Hi kids, still lurking on this blog?
Well I am still kicking, I have just been enjoying my break. However I am sure you all want to know how my holiday is going and what I have been up to (not really I am sure), so here is a short essay on holidays memories and recalling details.
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Routine has been the soft fluffy blanket in my life (like the one on my lap) and one that I have hard time getting rid off (kinda like Linus with his). I like structure, simple patterns and things I can remember and organize easily. This is probably why I love the holidays. For some autists, it's chaotic and noise and bundle of sensory issues. But for me, it's a routine I can rely and remember and recall.
except for this year.
This year, is the first where I wasn't with my mom or my dad. I didn't thunder downstairs (or upstairs) to open presents. There was no holiday get together, no collective of relatives to play Taboo with. I was with Josh and his family and for some reason, I started crying on Christmas Eve about it. I was homesick, which is unheard of for me. I never get homesick and I like adventures and trying new things (occasionally when my anxiety doesn't blindside me)and this was planned back in November so this wasn't a "Sudden Change", but simply something that just occurred to me.
This is not my holiday routine.
Just for the record, I did have a marvelous Christmas with Josh's folks who treated me like I was their son, gave me wonderful presents and had a superb holiday dinner. Just to abate any fears that Christmas was terrible (because it wasn't). I will also get gifts and (give my own) to my family later after New Years. So it wasn't like I wasn't going to spend a mini-Xmas with my mom and step-dad.
Still the routine wasn't like last year, or the year before and these holiday memories didn't match or echo to ones before. The thing I like about Yule and the other winter holidays. Is the fact I can recall past experiences and go "oh yeah this is what is going to happen next", I have a library of memories than I can actually go back to to predict the next events in Winter Break, Christmas and New Years. For instance, here is what happened years back and what usually happens every year.
-I go see my mom
-I get gifts
-There is dinner at her place or at Aunt Lynn's
-Coffee and desert followed by family games.
-Go home with loot
This year was:
-Go Josh's apartment
-Hang out with him all break
-Go to his parents
-get gifts
-watch movie
-eat food
-go home
What really threw me off was the fact there wasn't a huge party of family. I wasn't playing Taboo or Apples to Apples and watching my family laugh recall memories and enjoy the peace of being with a clan.
I think that is what the crux of the essay is. I miss being with something so routine and familiar and comforting. my family both the Hannah (my mom's family) and Kramer (dad's family) I miss being with the sea of faces noise and happiness of the chaos that comes with it. It's only time when I feel happy being overloaded with noise, smell and people. For the rest of the year I am pretty much with just dad and myself. Routine and the daily grind doesn't have the right kind of overload (just the wrong) and I am stuck in a system of being underwhelmed and bored.
However while I love Josh and his family and I feel so blessed to be included. There is something to be said about missing and longing the faces you know and remember.
For an autist, family is the only thing we have (for some at least, not all) that is unyielding and unchanging. It's the only comfort we have that we can trust and while my dad has his moments when I want to scream, and my mom has her's when I want to sigh. I love them and I feel like something is missing when I can't spend the holidays with my mom.
Tikaani
The mascot of Prism*Song
Showing posts with label growing up aspie. Show all posts
Showing posts with label growing up aspie. Show all posts
Tuesday, December 27, 2011
Saturday, April 30, 2011
Juxtaposition
It's becoming interesting on how my disability permeates my life. How it's presents covers my everyday living. I have been pushing pasted the old barriers of my autism and continue to walk forward, and find new limits and eventually move pass them. It's a constant cycle of learning, adaptation and acceptance.
It's that acceptance that allowed me to realize something important about myself. I am not really female. I never felt happy being a woman, I do not truly hate my body however, and my dysphoria is mild compared to other trans males. But the acceptance of one aspect of myself allowed me to accept another aspect and thus I started on the path of juxtaposition. Passing as an NT and passing as a man.
Being NT and being a man are very different concepts of passing. NT is not a choice, being NT is a survival behavior an act of adaptation that is needed for independence. It's funny now passing as a man is not about survival but the purest nature of acceptance of oneself. It's exposing, unearthing my real self to the public and revealing in it's freedom. That being said I am not ready for hormonal treatment or maybe I will never go through with hormonal transitioning. It's up the air, but now that I feel much more comfortable as a trans male. It made me realize why it too so long. It had to do with passing as an NT.
As I stated earlier being NT isn't unearthing oneself and finding joy in letting go of a mask. Never wearing it again. Being NT is about putting on the mask. It's about lying, beguiling the rest of NT society. The idea of mask wearing of making sure my true autie nature didn't bleed through is what kept me from realizing that passing as a woman wasn't making me happy. But I had to pretend to be female to use my woman body to fit in. I kept making excuses to why I wasn't happy as a woman. I am really bigendered, I am mostly male but I am female too. They were excuses. Rationalizations because coming to grips with the fact I am a man was very tedious process. It was cathartic when I did finally start identifying and accepting the fact I am a man. It was a relief. The acceptance of my autism has becoming a blueprint to accepting and living as a trans-man. I found other autists that are trans male they became role models. The process was long and going against the lessons I learned as mask wearing autist. Yet now, it's done.
As a child, you learn from a young age that no body wants you to be yourself. No body wants you to be who you are. When people tell you, "it's ok to be you" it's a social lie. Being who you are when you are born different, autistic, learning-disabled, gay, trans, inter-sexed, deaf etc, is dangerous. Look at the countless people that have committed suicide over their difference. Human culture doesn't want diversity, they don't want acceptance. They want conformity under the lie that diversity is ok. They want people to feel comfy that it's ok to be different, or that...their difference is ok while the others are not. It's vile. We grow up being told one thing and then the opposite. No wonder everything is such a clusterfuck, how can we move forward with social progress when everything is so juxtaposed. How can we create a society that will not harm countless of children with different identities when we have such polar concepts? How can we cry that we love diversity and that it is good when at the same time when abusing and oppressing anything that is diverse? It's a paradox.
And one that will eventually undo us.
It's that acceptance that allowed me to realize something important about myself. I am not really female. I never felt happy being a woman, I do not truly hate my body however, and my dysphoria is mild compared to other trans males. But the acceptance of one aspect of myself allowed me to accept another aspect and thus I started on the path of juxtaposition. Passing as an NT and passing as a man.
Being NT and being a man are very different concepts of passing. NT is not a choice, being NT is a survival behavior an act of adaptation that is needed for independence. It's funny now passing as a man is not about survival but the purest nature of acceptance of oneself. It's exposing, unearthing my real self to the public and revealing in it's freedom. That being said I am not ready for hormonal treatment or maybe I will never go through with hormonal transitioning. It's up the air, but now that I feel much more comfortable as a trans male. It made me realize why it too so long. It had to do with passing as an NT.
