Showing posts with label Disabled children. Show all posts
Showing posts with label Disabled children. Show all posts
Wednesday, May 20, 2020
Paraphrasing the Hydrocephalus Association's Teacher's Guide: Social and emotional issues (Part 1)
For anyone that I've met in the last 5 years that's reading this, or otherwise is coming across my blog for the first time I started writing this blog several years ago about growing up with a neurological disorder, hydrocephalus. I eventually started writing about a wider range of topics. After a few years of writing consistently I needed to take a short break from it. I attempted to start back up soon after but I was burned out on it still, and ended up taking a much longer break than I expected. The reason behind had to do with personal problems that caused me to at least think that I had to drop a lot of things to deal with it. What gave me the inspiration to start back up, ended up being more changes in my personal life. The main thing is befriended and having the opportunity to help a younger person with that has the same neurological disorder that I do.
I'm going to be paraphrasing the Hydrocephalus Association's teachers guide section by section, while writing about similar topics and posts that I didn't finish before taking a break. I'm going to go through it backwards because the topics that seem to be least known is at the end of the guide. I'm going to start with the Social and emotional issues section, and the main topics are isolation, social cues. Skills, and depression. I’m going to focus on isolation and depression, and I'll be writing another post soon that will focus on social cues and skills. My goal is to keep these posts short, and easier to read.
It's common with children with disabilities in general to feel socially isolated. It's even more common with children with learning disabilities, because problems with social cues can be involved, which can cause them to feel left out or feel different. The problems with social cues and skills can cause them to have fewer friends, and cause them to having a harder time interacting with their peers. It might not be obvious either because most of their friendships may be superficial. They may also try to make up for it by only socializing with adults.
The certain result of isolation is anger. This is mentioned two different times in the guide. The first time saying that feeling left out or different can lead to emotional problems. The second time it's a lot clearer. For some children with hydrocephalus the anger can result in violent outbursts that may seem irrational or frightening. Partially because of this it's common for children with hydrocephalus to be misdiagnosed with ADD or emotional disturbance. It's also common with children with hydrocephalus, and likely other disabilities to develop depression or anxiety disorders. Part of the reason for developing depression may be having little hope that their situation would improve.
Personally my reaction to a combination of isolation and consistent bullying in Elementary School was not making much of an effort of coming out of my shell which probably made the isolation part worse. Having a speech impediment, and the slow process to learn how to speak well enough to be understood by most people didn't help other. I had a sudden and obvious situation in the 5th grade that caused me to realize how people saw me, even if it was obvious to me as soon as I started school because I had barely started learning how to talk, and a few other things that I had trouble with at the time that was obvious to other kids, and obvious to me that it wasn't something that was normal for school aged children. My reaction to both the situation in the 5th grade, and the years of isolation of bullying before that was rebellion. I was definitely very angry too, but I didn't really express that anger in obvious ways until I was a teenager. For me the rebellion was pretty low key, but seemed more intense at least because of growing up in the church, and not seeing a huge difference between excessive swearing, and what other kids without, or sometimes with the same background would have done if they went out of their way to rebel.
I had some realizations in early high school that made things even worse for me, and looking back I assume that hormones didn't help much either. I became angrier while still not making it obvious. My reaction was becoming really self-conscious, I already was some, but it got worse. I had become a lot more social in Junior High. But reacting to my realizations made me far less social, hormones probably didn't help with this either. It resulted in more anger that was far more obvious, and more spontaneous and frequent. I ended up reaching out to someone that managed to calm me down a lot in general before I finished high school.
Source: https://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf
Wednesday, July 9, 2014
Reflection on journey in struggling with low self esteem/ self hatred with hopes it will help someone else.
At this point I've been writing for two and a half years, and I've covered
most of what I've wanted to cover a long time ago. I intend on keeping it up
until I manage to completely run out of topics, or if something happens that
stops me from getting internet access. This along with other recent topics is
something that's been bothering me for a while. Instead of venting I want
others to get something out of it, especially if it's someone who younger or
just not as self-aware yet.
