Paraphrasing the Hydrocephalus Association's teacher's guide: Social and emotional issues (part 2)

I'm going to try to pick up the pace, but I've been very slowly going through the hydrocephalus association teacher's guide and paraphrasing it to save others from having to attempt to read the whole thing. I've going through the sections with what is least known instead of from front to back. I'm going to focus on social cues and skills. My last post from 5 months ago was based on depression and isolation.

 

Many Children (and Adults) with hydrocephalus may having learning problems, and that might include Nonverbal learning disability. One of the symptoms of NVD is the near inability to recognize verbal and nonverbal cues. This results in missing social cues like facial expressions, gestures, and tones of voice. That results in taking things like sarcasm literally that has to do with the tone of voice. If it's not explained it can be very hurtful if not explained. Problems with social cues is not limited to facial expressions and tones of voice though.

 

Other social problems that some children with hydrocephalus is being very talkative, but there conversations aren't very thorough and they may process information slower than normal, which might cause problems with their peers. This results in it being common for them to befriend children younger than them. 

 

The last thing is that they might have problems with distance and spatial issues, resulting in them either being too close or too far away. If they're too close it tends to result in the person wanting to get away from them right away, and if they're too far away eye contact is difficulty, which results in them getting ignored. All of this isn't limited children. But since I'm paraphrasing I don't want to get off topic doing more research at the moment, and I definitely don't want to assume things.

 

Hydrocephalus Association Teacher's Guide:  https://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf

The first post in my series of posts:  http://timothy-landry.blogspot.com/2020/05/paraphrasing-hydrocephalus-associations.html

Paraphrasing the Hydrocephalus Association's Teacher's Guide: Social and emotional issues (Part 1)

For anyone that I've met in the last 5 years that's reading this, or otherwise is coming across my blog for the first time I started writing this blog several years ago about growing up with a neurological disorder, hydrocephalus. I eventually started writing about a wider range of topics. After a few years of writing consistently I needed to take a short break from it. I attempted to start back up soon after but I was burned out on it still, and ended up taking a much longer break than I expected. The reason behind had to do with personal problems that caused me to at least think that I had to drop a lot of things to deal with it. What gave me the inspiration to start back up, ended up being more changes in my personal life. The main thing is befriended and having the opportunity to help a younger person with that has the same neurological disorder that I do.


I'm going to be paraphrasing the Hydrocephalus Association's teachers guide section by section, while writing about similar topics and posts that I didn't finish before taking a break. I'm going to go through it backwards because the topics that seem to be least known is at the end of the guide. I'm going to start with the Social and emotional issues section, and the main topics are isolation, social cues. Skills, and depression. I’m going to focus on isolation and depression, and I'll be writing another post soon that will focus on social cues and skills. My goal is to keep these posts short, and easier to read.


It's common with children with disabilities in general to feel socially isolated. It's even more common with children with learning disabilities, because problems with social cues can be involved, which can cause them to feel left out or feel different. The problems with social cues and skills can cause them to have fewer friends, and cause them to having a harder time interacting with their peers. It might not be obvious either because most of their friendships may be superficial. They may also try to make up for it by only socializing with adults.

The certain result of isolation is anger. This is mentioned two different times in the guide. The first time saying that feeling left out or different can lead to emotional problems. The second time it's a lot clearer. For some children with hydrocephalus the anger can result in violent outbursts that may seem irrational or frightening. Partially because of this it's common for children with hydrocephalus to be misdiagnosed with ADD or emotional disturbance. It's also common with children with hydrocephalus, and likely other disabilities to develop depression or anxiety disorders. Part of the reason for developing depression may be having little hope that their situation would improve.


Personally my reaction to a combination of isolation and consistent bullying in Elementary School was not making much of an effort of coming out of my shell which probably made the isolation part worse. Having a speech impediment, and the slow process to learn how to speak well enough to be understood by most people didn't help other. I had a sudden and obvious situation in the 5th grade that caused me to realize how people saw me, even if it was obvious to me as soon as I started school because I had barely started learning how to talk, and a few other things that I had trouble with at the time that was obvious to other kids, and obvious to me that it wasn't something that was normal for school aged children. My reaction to both the situation in the 5th grade, and the years of isolation of bullying before that was rebellion. I was definitely very angry too, but I didn't really express that anger in obvious ways until I was a teenager. For me the rebellion was pretty low key, but seemed more intense at least because of growing up in the church, and not seeing a huge difference between excessive swearing, and what other kids without, or sometimes with the same background would have done if they went out of their way to rebel.

