media pages. I'll leave links for a few of them below so you can check out what they're doing or if you need help from them.
There's many Hydrocephalus Association walks each year but I only post about the one in Phoenix because it's the one closest to me, and usually the one that I attend every year. In previous years it's be held at the Phoenix Zoo and last year it was held at Steele Indian School Park. This year it's going to be at Freestone Park in Gilbert on October 24th. If you're like me and you have to take public transportation to get there, there's about a one mile walk (it might be a little shorter) between the closest bus stop and the park. From what I can tell by Google Maps there's a sidewalk that goes all the way from the bus stop to the park.
The closest hotels are along Superstition Freeway and about 4 or 5 miles away. From what I'm able to find there's not really any hotels on the nearby bus routes but there are some over near the Superstition springs center in Mesa. There's a transit center at the mall that has a bus take will drop you off close to the park. There's also buses that stop at that transit center that will take you to and from the Mesa Greyhound station, one that will connect you to the Light rail and a express bus that will take you to Downtown Phoenix. There's a handful of hotels to pick from in that area with plenty of restaurants, grocery stores and a mall. There's plenty of hotels to pick from on the Superstition highway with restaurants spread out and there's a couple clusters in the same area that has several restaurants in one shopping center.
The Great Pumpkin Race has been held in Tucson every year since 2006, and this year it's going to be October 11th at Buckelew Farm, I found out about it after I connected with the organizer Thomas Tronsdal on Facebook after seeing a post he had made on a Phoenix Hydrocephalus Walk page. I had been speaking to other people with Hydrocephalus in other States and even other Countries but he was the first from the same city. In previous The Great Pumpkin Race has benefited the UMC Neurological department and the Hydrocephalus Association but this year it will benefit The Arizona Center for Autism.
The Great Pumpkin Race is held at Buckelew Farm which is West of Tucson on Ajo Highway. so public transportation isn't a option. Breakfast is usually included at the race and there's other food and drink that can be bought at the Farm. There's a fun kids race before the 5k, and a free pumpkin comes is included in registration.
There's a few restaurants close by on Ajo Highway between the farm and getting back into town. If you're coming from out of town and need to somewhere the night before there's no hotels that I can find in the area but there are many that you can choose from in Tucson.
Below are links to both events and their Facebook pages.
Phoenix Hydrocephalus Walk
Great Pumpkin Race Facebook event page
Phoenix Hydrocephalus Walk Facebook page
Great Pumpkin Race
Below are links for some notable Hydrocephalus foundations that have things going on this month,
Hydrocephalus Association Website
HA Facebook
HA Twitter
HA Instagram
HA Google+
HA Youtube
Pediatric Hydrocephalus Foundation Website
PHF Facebook
National Hydrocephalus Foundation
NHF Facebook page
Hydro Angels Over America
HAOA Facebook Page
HAOA Twitter
Showing posts with label Pediatric Hydrocephalus Foundation. Show all posts
Showing posts with label Pediatric Hydrocephalus Foundation. Show all posts
Friday, September 18, 2015
Friday, February 28, 2014
What I wish I would have known about Hydrocephalus as a kid (part 2)
This is the second part of a post that I wrote several months ago, and intended to finish a lot sooner or not at all. Part of the reason why I'm writing a second part to it now is so that I could refer to it later on instead of writing a post that will end up being several pages long. The link below is the first part.
http://timothy-landry.blogspot.com/2013/07/what-i-wish-i-would-have-known-about.html
If you're someone I've known for more than 5 years you its most likely to never have known that I have Hydrocephalus. It was someone that my teachers knew about but wasn't spoken about unless it was somehow brought up or on a need to know basis. Especially at church, I'm not sure who was told about and who wasn't. I assume that more of my caregivers were told about it when I was younger and my speech was still pretty limited. I only started to tell people about it when my actual started to become a problem in 2009. I started talking to other people with Hydrocephalus on Facebook at the same time, and everyday challenges with Hydrocephalus were brought up early on and it sparked a interest. It wasn't until then that it's normal for people with Hydrocephalus to have the same problems learning as me.
My source is the Hydrocephalus Association's teacher's guide's third section which explains a lot of the problems I had in school and church, most of them I didn't think of having to do with Hydrocephalus. The first couple of things that I could really relate to in the guide have to do specifically with Nonverbal learning disability. It mentions that problems seem to become more noticeable around junior high and children (and of course adults) with Hydrocephalus or just nonverbal learning disability tend to have problems with math. I did start to really struggle during the last couple years of elementary more than before, and it got worse during the transition from Elementary to junior high. With math I had a few setbacks but I did pretty well until high school Algebra. I ended up graduating high school without ever actually passing Algebra or Geometry. They would have me take a lower math class and I would do great, but when I would try Algebra I bomb and fail the class every time.
