#but also take that many more seconds for a caregiver or friend to read/process/recognize
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Why are communication cards always so information dense? And the default images on all the aac apps. Dont get me wrong im glad the resources exist, and im glad they work for some people, and im glad the people that need and like them have tools that are pretty. However. As someone that loses speech when i get overwhelmed (and i get overwhelmed a lot). I CANT have my tools be contributing to overwhelm. If im on the verge of a meltdown and i need to ask someone to help me get somewhere quiet, i need to find a card that simply has the word āquietā, maybe color coded so i dont have to read the words on every card, and thats it. I dont wanna have to process an anthropomorphic animal looking distressed on top of a busy multicolored background with text in a speech bubble that has the entire sentence ācan you help me get somewhere quiet please?ā In a stack of cards that all have the same rainbow background and anthropomorphic animal with various complex facial expressions and sentences. Im not mad those cards exist. Im just surprised theyre *all* that exist. I dont imagine my needs are particularly unique
#lilac posts#theyre also not only so much for me to process as to push me into a meltdown if im already on the verge#but also take that many more seconds for a caregiver or friend to read/process/recognize#especially if im asking for help from someone thats also autistic#which means that many more seconds *not* receiving help#and in the majority of situations where iād be relying on aac#(because i mostly only lose speech in distress)#every second is crucial in minimizing agony#i can communicate before or after the crisis all your stupid socially expected pleasantries like please and thank you#but maybe better yet the people im relying on can simply understand that i dont mean to be rude i simply need help urgently
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Letās Talk: Mental/Emotional Abuse, from a Survivor
If you read my recent post, you have seen that I am a true crime lover, and have been watching the ID channel as if it may disappear when Iām not looking (kind of like this post did the first time I wrote it, but weāll get to that). However, I have found that my obsession sometimes comes at a cost to my mental health. You see, when I watch these shows and hear about these horrible people with horrible traits... well, sometimes it triggers recall of some of the equally horrible traits of the man who once abused me. Now, do I think one day he will escalate all the way to murdering someone? No, I think there is a fairly slim chance of that, just given the lack of physical violence I have seen him exhibit. But, I could be wrong, and I sincerely hope everyone he encounters stays on their guard with him. Do I, however, believe this man is a sadistic psychopath who derives pure please from controlling and harming other people (especially women)? Yes, yes I do, with every fiber of my being. No matter the type, abuse is a topic people cringe at the thought of having to talk about. Trust me, the first time I wrote this before tumblr threw it off into the cosmos somewhere, it turned out to be one of the most difficult and painful things Iāve ever had to write. And, I do not relish the thought of having to write this all over again. But, even though we donāt want to talk about this, I believe that we NEED to talk about this. And yes, I saidĀ āweā, because it takes small actions from a whole lot of people to make a change in the world around us, not to mention the fact that I think everyone can gain something from the takeaways of abuse survivors. So, here I am, about to write about one of the worst years of my life, hoping to help others gain more understanding. WARNING: I am about to share graphic, detailed accounts of abuse. If you do not feel you can emotionally cope, thatās okay, please just skip to the end of the post for the recap. If at any time you feel you need support, please send me a message and I will be happy to direct you to some amazing resources! I met Chris... and I am choosing to use his real first name, as I do not feel he deserves any anonymity at all... when I was 17 and a senior in high school. When I said earlier that this man is a psychopath, I do not use that term lightly. Like,Ā āOh, that girl is psycho, like, totally cray cray!