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Thursday, February 25, 2021

Neurological disorders and sensory issues.

 I've been meaning to post about sensory issues since before I started writing my blog again last year. I was going to wait until I was able to research it a lot more, but I changed the way I decide to post about a recently, and a post that I wrote about noise sensitivity has been viewed frequently since I started paying attention to my blog stats again. Also this is important, I'm going to be mentioning sensory processing disorder in this post. It's possible to have sensory processing or sensory issues in general without having the disorder. I do not try to diagnose people with stuff, but it's also a thing that usually doesn't get a official diagnosis a lot. I'm going to mention two other people in my post. One is a minor, and the other is unable to give permission to rather she would want her first name included, and it would be quite a while before she's able to.


Sensory processing issues in common with both hydrocephalus, and cerebral palsy. Just from what I've been told it sounds like it's common with other neurological disorders too, but I'll rather have someone else write about that later on, so they can at least include personal experience. I'm including hydrocephalus because both me and a kid I'm mentoring has it, and my mentee has cerebral palsy. With hydrocephalus it's common because of the pressure build up on the somatosensory/sensory cortex. With Cerebral Palsy it has to do with the injury to the brain.


Basically when you have Sensory processing issues some or all of senses go haywire. This isn't limited to the 5 main senses either. It might include things like spatial orientation, or sense of balance. For me the big things are noise sensitivity, and not liking to be touch, or be crowded. With my mentee, it's different things but I don't want to go into detail yet without his permission or the permission of his Parents. But I have a friend with cerebral palsy that's a little older than me that had some of the exact sensory issues as my mentee. I wasn't aware of the connection until I was looking up some things I noticed about him that I at least thought was "tics" and found info online for SPD.  


My friend that isn't available to give permission for me to use her name, was given a official SPD diagnosis when she was in the 10th grade, so when she was around the 15 or 16. She spent some time in DES/CPS custody, and has been told that she would have been diagnosed earlier if it wasn't for that. She found out through special education testing. The advice she gave me was to look the kid eye to eye, explain things to him like he was younger than he is, and tell him one thing at a time so he process everything if I have multiple things to explain. My friend's main things are noises and crowds. With her it's more loud noises, but with me it's just certain noises especially scratching noises, or a bunch of people talking all at one time. She also mentioned being triggered by words or things. But I'm going to include that in another post when I've done more research, and I have two days off in a row to write a post. 

 

Hydrocephalus (sensation and perception) 

A little more information about hydrocephalus and sensory issues 

 Cerebral Palsy and sensory processing issues

Adult experience with SPD (hydrocephalus) 

Previous posts about noise sensitivity 

 

 



 


 

 



Monday, February 8, 2021

Personal experience on dealing with a learning disability at work.

Growing up and then up until I started doing research for my blog when I was around at 26, I thought that a lot of the panicking I did from having a learning disability, and possibly from other things that has to do with my brain anatomy was from me being lazy, or lacking motivation to put effort into my schoolwork. I got one on one help with my homework in the Sixth grade, but between the work load, my learning disability, and my memory in general it would take me hours each night, and sometimes cut into my sleep if not almost always. With all the effort I put into it that year I would still mostly only get C's. That part I was fully aware that it wasn't my fault, because a big part of it had to do with my low test schools. I would cram for tests and memorize as much as I could before the test, and then purposely forget everything so I would be able to do the same thing for the next test. So I would get to the point where it would be time for midterms, or finals and be screwed. It didn't help that my circle of friends were mostly honor roll students that year, and it at least felt like since they seemed to be stressing out far less about it, so I decided that it wasn't worth putting in the effort. 


When I decided to refuse help after the Sixth grade I would routinely forget to do my homework, and only remember the next morning when I got to School. I had to take a class my Freshman and Sophomore years that had to do with keeping track of homework, practicing note taking things among other things. I can't remember how much of that class included actually doing homework, but regardless it wasn't enough time. I flunked my Freshman year by half a credit, and I was flunking half of my classes at some point during my Sophomore year. A Teacher I had the next two years eventually made forced me to complete all of my homework in her class knowing that if I didn't get it done in School, that there was no way that I would be turning in those assignments, or at least not on time. Somehow she helped me get caught up, and was only half a credit short of graduating on time. 