Something else that's mentioned in the guide is Fine motor skills, which I'm sure which a problem was because how big of a problem it was outside of school but it's something that was easier to deal with in school than anything else. It's something that's mistaken less for a lack of effort, and it's something that I always knew had to do with Hydrocephalus. I remember it being a bigger problem at church specifically for the mid-week Boy Scout type programs for elementary school aged kids. During the first couple years it just meant that I had to ask someone to help me cut paper for projects, but later on when the projects were more about learning to tie different knots and building birdhouses I knew that I wouldn't be able to handle it. I was getting really frustrated a few weeks in and the amount of issues I had with fine motor skills was beyond just asking for help once in a while. The one specific experience having to do with fine motor skills that I have to do with school is when they had all the students tie a ribbon to a fence to make some sort of design or to spell something. I got anxious knowing that I wasn't able to and ended up having to admit that I couldn't do when I was questioned about it by a staff member and watch her tie it for me in front of my peers. It also mentions handwriting which I got a lot of help with from a teacher in elementary but it's something I still have some problems with especially if the paper I'm using doesn't have lines. It's eligible though and usually when I have to write a lot it's done on a computer.
The first thing that comes to mind in the visual motor skills section is finding my place in a book which was a problem then and still ends up being a problem once in a while in the workplace. It's also probably what caused me to not be able to space things out very well when I had to draw.
The next part of the section is organizational skills which automatically think of struggling to make and break habits, which would result and still does end up resulting in things not being done either because I would constantly forget to do something day after day or because of letting things, specifically assignments in school get organized. The few times I tried to use a organizer to write down my assignments it would last a few days but as soon as it was something that wasn't strictly in forced I would begin to forget about it which pretty much killed the purpose of having it in the first place. I would also consistently not use folders and toss stuff into my backpack which would result in a black whole effect and by the time I would find it again it would be crumpled up or not even in one piece. I think this is one of the major things that would have helped a lot if it was known about. It was the major reason why I was kept in special education classes. I don't know if it could have been handled differently, but if it could have it sure would have helped. The section also mentions not being able to follow a set of instructions which definitely was and still is a problem, especially if it was verbal instructions as a group. I would get stuck on something and get a few steps behind and not be able to complete the assignment.
Memory was something that was clearly a problem very early on at church when each of the kids would be asked to memorize a verse and they would erase one word at a time. I would always be the last to remember and be able to recite it. It was frustrating especially in front of everyone else but it meant a lot to me that the group leader wouldn't give up until I got it or get noticeable frustrated with me. It became a problem in junior high when I couldn't answer questions or recite something right after I read something in a text book or essay. It continued to be a problem in all through school but it was so frustrating my first year that I didn't put much effort into it and get by with really low grades and ending up not finishing high school on time. It's something that's even more frustrating in church small groups which have made me try to avoid anything where small groups are part of it.
The last section I'm going to mention is attention problems. There are a few sections that I've skipped but this is a long enough post without them, so I just picked the ones I could personally relate the most to. If you're interested I encourage you to check out the guide or even just that specific section. Struggling with attention ended up resulting almost has to go on Ritalin and being misdiagnosed with attention deficit disorder. This and memory effected my school performance too more than other things, and if it was possible it would have really helped getting more help in these two areas.
Thanks for reading, I hope that I've hope you understand me, yourself or whoever you may know that has Hydrocephalus or nonverbal learning disability. I hope that I've helped someone get something out of this, and make things easier for you. I'm going to write more about this subject in the next couple of months and my next post will be the one that is going to refer to this one. Below is a few links to Hydrocephalus foundations and the teacher guide I've been referring to and also a sample of my handwriting that I sent to a friend.
http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf
http://www.hydroassoc.org/
Pediatric Hydrocephalus Foundation--> http://www.hydrocephaluskids.org/wordpress/
This is a sample of my handwriting that I sent to a friend. I decided to make my handwriting more creative to entertain a couple of teachers in the process of doing my work. It worked and it's something that stuck, but ended up getting more sloppy over the years. Notice how the spacing is off? The size of the letters is kind of too but that's the main thing a teacher in Elementary school helped me with.
Friday, November 1, 2013
My personal experience with falling behind in the Public school system
This post is inspired by teacher friends, and a few parent friends. The first two parent friends that came to mind when I decided to write are both people I've met through the Hydrocephalus community. I'm writing this because of the Common core curriculum. I don't know much about it personally except from what I've seen from friend's posts and what I read about it online when preparing for this post. From what I understanding part of it is weekly tests trying to get kids on the same level. I'm sure there's a lot more to it but this is the part I'm going to focus on. I've provided some links at the bottom of this post for more information.