Through several different stages in life I've become more and more aware of what people think of me and deal with self-hatred on different levels. I've known that I'm different for as long as I can remember but it was when I started school that I learned that my differences could and would be taken advantage and used against any different forms including physical. Over time in Elementary School I realized that my good friends were few and far between. I at least thought that it was because who I am and the major differences seen in me. I now know that people with Hydrocephalus even very young tend to be really socially awkward and anxious, so that probably part of the problem as well. Except for my speech impediment what hit the hardest at the time was in Physical Education when I was always the kid that was last to be picked and had to be forced onto a team. I wouldn't have wanted "me" to be on a sports team either, and I always dreaded having to play anyway. It was just a reminder of the differences I have/had because of Hydrocephalus. I had to acknowledge my shunt when I was asked to play a contact sport but it was almost something that went farther than that and it was almost always something that bothered me.
The second major stage was when I was in the Fifth grade and without my Parent's knowledge or letting me know what was happening I was sent to a Elementary age Track meet and had to race with other special needs kids, except what I thought at the time was obvious and still think to a certain point was that I was far more functioning than all the others. I don't mean disrespect to anyone reading this but except for a couple Special Education classes each year for my learning disability specifically and later on organizational problems I was in normal classes with everyone else and even the Special Education classes including mostly of peers where there's nothing different except for a problem with learning. Of course I don't know what most of my peers thought of me but that definitely caused me to really start to be paranoid about it. Someone that I've mentioned before and did the opposite was the specialist for Adaptive Physical Education when I was in the Fifth grade and Junior High. He really showed a difference in the way he spoke to and treated me compared to another kid with more major disabilities especially when it was a one on one session. I purposely act out more and rebel in the "goodie two shoes" way that I had before because it was obvious to me that it wasn't helping me making any friends. If I would have waited just more year, I would have realized that my good friends in Junior and High school would have accepted me the way I was before. It would have probably saved me a lot of pain later on.
Through several different stages in life I've become more and more aware of what people think of me and deal with self-hatred on different levels. I've known that I'm different for as long as I can remember but it was when I started school that I learned that my differences could and would be taken advantage and used against any different forms including physical. Over time in Elementary School I realized that my good friends were few and far between. I at least thought that it was because who I am and the major differences seen in me. I now know that people with Hydrocephalus even very young tend to be really socially awkward and anxious, so that probably part of the problem as well. Except for my speech impediment what hit the hardest at the time was in Physical Education when I was always the kid that was last to be picked and had to be forced onto a team. I wouldn't have wanted "me" to be on a sports team either, and I always dreaded having to play anyway. It was just a reminder of the differences I have/had because of Hydrocephalus. I had to acknowledge my shunt when I was asked to play a contact sport but it was almost something that went farther than that and it was almost always something that bothered me.
The second major stage was when I was in the Fifth grade and without my Parent's knowledge or letting me know what was happening I was sent to a Elementary age Track meet and had to race with other special needs kids, except what I thought at the time was obvious and still think to a certain point was that I was far more functioning than all the others. I don't mean disrespect to anyone reading this but except for a couple Special Education classes each year for my learning disability specifically and later on organizational problems I was in normal classes with everyone else and even the Special Education classes including mostly of peers where there's nothing different except for a problem with learning. Of course I don't know what most of my peers thought of me but that definitely caused me to really start to be paranoid about it. Someone that I've mentioned before and did the opposite was the specialist for Adaptive Physical Education when I was in the Fifth grade and Junior High. He really showed a difference in the way he spoke to and treated me compared to another kid with more major disabilities especially when it was a one on one session. I purposely act out more and rebel in the "goodie two shoes" way that I had before because it was obvious to me that it wasn't helping me making any friends. If I would have waited just more year, I would have realized that my good friends in Junior and High school would have accepted me the way I was before. It would have probably saved me a lot of pain later on.
Thursday, June 19, 2014
Importance of therapies early on instead of later from personal experience
I meant to write this on Friday but I've been keeping busy at work so I haven't had much time to put a post together. I've also been nervous about writing this specific post so I've been putting it off but I feel it's something that really has to be said. I spent the majority of my childhood in Speech Therapy and was given the option to stop my Freshman year of High School even if I was no where near finishing the program, and I definitely wouldn't have before graduation. I was given that option because I was pulled out of class for Speech Therapy and it that itself was a bigger problem than it was in Junior High and especially Elementary School. I sort of regret of not taking Speech Therapy for the rest of High School but now that I've been backsliding again it might not have mattered later on. My speech impediment hasn't stopped me from finding jobs. I went through a few jobs before settling with Kroger and got promoted during the time I've been having Hydrocephalus related medical problems and while my speech has been backsliding.