As I stated earlier being NT isn't unearthing oneself and finding joy in letting go of a mask. Never wearing it again. Being NT is about putting on the mask. It's about lying, beguiling the rest of NT society. The idea of mask wearing of making sure my true autie nature didn't bleed through is what kept me from realizing that passing as a woman wasn't making me happy. But I had to pretend to be female to use my woman body to fit in. I kept making excuses to why I wasn't happy as a woman. I am really bigendered, I am mostly male but I am female too. They were excuses. Rationalizations because coming to grips with the fact I am a man was very tedious process. It was cathartic when I did finally start identifying and accepting the fact I am a man. It was a relief. The acceptance of my autism has becoming a blueprint to accepting and living as a trans-man. I found other autists that are trans male they became role models. The process was long and going against the lessons I learned as mask wearing autist. Yet now, it's done.
As a child, you learn from a young age that no body wants you to be yourself. No body wants you to be who you are. When people tell you, "it's ok to be you" it's a social lie. Being who you are when you are born different, autistic, learning-disabled, gay, trans, inter-sexed, deaf etc, is dangerous. Look at the countless people that have committed suicide over their difference. Human culture doesn't want diversity, they don't want acceptance. They want conformity under the lie that diversity is ok. They want people to feel comfy that it's ok to be different, or that...their difference is ok while the others are not. It's vile. We grow up being told one thing and then the opposite. No wonder everything is such a clusterfuck, how can we move forward with social progress when everything is so juxtaposed. How can we create a society that will not harm countless of children with different identities when we have such polar concepts? How can we cry that we love diversity and that it is good when at the same time when abusing and oppressing anything that is diverse? It's a paradox.
And one that will eventually undo us.
Saturday, March 19, 2011
Having an itch you can't scratch
It wasn't long before Tikaani heard the shouts of his aunt as he bolted out of the house. His communicator still on the table as Maka chased after him, the only warning that Tikaani gave aunt, was the word "Itch"
The urge to bolt out of the house is not and uncommon behavior for autists. Occasionally I want to get out and run, and I was a "Runner" too as a child (to the point I had a baby leash as kid). Sometimes you just have to get up and go. You don't want to stay still but go, and you get up and run. I pace a lot now, and my running behavior is minimized but I still have that itch.
Currently there has been talk of a proposal for a Diagnostic code for "wandering". I have a feeling this could end badly, and push disability rights back a step. Once again people continue the notion that "we don't know what's best" and we're doing this "for your benefit" without actually discussing this problem with us. It's like every other treatment or issue with ASD. The NAA and Aut$spk rather talk to the parents and those on the outside than those that actually have the issue. Everything about this proposal feels ass-backwards and it screams justification on locking up auties.
"They have Wandering Disorder that's why we have to put him in the kennel with Spot! Honest it's not abuse! Look we have papers"
I am sure their other methods to help these kids and adults with wandering issues and I don't think medicalizing it is gonna help. We again need to cross that bridge and talk to autists on less invasive and restrictive methods to curb wandering behaviors.
Personally. I think a good "damage control" method is simply introducing your autistic child to the neighborhood and have the neighborhood get to know your kid. Having an aware community can be so helpful. Neighbors that know that "Ian" is on spectrum can benefit you. Their awareness means if he gets out and runs off, a neighbor who knows him can find him and take him home. A strong community and aware one is a boon and it's sad that I don't see that anymore. Of course you gotta be aware of who you introduce your child too, but the point remains.
I just know if I was locked up for running I would find other methods to exert that need. Most of them...would be self-injurious.
The urge to bolt out of the house is not and uncommon behavior for autists. Occasionally I want to get out and run, and I was a "Runner" too as a child (to the point I had a baby leash as kid). Sometimes you just have to get up and go. You don't want to stay still but go, and you get up and run. I pace a lot now, and my running behavior is minimized but I still have that itch.
Currently there has been talk of a proposal for a Diagnostic code for "wandering". I have a feeling this could end badly, and push disability rights back a step. Once again people continue the notion that "we don't know what's best" and we're doing this "for your benefit" without actually discussing this problem with us. It's like every other treatment or issue with ASD. The NAA and Aut$spk rather talk to the parents and those on the outside than those that actually have the issue. Everything about this proposal feels ass-backwards and it screams justification on locking up auties.
"They have Wandering Disorder that's why we have to put him in the kennel with Spot! Honest it's not abuse! Look we have papers"
I am sure their other methods to help these kids and adults with wandering issues and I don't think medicalizing it is gonna help. We again need to cross that bridge and talk to autists on less invasive and restrictive methods to curb wandering behaviors.
Personally. I think a good "damage control" method is simply introducing your autistic child to the neighborhood and have the neighborhood get to know your kid. Having an aware community can be so helpful. Neighbors that know that "Ian" is on spectrum can benefit you. Their awareness means if he gets out and runs off, a neighbor who knows him can find him and take him home. A strong community and aware one is a boon and it's sad that I don't see that anymore. Of course you gotta be aware of who you introduce your child too, but the point remains.
I just know if I was locked up for running I would find other methods to exert that need. Most of them...would be self-injurious.
Sunday, March 6, 2011
Loosing myself
I don't know why
But when I paint. I loose myself. Hands fly over my face. I rock as I strew colors on my page. I totally lose myself into the painting. Sometimes I feel like crying. I might be the music I listen too, it might be feelings of joy when my soul drips into the paints and into my paintings.
I don't know why, but it feels like part of my brains just clicks off when I start to paint. It's odd, I don't talk I just stim and paint.
Curious.
Wednesday, January 19, 2011
Namaste
Deal with anxiety is never easy. And there are many ways to combat it. Drugs, pyschotherapy just simply managing it. Yet I discovered something that helped with social anxiety and learning to stay calm in many over powering social situations that might cause sensory overload.
I have discovered that Yoga lessons were very useful.
Yoga allowed me to slow my breathing down and my thoughts so I can think clearly. I've actually used some of the breathing exercises in meltdowns. They have actually helped me.
While yoga isn't for everyone and not everyone and find the benefits I have found. I do believe simple exercise and calming oneself to be very useful and applicable to everyone...not just folks like use
Thursday, January 13, 2011
A Surreal walk down memory lane
For those that don't know. I am being re-evaluated for my Aspergers diagnosis. I am trying to get actual testing done so I can get services from Franklin County DD. Which has been a bureaucratic nightmare. During the several test and the hundreds of dollars that we shelled out (Which I felt guilty for my mom paying for all of this), we did the ADIAR test which was basically an interview about my childhood to see if I failed any developmental markers that would label me as an autist.
Dec 1 was the first half of the test. It was pretty surreal to hear that I was developmentally late physically and that I lack I think pragmatic speech (I was verbal but never used it to interact socially and to have conversations) I never had interactive play as a child and no eye contact. Today we finished the test and the entire evaluation. I felt a sense of pain for my mom today. As she recalled parts of my childhood that were well...heartbreaking. She always wanted eye contact from me but never got it. I never kept friends, and I withdrew a lot as a child. From the interview, it honestly sounds like I missed a lot of social markers. While I did communicate it was basically needs "Momma I want this, Momma get me this." or feelings but really not to anyone juts myself "I'm tired, I'm sad" and so forth. I recalled rituals of sitting in a particular spot at dinner religiously watching a particular program at a certain time. I stimmed a lot as a child and all the way to adult hood. I formed attachments with objects than people (Esse the frog and Sebastian the cat). It seem like I hit most of the symptoms.
Hopefully this evaluation and the others will make it apparent that I do have an ASD and confirm what I know is true.