Most of my early years were focused on therapy for motor skills and speech problems. I started writing and reading at close to the normal time when other kids in my class was. I really hated writing but I had a few teachers and experiences that changed that. My first was my Third grade teacher, and also father of a childhood friend. I had a habit of writing in really big letters, which I've learned within the last couple years that might have to do with depth perception, but it was also something I was doing on purpose. I hated writing enough that I wanted to write as big as I could so I could fill up the space on the paper I needed to but with using minimal words. When I was in his class helped me stop the habit, even if it really frustrated with him about it at the time. It was also the same teacher who started to actually get me into writing with a few specific writing problems that helped me discover that I could really enjoy writing if I was inspired to be creative. At some point between that point and Junior high I also learned to express my emotion into writing, which mostly ended up being anger and also it wasn't something I would write directly about it. I would hide it but use it in certain characters or their actions. What inspired me even more was being limited to a specific subject for research papers in Junior high. I decided early on in Junior high to really think outside the box the next time I was able to pick out my subject, and write about something I could really get into. It resulted in excelling in papers, and usually getting close to the page limit. If I remember right the written part of my Senior project ended up being the page limit at 12 or 13 pages.
I was still one of the last to finish a writing project in the 5th grade though. I don't remember what it was about but the teacher made the students who didn't finish on time stand outside during recess try to finish. We were expected to finish but the only things we were able to use to write on was the ground or brick wall. The brick wall would cause us to poke holes in our paper and the cement ground didn't help much either. We also had the distraction of the other kids playing. Obviously none of us finished so we had to stay after school until we did. It wasn't the first time I had to stay after school for similar reasons, but usually it would be for something one on one. It was the first time and one of few times that I was embarrassed by a teacher over my learning disability. The other time had more to do with self-image and that was when I was sent to a Elementary school Track and field event and finding out when I was called out to the track for it that I was putting into a race with a bunch of kids with a lot more severe physical and mainly intellectual disabilities than mine. If either me or my parents would have been told about what was going to happen, I would have definitely bailed. I don't want to offend anyone by mentioning this, but I want to and wanted to be associated to be as "normal" as possible.
When I was being held after class or being tutored in some way it was usually because I had a really hard time understanding something, for example in the Fourth grade when I was learning how to play the viola and the multiplication table. It's something that worked time after time, and usually if it didn't happen I would be quick to fail. Thankfully now that I'm working it's something that I end up dealing with a lot less because almost every job I've had included one on one training or something that I could figure out on my own.
I learned pretty early on that I had a really difficult time with memory, mostly with short term and working memory. It started out with me always being the last to remember a weekly bible verse in a Christian based type boy scout group in the First and Second grades. The really big blow came in the Sixth grade when after focusing mainly on catching up using therapies in Elementary school I started a translation into several separate classes, a lot more homework and tests. I ended up doing very little homework and failing my tests until my Individualized Education Program meeting a couple months into the school year. I was failing all my core classes already. I had to put a lot of hard work into that year and my learning disability really started to show. The major problems I had off the top of my head was not being able to remember or at least express what I had just read right after I read it, understanding homework, and being able to store enough in my working memory to be able to pass a test the following day. I spent a lot of time doing homework that wasn't supposed to take that long to complete, and really struggled to pass tests. For most of that year even if I was working as hard as I way (along with my Dad that was helping me) I was only getting the average grade of a C. It was really discouraging to know that my friends were getting higher grades and seemed to have to work a lot less for it. I ended up just barely getting by during the rest of Junior high and failing a lot of classes during my first couple years of High school, which ended up causing me not to be able to catch up fast enough to graduate with my class. I wanted to drop out the entire time but I knew my parents wouldn't give me permission and by the time I turned 18 I was only half a credit from graduating so it would have been really foolish not to go for it.
Reading and hearing about Common core makes think about how much I struggled. I don't know what I would have done with myself if I would have had to start to have to remember information so early on for tests on a regular. Then no matter how hard I tried to end up falling behind on those tests and fall behind in that way behind peers. I honestly feel bad for kids with learning disabilities who have to deal with that blow right away, without at least in a way enjoying their first few years of school first.
If you're curious to learn more about my experiences in school I have all of my posts labeled, so those will send you to similar posts. Thanks for reading, while I hope that you may have learned something new about me, I especially hope that you've learned something about yourself or someone that you love and care about.
www.corestandards.org/
http://www.foxnews.com/us/2013/09/04/critics-claim-common-core-brings-chaos-not-accountability-to-classroom/
http://www.huffingtonpost.com/news/common-core-curriculum
http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf
http://www.hydrocephaluskids.org/wordpress/ <--Pediatric Hydrocephalus Foundation, including state chapters in 35 states currently and the Washington D.C area. The list of State chapters can be found if you scroll down the page some in the "contact us" section.
