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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.

Friday, December 27, 2013

Johnny Ramone's brain surgery

I'm going to try to start writing about celebrities with Hydrocephalus, or celebrities who has had brain surgery at some point. These tend to be my most popular topics and I really enjoy writing them. I have a couple Hydrocephalus ones in mind right now but I would have to more research into it, instead of putting it off until it's time to write. If I'm writing about a celebrity that actually has Hydrocephalus I'll mention it in the title. Although it's always possible with a brain injury it doesn't always happen, and I have no proof with it from what I've read about Johnny.

Johnny Ramone is the stage name of Johnny Cummings who played guitar for the American punk rock band Ramones for 22 years, starting from the time they started playing in 1974 until they broke up in 1996. Johnny and his band mates went by the name surname Ramone, which was inspired by Paul McCartney going by Paul Ramone for a short period of time before they became famous in the United States. Johnny Ramone passed away almost a decade ago from Prostate cancer. So I want to make it clear that even if I'm writing about someone who has passed away that his death and the brain surgery is not connected.

I found out about his brain surgery within the last couple of weeks and decided to look more into it. I was having a hard time finding information on it. The information that I kept on coming across was that he had gotten into a fight with a member of another punk band (Seth Macklin of Sub Zero). He was found unconscious and ended up needing 4 hours of delicate brain surgery.  The best article I found what the start of Chapter 5 of his autobiography. In it he said that he had been dropped off in front of his old apartment where his ex-girlfriend Cynthia Whitney (also known as Roxy Ramone) was sitting outside with a guy he didn't recognize. When he confronted her he ended up getting into a fight with the guy that was outside with Cynthia. He didn't remember getting into a fight, just waking up in a hospital, not knowing where he was. According to others who saw the fight Johnny had been kicked in the head multiple times. The result was a fractured skull and bleeding on the brain, which the doctors didn't think he would survive. Johnny didn't think that he had suffered any brain damage but others saw a difference in him. It did however make him more cautious of head injuries.

He had a take it easy for a while and it took a few months before he was able to start performing again. The next album that the Ramones released was inspired by what had happened, and was called "Too Tough to Die". He had a shaved head when he came back to perform which is why he wore a hat for a while. Thanks for reading :)

http://books.google.com/books?id=dBZlyEn5H1gC&pg=PT114&lpg=PT114&dq=johnny+ramone+brain+surgery&source=bl&ots=j9csxgfA-K&sig=ynuNDes2aeeJIwh3XrmUV5Jli54&hl=en&sa=X&ei=jFi1UunsEKOEygG75YCoAw&ved=0CGcQ6AEwBzgK#v=onepage&q=johnny%20ramone%20brain%20surgery&f=false

 http://www.beatleswiki.org/wiki/Paul_Ramon

 http://razmatazmag.com/?tag=johnny-ramone

Saturday, December 14, 2013

Finishing the second year of writing my blog and looking for subject ideas

On the 12th of next month it will be two years since I started this blog. I had trouble for the first year trying to post on a regular basis. At the very start I was trying to write twice a week, but within the first couple months I switched to once a week and it worked pretty well for a while. I ended stopping completely for a couple months and started up again about a year ago. I started up at every other Friday and more often than not that has worked well. It wasn't until the last couple months that I've started to have a hard time coming up with topics again. Some topics I'm picking especially my series of "Media views on Hydrocephalus" takes more time researching for the subject than actually writing it. The problem is I usually don't have time to do both when I get off work on Thursday and Friday nights. I'm going to at least try to start researching at an earlier time in the week so I'll be finished by the time Friday comes around. I still intend to continue writing this blog for as long as I can, even if it means a lot more guest blogs and cutting back how often I write again.

 I've stumbled across a lot of information researching topics that I probably wouldn't have found in any other way. I've met one of my main goals of writing this blog, and that was to help others. I've been able to communicate with some of them through social media so I'm sure there are others that haven't contacted me.

I'm asking for ideas on what to write about, so if you would like me to write about a certain subject rather or not I've covered it already please contact me. I've been trying to keep up with my e-mail so if you don't know me or don't have a Facebook, you can contact me there with ideas. If you do know me, which would probably be the case because I get a lot more views from Facebook and Twitter than searches from please contact with me through social media. I'm also going to start asking more people to guest blog, so if you're interested in doing that rather or not you have your own idea for a subject please contact me in the same way. Thanks for reading :)

Friday, November 29, 2013

Noise sensitivity

I'm going to keep it short. I don't remember when I first became aware of being more sensitive to noises but I knew I was in Junior high. At the start at one of the school years we were each given a assignment organizer with a plastic cover, or a similar material. When we got them a lot of the other kids scratched them to make a similar noise to fingernails on a chalk board. I could barely stand it, but I at least don't remember showing it. With the assignment organizers it also reminded me of how hard it was for me (and still is) to stick to a routine. I associated both with Hydrocephalus, but I wasn't sure how exactly. Sticking to a routine has to do with Nonverbal learning disability but the noise sensitivity might have something to do with the shunt itself. It's common with people with Hydrocephalus but there are many who don't have that problem. The most known noises that are more of a problem is high pitched noises and sudden loud noises. People react to it differently, with some the reaction has to do with the shunt itself. Some get headaches, but others get anxiety like I do. It may go away after childhood, but not with everyone. Thanks for reading.

 http://www.sbhi.ie/images/The-effects.pdf

Friday, November 15, 2013

My tendency to lose jackets/sweaters as a kid..