Dec 1 was the first half of the test. It was pretty surreal to hear that I was developmentally late physically and that I lack I think pragmatic speech (I was verbal but never used it to interact socially and to have conversations) I never had interactive play as a child and no eye contact. Today we finished the test and the entire evaluation. I felt a sense of pain for my mom today. As she recalled parts of my childhood that were well...heartbreaking. She always wanted eye contact from me but never got it. I never kept friends, and I withdrew a lot as a child. From the interview, it honestly sounds like I missed a lot of social markers. While I did communicate it was basically needs "Momma I want this, Momma get me this." or feelings but really not to anyone juts myself "I'm tired, I'm sad" and so forth. I recalled rituals of sitting in a particular spot at dinner religiously watching a particular program at a certain time. I stimmed a lot as a child and all the way to adult hood. I formed attachments with objects than people (Esse the frog and Sebastian the cat). It seem like I hit most of the symptoms.
Hopefully this evaluation and the others will make it apparent that I do have an ASD and confirm what I know is true.
Sunday, August 1, 2010
Appropriatness and Happiness:
If Tikaani isn't lining up his action figures or playing with his legos, he's watching TV. Not that I mind. I can do my laundry and wash dishes without him shouting "AUNTIE!" But as of late he has been watching "Ni Hao Kai Lan". I keep asking him if he wants to watch Bey Blade or if he wants to get out his Pokemon DVDs or if he wants me to change the channel to Nat Geo. Instead, I get a whine followed by hair pulling, Tikaani-ese for "No no no no, don't do that." So I let him watch it without interruption. As much as it personally embarrassing for me to have my 16 year old to watch something meant for four year olds. I have to simply let it go. If it isn't harmful to others or himself or destructive, I can't really stop him.
Besides, the trade off is that he is learning Mandarin Chinese...that's not really a bad benefit.
((modern setting for essay purposes))
Kim wrote this weeks ago, and I decided to write a response about it. Something that really needs to be touched on as an autist.
I don't see why it is painful for a parent to see their child happy. If your seven year old is still watching Telly Tubbies and bouncing around I don't see how that is heartbreaking or tragic. I don't get why we have to have play with age appropriate games and watch age appropriate TV programs in order to be happy. I don't see why a girl can't play Tonka trucks or a boy with her sister's Barbies. Why is appropriateness and happiness have to interlock?
I guess it bothers me a bit because of the pressure to be just like our typically developing peers. That we putting pressure on kids to interact and share like interests with our peers and not just be happy with what fascinates us. I saw nothing wrong as a fifteen year old to religiously watch "Sagwa: The Chinese Siamese Cat" on PBS. I was happy and my sister and I watched it together (without fighting OhEmGee!) and it was generally a happy time after so much stress from school and Katie and I loved to watch it. Just as we both loved watching Sailor Moon (MOON PRISM POWAAAAAH!) and later Outlaw Star. Should I have been watching shows appropriate to my age and mental level? Yeah, but yet. Those shows were geared towards social protocols and cues that I was rather obvious of. I wasn't interested in who was dating who or what secret Character A was carrying. I didn't get into that until I was at least twenty. I was more interested with the story being told than all the social details. So watched cartoons like "Sagwa" and "Big Guy and Rusty" and "Astro Boy". I was into the story.
The point however is that later I did watch shows like "CSI", "Bones" and "House" which are more for my age level than cartoons. Sure it took me a while, but never the less it came. So I still obsess over cartoons than I do over TV dramas. Yet in end does it actually matter? Why is heartbreaking to see me laughing my head off or grinning like a fool? Why do you have to feel embarrassed when I am rubbing my face on plush animal or lining something up?
Why the very real joy, is the same as the very real pain? Can you answer that?
Friday, July 16, 2010
Body Language
I am hungry.
The notion that I am hungry is interesting feeling. Reading what my body needs or wants is sometimes like trying to listen to someone speaking quietly.
I'm hungry..
What?
I'm hungry!
I can't hear you!!
Thusly most of the time I end up ignoring my body's cues for food and often sleep. This isn't because I am some sort of lazy idiot. But rather because it took me years to understand what my body is saying. So I trained myself to eat at certain points of the day. I skip breakfast a lot because ideaism of "appropriate food choices" and left over pizza isn't a breakfast food. So I eat two meals a day. Once in the afternoon around 1pm (or rather 2:3opm) and again around 8pm. I lack a stable appetite. I often had days when I don't eat because I am not hungry. Interestingly enough, I try find appropriate food choices but end up eating whatever is around and much of it is unhealthy.
But, understanding that I am hungry or the need to unirinate...seems to be a learning skill for me. I can read my bladder my fine, but my stomach talks too soft and sometimes I am just too tired to go up and get food. It's a weird feeling of learning to know when you are hungry.
It really is.
Monday, January 11, 2010
Diagnosing my Father
Though I admit this blog is geocentric, and I tend to ramble on things that no one really has interest in but I figure some people out their with fathers might be interested in this post or at least to some degree.
I have to admit I am a 'daddy's girl', I seem to be the only child in our little clan of hobbits that was loyal to dad. My Katie has forgiven my father after years of grudging and despising my father. Allyson sadly, only knew him distantly. After all she was almost two when Dad left us. I was almost eleven. Which makes sense why I was so connected to him. I remember him better.
I was very bright child, though I had no audio memory (or rather I lack the processes to store verbal information) I could still remember conversations with my father on our long drives. He took me fishing a lot, these were priceless memories. Him taking me to watch the planes and and trains and fishing were treasures I kept with me. To him I will always be his 'fishing buddy'.
However despite the soft images of him singing nonsense songs and explaining to me how salmon migrate and how the venturi effect work, I was still terrified of my father. He was aggressive and loud and sometimes unapproachable. Talking to him was impossible. Not only was it difficult to communicate in general but trying to talk to someone that used fear as disciple measure...it just couldn't be done. I was selectively mute when I tried to talk. Dinner conversations made me sick I lost my appetite often. It took me years, recently actually before I had a decent conversation with my father or least had the courage to tell him to back off. This was all before my father realized he raising an autistic girl. Even now he is still clueless but he knows now not to raise his voice anymore. Thank gods.
As I am writing this down, I noticed patterns. My father had a very route schedule. He did well as a Fire fighter because it was very organized. He like routine as I did and he was also obsessed with certain topics. History of weapons was one of them, as well as natural science. He was bigot with very black and white views. He tend to speak inappropriate topics had no filter and was emotion blind.
By the description, it sounds like my father definitely had autistic tendencies. Whilst I won't diagnose him as autistic (despite the title) I will say he would probably be border line. Though maybe I am seeing only want I want to see. But we did get a long well to some degree. And yes maybe because we both had the same social habits. Yet, my mother tends to use my father as bad example and believes I will end up like him. She scapegoated his problems onto me, so I ended up bearing a lot of my mother grief about my father.
While it is plausible I will be living with him, I am have to say I am not looking forward to it all. My father is a drunk, a bigot and an oppressive Christan. We won't get along unless I sacrifice my identity for the sake of living peacefully with him. It's the flaw really of being autistic. We're not flexible animals. We like things as is, no interruptions or change. This is something we can work on but never get rid of. I hate change so does my father. One of us will buckle and change for the other person, and that is going to be me. Gotta live up to my name anyway (Honor and Grace) can't pitch a bitch about it.