ā I mean it in the full sense and scope of the disorder. I met him through a close friend who was seeing him, and our first real encounter should have sent off warning bells in my head. To protect the privacy and dignity of myself and my friend, I am not going into details of that particular encounter here, but I will say that it was sexual in nature. False promises were made to my friend to convince her to do this, and it was not an overall a good experience. Even with that, though, there was something so charming and alluring about him that you just felt pulled in. Right away I started seeing him on my own. At first, it was almost like a secretly agreedĀ āsister wivesā situation... each of us knew about the other, and knew we were both seeing him, but also both adored him so much that we didnāt seem to care. Over time, as we both started to want more with him, he would lie or manipulate the situation to keep us placated. Often, he would tell me he was not dating her, but tell her that he was. He loved to lie. Like, genuinely loved it. He once told me that half the time he would lie even when he didnāt need to, just to see what he could get away with and how many people he could fool. Another red flag I missed, since that is one of the hallmark traits of a psychopath. He could also fake any emotion necessary to obtain his end goal, even though I doubt he really felt much of anything. Before long, I was practically living with Chris and his roommate in their apartment. Despite this closeness, and his supposed care for me, we neverĀ āofficiallyā dated. This is where things started to go haywire. He frequently would list off things he desired in a potential girlfriend, and I would jump through hoops to make them happen. I grew my hair out because he preferred long hair (even though I hated maintaining long hair), got French manicures because he didnāt like bright colored nails (even though I did), changed my mannerisms and reactions to be theĀ ācool girlā, literally anything I had to do to please him. Sadly, I never realized that nothing I did would ever please him or be good enough for him... he just wanted to see how far he could push me. Over that year I morphed into a person I didnāt even recognize in the mirror. Then came theĀ āremindersā, as I like to call them. He would not only talk about girls he liked from work or school, but bring them home with him when he knew I was there, parading them in front of me to remind me that I still wasnāt good enough. Next were the subtle put downs. Then the more serious put downs. Then came the tough love. So tough, in fact, the he held me by my arm while I was sobbing and trying to go home, holding me there until he was done telling me everything that was wrong with me. That was the closest he ever came to physical abuse, his hand wrapped around my forearm, but hell... sometimes I wished he would just hit me, thinking it would hurt less than his words piercing my heart and self-esteem. Still, I fell in love with him. Still, I stayed. Things continued to spiral, and with that spiral came the sexual abuse. That was undoubtedly the worst. His idea of sexual fun was to make me give him oral sex until he was almost ready to orgasm, then push me onto my stomach so he could fuck me for a few seconds until he came on my body. It was no longer about my pleasure or desires, only his. He convinced me that I would like being submissive, that I enjoyed it. He made me call him master, and bend to his will. On more than one occasion he would put me on my knees to give him oral sex, then hold me by my hair and half-drag/half-make-me-crawl over to him like a disobedient dog. Like an animal. I didnāt like it, but I just figured as long as it pleased him it was okay. I had only one hard boundary which I had communicated to him several times: I would not do anal sex. So, to get around this boundary, he decided to just rape me instead... One night as he was fucking me from behind, he pulled out of my vagina and ruthlessly thrust himself into my anus. I buried my face in the mattress and screamed, the pain being indescribable. He did not stop when I screamed. He kept thrusting until he finished inside me, and gave the final demeaning blow as I followed him into the bathroom:Ā āThis is why I donāt do anal, it makes your dick smell bad.ā I sat on the toilet for several minutes in disbelief, dripping blood and cum into the bowl. I had never felt more humiliated in my entire life, and I donāt know if I ever will. But, he apologized (though he did not mean it), I forgave him (as I always did) and life moved on. Any time I tried to pull away from him, he made sure that didnāt happen. He would talk bad of people I liked, talk bad of me to the people I liked, and sabotage any attempt to let him go. The final few months of hell came with his drug abuse. He became addicted to Xanax and Percocet, and I became his caregiver and guardian, ensuring that he ate, finished tasks, etc., and watching over him on many sleepless nights, making sure he didnāt start to overdose in his sleep. He never once thanked me for helping him, or saving his life until he finally went into rehab. The only good thing that ever came of our relationship happened during one of his attempts to be