When I was confronted about missing assignments usually during my IEP meeting finding those assignments involved fishing them out of my backpack. I would panic to pack up before class and throw any assignments I had directly into my backpack. I would always intend to reorganize my backpack later on, and of course it would only had several weeks after School started during my IEP meeting while trying to find specific assignments that ended up crushed in the bottom of my backpack. The same teacher that forced me to do my homework in my class, put a end to this habit as well. Although my backpack was still very messy, and barely organized if at all. Another thing was difficulty in forming habits, specifically hygiene and doing something specific in a class each day. What comes to mind right away when it comes to trouble forming habits is a assignment in 8th Grade Social Studies where we learned about the stock market, and we had to pick stocks and keep track of them daily for several weeks. I loved the idea but after a few days I unintentionally broke the habit of doing it. Not thinking to ask for help catching up, or possibly being nervous about it I ended up dropping the ball completely, and not completing the assignment for the next several weeks.


None of these things stopped being a problem after School ended. If anything it got harder in ways because in School most teachers were aware of learning disabilities, and in a way knew how to deal with it. I had a IEP, and had 2 or 3 Special Ed classes. On a side note I ended up staying or eventually ended up in those 2 out of 3 of those classes because of my black hole of a backpack, and refusing tutoring when it came to complex math classes. Knowing and talking to very regularly to two different people that has the same neurological disorder and learning disability that I do whom actually does put in the effort, or did while in School, I've learned that I probably would have freaked out. If I would have managed to not have missing assignments, then increasing the workload would have caused me to panic, and not get my work done.


As an adult, and working my learning disability has affected me in ways that wasn't as noticeable when I was in School. The two main things is grasping concepts, and having it take forever for me to pick up speed with new concepts. This only became a problem for the most part when I started working at Kroger. The only time my learning disability showed in restaurants jobs was when I would panic, especially in kitchen jobs when I would have to juggle multiple tasks at the same time and be risking burning food or not getting my part of the order out on time.

 

My position for Kroger is produce clerk, and I've been in the same department for almost 10 years. I was promoted from a courtesy clerk when my division restarted their cut fruit program. They had tried it at least other time before Kroger bought my division out. It lasted for 3 and a half years before they started to source it out, and it took me around 2 years before I was fast enough to always get everything done on time. I did strictly cut fruit for almost 2 years. After that for over 7 years including occasional "manager" shifts at stores that had 2 day loads where there was no ordering required the day of my shift. For the 8 months I've been strictly in the wet rack position. Basically everything that's on the wall or aisle in produce where everything needs to be kept wet is my job, including cucumbers, squash, and peppers because it's usually in the same section.Either each specific position or in general I had, and still have problems with organizational skills (especially when I panic), and forming habits. In addition I have trouble grasping concepts, or understanding the point of things. The trouble with concepts, and finding the point in things has to do with nonverbal learning disability as well. But it's either more obvious to me now, or there just isn't any childhood examples that come to mind.


Most if not all of my managers over the last 10 years, both store and produce managers has been understanding of my learning disability and usually without me having to explain. Certain managers gave me or provided me with enough hands on training where I don't really have a problem any new concepts anymore. What was done recently to avoid me panicking really badly when corporate or store policies change is to give me more than one day to switch over to whichever way things are supposed to be done. The way that I eventually got better at organizational skills is realizing how much extra effort I have to put in to fix everything after, and remembering that. I have a backpack for personal use because I don't drive or have a roommate who does. It still gets messy quickly, so I'm not sure how realizing that solution earlier would have helped. When it comes to habits what I started to do is write every habit that I forget at work, and when I'm confident that I've learned that habit, I cross it off. No comment on how long it took to make a habit to write down my list of habits that I need to make a habit of. 


One of the main reasons that I've stayed in the same department for so long is because I want to avoid a learning curve in a completely new department. There however is other departments that I've helped in that I struggled far less in. So if there's ever a problem in my department that won't resolve itself I have options that I'm not too nervous about. Just a reminder I haven't completely resolved all of these problems after almost 10 years of doing the same job. But it has gotten far easier to deal with. My point of this post was to encourage others with similar learning difficulties, trying to help those people be understood, and provide possible solutions.