As I still love for housing I still can't help but feel that living with my father (bad as it) as a curse. Hopefully my father will learn to be flexible and accept the changes and have serenity.
Cross your fingers
I have to admit I am a 'daddy's girl', I seem to be the only child in our little clan of hobbits that was loyal to dad. My Katie has forgiven my father after years of grudging and despising my father. Allyson sadly, only knew him distantly. After all she was almost two when Dad left us. I was almost eleven. Which makes sense why I was so connected to him. I remember him better.
I was very bright child, though I had no audio memory (or rather I lack the processes to store verbal information) I could still remember conversations with my father on our long drives. He took me fishing a lot, these were priceless memories. Him taking me to watch the planes and and trains and fishing were treasures I kept with me. To him I will always be his 'fishing buddy'.
However despite the soft images of him singing nonsense songs and explaining to me how salmon migrate and how the venturi effect work, I was still terrified of my father. He was aggressive and loud and sometimes unapproachable. Talking to him was impossible. Not only was it difficult to communicate in general but trying to talk to someone that used fear as disciple measure...it just couldn't be done. I was selectively mute when I tried to talk. Dinner conversations made me sick I lost my appetite often. It took me years, recently actually before I had a decent conversation with my father or least had the courage to tell him to back off. This was all before my father realized he raising an autistic girl. Even now he is still clueless but he knows now not to raise his voice anymore. Thank gods.
As I am writing this down, I noticed patterns. My father had a very route schedule. He did well as a Fire fighter because it was very organized. He like routine as I did and he was also obsessed with certain topics. History of weapons was one of them, as well as natural science. He was bigot with very black and white views. He tend to speak inappropriate topics had no filter and was emotion blind.
By the description, it sounds like my father definitely had autistic tendencies. Whilst I won't diagnose him as autistic (despite the title) I will say he would probably be border line. Though maybe I am seeing only want I want to see. But we did get a long well to some degree. And yes maybe because we both had the same social habits. Yet, my mother tends to use my father as bad example and believes I will end up like him. She scapegoated his problems onto me, so I ended up bearing a lot of my mother grief about my father.
While it is plausible I will be living with him, I am have to say I am not looking forward to it all. My father is a drunk, a bigot and an oppressive Christan. We won't get along unless I sacrifice my identity for the sake of living peacefully with him. It's the flaw really of being autistic. We're not flexible animals. We like things as is, no interruptions or change. This is something we can work on but never get rid of. I hate change so does my father. One of us will buckle and change for the other person, and that is going to be me. Gotta live up to my name anyway (Honor and Grace) can't pitch a bitch about it.
As I still love for housing I still can't help but feel that living with my father (bad as it) as a curse. Hopefully my father will learn to be flexible and accept the changes and have serenity.
Cross your fingers
Friday, December 18, 2009
Mathmatical thinking.
We're creatures of structure us autists. We like routine and we try to keep to our routine. Every morning at Nine o clock I get up and get on the computer. I check Dominic-Deegan first then e-mail and then Livejournal in that order. Then I get dressed, eat something or drink a cup of coffee brush hair and teeth, pack up and prepare to leave promptly at 10:15 or 10:17. I catch the ten-thirty bus. If the bus is late I get angry and I pace.
Even someone that can go with the flow has a set pattern. Even on the bus I sit on the same seat every day unless someone else is in it then I sit close by. Being anal about punctuality has a bonus though, I am almost never late to work. and I call in sick when I am under the weather.
Why are us autist so ridged when NTs are so pelt-melt? I can't tell you why I have to do the things I do. I'm not inflexible, I do other things within my morning routine like get a cup of coffee on the way to work, or cast runes or do tarot before I leave. In the afternoon I am back on the computer and I don't get off until I go get something to eat. Occasionally I go out with a friend on the weekends. But generally I keep to a pattern.
It's believe that we do this because we can't be abstract and have very black and white perspective. I don't think this is all the way true. We can be abstract but we're not black and white. I believe we're mathmatical thinkers. We follow a basic logic. A+B=C NT's don't. They are more, "A+B=whatever" They think logicily yes, but not mathematically. A mathematical thinker doesn't just put whatever answer the feels fits and then changes it when ever he likes. A+B=C that's it. For some autists, formals don't just change and when they do it doesn't make sense and we get confuse and panic. Because if "A+B=C.2 then what about the other formals and equations we follow? Does F-D+U=A now? We get angry when we're thrown off routine not because we're stubborn and we have to do things just so, but because now I don't know what to do or what the right response is and we end up panicking.
Whilst I am very flexible and I do enjoy spontaneity when I am not working and I love adventuring and exploring the new and the unknown (right brained here) Work is different. I have to follow a set of rules and routines. Getting me off these rules is not a good idea. Here is an example of this.
On Wendsday, the parents threw a big lunch for the teachers in an act of thanks. I had no idea about this. So when I walked into the Teacher's Lounge to clean the microwaves imagine my shock at all the food and teachers. Of course they welcomed me and said "Have some lunch Noranne" I was so confused and awkward (I mentioned that I was awkward and they all laughed), A+B now equals D. The math suddenly changed and I was scrambling to figure out why. I ate lunch an I appear to be totally fine but inside I was scared of getting yelled at by my supervisor. After lunch we talked before I left to go clean. She said ordinarily I wouldn't be allowed to eat in the lounge but today was ok. I nodded and was fine with it and I went back to work with some cookies and a clementine for later nomming. I was upset and confused but I went with it.
Changing routine is not something that parents do all the time unless they have to. Many know the consequences of breaking the equation to throwing a "whatever" into it. However many autists do learn to be "flexible" or rather in my case. Keep our frustrations and anger internal because gods forbid we ever get confuse when NT's do something that fucks up everything.
We also like routine I believe because we like to have a little control. One of the reasons I am so flexible at home than at work is because at home I can make my own decisions and not get punished. I don't have that power at work. So I want to know that after first period set up I start on heating second period's lunch. Because I have that power that knowledge. It's the only security I have and finally for some, it's the only comfort we have.
We like the comfort of A+B=C.
Even someone that can go with the flow has a set pattern. Even on the bus I sit on the same seat every day unless someone else is in it then I sit close by. Being anal about punctuality has a bonus though, I am almost never late to work. and I call in sick when I am under the weather.
Why are us autist so ridged when NTs are so pelt-melt? I can't tell you why I have to do the things I do. I'm not inflexible, I do other things within my morning routine like get a cup of coffee on the way to work, or cast runes or do tarot before I leave. In the afternoon I am back on the computer and I don't get off until I go get something to eat. Occasionally I go out with a friend on the weekends. But generally I keep to a pattern.