sober: he began going to church, so I went with him and ultimately rekindled/strengthened my relationship with God. That relationship is what lead me to eventually leave Chris behind. As more time passed we slowly parted ways, him going into rehab and then halfway homes, and me leaving home permanently. Still, it took a very long time to remove him from my life completely. He was like a cancer that I had to extract from my soul one piece at a time, and it took me a lot of time, distance, and perspective to come to the realizations I have about who he really is. Here are the reasons why I am telling you all of this (if you didnāt want to read the details, come back now). First of all, something that still haunts me to this day is how nobody did anything to help me. I mentioned that he lived with a roommate, and they regularly had another friend at the apartment with them, but neither of them tried to intervene on my behalf. I know how hard it can be to confront a friend for doing shitty things, believe me I do, but we MUST do this. Please. If you are friends with someone who shows signs of being a perpetrator, please talk to them, or help the person they are with. The next thing is, please be understanding and patient with people who have survived or are currently experiencing abuse. I already know that a lot of you were thinking while reading my storyĀ āWhy didnāt she just leave?ā The answer is a simple one: I really believed that I loved him. I couldnāt process what was happening to me while I was still wearing the rose-colored glasses, and it can be extremely difficult to discern how bad a situation is in while you are still in it. Give your loved ones time to process what is happening, but still support and protect them as much as you can. Nothing is as black-and-white as it seems. Also understand that just because the abuse isnāt physical, it doesnāt make it any less damaging. I still struggle with the trauma to this day, seven years later. The last few days I found myself dealing with flashbacks and bouts of intense anger. It happens sometimes, and will likely continue to happen here and there for the rest of my life.Ā And lastly, I leave you with this: If you have experienced abuse of any kind, or if you still are, I promise you that you will be okay. You are strong, a fighter, and a survivor. You are a WARRIOR. Time may not heal all wounds (I still have plenty of scars) but it truly does make it easier and less painful. There will come a day when the pain is not a constant ache, and when you can breathe freely again. Never, ever, EVER give up! I love you all, and I am always here for you! Thanks for going on this journey with me.Ā
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Mental disorders
Annotated Bibliography
Batistela Vicente, JĆ©ssica, et al. āMental disorder in childhood: family structure and their social relationsā. Escola Anna Nery Revista de Enfermagem. vol. 19, 2015, pp 107-114.
This article addresses the treatment of those with a mental disorder as well as family members which is the bulk of my thesis. The authors argue that issues are best handled by having some sort of structure in place. This structure can be found in multiple places: programs such as Conflict Prevention and Resolution--Brazil (CPR) or the National Alliance on Mental Illness (NAMI) (support groups for mental illness), church, or extended family and friends. More often than not, a combination of a few is the most successful. Friends and family are an obvious resource but sometimes unavailable depending on the situation and relationship of the family. The child is often too young to recognize their own need for support which often makes something like a church community --unpresuming but always available-- the optimal choice. As with any child, having a āscaffolding on which to hang oneās lifeā offers direction in the long run, whereas a child who doesnāt go to church, for example, may base their morals off their parentās belief systems but does not have the benefit of a supporting society. These resources also benefit the family of an individual with a mental disorder by preventing feelings of isolation (see article about support groups in Japan). One could raise the question, however, about how one learns about the availability of programs such as NAMI exist. Is it the responsibility of the family doctor, education systems (as it historically has been), popular media, or should it be taught in the home? I was unaware of NAMI until researching for this paper.
It is important to note that in the case of serious mental disorders, often social support is insufficient and the aid of medication as well as professional services are required.
Kugelmass, Heather. āMental disorder among nonreligious adolescentsā. Mental Health, Religion & Culture (MENT HEALTH RELIGION CULT). 2015, vol. 18, issue 5.