Saturday, January 23, 2021

Link dump for upcoming posts.

 https://www.hydroassoc.org/complications-of-shunt-systems/?fbclid=IwAR1DlnyI04d0Mgd8tgH6L1w36QZ0eRz6sXQmXxeGkNiwpoveyjvQ0TuPaKY (Shunts)

 

 https://www.hydroassoc.org/hydrocephalus-day-to-day/?fbclid=IwAR3LiG6oRkiJKDvDMcIsPO-NYtXPkB7enF13LVDERsiNCnUR2813wupyem0 (Headaches and barometric pressure)

 

 https://www.sensory-processing-disorder.com/an-adultand-a-recovering-spder.html?fbclid=IwAR3gcZazREgzP1EiOISFTFBS0v5a_WC_SJdj2JOKoMajVXrynTcgH-YNPSo (Sensory)

 

 https://shuntwhisperer.com/2017/10/16/me-and-the-barometer-2-0/?fbclid=IwAR3GSCM4shZj0xT9siGJAeuZEDjVNUh0SLCan9zxpN0fSeH-LUW9D3AtfGk (Barometric)

 

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4553745/?fbclid=IwAR2VwFEg9gPCWi16e36jcS78jiSej0KekK4mLH0jaS5ghPBSgvvJzVWsh-w (Calcification)

 

 https://www.theguardian.com/books/2016/sep/12/roald-dahl-medical-pioneer-stroke-hydrocephalus-measles-vaccination?fbclid=IwAR1nTgtVyiT5dFgX2W_49J3_QKm1KK5f3rxy30kVI7FgTahSMzQ7pwX50rA (Roald Dahl)

 

 https://www.wnycstudios.org/podcasts/radiolab/articles/248590-blanc (Looney Tunes)

 

 http://protomag.com/articles/roald-dahl-and-the-curious-shunt?fbclid=IwAR2rl-rVOqmFF0I8WLln8GTw4oWnUV45FTwv1CSU0JZohgg_ugy2lWiwvIs (Roald Dahl)

 

 https://dollecommunicationsblog.wordpress.com/2015/03/06/weather-app-helps-manage-barometric-pressure-related-migraine-headache/?fbclid=IwAR2TD5sQTT7JS7-_174EbqsAhKBYINXCsV7ehFC0gOMoR-Px271Np72QZyo (Barometric)

 

 

Tuesday, January 19, 2021

Paraphrasing the hydrocephalus association's teacher guide: introduction and links to each post.

 If this is the post first that you're seeing from this series of posts, I've been going through the hydrocephalus association teacher's guide, and paraphrasing each section. I've been doing it backwards because the information from it that isn't easily found online is at the end of the guide and in the middle of it. So it made sense to me to start at the end of it, and work my way to the beginning. Also my first post was written 5 months before the rest of it, because I quickly lost the motivation to do it. If you look through my posts from the last couple years of blogging before I took a long break, you'll see that this was a consistent problem. 


Since I skipped the introduction, I've decided to do that last, and skip all the information I've already covered. The main thing that was covered in the introduction, but wasn't in the rest of the sections was that children usually have traumatic childhood experiences revolving around surgeries, rehabilitation, and other experiences in hospitals. The only other thing that I find worth mention is that the hydrocephalus association mentioned that shunts are extremely durable, so very much not likely to break due to falls and bumps. They also recommend not stopping them from participating in physical education, sports, and activities. I'm mentioning this because I've seen parents in hydrocephalus groups on Facebook worry about their shunts breaking, and I want to try to put people's minds to ease. But at the same time I personally encourage parents to ask their child's neurosurgeon advice about this. The one exception to shunts breaking that I know of where they hadn't had the same shunt for decades was from someone who I don't speak to anymore because she made me uneasy enough that I couldn't trust her to be my Facebook friend after a while,


I personally never had any traumatic medical experiences in school, or during school. For me my experiences involved being diagnosed late, and having therapies that had to with extra physical challenges because of that. When it comes to sports I was advised not to play contact sports.Most other sports but I was normally pretty bad, and it wasn't worth making the effort to me to keep practicing, or even try.  

