What I wish I would have known about Hydrocephalus as a kid (part 2)

This is the second part of a post that I wrote several months ago, and intended to finish a lot sooner or not at all. Part of the reason why I'm writing a second part to it now is so that I could refer to it later on instead of writing a post that will end up being several pages long. The link below is the first part.

http://timothy-landry.blogspot.com/2013/07/what-i-wish-i-would-have-known-about.html

If you're someone I've known for more than 5 years you its most likely to never have known that I have Hydrocephalus. It was someone that my teachers knew about but wasn't spoken about unless it was somehow brought up or on a need to know basis. Especially at church, I'm not sure who was told about and who wasn't. I assume that more of my caregivers were told about it when I was younger and my speech was still pretty limited. I only started to tell people about it when my actual started to become a problem in 2009. I started talking to other people with Hydrocephalus on Facebook at the same time, and everyday challenges with Hydrocephalus were brought up early on and it sparked a interest. It wasn't until then that it's normal for people with Hydrocephalus to have the same problems learning as me.

My source is the Hydrocephalus Association's teacher's guide's third section which explains a lot of the problems I had in school and church, most of them I didn't think of having to do with Hydrocephalus. The first couple of things that I could really relate to in the guide have to do specifically with Nonverbal learning disability. It mentions that problems seem to become more noticeable around junior high and children (and of course adults) with Hydrocephalus or just nonverbal learning disability tend to have problems with math. I did start to really struggle during the last couple years of elementary more than before, and it got worse during the transition from Elementary to junior high. With math I had a few setbacks but I did pretty well until high school Algebra. I ended up graduating high school without ever actually passing Algebra or Geometry. They would have me take a lower math class and I would do great, but when I would try Algebra I bomb and fail the class every time.

Something else that's mentioned in the guide is Fine motor skills, which I'm sure which a problem was because how big of a problem it was outside of school but it's something that was easier to deal with in school than anything else. It's something that's mistaken less for a lack of effort, and it's something that I always knew had to do with Hydrocephalus. I remember it being a bigger problem at church specifically for the mid-week Boy Scout type programs for elementary school aged kids. During the first couple years it just meant that I had to ask someone to help me cut paper for projects, but later on when the projects were more about learning to tie different knots and building birdhouses I knew that I wouldn't be able to handle it. I was getting really frustrated a few weeks in and the amount of issues I had with fine motor skills was beyond just asking for help once in a while. The one specific experience having to do with fine motor skills that I have to do with school is when they had all the students tie a ribbon to a fence to make some sort of design or to spell something. I got anxious knowing that I wasn't able to and ended up having to admit that I couldn't do when I was questioned about it by a staff member and watch her tie it for me in front of my peers. It also mentions handwriting which I got a lot of help with from a teacher in elementary but it's something I still have some problems with especially if the paper I'm using doesn't have lines. It's eligible though and usually when I have to write a lot it's done on a computer.

The first thing that comes to mind in the visual motor skills section is finding my place in a book which was a problem then and still ends up being a problem once in a while in the workplace. It's also probably what caused me to not be able to space things out very well when I had to draw.

The next part of the section is organizational skills which automatically think of struggling to make and break habits, which would result and still does end up resulting in things not being done either because I would constantly forget to do something day after day or because of letting things, specifically assignments in school get organized. The few times I tried to use a organizer to write down my assignments it would last a few days but as soon as it was something that wasn't strictly in forced I would begin to forget about it which pretty much killed the purpose of having it in the first place. I would also consistently not use folders and toss stuff into my backpack which would result in a black whole effect and by the time I would find it again it would be crumpled up or not even in one piece. I think this is one of the major things that would have helped a lot if it was known about. It was the major reason why I was kept in special education classes. I don't know if it could have been handled differently, but if it could have it sure would have helped. The section also mentions not being able to follow a set of instructions which definitely was and still is a problem, especially if it was verbal instructions as a group. I would get stuck on something and get a few steps behind and not be able to complete the assignment.

Memory was something that was clearly a problem very early on at church when each of the kids would be asked to memorize a verse and they would erase one word at a time. I would always be the last to remember and be able to recite it. It was frustrating especially in front of everyone else but it meant a lot to me that the group leader wouldn't give up until I got it or get noticeable frustrated with me. It became a problem in junior high when I couldn't answer questions or recite something right after I read something in a text book or essay. It continued to be a problem in all through school but it was so frustrating my first year that I didn't put much effort into it and get by with really low grades and ending up not finishing high school on time. It's something that's even more frustrating in church small groups which have made me try to avoid anything where small groups are part of it.

The last section I'm going to mention is attention problems. There are a few sections that I've skipped but this is a long enough post without them, so I just picked the ones I could personally relate the most to. If you're interested I encourage you to check out the guide or even just that specific section. Struggling with attention ended up resulting almost has to go on Ritalin and being misdiagnosed with attention deficit disorder. This and memory effected my school performance too more than other things, and if it was possible it would have really helped getting more help in these two areas.