I read this article because I was curious about the effects of religion mentioned in the previous article. It explained that there are 3 types of support systems to help a struggling family that has a family member afflicted with a mental disorder; the first being the Brazillian equivalent of NAMI (National Alliance for Mental Illness), the second, religion, and the third a network of family and friends. The authors argue that a combination of the three is the most effective, but when all are not available at least one will benefit the relationship of the family. In that case, it seemed that membership in some kind of religious denomination and specifically a personal relationship with God provides the most solace in comparison to the other two. I decided to research more in-depth the effects of religion on the person with a proclivity for mental disorder and found this article. Though a bit of a tangent from my thesis, it still provides useful information. The authors specifically address different types of ānonreligiousityā as well: no religion, nondenominational (no religious preference), and atheist/agnostic. The study found that individuals who did not affiliate with a religion had a higher likelihood of developing a mental disorder of some kind during adolescence in the following order from highest to lowest: agnostic or atheist, no religion, and nondenominational. It is interesting to acknowledge, however, that the tendency to develop an anxiety disorder, though slightly higher among the āunbelieversā, was almost the same as the ābelieversā. Another interesting note is that the highest rates by far were among āunbelieversā who were raised by two highly religious parents at ātwice that of religious adolescents raised in religious householdsā. As with any kind of extreme stress or conflict, the disorder appears in response. I believe perhaps religion is the reason my father is so high functioning.
Arredondo, Emanuel, et al. āThe Global Impact of Intellectual Disability and Other Mental Disorders in Childrenā. International Journal of Childbirth Education. 2019, Vol. 34 Issue 2, p14-17.
(See also comments on āUnquiet Mindā.) This article discusses the āprofound challengesā for those that have mental disorders that āgenerally require professional services and treatment.ā The challenges of learning and social development, as well as the difficulty of informing others of oneās weaknesses, impressed me most. It can be difficult or even impossible for one with a mental health disorder to inform someone else of their situation, mainly in children but even beyond as one grows to adulthood because of the limitation of our own perception. We cannot be outside ourselves and no matter our aptitude for sympathy it impossible to see the world as another sees it. Take for example color blindness. My cousin told me about a time she was sitting with her brother as he was looking at cars online. She asked him which one he wanted and he pointed out one picture and said: ā I really like this blue oneā. My cousin told me she looked at the screen and saw āthe reddest car of my lifeā. How can we tell someone we are feeling blue when their blue is red? I think the inability to sympathize is the main cause of conflict between those with mental health disorders and those without. By learning more about disorders both parties can--though perhaps not empathize--sympathize with one another. Maybe we can teach our children about mental health earlier, especially to families with a history of mental health problems? Is it possible to spread awareness on a global level? Perhaps Juliann Meachamās research will inspire ideas.
Owen, M., Cardno, A. & O'Donovan, M. "Psychiatric genetics: back to the future". Mol Psychiatry, vol 5, 2000, pp 22ā31
Psychiatric genetics is ā a subfield of behavioral neurogenetics and behavioral genetics which studies the role of genetics and development of mental disorders such as alcoholism schizophrenia bipolar disorder and autism" (Wikipedia psychiatric genetics). The authors talk about the influence of the environment on mental disorders both before birth and after. Apparently, studies have been lacking. It also discusses aetiology (British spelling, also written as etiology), meaning 1: cause, origin; specifically: the cause of a disease or abnormal condition; and 2: a branch of knowledge concerned with causes; specifically: a branch of medical science concerned with the causes and origins of diseases (Merriam-Webster Dictionary, etiology)
I found this article specifically to figure out the difference between genetically caused disorders and environmentally caused disorders. How does the environment accelerate disorders? I came to understand by the article that more often than not it is not so much solely genetics or solely environment as it is āgene-geneā interactions (genes responding to each other and no the environment) vs āgene-environmentā interactions, with āgene-environmentā as the more common of the two. Can āgene-geneā disorders be prevented or are they inevitable making it better to forgo prevention and prepare to treat when the need arises? Life is stress, so maybe no environment can be controlled enough to evade a disorder? As Wesley says in Princess Bride, ālife is pain, Highness!ā Before finding this article, I realized throughout my research that I was mostly finding prevention methods, when what I wanted was treatment methods because I considered genetically-caused disorders as unpreventable. This article helped me see, however, that because gene-environment is more common, most disorders are, in fact, preventable. On the other hand, should they be prevented? Many influencers of this world were afflicted with some kind of mental disorder, so when we lose mental health disorders do we lose creativity? I would not wish depression or anxiety on anyone, but I do not think the gene giving us the proclivity to a disorder should be eradicated even if we have the capability to do so.