It's believe that we do this because we can't be abstract and have very black and white perspective. I don't think this is all the way true. We can be abstract but we're not black and white. I believe we're mathmatical thinkers. We follow a basic logic. A+B=C NT's don't. They are more, "A+B=whatever" They think logicily yes, but not mathematically. A mathematical thinker doesn't just put whatever answer the feels fits and then changes it when ever he likes. A+B=C that's it. For some autists, formals don't just change and when they do it doesn't make sense and we get confuse and panic. Because if "A+B=C.2 then what about the other formals and equations we follow? Does F-D+U=A now? We get angry when we're thrown off routine not because we're stubborn and we have to do things just so, but because now I don't know what to do or what the right response is and we end up panicking.
Whilst I am very flexible and I do enjoy spontaneity when I am not working and I love adventuring and exploring the new and the unknown (right brained here) Work is different. I have to follow a set of rules and routines. Getting me off these rules is not a good idea. Here is an example of this.
On Wendsday, the parents threw a big lunch for the teachers in an act of thanks. I had no idea about this. So when I walked into the Teacher's Lounge to clean the microwaves imagine my shock at all the food and teachers. Of course they welcomed me and said "Have some lunch Noranne" I was so confused and awkward (I mentioned that I was awkward and they all laughed), A+B now equals D. The math suddenly changed and I was scrambling to figure out why. I ate lunch an I appear to be totally fine but inside I was scared of getting yelled at by my supervisor. After lunch we talked before I left to go clean. She said ordinarily I wouldn't be allowed to eat in the lounge but today was ok. I nodded and was fine with it and I went back to work with some cookies and a clementine for later nomming. I was upset and confused but I went with it.
Changing routine is not something that parents do all the time unless they have to. Many know the consequences of breaking the equation to throwing a "whatever" into it. However many autists do learn to be "flexible" or rather in my case. Keep our frustrations and anger internal because gods forbid we ever get confuse when NT's do something that fucks up everything.
We also like routine I believe because we like to have a little control. One of the reasons I am so flexible at home than at work is because at home I can make my own decisions and not get punished. I don't have that power at work. So I want to know that after first period set up I start on heating second period's lunch. Because I have that power that knowledge. It's the only security I have and finally for some, it's the only comfort we have.
We like the comfort of A+B=C.
Wednesday, December 16, 2009
Siblings and Autism
I had a bunch of posts lined up but I can't seem to get all my thoughts organized. Hmmm. Lets see if I can remedy that.
At first I hated Tikaani. I was only seven when first met him. He bit me and he drooled a lot. Momma had to nurse him all the time because he would spend hours crying. He was clingy and destructive. I hated him...but I was also jealous too.
Rahmet opens this topic tonight. He was Tikaani's cousin and Hanai's youngest son. He was also a waterbender which if you are not familar with the Avatar the Last Airbender universe, is talent in which members of the Water Tribe are able to manipulate the element of water by doing martial art stances. Tai Chi was uses as a base for Waterbending. Anyway I am getting off topic.
He was the only member of his family beside his father Maka and his uncle Amana that can bend. So he was pretty special in his family and he did get a lot of attention and praise from his parents and uncle, and all of that was torn away when Tikaani arrived. He was no longer the center of the house. So you can imagine how bitter Rahmet was when not only did someone took away your place in the sun, but this someone:
-Breaks your toys, screams in the middle of the night, pees in the middle of the house, steals your prized possessions, bites you and makes outings and special events almost non-existent and on top of it, all your friends now desert you.
It was no wonder Rahmet was pretty irritated with Tikaani and bullied him often.
It was the same for me and Katie, only I was the eldest. However because of my constant habit of causing trouble and the fact I had hard time comprehending anything, I was the butt-monkey of the family and Katie's favorite chew toy.
This doesn't apply to me or my fictional characters. Many kids with autistic siblings feel "outsourced." They often have "Normal Kid" syndrome. In which the NT or abled child feels shadowed by their special needs sibling/s and react with jealousy or contempt. This isn't uncommon, my sisters hated me. I was the family enabler and shit-stirrer I was the one that got sent to the principle's office regularly, I embarrassed them often.
But what about Tikaani. How did he feel about his cousins?
Rahmet was frustrating. He always wanted to see me cry. He yelled at me for no reasons or reasons I didn't understand. He always called me names. I hated it when he pulled my hair or ruffled it and it confused him when I reacted to it with pain. I didn't know how to relate to him. I was jealous he could bend make the water dance. He gloated all the time how 'easy' it was to bend. Maybe he would like me better if I could bend. I wanted him to like me.
Autists often feel aloof around their NT siblings. We can't relate to them and we have hard time figuring out what they want from us. My sister confessed to me one day on the way to thanksgiving that the reason she was so sarcastic and mean to me was she wanted a reaction out me since I could never react typically. I just wanted to know if she loved me. When we got older we grew up a little bit but in the end we still fight and butt heads. Yet I matured greatly and Katie gained some understanding.s
I understand why NT siblings often feel angry and sometimes can be the biggest pro-cure nut balls out there. I think deep down they are still resentful of their siblings. I think subconsciously if they were 'cured' they would be easier to understand than easy to dislike. In the same concept I can understand why autists feel so frustrated and apathetic to their NT sibs. They seem to no understand the principle of being disabled. Or the frustration of being "Llama" among other sheep. They can't empathize with use and we in return can seem get them to understand.
It's vicious cycle of bitterness and disconnect and it affects siblings of all ages. While the media paints a sweet picture of siblings wanting to help their siblings and love them. They miss the fighting and arguing, tantrum and bulling that goes behind scenes. I wouldn't be surprised that some siblings when the find out that their autistic brother and sister goes missing, subconsciously wish that they never come back. It's common. Not pretty and sweet but it's honest.
So what can we do to connect the NT and and the autistic siblings. The first thing is to admit that not everything is going to be perfect. The second is forgiveness. I forgave Katie, Katie forgave me. We're a lot better together now that we're not living under the same roof. Which will probably help thing with other siblings. Not competing for the same affection and affirmations makes life a lot less stressful. Eventually with time, we can learn from our past mistakes and walk forward. Heck I even forgave Katie for admitting if she had an autistic child she would put it up for adoption, brave of her to state, but not something you would mention to your autistic sister, really. That was classy Katie <.<
So what about Tikaani and Rahmet?
Now? I am Tikaani's greatest advocate. I grew up. I spent most of my time with Shaman Jaki when I was thirteen. I studied all the time and I found strength with my faith in the ocean spirit Tui. With that I was able to shed my disdain and finally see the beauty inside my cousin. I started to appreciate his laughter, the way he rocked and wiggled his hands. As I and he grew I wanted nothing more than to be his strength. I still get frustrated with him and I feel like some days I should just jump in a canal. Yet I despite those days I wake up and start the day knowing that Tui made him for a reason and perhaps it's to teach me imperfect beauty.
Something to think about.
Thursday, October 22, 2009
Pro-cure autists.
As much as many want to believe a lot of autists don't feel the same way as neuro-ds do. Many of them fall in to the dissonance of loathing and deprivation. Though this is pitiable and sometimes rather pathetic. It's understandable that they like parents when they find out their children are autistic that they too go through a grieving process.