Most of my early years were focused on therapy for motor skills and speech problems. I started writing and reading at close to the normal time when other kids in my class was. I really hated writing but I had a few teachers and experiences that changed that. My first was my Third grade teacher, and also father of a childhood friend. I had a habit of writing in really big letters, which I've learned within the last couple years that might have to do with depth perception, but it was also something I was doing on purpose. I hated writing enough that I wanted to write as big as I could so I could fill up the space on the paper I needed to but with using minimal words. When I was in his class helped me stop the habit, even if it really frustrated with him about it at the time. It was also the same teacher who started to actually get me into writing with a few specific writing problems that helped me discover that I could really enjoy writing if I was inspired to be creative. At some point between that point and Junior high I also learned to express my emotion into writing, which mostly ended up being anger and also it wasn't something I would write directly about it. I would hide it but use it in certain characters or their actions. What inspired me even more was being limited to a specific subject for research papers in Junior high. I decided early on in Junior high to really think outside the box the next time I was able to pick out my subject, and write about something I could really get into. It resulted in excelling in papers, and usually getting close to the page limit. If I remember right the written part of my Senior project ended up being the page limit at 12 or 13 pages.
I was still one of the last to finish a writing project in the 5th grade though. I don't remember what it was about but the teacher made the students who didn't finish on time stand outside during recess try to finish. We were expected to finish but the only things we were able to use to write on was the ground or brick wall. The brick wall would cause us to poke holes in our paper and the cement ground didn't help much either. We also had the distraction of the other kids playing. Obviously none of us finished so we had to stay after school until we did. It wasn't the first time I had to stay after school for similar reasons, but usually it would be for something one on one. It was the first time and one of few times that I was embarrassed by a teacher over my learning disability. The other time had more to do with self-image and that was when I was sent to a Elementary school Track and field event and finding out when I was called out to the track for it that I was putting into a race with a bunch of kids with a lot more severe physical and mainly intellectual disabilities than mine. If either me or my parents would have been told about what was going to happen, I would have definitely bailed. I don't want to offend anyone by mentioning this, but I want to and wanted to be associated to be as "normal" as possible.
When I was being held after class or being tutored in some way it was usually because I had a really hard time understanding something, for example in the Fourth grade when I was learning how to play the viola and the multiplication table. It's something that worked time after time, and usually if it didn't happen I would be quick to fail. Thankfully now that I'm working it's something that I end up dealing with a lot less because almost every job I've had included one on one training or something that I could figure out on my own.
I learned pretty early on that I had a really difficult time with memory, mostly with short term and working memory. It started out with me always being the last to remember a weekly bible verse in a Christian based type boy scout group in the First and Second grades. The really big blow came in the Sixth grade when after focusing mainly on catching up using therapies in Elementary school I started a translation into several separate classes, a lot more homework and tests. I ended up doing very little homework and failing my tests until my Individualized Education Program meeting a couple months into the school year. I was failing all my core classes already. I had to put a lot of hard work into that year and my learning disability really started to show. The major problems I had off the top of my head was not being able to remember or at least express what I had just read right after I read it, understanding homework, and being able to store enough in my working memory to be able to pass a test the following day. I spent a lot of time doing homework that wasn't supposed to take that long to complete, and really struggled to pass tests. For most of that year even if I was working as hard as I way (along with my Dad that was helping me) I was only getting the average grade of a C. It was really discouraging to know that my friends were getting higher grades and seemed to have to work a lot less for it. I ended up just barely getting by during the rest of Junior high and failing a lot of classes during my first couple years of High school, which ended up causing me not to be able to catch up fast enough to graduate with my class. I wanted to drop out the entire time but I knew my parents wouldn't give me permission and by the time I turned 18 I was only half a credit from graduating so it would have been really foolish not to go for it.
Reading and hearing about Common core makes think about how much I struggled. I don't know what I would have done with myself if I would have had to start to have to remember information so early on for tests on a regular. Then no matter how hard I tried to end up falling behind on those tests and fall behind in that way behind peers. I honestly feel bad for kids with learning disabilities who have to deal with that blow right away, without at least in a way enjoying their first few years of school first.
If you're curious to learn more about my experiences in school I have all of my posts labeled, so those will send you to similar posts. Thanks for reading, while I hope that you may have learned something new about me, I especially hope that you've learned something about yourself or someone that you love and care about.
www.corestandards.org/
http://www.foxnews.com/us/2013/09/04/critics-claim-common-core-brings-chaos-not-accountability-to-classroom/
http://www.huffingtonpost.com/news/common-core-curriculum
http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf
http://www.hydrocephaluskids.org/wordpress/ <--Pediatric Hydrocephalus Foundation, including state chapters in 35 states currently and the Washington D.C area. The list of State chapters can be found if you scroll down the page some in the "contact us" section.
Friday, July 26, 2013
What I wish I would have known about Hydrocephalus as a kid
I've probably already covered this subject, but now that
I've made it half way to 100 posts (this is my 50th) I've decided to go back
and write about certain subjects again. Some reasons is knowledge that I've
gained since started writing, or things that I thought that I knew that are
actually false. I want to reach people doing this, that I necessarily could
reach when I first started this blog. Also if I write the same thing in a
different way I also have a chance to help people that might not have
understood the way I wrote it last time.