Even though I'm not willing to go into much detail about it writing on a public site, what I regret now is the lack of Occupational Therapy when a lot of the focus was on Speech Therapy. I had it in Preschool and then during a two year period when I was in the 5th grade and into Junior High in the form of Adaptive P.E but I wish I would have been offered more. I'm not sure how much the school district offered though, and my parents wouldn't have been able to afford if it wasn't something they would have had to pay for. I'm able to do that majority of my job without a problem but I run into problems when I have to do something that has to do with fine motor skills. I've been offered Occupational Therapy recently but working 5 or 6 days a week and almost full time it's something I don't have time for. I need to keep my availability open as much as possible too so it would be tough to schedule it on a regular basis.
The point of this post is a warning to Parents of children with Hydrocephalus or younger people with it to consider Occupational Therapy if it's not already being provided because problems fine motor skills and other similar problems will just be worse in the work force. I know that there's a lot of people with Hydrocephalus and with some it's obvious it wouldn't be possible early on. But with many people with Hydrocephalus it is possible to lead a pretty normal life. Thanks for reading, and I helped and encouraged others. If you want to know about my specific struggles with fine motor skills at work feel free to send me a E-mail or contact me on the social networking sites where I post links to my blog.
http://kidshealth.org/parent/system/ill/occupational_therapy.html
http://kidshealth.org/parent/system/ill/speech_therapy.html
http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf
Even though I'm not willing to go into much detail about it writing on a public site, what I regret now is the lack of Occupational Therapy when a lot of the focus was on Speech Therapy. I had it in Preschool and then during a two year period when I was in the 5th grade and into Junior High in the form of Adaptive P.E but I wish I would have been offered more. I'm not sure how much the school district offered though, and my parents wouldn't have been able to afford if it wasn't something they would have had to pay for. I'm able to do that majority of my job without a problem but I run into problems when I have to do something that has to do with fine motor skills. I've been offered Occupational Therapy recently but working 5 or 6 days a week and almost full time it's something I don't have time for. I need to keep my availability open as much as possible too so it would be tough to schedule it on a regular basis.
The point of this post is a warning to Parents of children with Hydrocephalus or younger people with it to consider Occupational Therapy if it's not already being provided because problems fine motor skills and other similar problems will just be worse in the work force. I know that there's a lot of people with Hydrocephalus and with some it's obvious it wouldn't be possible early on. But with many people with Hydrocephalus it is possible to lead a pretty normal life. Thanks for reading, and I helped and encouraged others. If you want to know about my specific struggles with fine motor skills at work feel free to send me a E-mail or contact me on the social networking sites where I post links to my blog.
http://kidshealth.org/parent/system/ill/occupational_therapy.html
http://kidshealth.org/parent/system/ill/speech_therapy.html
http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf
Friday, January 10, 2014
Customer service experience with a kid with a neurological disorder
I'm going to write about something that was inspired by a positive experience at my job during my shift tonight (Wednesday). I had something else planned but I would have needed to include research and I need to replace my laptop so it would have been hard to do. When I was growing up I knew very few people with neurological disorders, and even less people that were around my age with them. If I knew anyone with Hydrocephalus, I wasn't aware of it. I was a couple of high school and had just started to work at my second job when I met my first close "brain buddy". He has Cerebral palsy, and knowing him has helped me recognize it in other people. I've known others with cp since before I knew him, but they usually had a worse case or I didn't realize what was wrong with them until later. Other neurological disorders can show the same symptoms too though, including Hydrocephalus, strokes and seizure disorders.