Thanks for reading, I hope that I've hope you understand me, yourself or whoever you may know that has Hydrocephalus or nonverbal learning disability. I hope that I've helped someone get something out of this, and make things easier for you. I'm going to write more about this subject in the next couple of months and my next post will be the one that is going to refer to this one. Below is a few links to Hydrocephalus foundations and the teacher guide I've been referring to and also a sample of my handwriting that I sent to a friend.


http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf

http://www.hydroassoc.org/

Pediatric Hydrocephalus Foundation--> http://www.hydrocephaluskids.org/wordpress/

This is a sample of my handwriting that I sent to a friend. I decided to make my handwriting more creative to entertain a couple of teachers in the process of doing my work. It worked and it's something that stuck, but ended up getting more sloppy over the years. Notice how the spacing is off? The size of the letters is kind of too but that's the main thing a teacher in Elementary school helped me with.

Connection between childhood bullying and social anxiety as a adult

I'm going to try to start posting every third week instead of every other week for a while. If that doesn't work well either I'll take a break from writing again. I've made commitments that has to do with Hydrocephalus and social media, I intend on keeping them but other than that I'll like to try to start thinking on the condition less even if dealing with headaches, the way people see me and my speech impediment makes it pretty hard not to. This post has to do with the way people see me, or at least the way that I think people see me.

I can't remember when I started having social anxiety, but I know I had it when the physical bullying stopped close to the end of the 4th grade. I get noticeably anxious in a way, where especially I'm in a group of people that I don't know well that I do what I can to avoid socializing. It also makes me paranoid of what people think of me, and usually gives me the impression that people are picking on me or making fun of me when they're not. If they are it makes me overreact often. Anxiety problems in general has also had an effect on my sleep. I realize that a lot of people have problems sleeping because of anxiety but it's something that's been a constant with me since at least high school a decade ago.

I thought that it was caused directly by Hydrocephalus until about the last year or so. I found on talking a few others and sharing experiences with each other, most of them people that I've met online because of Hydrocephalus but not all of them. I've heard about anxiety disorders, especially Post traumatic stress disorder being the most common, but most of the time it had to do with domestic violence and experiences in the military overseas. I didn't consider it being really traumatic until thinking about my past more recently. It was a pretty constant thing during the school year, and off and on I was being physically hurt during the experiences. Unless something happens or someone says that really reminds me of something that happened I've blocked out in my mind too.

Thanks for reading, this is something that has been bothering me a lot often and I needed to get it out rather or not it was time to write a post. I've got some ideas that I've meaning to work on, but most of my posts are probably going to be more ranting than anything in the near future.

Media views on Hydrocephalus: Miracle in Lane 2

This blog along with several others that I've done is about well-known people with Hydrocephalus or shows or movies that have focused on it. I've written about most of the well-known people that have Hydrocephalus that I know of. Now I want to focus on shows and movies which involve more research, which is why I haven't written about this topic in a while.

I'm focusing on a made for TV movie this week that originally aired and used to be played frequently on the Disney channel. The movie originally aired when I was in the 8th grade (2000). At the time I didn't know anyone else with Hydrocephalus. I discovered the Hydrocephalus and talked to a few people from a Hydrocephalus e-mail group but I wouldn't meet anyone in person or really connect with anybody with it online for almost a decade. Also at the time my only surgery was when my shunt was placed at 16 months, and rarely had headaches. Currently I've been having headaches and migraines on a daily basis but for now I'm revision free still. I had and still have other problems that have to do with my Hydrocephalus but not the childhood brain surgeries that most kids with Hydrocephalus experience. I realized that on average normally people with Hydrocephalus would have to have a shunt revision every 2 or 3 years, so I knew that in that way I was different than the main character in the movie and most people with Hydrocephalus. It's also why I avoided talking about Hydrocephalus with others because I felt like I was a poser because of the lack of surgeries I've had. What changed that ended up being the first person I met on Facebook who had part of his experiences with Hydrocephalus on his profile. He's about 25 years older than I am and only has had a few surgeries since childhood and his current shunt is about the same age as mine. I met a lot of others with Hydrocephalus through him within a pretty short period of time, and the first few were within the next couple of days. Another of those few people was someone who has become one of my closest friends out of all the people I've met online, had a revision free childhood and had his first surgery when he was a adult a year or two before I met him.

The movie is a true story about a kid living with Hydrocephalus and Spina bifida named Justin Yoder. The movie is about how was inspired to become a boxcar racer and win. His family fought a rule that you could only use a foot brake and not a hand brake. Even if I didn't had to deal with surgeries or being in a wheelchair there was parts of the movie I could relate in one way or another. It didn't matter much to me because neither of my siblings played sports, but contact sports was the one thing that I was told not to do so I wouldn't get hurt and ending up damaging my shunt, so I would have to sit out a lot of the time. When it came to his family talking about his surgeries, the struggle to play medical bills and also his revision during the movie I could relate to it because I knew that it could happen to me without warning too even if it's something I never experienced. Our finances were usually tight growing up, so that made the thought of the possible emergency surgery more stressful.

There's a link to a site where you can stream the movie online. It does ask you to download a movie player but the movie should play without needing to download anything. Thanks for reading :)



http://putlocker.bz/watch-miracle-in-lane-2-online-free-putlocker.html

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.

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

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 :)