 Here are the links to each section in this series of posts:

 

Physical problems associated with hydrocephalus

Learning disabilities (nonverbal learning disability) 

Learning disabilities (math, memory, attention)

Learning disabilities (motor skills, organizational skills) 

Social problems (isolation, depression, anger)

Social problems (social cues, nvd) 

 

 





 

 

Sunday, January 17, 2021

Epilepsy struggles (guest blog)

 My name is Keyt (Kate), I am 51 years old and I have had Epilepsy caused by Hydrocephalus since birth. Unless you are someone who has known me longer than 15 years you may not know this fact because I have been lucky enough to have found a drug cocktail that has stopped the seizures. However, it was a very long road to this point which included all kinds of medication trials, hospitalizations, various doctors and even comas and dying.

Like I said, my epilepsy was caused by Hydrocephalus. Because this is a hydro blog I won't go into too much detail except to say it's an overabundance of spinal fluid in the brain causing a swollen head and various other health problems, including seizures.

I began having seizures at 3 months old. My mom took me to numerous doctors but because infant neurology wasn't common in the late 60s/early 70s i was hospitalized often and placed on the few medications available at the time. 

By the time I reached 5 years old I had become so sick doctors said I would never be able to go to school. Finally at that age I was placed in C.S. Mott Children's Hospital in Ann Arbor, Michigan where, while in a coma I was finally diagnosed with Hydrocephalus.

School wasn't easy from kindergarten through graduation. Kids never understood me because if I wasn't having seizures I had major temper and behavioral problems because of the seizures or the high doses of medications I was on. Teachers tried to handle me but the older I got the harder to handle I became. Some thought i was just incorrigible and my parents were just making up this thing called hydrocephalus.


As an adult, seizures affected my life more than most people knew. I was still having breakthrough seizures (seizures despite being on medication) and by the time I was in my late 20s I gave up and stopped taking any meds at all. I began drinking a lot and acting out with every boyfriend I had. I didn't care what was happening with my life because once anyone heard the word epilepsy they would stop talking to me as much or just disappear.

In 2001 I was in a very bad car accident. I remember feeling as if I was about to pass out and while driving down a busy road with few open spaces, I ended up in a swamp. Witnesses say I traveled at least a mile and miraculously never hit a car or a house! Call it a miracle or a wake up call, or both, this was when I decided maybe medications were necessary. Since then I have been on Tegretol and Neurontin and ive only had 1 seizure. That one was because I had a kidney removed and couldn't take the doses I had been on. 

Epilepsy happens in many forms. Some people have reactions to light or extreme temperatures (I dated a guy once who would have full blown seizures up to 40 times a day if it was hot outside!), others can't handle quick movement like in cars or amusement park rides. Some people have full blown fall on the floor, twitching and drooling seizures, others stare off into nowhere for a while. 

Epileptic patients rarely talk about their condition even when it's very obvious. We want patience and understanding for our behavior because even if we aren't having seizures, epilepsy still has an affect and so do the medications we have to take for a lifetime. Seizures will seriously affect the brain, some more than others.  In my case I have a speech impediment and bad anxiety disorder. I know some people who can barely talk or walk at all.

As with any other disABILITY, most people would rather others asked them about their illness than be judged for it. I've had seizures at school, at family gatherings, with friends and various places in public. I don't mind answering questions as long as others are really interested.


Thursday, January 14, 2021

Paraphrasing the Hydrocephalus Association's Teacher's Guide: Physical problems associated with hydrocephalus

 I've been paraphrasing the Hydrocephalus Association's teachers guide so I've gotten to the point where it's the first couple of sections, and information that's a lot more easily found online. So I'm going to keep things shorter, and not try to include as many details. 