About half way into my shift during the busiest part of the evening I walked out of the backroom onto the produce sales floor getting ready to write a list for what needed to be on my next cart or two. A kid that looked like he was 10 or 11 stopped me and asked me if I could check the price on a bottle of sparkling juice that we have during the holiday season. I told him that I had a scanning gun and I would be right back. I saw him walk forward and noticed his limp and that it affected his whole right side, especially his arm. I recognized it right away as having to do with Cerebral palsy or another neurological disorder. I felt bad for him, knowing the challenges that my friend has dealt with and the challenges that people with neurological disorders in general have to deal with from personal experiences. Rather it's being more likely to be bullied, the way people see him or different kind of therapies. I went to the department back room to discover that someone had taken my scanning gun so I told him that I needed to go to the front but I would be back in a minute. I went and got a gun from behind customer service and started to sign into it as I started to walk back in his direction, and I was surprised to see that he had walked across the store and was waiting for me in front of the registers. It ended up being too much and I put it back for him. At some point during this time I noticed what looked like a shunt scar on the top of his head, I noticed because of his short hair cut. I didn't ask because I didn't want to find out I was wrong or point out something he may not want to think about. If he does have it, it might have been encouraging to meeting someone else with it, but I'm sure it was obvious that I at least have a neurological disorder of some kind too. Something that I didn't think of until after he and his family left was that if he does have a shunt it would have probably be visible in his neck area and even if I was face to face with him multiple times I didn't think to look. I ended up running into him one last time, somewhat on purpose because I wanted to do something to make his day without him realizing it was because I felt bad him. I still had the scanning gun in my hand and helped him check a couple prices so he could find a different holiday drink.
About half way into my shift during the busiest part of the evening I walked out of the backroom onto the produce sales floor getting ready to write a list for what needed to be on my next cart or two. A kid that looked like he was 10 or 11 stopped me and asked me if I could check the price on a bottle of sparkling juice that we have during the holiday season. I told him that I had a scanning gun and I would be right back. I saw him walk forward and noticed his limp and that it affected his whole right side, especially his arm. I recognized it right away as having to do with Cerebral palsy or another neurological disorder. I felt bad for him, knowing the challenges that my friend has dealt with and the challenges that people with neurological disorders in general have to deal with from personal experiences. Rather it's being more likely to be bullied, the way people see him or different kind of therapies. I went to the department back room to discover that someone had taken my scanning gun so I told him that I needed to go to the front but I would be back in a minute. I went and got a gun from behind customer service and started to sign into it as I started to walk back in his direction, and I was surprised to see that he had walked across the store and was waiting for me in front of the registers. It ended up being too much and I put it back for him. At some point during this time I noticed what looked like a shunt scar on the top of his head, I noticed because of his short hair cut. I didn't ask because I didn't want to find out I was wrong or point out something he may not want to think about. If he does have it, it might have been encouraging to meeting someone else with it, but I'm sure it was obvious that I at least have a neurological disorder of some kind too. Something that I didn't think of until after he and his family left was that if he does have a shunt it would have probably be visible in his neck area and even if I was face to face with him multiple times I didn't think to look. I ended up running into him one last time, somewhat on purpose because I wanted to do something to make his day without him realizing it was because I felt bad him. I still had the scanning gun in my hand and helped him check a couple prices so he could find a different holiday drink.
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, September 6, 2013
Putting things into perspective..
This post is inspired by it being hydrocephalus awareness
(September) and a recent loss of few different people with mutual friends
through the hydrocephalus community on Facebook, one of them being someone that
I had connected with a few years ago and spoke to a few times. Hydrocephalus
has a much survival rate than it used to have 50 years ago. When the modern
shunt was first invented in the early sixties the survival rate was about 5%
and now it's basically the opposite with the survival rate being 95%. It's not
a death but people still die from it and I've lost a few that had spoken to
online, and some have their lives changed traumatically. I have to do with a
lot of pain right now at least partially because of hydrocephalus but I am very
fortunate compared to others.
It's also a lot common than people think
it is too, it’s just that it's a mostly invisible condition so unless you know
what to look for it's a condition where you might never notice that the person
has it or even if something is wrong with them. Hydrocephalus impacts everyone
differently and with some people you can tell that something is wrong a lot
more than others. Personally with me there are things about me where you can
tell pretty well that there is something different with me (especially with my
speech impediment and how I look).
1 in 500 babies are born with
hydrocephalus, and another 6,000 develop it within their first two years of
life (like me). Countless more develop it later on in life due to illness,
injury or other reasons and some that are unknown. It's the most common reason
for brain surgery in children, and the annual costs for hydrocephalus related
procedures alone are more than 2 billion dollars.