When I was 17 I knew very little about Hydrocephalus, even if it was something that I had since I was at least a toddler. The main reason for this was because I had only had one surgery, the shunt placement when I was about a year and a half. I knew that I had a shunt and where it was. I understood that I was dependent on it and what I shouldn't do to protect it. Different neurosurgeons advise their patients their parents to avoid different activities, and for me it was only one thing. My neurosurgeon told my parents that I shouldn't play contact sports. I also knew what my major shunt malfunctions so if there was ever a emergency with it that my parents and teachers (in Elementary school at least) weren't around then I would know what to recognize so I could alert someone right away. Thankfully it didn't happen during my childhood, but I was better off knowing it than taking a risk. I knew that my motor skills, and lack of muscle control had to do with it and that's definitely the hardest part for me, both now and then. I also always knew that I would need surgery at some point but I also figured it would happen in my childhood, and it never did. It didn't really get me down; it was just always something that was in the back of my mind but not something that I thought to hard about it.
It was my senior year of high school that I started to look more into Hydrocephalus. The site that helped me begin to learn about it the most and gave me a glimpse into the lives of people of others with the condition was Hydrocephalus Association. Just ten years there were still very few Hydrocephalus foundations and at the time HA was the only major one I could find. I did some serious lurking on Hydrocephalus/brain forums and e-mail groups but very rarely said anything. My main reason that I was hesitant to post was that I was having no problems with my shunt that I knew of and compared to how long the average shunt lasts before it malfunctions in some way my shunt was (and is) older than dirt. I wouldn't find out about all the smaller daily problems associated with Hydrocephalus until a lot later on with social media. If I would have known about the daily problems, and that I'm not the only one who has a shunt that has lasted far long that expected than I'm sure I would have taken advantage of at least the forums. I didn't look much farther into condition for several more years after that. I had no major problems at all until a few years ago so I had no reason to.
I had a few people with Hydrocephalus add me on Myspace because I mentioned it on my profile, but we but I would avoid conversation because I felt like telling anyone else with the condition how old my shunt was would make me look like a poser. I'm not sure if he was my first Facebook friend with Hydrocephalus but he was the first one I could remember at least. Around the time I started to have problems with my shunt request I got a friend request. Even if I don't know the person, I usually like to give people a chance to tell me why they decided to add me. With this person, I ended up not needing to ask once I took a look at his profile. He had everything I needed to know to keep him around in his "about me" section. He mentioned in it in his about me section that he has Hydrocephalus and that his current shunt has lasted him over two decades so far, and that the shunt that he had before that was one that he got as a kid. He was born in the sixties, during the first decade after the first couple of shunts started to be used. At the time he was born only 5% babies born with Hydrocephalus survived. It's the opposite today, but without sugar coating it people still die from Hydrocephalus or complications. It's definitely not a death sentence but it's not a condition that cannot be taken seriously and it's something that has effects of people's daily lives. It may be because of pain, but there are many other complications from it as well.
Through this one person I started to meet several others, and over the last four years my Facebook friends has slowly became more and more people affected my Hydrocephalus than people that I actually know. It sounds really weird, to both before who don't have the condition and even some people who do but it's been great always have someone to talk to if it's just something that someone without the condition won’t understand. Almost right away because of seeing the Facebook activity and having people with Hydrocephalus seeing mine, I quickly started to realize that a lot of things that I didn't think had anything to do with the condition is actually really common with it.
There are things that I didn't know for sure that had to Hydrocephalus but in the back of my mind suspected it for years. Some of those things included my lack of organization, problems with studying and short term memory. It turns out that a lot of the problems that I've had have to do with Nonverbal learning disability (not just Hydrocephalus).
You can learn about a lot of what Hydrocephalus or neurological disorders in general can cause just by searching for it online, though it might take a while and you really need to know what to look for. You can also find out about it with any of my blog posts that tagged with "brain injury side effects". It might sound kind of harsh by just putting it all under the subject under that one subject, because a lot of people with neurological disorders hate being thought of as having a brain injury. But a lot of the problems that people with anything having to do with neurological disorders are the same for people with traumatic brain injuries. It might depend on how you think of it, but having pressure on our brains (at least people with Hydrocephalus) and then having a medical device placed in our brains has to have some kind of damage to our brains, no matter how minor it is.
Personally, I think it's great to understand myself from information that has either been looked up by a Facebook friend, what I appreciate knowing even more is the little things that you might only be able to find out about by talking to others.
It's all stuff that I would have really liked to find out a lot earlier, but it's still comfortable to know that quirks that I had as a kid, that I never knew anyone else who had deal with it wasn't just me. It's sad at the same time but it’s comforting to know that I wasn't the only kid who would constantly lose jackets, school supplies and unfortunately a backpack once in a while. It's comforting knowing that I wasn't the only kid that had a hard time telling right from left, and had a reputation from getting lost and being left behind on the occasional field trip (I hope). Also that I wasn't the only kid who took forever to learn how to tie my shoes, and desperately try to hide it until I finally caught on. It's comforting to know that I wasn't the only kid (and adult) to constantly got crap for dragging my feet and not "walking straight".
