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/

 



 




Friday, August 9, 2013

How I found out I have no sense of direction..

Some of the effects of Hydrocephalus are spatial, which means relating to space. This includes poor hand eye coordination and balance issues. But it also makes us directionally challenged. We tend to have a hard time telling where North,South,East and West are. I understand that there are many other people without Hydro with this problem. But it's something that just happens to be a lot more common with us. You also may disagree, and I understand if you. However it's not something that I would consider fact without legit sources.

I have plenty of stories that has to do with me getting lost, including getting lost on my friend's street every single time I attempt to walk to his house after knowing him for 16 years. The one I'm gonna talk about is my first one, and the one that is definitely talked about the most. I may have gotten lost before on a field trip before this if I remember right. But we were indoors and as soon as they realized I was gone they went and found me pretty fast, even if it seemed like a long time to me at the time. This was also the school year I discovered how easily I could lose school supplies and jackets.

It was three days into the school year, and it was my teacher's first year teaching. I don't remember who it was but a classmate asked me if I could walk her home. She didn't know that I had to wait for my mom, and as far as I know she still doesn't know. I'm sure she lived close to the school, probably right behind the school. I lived across the street from the school so I figured that as long as I could find the school again I would be fine. I remember starting to walk the wrong direction at one point because I remember walking past the neighborhood park and then turning back around when I realized going the wrong way. Considering where they ended up finding me, I know that I must have started walking the right way but then I missed my turn. After they realized I had left the campus alone my Principal and one of the teachers went to go find me. They found me walking down a street that goes along the side of school but I had gotten about half a block down the street after missing my turn. I was walking toward a main street. I'm not sure what would have happened at that point,but I know I would have at least attempted to changed direction again.

Back at the school I decided not to tell them why I left. I would rather get myself into even more trouble, then get her in trouble for it too. I told my parents about why I left the campus a few years ago but if anyone that was involved in it is reading this,it's probably the first time they've found out why. The result was not being able to walk home alone for the rest of Elementary school, or at least for most of it. It's something that I usually bring up once in a while, and apparently it's something that my teacher at that year brings up very often. Thanks for reading :)

http://www.ifglobal.org/en/hydrocephalus/living-with-hydrocephalus

http://www.sbhi.ie/learning-teaching.html

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