Kageyama, Masako. āChanges in Families' Caregiving Experiences through Involvement as Participants then Facilitators in a Family Peer-Education Program for Mental Disorders in Japanā. Family Process. 2017, vol. 56 Issue 2, p408.
(See comments on NAMI for American methods). This article addresses more in-depth the support group method treatment for families and individuals mentioned in āMental disorder in childhood: family structure and their social relationsā. This program seemed more geared towards the family of individuals with mental disorders than the individuals themselves. NAMI is very similar to the Japanese program Omotenashi ā FELP, but I thought I would research a few different methods and ātake the averageā. I chose Japan specifically because I lived there and juxtaposing a culture vastly different from the American was intriguing. This study provided the stages of treatment as well as testimonials of participants. It is noteworthy that the participant often did not know about the program (or join) before reaching 50 years or older. They voiced regrets of not having an earlier education and the hardship of isolation. Again this makes me wonder about spreading awareness of these programs, especially in a country like Japan where they have a tendency to over-privacy about family, and in many cases are too proud to accept help. In Omotenashi ā FELP, an interesting aspect is that the program requires 3 to 6 facilitators to conduct group meetings, making it necessary for some families who have just started to take on the role of the facilitator. This has its pros and cons as the responsibility of becoming a facilitator gives them the opportunity to grow exponentially but also makes for a rather amateur therapy group setting. I will compare this to Americaās NAMI organization, FFEP, and Brazilās program CAPS-i.
Johnson, Jane Clayson. "Silent Souls Weeping: Depression, Sharing Stories Finding Hope". Desert Book. 2018.
The author, a "nationally recognized journalist", sheds more light on the subject of clinical depression, sharing her personal stories as well as the stories of many others. She addresses the harmfulness of perfectionism and idealism of suicide, among other things. Since this book is specifically addressed to members of the Church of Jesus Christ of Latter Day-Saints, it is very applicable to my specific situation as a resident of a strongly religion-oriented community. I will focus on chapter 9: ""I just want to help": for families and friends". What I felt most from this book was the tendency of everyone to enter a vicious cycle of guilt and blame. The individual with the mental disorder blames themself, and the family members blame themselves or the individual, leading to guilt for blaming, and so on. The best action I saw was to stop blaming people and start blaming the illness which is unarguably easier said than done. In any case, blaming others and selves only digs the pit of depression deeper. One individual said "it is important for loved ones on the outside looking in to not take a loved one's struggles with depression as a sign of your own failure." The overarching theme of "an Unquiet Mind" and "Silent Souls Weeping" is the success in simply loving those struggling with some disorder. Not because it relieves them of the symptoms, but because it shows that life is"still worth living". The most impressive claim I think, was that "(life with) a person with a mental illness is not doomed to be miserable".
Redfield Jamison, Kay. "An Unquiet Mind: A Memoir of Moods and Madness". Vintage. 1995.
Dr. Jamison is a well renowned psychiatrist specialized in academic medicine and manic-depressive illness (bipolar), of which she herself also suffers. This book covers her academic findings related to bipolar as well as her own experience. One of my favorite books for a long time, the author helps the blind to see, in a way. "An Unquiet Mind" (more than anything else I have ever read) helps a person on the outside looking understand the chaotic nature of disorders--meaning chaotic in the sense of "uncontrollable", not necessarily "manic". She relates trying have a disorder to a blind teenager she used to counsel. After talking to him for many months, she felt she understood what it was like to be blind; however, one day she came to fetch him from one of his classrooms and was shocked to see the room was totally dark with him and a bunch of other blind adolescents silently reading braille. When he heard her come in, he stopped to turn on the light for her. We cannot fully understand what is like to live with another's disorder, but Dr. Kay says that we can love them and just be with them. Another topic she emphasizes is that if had the option to go back and live a life without manic-depressive illness, she would not; granted the medicine was still available. Modern medicine is a necessary thing for those who struggle seriously. The importance of medicine and the fact that there is no shame in it is also knowledge I think should be more widespread.