The last thing that I mentioned sounds kind of weird and probably something that I could and should probably have been able to control. At least with dragging my feet usually it's something that I could help but I would have to really constantly have to focus on it. It's not something that I can prove but the first "Hydro peep" that I met on Facebook has a "Tennis shoe" theory. He's always had a problem with dragging his feet too, and his shoes are proof that he drags one for more than the other. I've always known that I have a problem with dragging my feet but it wasn't until around the time that I started having more major problems with Hydrocephalus that someone pointed that I tend to drag my one foot more than the other. The theory is that the foot opposite of the shunt is the weaker side so the foot on the opposite side of the body is more likely to be dragged.
When it comes not being able to walk straight, it has to do with my ankles. It's caused my abnormal muscle pull, the closest thing to it that is commonly known is being "clubfooted" but the only images you would find on Google is severe cases. The ankles and feet don't have to be crooked to be described at that though. My ankles still aren't straight though, and I would get crap for it because it was close enough to being straight, that people thought that I was doing it just because I was "lazy". Constantly dragging my foot along with that didn't exactly help my case. It's most common with people with Spina Bifida, Cerebral Palsy, and Dandy Walker Syndrome. I don't have any of these conditions that I know of at least though, just Hydrocephalus. It's not uncommon with kids with another condition (like Hydrocephalus) to have it either, and it can be caused by other medical problems that aren't necessarily common muscle or neurological disorders. It can be fixed by leg braces and surgery, but both of them might not work. Braces were never mentioned as a option, and I didn't find out it could have been until I had help finding out about the surgery. I personally didn't have the surgery to fix it, and I only regret not wearing the braces. The surgery is controversial but it's still a pretty common surgery, where the ankles are broken and screws are put in to straighten them. I'm glad that I didn't have to go through that and I understand why my parents made the decision more now than I ever did as a kid.
When I was 17 I knew very little about Hydrocephalus, even if it was something that I had since I was at least a toddler. The main reason for this was because I had only had one surgery, the shunt placement when I was about a year and a half. I knew that I had a shunt and where it was. I understood that I was dependent on it and what I shouldn't do to protect it. Different neurosurgeons advise their patients their parents to avoid different activities, and for me it was only one thing. My neurosurgeon told my parents that I shouldn't play contact sports. I also knew what my major shunt malfunctions so if there was ever a emergency with it that my parents and teachers (in Elementary school at least) weren't around then I would know what to recognize so I could alert someone right away. Thankfully it didn't happen during my childhood, but I was better off knowing it than taking a risk. I knew that my motor skills, and lack of muscle control had to do with it and that's definitely the hardest part for me, both now and then. I also always knew that I would need surgery at some point but I also figured it would happen in my childhood, and it never did. It didn't really get me down; it was just always something that was in the back of my mind but not something that I thought to hard about it.
It was my senior year of high school that I started to look more into Hydrocephalus. The site that helped me begin to learn about it the most and gave me a glimpse into the lives of people of others with the condition was Hydrocephalus Association. Just ten years there were still very few Hydrocephalus foundations and at the time HA was the only major one I could find. I did some serious lurking on Hydrocephalus/brain forums and e-mail groups but very rarely said anything. My main reason that I was hesitant to post was that I was having no problems with my shunt that I knew of and compared to how long the average shunt lasts before it malfunctions in some way my shunt was (and is) older than dirt. I wouldn't find out about all the smaller daily problems associated with Hydrocephalus until a lot later on with social media. If I would have known about the daily problems, and that I'm not the only one who has a shunt that has lasted far long that expected than I'm sure I would have taken advantage of at least the forums. I didn't look much farther into condition for several more years after that. I had no major problems at all until a few years ago so I had no reason to.
I had a few people with Hydrocephalus add me on Myspace because I mentioned it on my profile, but we but I would avoid conversation because I felt like telling anyone else with the condition how old my shunt was would make me look like a poser. I'm not sure if he was my first Facebook friend with Hydrocephalus but he was the first one I could remember at least. Around the time I started to have problems with my shunt request I got a friend request. Even if I don't know the person, I usually like to give people a chance to tell me why they decided to add me. With this person, I ended up not needing to ask once I took a look at his profile. He had everything I needed to know to keep him around in his "about me" section. He mentioned in it in his about me section that he has Hydrocephalus and that his current shunt has lasted him over two decades so far, and that the shunt that he had before that was one that he got as a kid. He was born in the sixties, during the first decade after the first couple of shunts started to be used. At the time he was born only 5% babies born with Hydrocephalus survived. It's the opposite today, but without sugar coating it people still die from Hydrocephalus or complications. It's definitely not a death sentence but it's not a condition that cannot be taken seriously and it's something that has effects of people's daily lives. It may be because of pain, but there are many other complications from it as well.