The "autie" version of Curbie Bingo shows many examples of autists discriminating against other autists and autistic self-hate. Though I reciprocate much of their hurt and confusion a world that is so discriminating. But separating yourself from your diagnosis and hunting for the "unicorn" that is the cure, is really disappointing. Why? Because your setting yourself up for a "cure" is really succumbing to the lies of the neurotypical society and letting yourself be cowed by outside pressures. While I may be pro-choice when it comes to cure and I will not stop anyone from looking for a cure. I will however, pity those that do and hope that they will find happiness even it means for something that doesn't exist and placebo effects.
Acceptance does not mean no treatment. It means having courage to change what you can and they serenity and grace to accept the things you can't change. To pull something from Disney's Gargoyles; Hudson, an elder gargoyle said to the younger trio, that A gargoyle cannot stop protecting the castle as it cannot stop breathing the air (I think), in that same tangent an autist cannot stop being autistic in the manner we cannot stop breathing the air.
The "autie" version of Curbie Bingo shows many examples of autists discriminating against other autists and autistic self-hate. Though I reciprocate much of their hurt and confusion a world that is so discriminating. But separating yourself from your diagnosis and hunting for the "unicorn" that is the cure, is really disappointing. Why? Because your setting yourself up for a "cure" is really succumbing to the lies of the neurotypical society and letting yourself be cowed by outside pressures. While I may be pro-choice when it comes to cure and I will not stop anyone from looking for a cure. I will however, pity those that do and hope that they will find happiness even it means for something that doesn't exist and placebo effects.
Acceptance does not mean no treatment. It means having courage to change what you can and they serenity and grace to accept the things you can't change. To pull something from Disney's Gargoyles; Hudson, an elder gargoyle said to the younger trio, that A gargoyle cannot stop protecting the castle as it cannot stop breathing the air (I think), in that same tangent an autist cannot stop being autistic in the manner we cannot stop breathing the air.
Thursday, October 15, 2009
A proper place to fall apart.
Today was the school's first test on one of my meltdowns. It was not even a Stage one* and got myself out of it, but it was the first image that I am not always 100% functional all the darn time.
What happened was that some child pulled down the fire switch and it was during the Second Lunch and I was drawing since I finished heating all the lunches and I had some time to kill before clean up. The noise of the alarm sent me into overload instantly. I never heard that sound before and I had no idea what was going on I just knew that "LOUD NOISE IS BAD" and I reacted by covering my ears and rocking. But I had to get the kids out with the other teachers. I hate that godfucking siren. If felt like someone was poking me with a needle the noise was painful and jarring and very uncomfortable.
When I got out I was almost in tears. I was swaying and I still had a grip on my verbal skills, but I could only bite my hands (yes Tikaani does this too when he is unhappy) and rock. Then something amazing (at least to me) happened. The teachers where concerned. Not at what I was doing but at me. They saw my distress and comforted me appropriately. They didn't ask me "What's wrong, are you ok?" because it was obvious by the way I was stimming and swaying that I wasn't. Instead M one of the teachers ask if I wanted a "squeeze" I remember nodding and she wrapped her arm around me and squeezed me close. I took several deep breaths and the pressure defitinty alleviated the panic and helped me process and calm down a lot faster. I wasn't all the way together but I manage to work without too much problem.
I walked to E my boss about the incident, after discussing about she alerting me to any planned drills when I am in the building. I wasn't totally verbal I was gesturing and stuttering but I made some what sense. The bottomline is that E understands why I meltdown and might have moments when I can't calm down. She says I will never loose my job because I have a meltdown and she will accommodate me with whatever I need.
For the first time. I didn't feel I have to suffer to get work down. I can take off the mask and I won't be punished for it. I didn't felt patronized and the teachers wanted to support me. I felt relieved that I won't be punished for things out of my hands. I makes me want to work harder on controlling sensory overload and sensitivity to information and better processing skills. But I know that there is place where I can fall apart and pick myself up.
What happened was that some child pulled down the fire switch and it was during the Second Lunch and I was drawing since I finished heating all the lunches and I had some time to kill before clean up. The noise of the alarm sent me into overload instantly. I never heard that sound before and I had no idea what was going on I just knew that "LOUD NOISE IS BAD" and I reacted by covering my ears and rocking. But I had to get the kids out with the other teachers. I hate that godfucking siren. If felt like someone was poking me with a needle the noise was painful and jarring and very uncomfortable.
When I got out I was almost in tears. I was swaying and I still had a grip on my verbal skills, but I could only bite my hands (yes Tikaani does this too when he is unhappy) and rock. Then something amazing (at least to me) happened. The teachers where concerned. Not at what I was doing but at me. They saw my distress and comforted me appropriately. They didn't ask me "What's wrong, are you ok?" because it was obvious by the way I was stimming and swaying that I wasn't. Instead M one of the teachers ask if I wanted a "squeeze" I remember nodding and she wrapped her arm around me and squeezed me close. I took several deep breaths and the pressure defitinty alleviated the panic and helped me process and calm down a lot faster. I wasn't all the way together but I manage to work without too much problem.
I walked to E my boss about the incident, after discussing about she alerting me to any planned drills when I am in the building. I wasn't totally verbal I was gesturing and stuttering but I made some what sense. The bottomline is that E understands why I meltdown and might have moments when I can't calm down. She says I will never loose my job because I have a meltdown and she will accommodate me with whatever I need.
For the first time. I didn't feel I have to suffer to get work down. I can take off the mask and I won't be punished for it. I didn't felt patronized and the teachers wanted to support me. I felt relieved that I won't be punished for things out of my hands. I makes me want to work harder on controlling sensory overload and sensitivity to information and better processing skills. But I know that there is place where I can fall apart and pick myself up.
Wednesday, October 7, 2009
How to teach humans to speak Drakk.
Opening fiction: Lucian
I could speak my own language fluently. The clicks, chirps whisles and growls are part of a complex pattern. Drakk, my native tongue is instrinstic to me as humans speaking verbal is instrinstic to them. However teaching the humans the launguage of the dragon-folk is both a laudable and foolish task.
Language or lack there off is one of the core differators in Autism. Autists of all colors have problems in commuication and language. "Red" or Asperger autists speak like foreigners speaking English fluently. They know their own native tongue but they can converse English well, abiet they have trouble in some cases. Whilst Purple autist know their language and struggle to learn a totally diffrent and equally complex one.
Diagnosticly the difference between a Red and Purple autist is simply, when the child started talking. Precocious speakers learned verbalize quickly and can hold conversations, lack of langauge delay is what makes a autist an asperger or an HFA. But beyond diagnosisic symptoms, even aspergers have trouble speaking what really is to us, a foreign language. Even the most fluent, stumble and trip around signals and diologue. For us, verbal communication is very clumsy and often hard to process. However we so manage and use it well enough to go through out the world without causing so much of a head turn. At least for us lucky "Red" autists. But this isn't about us learning verbal communication, but for NT's to learning our language.
The opening diologue is spoken by a Drakkhani (humanoid dragon-like creatures) man named Lucian Galesong. His language is a complex mix of clicks, growls and words, with body language and posture to accent it. Many of the words spoken in 'Drakk' are almost unpronunceable by English speaking humans. The written "romanized' words are spoken nothing like they are written and it becomes a difficult and frustrating language for humans to speak. So. Most all together make the Drakkhani people learn English, which to them is a very hard, but in the same hand simple language. Many like my character Quasar, learn it but never reach the point where they can talk just as well as humans. Lucian and Taajah both learn to speak "Human words" at an early age and speak it without an accent or major problems. For Drakkhani many never learn for a varity of reasons (Wildborn, too old, ect) but humans refuse to bother with Drakk.