Shunts are thought to be a
"cure" by a lot of people who uninformed and that includes some
people who have a shunt, or the family members of the person with one. It's a
treatment and one that has few improvements in the last 60 years and those
improvements has been mostly been few and far between. Some of those
improvements (specifically programmable shunts) have caused more problems
although with some people those problems are worth how much it helps compared
to fixed valves. However with some people who have had fixed valves their whole
lives their bodies have a hard time adjusting to programmable shunts if it
happens at all. I don't mean to scare people by saying this, but I want it to
be taken as a warning just in case. I wouldn't say it if I haven't heard the
same thing from multiple people and have a link telling the story from one of those
people. I'm not a medically professional in any way, and you shouldn't take
advice from me like if I was one of them. What I say on my blog and basically
anywhere else (social media etc etc) should only be taken as someone who has
lived life with the condition and have spoken to many people who have it too.
Although the shunt failure was a lot worse
when they were first invented and the risk of serious injury was a lot worse it
still is a major problem today. Half of all shunts fail during the first 2
years, and after that the failure rate just keeps on going up so unfortunately
we're never in a "safe-zone". Nearly half of all shunt operations are
due to malfunctions, and another 12% are due to infections. Shunt operations
are performed every 15 minutes on average in the United States alone. Shunts
can cause many problems, and most of those things cannot be corrected by
surgery, it's just something that we have to live with.
There is a alternative to shunts, but very
few people qualify for it and it too has a high failure rate. The procedure is
called a Endoscopic third ventriculostomy and it's basically having a
hole put into the wall of a hole put into the third ventricle of the brain so
that the excess spinal fluid can be drained that way instead.
It's also common to think that after you put the shunt in
that we are just "fine". There are many challenges we have to face on
a daily basis because of Hydrocephalus and I have written about many of them.
The problem is that a lot of the problems we have (specifically pain and
neurological issues) are invisible so you don't notice to them and very often
it's not understood by a lot of people. A lot of times it results with people
just thinking that we are lazy or not trying hard enough. In some cases it will
cause bullying, even beyond childhood. I've personally had a lot of trouble
with bullying at work, more at the job that I'm currently at more than any
other. The time period I've been working there has had a lot to do with it (6
years as of this week, and the most I've stayed at any other job was a little
over 2 years). But still if I would have left after 2 years or just counting
the last 2 years that I've been working in my current department I still would
have had to deal with a excessive amount of bullying compared to any other job
I've ever been at. Some of it have been dealt with, but others can’t be proven
that easily or was brought up to management at some point just to be blown off.
We have to deal with a lot of problems growing up and then
as adults that doesn't necessarily isn't directly caused by hydrocephalus, but
it caused by having neurological problems in general. One of the most common
problems is learning disabilities, most commonly nonverbal learning disability
which is also very common with children and adults on the Autism spectrum or
people with attention deficit disorder. So we are commonly thought to have or
are actually misdiagnosed as having one or the other.
Another common problem is bullying as
adults too but more commonly as children. Basically it's done because of how
we're different and children who tend to be the bully look for kids who are
different or are just weaker. I
personally went through for 5 years of physically bullying started in
Kindergarten and ending in Fourth grade. The only times I was asking about it
was when the main kid doing the kid doing the bullying was caught a few times.
The campus monitor would always ask us if he was bullying me but they
would only ask when I was in front of him so I would always agree with him
saying "we're just playing". She would for some reason I don't
understand now accept the answer and not look into it further. I'm not sure if
I would have told her the truth right away if she would just pulled me to the
side and asked again later on, but I did always really wish that she would
have. I never told any teachers or my parents because of threats that was made
to me if I would have ever told and that I know of it was not something that
was always seen by teachers. I know some of my fellow classmates knew about it,
but either nothing was done or they approached me about it but never by trying
to force me to tell a teacher or them telling a teacher themselves. What
finally caused them to be caught was when my mom left my younger brother (who
was 4 at the time) with me at the school while she went home to for a few
minutes (we lived across the street of the Elementary school, and we still do).
