Friday, February 28, 2014

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

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

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.

Pediatric Hydrocephalus Foundation-->

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.

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