This is the thesis of language with autuistic people and typicals. Why do we struggle with learning your langage your words your culture. But act like learning ours is some great mystery. Though it can be challenging and engimatic, it feels like only autist bother with crossing the vast and shakey bridge which is communication but NTs are tapping their feet waiting for us to cross it.
Today was interesting however. As I was heating up lunch I remarked to "L" who was watching the microwave carosel spin, "Huh, you like watching the micro wave don't you? Probably because it spins. Don't worry I still like to watch celing fans go around and around." Later as I finshed up, one of the teachers approuched me and asked. "What attracted you to celing fans?" That wasn't a hard question but difficult ot explain in the right words. I told her it was simply because I just needed something to focus on, something constant and unchanging. Everything in this world shifts and moves erractily. Celing fans say the same. It's a little peiece of continuality that never veers off from the norm. Autistics seem to be drawn to that. She thanked me and continued helping the class.
All the while I was thinking. "Huh, so one person step foot on that bridge."
I could speak my own language fluently. The clicks, chirps whisles and growls are part of a complex pattern. Drakk, my native tongue is instrinstic to me as humans speaking verbal is instrinstic to them. However teaching the humans the launguage of the dragon-folk is both a laudable and foolish task.
Language or lack there off is one of the core differators in Autism. Autists of all colors have problems in commuication and language. "Red" or Asperger autists speak like foreigners speaking English fluently. They know their own native tongue but they can converse English well, abiet they have trouble in some cases. Whilst Purple autist know their language and struggle to learn a totally diffrent and equally complex one.
Diagnosticly the difference between a Red and Purple autist is simply, when the child started talking. Precocious speakers learned verbalize quickly and can hold conversations, lack of langauge delay is what makes a autist an asperger or an HFA. But beyond diagnosisic symptoms, even aspergers have trouble speaking what really is to us, a foreign language. Even the most fluent, stumble and trip around signals and diologue. For us, verbal communication is very clumsy and often hard to process. However we so manage and use it well enough to go through out the world without causing so much of a head turn. At least for us lucky "Red" autists. But this isn't about us learning verbal communication, but for NT's to learning our language.
The opening diologue is spoken by a Drakkhani (humanoid dragon-like creatures) man named Lucian Galesong. His language is a complex mix of clicks, growls and words, with body language and posture to accent it. Many of the words spoken in 'Drakk' are almost unpronunceable by English speaking humans. The written "romanized' words are spoken nothing like they are written and it becomes a difficult and frustrating language for humans to speak. So. Most all together make the Drakkhani people learn English, which to them is a very hard, but in the same hand simple language. Many like my character Quasar, learn it but never reach the point where they can talk just as well as humans. Lucian and Taajah both learn to speak "Human words" at an early age and speak it without an accent or major problems. For Drakkhani many never learn for a varity of reasons (Wildborn, too old, ect) but humans refuse to bother with Drakk.
This is the thesis of language with autuistic people and typicals. Why do we struggle with learning your langage your words your culture. But act like learning ours is some great mystery. Though it can be challenging and engimatic, it feels like only autist bother with crossing the vast and shakey bridge which is communication but NTs are tapping their feet waiting for us to cross it.
Today was interesting however. As I was heating up lunch I remarked to "L" who was watching the microwave carosel spin, "Huh, you like watching the micro wave don't you? Probably because it spins. Don't worry I still like to watch celing fans go around and around." Later as I finshed up, one of the teachers approuched me and asked. "What attracted you to celing fans?" That wasn't a hard question but difficult ot explain in the right words. I told her it was simply because I just needed something to focus on, something constant and unchanging. Everything in this world shifts and moves erractily. Celing fans say the same. It's a little peiece of continuality that never veers off from the norm. Autistics seem to be drawn to that. She thanked me and continued helping the class.
All the while I was thinking. "Huh, so one person step foot on that bridge."
Friday, October 2, 2009
Backup "Just want kind of ethics are you fucking sideways?"
Are you serious! How dare you! You can't just go up and walk into his head like that. How do you know it won't have an adverse effect? He isn't like Jet who's was brainwashed. Tikaani's mind something completely different. Who knows what will happen if you even try? Have you even fathomed to ask for his permission or are you just going to up to him and go 'o hai surprise brain rape?' cause I would like to know what kind of ethics y'all are fucking over sideways.”
-Toph from Cui Bono
This is a selection from scene in Cui Bono in which Tikaani has regresses which worry the canon characters, Aang suggests to Katara about using water-healing on Tikaani's mind to see what is bothering him and use it as a form of therapy. Toph the blind earthbender, who empathizes with Tikaani disagrees and thinks what their doing is "wrong"
Which brings up a good question. What are the ethics in treating autistic children and how should we go about it? Many parents do not object to ABA, Speech and Physical therapy as ways to treat their son or daughter. But at one point is it ethical to ask for consent? I think many parents always have the excuse "I know what's best for Lily or Joey" but never realize that as an 'Observer' they are looking though a pair of lenses that doesn't see all the colors, so while they may have best intentions they are often one-sided.
So I am sure people are now thinking 'So if I wash off all the layers, is the bottom line that Bard Child is against treatment?' the answer is 'no', I am not against treatment of malign behaviors. I am against is this rational that hiding your child your daughter in the medical dark is ethical. Now I understand that there are a lot of exceptions and . People would say 'my child is non-verbal, I am doing this treatment so s/he can become verbal.' Ok then I can understand that rational very well, but would it be better to find a language that your child can use that isn't verbal-based? Perhaps something that s/he he can use easily and communicate clearly with? Perhaps the first step is not "fix the child" but rather "start communication". Once he s/he has communication method that is him/her is comfortable using and can be understood (pictures, sign, type), the next step is the one many parents ignore. Listen to what they have to say. Ask them their thoughts on their perspective:
Now you shouldn't include them in very single detail but telling them the side-effects of their Ritalin is better that listening to them complain about how anxious they feel and wonder if they know it's just side-effect. Now I don't believe two year old should worry about the side-effects of their medication(if they are on meds), but eight-year old on 50mgs of Adderal should know the effects it has on him not the just good but the bad too. That way he could reason that the anxiousness and slight light-headedness is just minor effect and nothing to be totally worried about, but sever dizziness is something that he should tell ma and pa about. How you should approuch treatment to you child should be age appropriate. Asking them how they feel after each therapy session and getting feedback from them is teaching them an important skill in relay and to tell mom and dad if something isn't working. Once their older like around 10-13 then actually asking them if "Do what do you think about putting you on new meds, do you want to continue meds? What do want to explore other treatments?" Eventually there will be point in which they want to refuse treatment all together if nothing is effective anymore.
I guess when it comes down it's less "asking permission' but including them in discussion. Education on what treatments they are reciving is probably the best skill that you can teach them. They can't rely on doctors all the time, they should build the skills needed to learn what medications/therapies effect them and how effective are they.