Through this one person I started to meet several others, and over the last four years my Facebook friends has slowly became more and more people affected my Hydrocephalus than people that I actually know. It sounds really weird, to both before who don't have the condition and even some people who do but it's been great always have someone to talk to if it's just something that someone without the condition won’t understand. Almost right away because of seeing the Facebook activity and having people with Hydrocephalus seeing mine, I quickly started to realize that a lot of things that I didn't think had anything to do with the condition is actually really common with it.
There are things that I didn't know for sure that had to Hydrocephalus but in the back of my mind suspected it for years. Some of those things included my lack of organization, problems with studying and short term memory. It turns out that a lot of the problems that I've had have to do with Nonverbal learning disability (not just Hydrocephalus).
You can learn about a lot of what Hydrocephalus or neurological disorders in general can cause just by searching for it online, though it might take a while and you really need to know what to look for. You can also find out about it with any of my blog posts that tagged with "brain injury side effects". It might sound kind of harsh by just putting it all under the subject under that one subject, because a lot of people with neurological disorders hate being thought of as having a brain injury. But a lot of the problems that people with anything having to do with neurological disorders are the same for people with traumatic brain injuries. It might depend on how you think of it, but having pressure on our brains (at least people with Hydrocephalus) and then having a medical device placed in our brains has to have some kind of damage to our brains, no matter how minor it is.
Personally, I think it's great to understand myself from information that has either been looked up by a Facebook friend, what I appreciate knowing even more is the little things that you might only be able to find out about by talking to others.
It's all stuff that I would have really liked to find out a lot earlier, but it's still comfortable to know that quirks that I had as a kid, that I never knew anyone else who had deal with it wasn't just me. It's sad at the same time but it’s comforting to know that I wasn't the only kid who would constantly lose jackets, school supplies and unfortunately a backpack once in a while. It's comforting knowing that I wasn't the only kid that had a hard time telling right from left, and had a reputation from getting lost and being left behind on the occasional field trip (I hope). Also that I wasn't the only kid who took forever to learn how to tie my shoes, and desperately try to hide it until I finally caught on. It's comforting to know that I wasn't the only kid (and adult) to constantly got crap for dragging my feet and not "walking straight".
The last thing that I mentioned sounds kind of weird and probably something that I could and should probably have been able to control. At least with dragging my feet usually it's something that I could help but I would have to really constantly have to focus on it. It's not something that I can prove but the first "Hydro peep" that I met on Facebook has a "Tennis shoe" theory. He's always had a problem with dragging his feet too, and his shoes are proof that he drags one for more than the other. I've always known that I have a problem with dragging my feet but it wasn't until around the time that I started having more major problems with Hydrocephalus that someone pointed that I tend to drag my one foot more than the other. The theory is that the foot opposite of the shunt is the weaker side so the foot on the opposite side of the body is more likely to be dragged.
When it comes not being able to walk straight, it has to do with my ankles. It's caused my abnormal muscle pull, the closest thing to it that is commonly known is being "clubfooted" but the only images you would find on Google is severe cases. The ankles and feet don't have to be crooked to be described at that though. My ankles still aren't straight though, and I would get crap for it because it was close enough to being straight, that people thought that I was doing it just because I was "lazy". Constantly dragging my foot along with that didn't exactly help my case. It's most common with people with Spina Bifida, Cerebral Palsy, and Dandy Walker Syndrome. I don't have any of these conditions that I know of at least though, just Hydrocephalus. It's not uncommon with kids with another condition (like Hydrocephalus) to have it either, and it can be caused by other medical problems that aren't necessarily common muscle or neurological disorders. It can be fixed by leg braces and surgery, but both of them might not work. Braces were never mentioned as a option, and I didn't find out it could have been until I had help finding out about the surgery. I personally didn't have the surgery to fix it, and I only regret not wearing the braces. The surgery is controversial but it's still a pretty common surgery, where the ankles are broken and screws are put in to straighten them. I'm glad that I didn't have to go through that and I understand why my parents made the decision more now than I ever did as a kid.
Edit: We weren't charged for the appointment. But my Parents would have had to pay for the braces, if that was a even a option at the time. There was a 23 year gap between when the surgery would have happened, and when I found the information on it.