What happened next was a normal thing for me but not something that had
happened with my brother around. When my mom left the group of kids came from
wherever they were across the street and jumped us. My mom came back catching
them in the middle of it and let the principal know what was
happening. They got in trouble and after that day I never had any major with
those kids again and even eventually became pretty good friends with a couple
of them. I regret not telling anyone before that day, just because my brother
was dragged into the situation along with me and he ended up being physically hurt
by a group of kids that were twice his age. It's not forgotten and probably
never will be, but at least most of those kids were forgiven a long time ago
even if it was never actually said. I'm not mad or holding any grudges at any
teachers or peers because especially with the teachers they didn't know what
was happening. Most of the time I was targeted was after school was normally
after school when nobody else was around anyway.
If you have a child with hydrocephalus or
any other disability or a caretaker of one like a teacher it's very important
to know the signs of bullying, and if you notice them to question the child if
possible on a one to one level. They might not admit it at first but the
response may indicate it even more so it's important to ask the child more than
once or at least keep a eye on what’s going on.
Another thing that a lot of people about
people don't understand about us is the emotionally problem that
comes with having hydrocephalus. This may include having a hard time showing emotions
when you should or having a hard time controlling them. Personally a problem
has been with anger, although I've have it under control more now than I ever
have before. A big part of it has to do with understanding it more, and that
has helped with a lot of things that has to do with hydrocephalus.
My biggest problem I ever had it with was
when I was going through puberty. Now it's pretty well known that people going
through that period of life has a lot of strange emotions. Imagine having those
emotions with a neurological disorder on top of it that causes emotionally
problems too. It's also about the age where a lot of us with Hydrocephalus
really begin to realize what people think of us, and often it's something that
is taken very hard. Most of time it's something that's not something that we
understand. I don't have any references for this when it comes to links, just
again my personal experiences and hearing other's experiences. In my case and
with many others it can cause us to become really angry at the world, depressed
and in some cases (like mine) have suicidal thoughts.
There's many other problems that come with
the condition that a lot of people don't understand and many of them I've
covered in other posts. You will also find a lot of them in the hydrocephalus
teacher's guide and other links I'll be posting below. Thanks for reading, I
hope I've helped you understand me, yourself or someone in your life a little
bit better. If you have something that you'll like me to talk about in the future
please don't hesitate to ask.
A lot of the facts I used was taken from
the Hydrocephalus Association Facebook page.
Pediatric Hydrocephalus
Foundation,specializing with families with children with hydrocephalus but
not necessarily just them.
More information of Third Ventriculostomy
Signs of being bullied
Signs of suicidal thoughts
Teen depression guide
Sunday, August 25, 2013
Attention needed from schools for children with Hydrocephalus (a view point of someone living with it)
Sorry I'm a few days late, I ended up working a really weird schedule this week and didn't have much time except for working and sleeping. I also had a hard time picking out a topic. I had some ideas but nothing that I could write a significant amount about it, and some that I feel would be going off too much off subject. I've decided to go back to a subject that I've talked about before. One of my main goals for this blog is to help people, and while I don't know about this from a parent's point of view I can write about this on a point of view of someone with the condition itself and from what my parent's have told me. I'm going to talking about what was does to keep me safe in Elementary school, and I realize that it's different for everyone. Some had more limitations because their childhood experiences with Hydrocephalus is a lot different, or because their parents or teachers were more cautious usually because it was a different time period.
With me most of what was done when I was participating in mainstream classes, I was unaware of until years later. I did have speech therapy until high school,and a few years of adaptive P.E, both in small groups or one on one along with a Individualized Education Program meeting each year. Each thing up until Special Ed classes starting in Middle school were things that I was pulled out of class for. So I still participated in regular P.E and it wasn't too obvious that I was getting help with either thing, although it's always been pretty obvious that I have a speech impediment, especially in Elementary school.
One thing that should be done with anyone with a shunt is that is either young or not be able to recognize their shunt malfunction symptoms is to have someone who knows what they are to look after the person. This includes parents,teachers or any other care taker. I didn't know that they were, and for years every time is was brought up I didn't know what they meant by it. Some did a better job than others and in some cases a lot better of a job, but with most it feels good now that they made a point to do that for me. Thankfully nothing major ever came up and except for the shunt placement as a toddler I had a surgery free childhood.