I had some realizations in early high school that made things even worse for me, and looking back I assume that hormones didn't help much either. I became angrier while still not making it obvious. My reaction was becoming really self-conscious, I already was some, but it got worse. I had become a lot more social in Junior High. But reacting to my realizations made me far less social, hormones probably didn't help with this either. It resulted in more anger that was far more obvious, and more spontaneous and frequent. I ended up reaching out to someone that managed to calm me down a lot in general before I finished high school.



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

(Guest blog by Jackie Waters) Tips for Avoiding Prescription Drug Abuse When Dealing with Chronic Pain

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Tips for Avoiding Prescription Drug Abuse When Dealing with Chronic Pain

Chronic pain sufferers face a tough battle nearly every day of their lives. It’s often difficult for

doctors to pinpoint the root causes of non-acute pain and many of the treatments are hit or

miss. Turning to prescription opioid medication to give yourself comfort may seem like the next

logical step. It’s important to know, however, that prescription pain medication is often ineffective

and dangerous when it comes to chronic pain. It can lead to abuse, addiction, and can further

complicate existing health issues. Here are some tips for avoiding prescription drug abuse if you

suffer from chronic pain.

Stick to the rules

When it comes to prescription drugs, it cannot be overstated how important it is to do things by

the book. This means to always follow the prescription, consult a doctor frequently, and never

ever alter the manner in which you take or the amount you take of the medication. Drug abuse

is not limited to the taking of illegal substances. It’s also not just about doing too much of a drug

(though that is a major problem). Crushing up a pill and snorting it, taking it more frequently than

the recommended time frame, taking it in combination with other drugs or alcohol, or any other

modification that doesn’t adhere to the doctor's and pharmacist’s instructions can be drug

abuse.

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Do not ask for increased dosage for increased pain

It may seem logical to ask for more pain medication  to battle more intense pain, but in fact this

is dangerous and counterproductive. You want to work on lessening your dosage of opioids, not

increasing it. The more opioids you take in an attempt to manage your pain the more your body

will become tolerant and the more ineffective they will be. Doctors are responsible for sensible

dosing, but it’s also on you. Don’t fall into the temptation.

Turn to alternative, holistic treatments as opposed to prescription medication

Ultimately you’re going to be healthier and avoid the spectre of addiction if you completely wean

yourself off prescription meds (or don’t begin taking them in the first place). Chronic pain is a

tough condition, and the temptation to take an “easy way out” - even it’s only temporary - is hard

to resist at times. But through lifestyle changes and a more comprehensive, total body

approach, you can minimize your chronic pain to manageable levels.

Massage therapy is one way to deal with localized, intense pain.

“The effectiveness of massage therapy for pain has been supported by various studies. It has

been found most effective for non-specific lower back pain, both acute and chronic, but studies

have also found massage to be effective for shoulder pain, headache pain, fibromyalgia, mixed

chronic pain, and neck pain,” notes SaferLock.

Other alternative treatments include aromatherapy, acupuncture, and hypnosis.

Of course, there is no quick fix for chronic pain and you must also make sweeping lifestyle

changes if you want to truly manage it. First, you should stop smoking and limit your intake of

caffeine and alcohol, both of which can cause inflammation. Next you must commit to eating a

diet rich with vegetables, fish, nuts, and fruit as opposed to one filled with red meat, fried food,

and sugar. After that, it’s vital that you commit to getting at least 30-45 minutes of moderate

physical activity per day.

Opioid medication can be effective in treating acute pain, but when it’s used to treat chronic pain

the risk of abuse and eventual addiction skyrocket. If you find yourself needing to get help with

opioid addiction, start here. It’s best to not go down the prescription meds path if you can avoid

it.

Photo Credit: Pixabay.com

Chronic pain (Part one): What I want others to know.

I've refrained from posting anything that from posting about my current health issues on my blog because I don't know if anyone I know if any of my acquaintances that aren't trusted enough for me to be friends with them on Facebook, or upper management from my work ever looks at my blog or will find it. I'm assuming that if anyone in corporate has found it that it would have been brought up to me or one of my managers at some point. I've had ongoing issues that partially mostly has to do with my hydrocephalus, but having do with other health problems as well that has caused me to have a constant splitting headache since the end of 2010, and daily headaches for about a year and a half before that. By constant I don't mean daily or off and on, I mean it never goes away. Before anyone asks I've been seeing doctors including my neurosurgeon for the majority of the time that it's been going on. They've found at least one of the sources of it that does have to do with my Hydrocephalus, but we're having issues fixing it. I do also plan on getting back on track with some of those doctors soon, and if things still don't work out I intend on getting other opinions. So my topic today is about what I want people that I know about my chronic pain. I also hope that it helps others that have the same kind of issues, rather it's encouraging to them or it's something that they can share with others so that they can understand their pain as well. 