 

The first part of the section covers that children with hydrocephalus usually have other medical conditions like Dandy Walker syndrome, spina bifida and cerebral palsy. Other ones that aren't listed that I know of is epilepsy and Chiari malformation. It also covers needing physical therapy and occupational therapy. The part that might not be as well-known is the hydrocephalus association recommending comprehensive development testing, and a neuro-psychological evaluation early on. 

 

I'm not sure how well known it is but CSF can cause vision damage that ranges from very mild vision problems to very severe vision damage, including being legally blind. Of course there's other causes of vision problems, and the HA isn't trying to say this is the only cause. It can also cause eye misalignment problems that can be fixed with surgery. From hearing about personal experiences, eye misalignment issues at very common with at least cerebral palsy as well. 

 

The next sub subject covers precocious puberty which can easily be found online, but I feel like it needs to be covered still. It might be caused by the brain anatomy associated with hydrocephalus affecting the pituitary gland. This is more likely with children that had brain trauma including brain tumors and meningitis.It can also cause behavior that isn't normal at a earlier age. The sections that I decided to skip is shunt revisions, headaches, seizures, and hand/eye coordination. I've covered hand/eye coordination in my blog before, and I plan on writing detailed posts about headaches soon, and I've had someone guest blog for me about barometric pressure headaches before as well. 

 

Next week I'll be covering the introduction to the teacher's guide, and general information. Then posting the links to each of my posts covering the sections. I still plan on writing regularly, but it will be less frequently because I need to do research, and breaks are necessary.

 

 

Source:  https://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf


The guest blog about barometric pressure headaches: http://timothy-landry.blogspot.com/search/label/Weather

Wednesday, January 6, 2021

Paraphrasing the Hydrocephalus Association's Teacher Guide: Learning Disabilities (Part 3)

 The last two sub-sections are motor skills, and organizational skills. I'm going to keep both pretty limited, and then do more research,and post about the same subjects later on. I've posted about motor skills talking about my own personal skills during my first year of blogging which can be found by clicking on motor skills label at the end of the post. I've just recently started to figure out how to write about organizational skills in depth through mentoring, and I plan to work on that soon.

 

The three kinds of motor skills that tend to be effected with children with hydrocephalus is psycho-motor coordination, fine motor skills, and visual motor skills. According to the Teacher's Guide psycho-motor skills shows in clumsiness, and not being aware of how much space their body occupies.The guide was most specific with fine motor skills effecting writing but it also includes cutting with scissors, tracing, artwork, and participating in games. Children with hydrocephalus may have problems with printing and writing cursive. Their handwriting may be in poor quality and unevenly spaced. They may also write slowly compared to their peers. The hydrocephalus association encourages using computers for all writing assignments, but from experience that might not be financially available, and may cause their handwriting to be worse later on. With the visual motor skills section I'll have to do more research on it, and include it in another post because of my inability to understand what the Teacher's Guide means by everything. What I do understand is that it includes not being able to tell distance and direction. The distance part I've always assumed was poor depth perception because of my eyes. The direction part is another thing I want to research more about, and post later on. Another part of the poor visual motor skills is having trouble keeping in the lines when coloring, and finding their place on a page. Another thing they have problem with is spatial orientation which includes having problems telling the difference between left and right, over and under, and backward and forward. 


Children with hydrocephalus may have problems following with one step. The next paragraph mentions that may have trouble understanding the information as a whole, and finding the meaning of it. So the two things are most likely related. It may affect the neatness and quality of their work. It also means trying to understand every detail instead of the information of a whole which quickly turns into a information overload. According to the Teacher's Guide this may result in them using familiar habits or routines to cope which resembles misbehavior, inattentiveness, or laziness when it's really the opposite. 


I was diagnosed late, and a big part of what was affected was my motor skills being worse than what is considered to be normal. The only other person with hydrocephalus that I know that I could really compare this to has cerebral palsy, so it's really hard to tell how much of a difference it is. But with the part about telling the difference between left and right is something that is still a problem, at least when attempting to give directions. But when I was younger I couldn't tell the difference between my left and right shoes. 



Source: https://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf


Also this a post I wrote the first time I was working on my job describing how I discovered my lack of sense of direction: https://timothy-landry.blogspot.com/2013/08/how-i-found-out-i-have-no-sense-of.html