I have a hoodie that I've been wearing for about 7 years now, and until last year it was the only one that I wore for that period of time. I bought it for about 50 dollars at Hot Topic and it was made by Tripp NYC clothing. It resembles their pants that were still popular with the "modern goth" crowd at the time. It's black, with green fabric on it with a zippers and chains hanging off it. It's pretty torn up now which is one of the reasons I stopped wearing it as much as I used to. My point is that it's by far the longest I've ever had any kind of sweater or jacket. I had a few that I grew out of, but with most I would end up losing them. Some years I ended up going through 2 or 3 of them in one school year because I kept on losing them. I would lose school supplies too among other things. Most often what I lost would be gone by the time I got back. Part of the problem is that I wouldn't notice that it's gone until at night or even the next morning. In the back of my mind I figured it had to do with Hydrocephalus, and I knew that there wasn't much I could do to help it. But I had a really hard time trying to convince others of that. I was always thought of to have behavior problems instead of neurological/memory problems even if I clearly struggled with other problems that had to do with Hydrocephalus and a medical device that goes until my brain. 

I still forget things on a somewhat regular basis but it's usually at work in my department's backroom so depending on what I left behind, it's usually still there when I come back. If I do lose something and not be able to get it back, it's usually something I can replace without it being anyone else's problem. I've also figured out a couple techniques to help me stop myself from losing stuff as often. If I'm going to be sitting down and will be putting something down I'll either make it a point to put it on my lap or at eye level. If I'm at work I usually stash my jacket or whatever I have with me right away so if I do leave it behind, it will be in a place that not's likely to be seen so it's not as likely to be stolen. 

I'm still not positive what causes me to lose things more often than others, and I definitely cant remember when I had different circumstances when I was growing up. There were periods of time where I was definitely more stressed out, but I don't remember if I lost more stuff when I was going through those hard times. Something that I've discovered has a effect on me when it comes to Hydrocephalus related problems in general is weather. It's different for everyone but it usually has to do with weather mainly rainstorms, allergies or weather shifts in general, and the moon. The purpose of this topic is to help other people with neurological disorders, and their loved ones. I hope to help others, especially youth to be understood when they get a tendency  to misplace things. Thanks for reading.


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.


Wednesday, October 23, 2013

Reasons for not being able to write as consistently right now..

I've been writing this blog for about close to 2 years, and I've been posting at least something every other Friday since the start of this year. Before that I had taken a break for a few months when I was stressing out about work too much and pretty much dropped everything I had been doing at the time. I might be hitting that point but with medical problems this time. I'm not going to discuss any of it here. People can access my blog simply by looking up my name on Google, and I don't want to talk about it much on a page where everyone can see. It might sound silly considering how much I've written about my past and some current struggles, but that's the past and I at least don't feel people could use that against me now much. When I've spoken about current struggles it's usually things where the people who may know me or maybe have only met me a few times can use it to understand me a little bit better. Yes, it can be held against me and be used in a negative way but because it would only be the way I'm treated as a person I'm willing to take that risk. With medical problems it's something I'll rather keep it between people I'm close enough and trust enough to be Facebook friends with, and also others with the same condition but I'll still only give them a certain amount of information unless it's someone I've gotten particularly close to.

I don't want to stop writing altogether during the next few months, but it might not be necessarily every other week like it has been for the last 10 months. I had a couple posts that was a couple days late but except for that I've been pretty steady. I understand that writing is something that you can only do when you feel like it, and most if not all of friends that write blogs or other blogs don't do it on specific days so people who read it on a regular basis can get a idea of when to look for a new post. The Hydrocephalus Association and other foundations may, but I haven't been following their blogs very closely and haven't paid attention to when they post. Of course there's nothing wrong with posting just whenever you think of something to write, or as soon after as possible rather it's finding of time or just finding the desire to write. Posting on specific days was a idea that was brought up to me when I first got the idea to write a blog, and was asking for feedback from Facebook friends.

Considering you have to want to write to really do it, then I'm pretty impressed that I've been able to be this consistent with about 20 straight posts every other week, give or take a day since my last hiatus. Of course a few of these posts were guest blogs and others were ideas that I've gotten from others. As long as I still have ideas floating around in my mind, getting ideas from others and I have friends who are willing to write something once in a while I don't plan on stopping writing this blog completely any time soon. Medical problems might keep me more behind at some point, but if I know I'll need to take a hiatus again at any point because of it or other problems I'll try to post about so it wouldn't just been a sudden stop. I know people have many reasons to stop writing their blog but with a few of the blogs I've found I've noticed that they just came to a sudden stop a while before without any explanation at all. Of course people have reasons for a sudden stop like that, but it's something I'll rather do differently. I realize that people find my blog all the time because one of the posts show up in a search they do on Google, or on other transferring sites. I rarely get new followers at least that I know of but if they do or they just go digging through my other posts I'll rather not have them wonder.

By the time I had remembered to write it was the day after I normally post and I knew I wouldn't have much time to sit down and write something for another few days, forget thinking of a topic and doing research ahead of time. Thanks for reading and I hope that I'll be able to get back on schedule for my next post on the 2nd of next month.