I've never been prescribed stronger pain meds, just low dose anti-depressants and low dose anti-seizure meds by multiple doctors to try to "fix" the problems that way. None of them have worked and the Botox treatment they tried worked enough that I couldn't really tell any difference going through the process. But I could definitely feel it when it stopped working several months later. I would be willing to constantly be going with the Botox treatment but I wasn't but the part that the insurance doesn't cover adds up really quickly, and I can't afford to keep going. So instead I take over the counter meds, usually just at work and especially on days where a lot of heavy lifting is done because I work in the produce department at a grocery store. It might not seem like a job that requires heavy lifting, but most produce boxes/containers are at least 30 pounds, and the a lot are between 45 and 60. I've gotten some slack for calling that heavy lifting from people whose jobs require to lift a lot more, but it's a lot for someone with health issues like mine and for someone that has never has a job where I have to lift 100+ pounds. It took a while to even remotely get used to lifting that much, and it helped me burn fat and gain a significant amount of muscle over time. I also assume that it works the same for lifting even heavier amounts. Back to the subject, it gets pretty obvious that I take pain killers more often than people are usually advised to , and what I keep on hand at work looks like a lot, especially considering there's some things that I don't take regularly. I've gotten slack from some coworkers about it, some that I've been open to them about my chronic pain, and others almost not at all because I'm afraid that they'll use that information against me, which has happened in the past. It's not something that is recommended to take on a regular basis, but my health problems are not normal and I've gotten the okay for all the doctors I've been seeing recently to keep on taking it that way. There is also a difference between what is commonly recommended dosage on pain killers to take on the bottle, and how much doctors will say it's okay to take if you're a chronic pain sufferer (depending on the doctor of course). I almost always take closer to the higher 2nd recommended dosage, and I'll admit that sometimes I take more than I should. The people who freak out that I take pain killers, or some others that don't usually freak out when they see me taking more than it says on the bottle to take. Also pain killers doesn't completely take away my pain, it just puts a dent in it, it just makes it more tolerable and makes me function better. 

The first year or two dealing with frequent and then chronic pain was the worse, after barely getting headaches at all for 20 years despite living with a neurological disorder my whole life. But after that in a way I got used to, of course I'll never completely get used to it, especially since considering how the last several years has gone, that it will keep on getting worse until there's something done about it. During this time I couldn't really hide my pain, and the majority of my complaining about it, either in person, or on Facebook was during this time. I started to lose friends at this point, not just because I started to have to cancel plans and slowly stop attending things outside of work, but because of all the complaining I did on social media about it. People who especially didn't understand, just saw me frequently complaining on Facebook overlooking the reason behind it. So there's some that assume that deleted me because of it, and some that were straight forward that they were sick of seeing my negative posts "every time they opened Facebook" and deleted or blocked me over it. After that time period it became in a way that I can't really explain, a different kind of pain. It's gotten worse since then, but still a different kind of pain that I don't need to complain about it as often. It also got old to me as well, complaining about something that's not going away, especially during that period of time when I wasn't really doing anything about after trying the first 2 or 3 times. I complain once in a while on Facebook, but refrain on it because I don't feel the need to complain as much as I did for years, but I get tired of the way the posts get responded to. I also don't to have it seem that I'm doing it to get attention, I do it as a way to vent. Also the greeting of "How are you?" changes with you have chronic pain, and from what I've noticed from interacting with customers at work that it happens when your life just really sucks too. It doesn't feel like a greeting to me, and definitely to others with chronic pain considering what I've learned from other chronic pain sufferers. It feels more like a question, instead of a greeting. There's some that actual want to know how someone is doing when asking that question, but even with the majority of those people "I feel like shit" or a equivalent (less obscene) response to that isn't a reasonable response. So especially someone that you don't know, which is more common when you work in customer service "good" is the only reasonable response, which is also typically the 2nd part of the greeting. I and others with chronic pain feel like we're lying to someone when we answer the question we feel like we're lying to them. If I'm talking to customer then I respond with a positive answer, which still might not always be good. But if I'm talking to someone that I know, again it's usually at work when I'm asked that question I tend to skip answering then ask them how they are instead. I realize it's rude, but the majority of people that ask me are the same ones that would get just as butt hurt if I answered with something along the lines as "I feel like shit". I definitely really don't want to answer with "good" when I can, but I haven't decided which other way of answering would be the rudest. 