Another thing was that I couldn't play contact sports because if I got hurt it might have damaged my shunt. It might not sound fair to some people, but it was the one thing that my neurosurgeon told my parents I shouldn't do. I wasn't interested in playing sports anyway because of other physical limitations caused by Hydrocephalus. I learned a few years ago that many kids were left out completely out of P.E and had to sit out everyday. Most of these people were born a decade or two before me, and they were the first generation of kids to be born with Hydrocephalus to have survivors who could function, due to the invention of the modern day shunt. But there are some that are closer to my age who still had to sit out. My P.E teacher never had me sit out, instead she made rules that everyone had to follow that allowed me to play football, dodge-ball etc etc. The few times the activity was something that I wasn't supposed to do she made it a option for others to sit out too so I wouldn't be alone. If it something I needed help with due to physical limitations or not having depth perception when it came to gymnastics, I was it was offered help or given it without option.
The one thing that was done that I was hadn't been done, was when she (or the school) had been participate in the track and field day at one of the high schools in the district. They didn't explain to me what was going on at all, and neither did my parents or they wouldn't have let it happen. They had me participate in a run with the more severely disabled kids. I don't mean to offend anyone, but there's a lot more I'm capable of than some others with disabilities. At least in high school the reason I stayed in Special Education classes was because of problems not getting into habits, and organizational problems. If it wasn't for done I would have been taken out of those classes my Junior year. It really hurt being compared to people with more severe disabilities in that way now. It hurts a lot more when I get treated that way now, but that was a major part in realizing what people think of me.
I'll love to talk more about this subject either on social media or by e-mail. It's the same with other topics, but this is one of the subjects I would like to talk about again in the near future using other people's experiences. Thanks for reading.
Pediatric Hydrocephalus Foundation
http://www.hydrocephaluskids.org/wordpress/
With me most of what was done when I was participating in mainstream classes, I was unaware of until years later. I did have speech therapy until high school,and a few years of adaptive P.E, both in small groups or one on one along with a Individualized Education Program meeting each year. Each thing up until Special Ed classes starting in Middle school were things that I was pulled out of class for. So I still participated in regular P.E and it wasn't too obvious that I was getting help with either thing, although it's always been pretty obvious that I have a speech impediment, especially in Elementary school.
One thing that should be done with anyone with a shunt is that is either young or not be able to recognize their shunt malfunction symptoms is to have someone who knows what they are to look after the person. This includes parents,teachers or any other care taker. I didn't know that they were, and for years every time is was brought up I didn't know what they meant by it. Some did a better job than others and in some cases a lot better of a job, but with most it feels good now that they made a point to do that for me. Thankfully nothing major ever came up and except for the shunt placement as a toddler I had a surgery free childhood.
Another thing was that I couldn't play contact sports because if I got hurt it might have damaged my shunt. It might not sound fair to some people, but it was the one thing that my neurosurgeon told my parents I shouldn't do. I wasn't interested in playing sports anyway because of other physical limitations caused by Hydrocephalus. I learned a few years ago that many kids were left out completely out of P.E and had to sit out everyday. Most of these people were born a decade or two before me, and they were the first generation of kids to be born with Hydrocephalus to have survivors who could function, due to the invention of the modern day shunt. But there are some that are closer to my age who still had to sit out. My P.E teacher never had me sit out, instead she made rules that everyone had to follow that allowed me to play football, dodge-ball etc etc. The few times the activity was something that I wasn't supposed to do she made it a option for others to sit out too so I wouldn't be alone. If it something I needed help with due to physical limitations or not having depth perception when it came to gymnastics, I was it was offered help or given it without option.
The one thing that was done that I was hadn't been done, was when she (or the school) had been participate in the track and field day at one of the high schools in the district. They didn't explain to me what was going on at all, and neither did my parents or they wouldn't have let it happen. They had me participate in a run with the more severely disabled kids. I don't mean to offend anyone, but there's a lot more I'm capable of than some others with disabilities. At least in high school the reason I stayed in Special Education classes was because of problems not getting into habits, and organizational problems. If it wasn't for done I would have been taken out of those classes my Junior year. It really hurt being compared to people with more severe disabilities in that way now. It hurts a lot more when I get treated that way now, but that was a major part in realizing what people think of me.
I'll love to talk more about this subject either on social media or by e-mail. It's the same with other topics, but this is one of the subjects I would like to talk about again in the near future using other people's experiences. Thanks for reading.
Pediatric Hydrocephalus Foundation
http://www.hydrocephaluskids.org/wordpress/
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
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