Burland, Joyce. āNAMI: Family to Family Education Programā. NAMI . 2001.
NAMI (National Alliance on Mental Illness) is the main (?) American resource for mental illness support. It is an organization that hosts group meetings for both those struggling with mental illness and their family members; giving helpful handouts, having group discussions, giving donations to good causes, and so on. Mainly focused on the family members, addressing their feelings and teaching the feelings of the member with the disorder. They give aid catered specifically to the needs and disorder of the participant. I really like the book I read that my mom received when she attended one of the classes with my dad. It would appear that the facilitators are, like the Japanese program Omotenashi - FELP, individuals who also have experience with the trials surrounding mental illness as well, which is arguably a reason the effective. I also visited the website, since the copy of the handout I have is from 2001 (though it was still used as of when my mom went to the meeting which was ā¦.). The website (https://www.nami.org/#) is easily navigable and provides all that a person seeking guidance would need. The classes NAMI offers include problem-solving skills, self-care, inside mental illness, etc. This organization is perfect but is it well known? Evidently, NAMI participates in numerous events per month in order to raise awareness, the next being āMental Health Monthā in May. They invite others to share their experience and support by using social media and using the hashtag #WhyCare. I looked up the results of #WhyCare on Instagram, and there were about 8,121 posts, 3 on Facebook (granted I don't know how to navigate social media well, so I may just be doing it wrong). All in all, a following, but a small one.
Lucille Southey, Sarah. āSarah Lucille Southey: A Memoirā. Dollison Road Books. 2016.
(With additional information from her step-brother, my father.)
This book is just a typical memoir, and since it is from the perspective of my step-aunt, many incidents were changed by her own perspective. My step-aunt Sarah suffered from Borderline personality disorder (BPD), also known as an emotionally unstable personality disorder (EUPD) is a mental disorder similar to bipolar in its propensity to mood swings. It is interesting to me that on a whole, Sarah seemed to have lived what I would consider a fairly average life considering the effect the divorce of my step-grandmother from her ex-husband had on her. As she describes the everyday niceties of life and the trials, there is a trace of something off about the way she describes things. But that could easily be put down to the cancer she was struggling with , or simply strong feelings. I also read her story through biased eyes know beforehand that she was diagnosed with BPD. She does seem to form very strong attachments to people, but I am already looking for that kind of behavior. I admit I donāt remember much about her when she was alive besides the visible toll of cancer, her strong opinions, and how crazy her sons Robert and Jack were. I can say that I know her boys and have seen them occasionally since her death, and Robert in particular is very loud and seems to be unable to control his impulses which is often unbearable for my cousins. In Sarahās situation as she was dying and Robertās as he lives with his adoptive family, again, maybe awareness of a support group would help.
https://www.mayoclinic.org/diseases-conditions/borderline-personality-disorder/symptoms-causes/syc-20370237
I read this article to understand more fully the reasons why my aunt acted and viewed the world the way she did. since it was a memoir, her mental illness was never explicitly addressed. But the atmosphere is apparent. The disorder she suffered from, on top of her terminal brain cancer which certainly influenced her behavior, was borderline personality disorder. This disorder, though not a part of my blood-relation family members, is still a part of my family, so it intrigues me. The symptoms of BPD tend to have mood swings as a result of abandonment and instability issues in their relationships, make being alone extremely difficult, and yet the extreme behaviors tend to drive others away. It also includes symptoms like āself-image issues, difficulty managing emotions and behavior, and a pattern of unstable relationshipsā. The effect BPD has on oneās perception of self and others creates many difficulties in daily life . I am not sure when my Aunt Sarah was diagnosed with BPD, but the article said that usually (as with most mental disorder) it appears in early adulthood. In the case of the family members of people with BPD, I am unsure of the specific way to help them. As I mentioned in the first annotation, a support system is the best help for the family members like her sons who were only 8(?) and 2(?) which in the case of my aunt were provided by my step-grandma, her friend, her ex-husband, and her sisters family who all lived close by.
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