I have ways of dealing with it, rather those ways may be natural or not. One way is I've become a hermit, and I usually only break out of my shell when I have to force myself to at work. This could be taken two ways, the first being that I don't attend as many activities outside of work as much as I use to, or as much as I wish to. I've had multiple friends cut me off because of this too, not understanding how much it takes out of me. If not intentionally, because I'm just not at those social functions in the first place. The second way and the main point I'm trying to make is that I tend to not pay as much to my surroundings. I live in a pretty sketchy neighborhood, so if I'm walking to or back from somewhere I force myself to pay attention more. I do that at work mostly on the sales floor when on the clock, because customers wouldn't know what I'm dealing with so it's just assumed that I'm being rude and inattentive. Unless I'm really stressed or just have to be really huffing it, which makes it harder to not be a hermit. I'm probably more of a hermit in social situations, not even just at social functions but when I'm out doing things like running errands.  Being a hermit, even when I force myself to be more social, causes me to miss overhearing things that people expect me to, or how I use to do it before my health problems started kicked into gear. Being a hermit is probably equally as much if not more of just a part of my body dealing with chronic pain. The second way I deal with it not so much, at least not on purpose at first. It's mind over matter, which in the beginning I had ways of doing it that would make the pain almost unnoticeable. But when the pain got worse, those ways of dealing with it stopped working almost completely. But those ways that I prefer not to mention what they were, isn't technically mind over matter. Mind over matter is focusing your mind on something else, so that you feel the pain less. Some claim that it doesn't work or doesn't work for them, but they tend to not be trying hard enough, or don't understand how it works. The way that works the best for me, is keeping my mind busy at work, doesn't work as well when I don't have as much to focus on outside of work. Chronic pain also builds over pain tolerance over time, as in my head would hurt a lot more and I wouldn't be able to function at all if it would as hit me as hard as it is now. Much less painful headaches use to cause me not to be able to function in the beginning, which also goes along with my point of it being a different kind of pain earlier on. It also makes any other pain that I have that's not associated with the headache a lot less noticeable, which can be a real problem. For example, if I don't see myself cut myself or see a cut reopen, it usually results in me bleeding and not realizing it until I see the blood. 

I have more that I was going to post about on chronic pain, but it's an important and will probably get a lot of views, so I don't want to bury what needs to be said in this post. I plan to post about this subject at least a third time, so if there's anything that anyone to know about chronic pain or if you would like to do a guest blog and speak about your own experience with it, or anything neurological related in addition to it please contact me. Either on the comments or contact me via E-mail, via Facebook or on the several social media sites that I'll be posting this to. Thanks for reading :) 

Ending my almost year long blogging hiatus ;)

I'm currently using up leftover vacation time at my work so I don't lose it before my anniversary date, and since the plans that I had didn't work out, I figured it would be a good time to at least try to restart my blog. I haven't written anything in almost a year for multiple reasons. My laptop fried shortly before I went on hiatus, and instead of getting it fixed it or buying a new one I decided to just go without one for a while. Instead I decided to get a tablet and use my family's PC if I really need to. I can be on my feet all day at work, and function fine but I have a hard time sitting in front of the computer for a couple hours to write.



I also stopped writing because I was burned out with it. Except for one other shorter hiatus I had been writing once or twice a month, and trying to do so at the same time every month. When I first started blogging I was encouraged to keep a pattern of that times that I posted, instead of posting sporadically. Reading other blogs, I've noticed that most people post sporadically. The people who do post in more of a pattern or even on a regular basis are professional bloggers, and I'm definitely not. When I stopped writing, I was also burned out on the topic.



I picked hydrocephalus to write in the first place because I knew that I wouldn't be running out of topics easily, and it's something that I have to live with it. The disadvantage is that it caused me to overthink things on a regular basis. So in order to try to avoid letting this blog to have a negative effect on me, and trying to push myself to think of topics and write in a certain time frame I've decided to just post whenever I'm ready, which could be a few days or several months apart. More than often I'll be writing to get things off my chest that I don't think would be interrupted right if I posted it as a Facebook status instead. But I also plan on writing on topics as it comes to me. I also have multiple posts that I was working on when I stopped blogging. So they've been in my drafts for a year or longer. I'm going to go back through and rewrite some of those, and then just scrap others. I'm also going to spend more time writing each post so it will be more than scattered thoughts.





This post is pretty scattered, but I did at least have a good idea of what I was going to write before I started. I did also end up writing a lot more on a topic that I've covered almost every time I've taken any kind of hiatus, so I'm going to cut it short because my next post is probably going to be a long one. The reason that I try to not really long posts/articles is because I have trouble reading really long articles etc. in one setting, especially if I intend to remember the majority of what I'm reading. That most likely has to do with my nonverbal learning disability, and probably from Hydrocephalus itself too. I assume that the majority of the people that read my blog found it via search engines or social media because they have similar medical problems. So I don't want to cause the same problems that I personally try to avoid. Thanks for reading :)