I've already got in mind what I'm going to be writing for my next couple of posts, and I needed to write this post to make any of it make much sense. Thanks for reading, and if this is the first time you've read one of my blog posts or only have a few times in the past, I promise most of them isn't this long :)
More information on foot and ankle deformities
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3221758/
Pediatric Hydrocephalus Foundation
http://www.hydrocephaluskids.org/wordpress/
Hydrocephalus Foundation
http://www.hydroassoc.org/
Information on shunts
http://neuroanimations.com/Hydrocephalus/Shunts/VP_Shunt.html
Teacher's guide to Hydrocephalus,including a lot of information I wish was more available when I was a kid
http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf
I've already got in mind what I'm going to be writing for my next couple of posts, and I needed to write this post to make any of it make much sense. Thanks for reading, and if this is the first time you've read one of my blog posts or only have a few times in the past, I promise most of them isn't this long :)
More information on foot and ankle deformities
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3221758/
Pediatric Hydrocephalus Foundation
http://www.hydrocephaluskids.org/wordpress/
Hydrocephalus Foundation
http://www.hydroassoc.org/
Information on shunts
http://neuroanimations.com/Hydrocephalus/Shunts/VP_Shunt.html
Teacher's guide to Hydrocephalus,including a lot of information I wish was more available when I was a kid
http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf
Friday, September 7, 2012
September is hydrocephalus awareness month :)
September is national hydrocephalus awareness month,which was helped passed in 2009 by the pediatric hydrocephalus foundation.Although I'm not doing as much as I want to or even as much as I did last year,I'm still taking some part in it.I changed my facebook cover photo and profile picture to hydrocephalus related pictures.Also I've been writing status updates and posting pictures.I'm also trying to use this month to start talking about my condition more publicly,instead of just online.The reason for that is to let people know why I act differently,what I really deal with,and that there might be a point where I'll need brain surgery again,and it might be very sudden.
Awareness is important for any medical conditions,and even more for conditions that are invisible.A "invisible" condition is one where you can't tell someone has it by looking at them.You can't see my scars and the only time someone could notice that I've had brain surgery was right after I had it as a toddler.You can see my shunt on my neck and collar bone,but it could be missed or mistaken for something else like a vein.The ways that it effects me are usually mistaken for normal problems,or even just not caring.
Another important reason for awareness is for people who are uneducated or just ignorant about medical conditions.Other than hydrocephalus some of these include down syndrome,and lupus.A common misconception about hydrocephalus that's it's been cured because of how well the treatment can work when it comes to being mentally function able.Also because the treatment usually shrinks the skull back to the normal size or close to it.It's something that's usually seen and made fun of because people think of hydrocephalus the way you would see it on google images.The majority of pictures on google that is tagged with hydrocephalus are other children and some adults with extreme hydrocephalus.Then most of them were from before sixty years ago when the first effective shunt was first invented,and in third world countries.That's what causes people to believe it's cured,and they wouldn't be able to spot someone with hydrocephalus because that's the only thing that comes to mind.Extreme hydrocephalus is also commonly joked about as "waterheads" or involved in urban legends.A well known comedian who has made a joke about "waterheads" is Larry the cable guy,who also helped give a lot of the impression that people with hydrocephalus are mentally retarded.
A personal and important reason for awareness for me is to make people connect my name with hydrocephalus,and I don't mean only think of me for that.So that when they meet someone else with it,or may have it,or if someone else that they known is dx'd with it they will know who will come to for questions and support.I don't mean coming to me and asking questions that they should ask a nsg.Instead having someone to talk to that knows what it's like to have the condition,on top of asking the doctor questions as well.
Thanks for reading,and I'm hoping to post more on a regular basis instead of skipping weeks because the melon season should be coming to a close in about a month.
Awareness is important for any medical conditions,and even more for conditions that are invisible.A "invisible" condition is one where you can't tell someone has it by looking at them.You can't see my scars and the only time someone could notice that I've had brain surgery was right after I had it as a toddler.You can see my shunt on my neck and collar bone,but it could be missed or mistaken for something else like a vein.The ways that it effects me are usually mistaken for normal problems,or even just not caring.
Another important reason for awareness is for people who are uneducated or just ignorant about medical conditions.Other than hydrocephalus some of these include down syndrome,and lupus.A common misconception about hydrocephalus that's it's been cured because of how well the treatment can work when it comes to being mentally function able.Also because the treatment usually shrinks the skull back to the normal size or close to it.It's something that's usually seen and made fun of because people think of hydrocephalus the way you would see it on google images.The majority of pictures on google that is tagged with hydrocephalus are other children and some adults with extreme hydrocephalus.Then most of them were from before sixty years ago when the first effective shunt was first invented,and in third world countries.That's what causes people to believe it's cured,and they wouldn't be able to spot someone with hydrocephalus because that's the only thing that comes to mind.Extreme hydrocephalus is also commonly joked about as "waterheads" or involved in urban legends.A well known comedian who has made a joke about "waterheads" is Larry the cable guy,who also helped give a lot of the impression that people with hydrocephalus are mentally retarded.
A personal and important reason for awareness for me is to make people connect my name with hydrocephalus,and I don't mean only think of me for that.So that when they meet someone else with it,or may have it,or if someone else that they known is dx'd with it they will know who will come to for questions and support.I don't mean coming to me and asking questions that they should ask a nsg.Instead having someone to talk to that knows what it's like to have the condition,on top of asking the doctor questions as well.
Thanks for reading,and I'm hoping to post more on a regular basis instead of skipping weeks because the melon season should be coming to a close in about a month.
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