I was never given this oppertunity. I didn't know what I was on until I was around 8-9 or what it was for until age 13. My parents thought that I didn't need to know. It's no fun feeling angry, upset and or hungry all the time without any reason why. I wasn't included in the discussion until I was 15 and even then I was often ignored. The bottom line, I learn to hate drug treatment because I wasn't taken seriously when at age 12 I said "I hate taking pills". Depakote put me in the hospital because I was overmedicated (oddly enough it was also that allowed me to be diagnosed) Psycho-stims made me an aggressive monster prone to violent rages. No body fucking listened. The only treatment that I felt was working was behavioral therapy and horseback riding I still the former but I cannot do the latter. My mother only invested in drug treatment because she so hoped that work and swore she saw improvement. Until the day I keel over, I believe my mother only saw what she wanted to see. And never saw what I saw.
In all, treating your child is all well in good, but what good is keeping them ignorant? Is it the old ideal of kids being innocent and young and it's better to not worry their pretty little head? Or the fact kids are too dumb to understand? While this applies to any child on psychatric medication or treatment, the problem for us autists is that some kids neurotypical kids eventually get the luxury of being treated like member of the commitee and asked about how they feel and what their thoughts are. For us? Probably never. If you get the diagnosis early enough, they are going to do all in their power treat you and once you get the verbal skills to communicate your feelings on the matter, they mostly will disregard it or assume because we more communicative the treatment is working. In all I feel many autists get the short end of the stick when it comes to being a part of the treatment discussion. I feel many of their opinions are simply waved aside because of stigma which is the most frustrating thing in the world. Not just autists feel this way, I know my friend J who is Schizofrienic and Bi Polar with smatterings of PTSD, feels like his opinions are being ignored because of the stigma of 'crazy'.
The biggest issues is the point in which the autist is now and adult and parents and caregivers are still administrating treatment. At that point no longer including them in the discussion. It's now asking permission. And if the autist is non-verbal, it brings the biggest clusterfuck of issues than you can shake a stick at, ethics are often throw out the window and into deep space.
So to wrap it up, while I did start about asking consent, I think what I was trying to communicate, is letting your child participate in him/her's treatment and let him/her communicate him/her thoughts/fears and opinions without the fear of them being patronized or being ignored because of disability stigma or age.
The crux of it all is not treatment, but the concept that NTs always know what's best for autists and therefore can administer treatment to said autist without telling them a damn thing, or bullshit them as much possible. They will pull every excuse out of the book and rationalize like crazy. But in all, not educating them giving them all facts on what is administered to me is the highest example of systemized ableism.
Bio-med parents are the biggest perpatrators of this, they are more or enforcers of ableistic concepts of what is considered 'of value' and will continue to...well to quote Toph 'fuck ethics sideways'. Nothing that they do is based on the perspective of the autist. Just on what they feel is right. The autist's opinions are often discarded to make room for the privilaged NT's. They do not listen to autists of many colors because they cannot be wrong. They will do everything to justify their ethic-breaking, everything from demonizing ND, distorting facts, and martyrizing. They react with fear, not wisdom and knowledge, they are terrified and doubt what they are doing is even working or right. I pity the bio-med so damn much. They miss the point, the whole objective, they act like they are the man-gods of medical community and that we are just dumb plebians not knowing what good for us.
That's right bio-med, feed the hate, feed the fear; drown in your own guilt and false-enlightenment. We'll still be here, next time try talking to us once you finished spiraling into the descent of disillusionment.
still bitter as hell
Bard.
PS: Bard Child needs to not write while listening to grunge metal and drinking irish coffee....makes the aspie-wolf fang-y and bitter. ):<
-Toph from Cui Bono
This is a selection from scene in Cui Bono in which Tikaani has regresses which worry the canon characters, Aang suggests to Katara about using water-healing on Tikaani's mind to see what is bothering him and use it as a form of therapy. Toph the blind earthbender, who empathizes with Tikaani disagrees and thinks what their doing is "wrong"
Which brings up a good question. What are the ethics in treating autistic children and how should we go about it? Many parents do not object to ABA, Speech and Physical therapy as ways to treat their son or daughter. But at one point is it ethical to ask for consent? I think many parents always have the excuse "I know what's best for Lily or Joey" but never realize that as an 'Observer' they are looking though a pair of lenses that doesn't see all the colors, so while they may have best intentions they are often one-sided.
So I am sure people are now thinking 'So if I wash off all the layers, is the bottom line that Bard Child is against treatment?' the answer is 'no', I am not against treatment of malign behaviors. I am against is this rational that hiding your child your daughter in the medical dark is ethical. Now I understand that there are a lot of exceptions and . People would say 'my child is non-verbal, I am doing this treatment so s/he can become verbal.' Ok then I can understand that rational very well, but would it be better to find a language that your child can use that isn't verbal-based? Perhaps something that s/he he can use easily and communicate clearly with? Perhaps the first step is not "fix the child" but rather "start communication". Once he s/he has communication method that is him/her is comfortable using and can be understood (pictures, sign, type), the next step is the one many parents ignore. Listen to what they have to say. Ask them their thoughts on their perspective:
- Do you feel that you are different/disabled?
- Do you feel left out a lot in school and home?
- What do you feel that is bothering you the most?
- What can we do to make you feel better?
- What are you're goals?
- How can we reach them together?
Now you shouldn't include them in very single detail but telling them the side-effects of their Ritalin is better that listening to them complain about how anxious they feel and wonder if they know it's just side-effect. Now I don't believe two year old should worry about the side-effects of their medication(if they are on meds), but eight-year old on 50mgs of Adderal should know the effects it has on him not the just good but the bad too. That way he could reason that the anxiousness and slight light-headedness is just minor effect and nothing to be totally worried about, but sever dizziness is something that he should tell ma and pa about. How you should approuch treatment to you child should be age appropriate. Asking them how they feel after each therapy session and getting feedback from them is teaching them an important skill in relay and to tell mom and dad if something isn't working. Once their older like around 10-13 then actually asking them if "Do what do you think about putting you on new meds, do you want to continue meds? What do want to explore other treatments?" Eventually there will be point in which they want to refuse treatment all together if nothing is effective anymore.
I guess when it comes down it's less "asking permission' but including them in discussion. Education on what treatments they are reciving is probably the best skill that you can teach them. They can't rely on doctors all the time, they should build the skills needed to learn what medications/therapies effect them and how effective are they.
I was never given this oppertunity. I didn't know what I was on until I was around 8-9 or what it was for until age 13. My parents thought that I didn't need to know. It's no fun feeling angry, upset and or hungry all the time without any reason why. I wasn't included in the discussion until I was 15 and even then I was often ignored. The bottom line, I learn to hate drug treatment because I wasn't taken seriously when at age 12 I said "I hate taking pills". Depakote put me in the hospital because I was overmedicated (oddly enough it was also that allowed me to be diagnosed) Psycho-stims made me an aggressive monster prone to violent rages. No body fucking listened. The only treatment that I felt was working was behavioral therapy and horseback riding I still the former but I cannot do the latter. My mother only invested in drug treatment because she so hoped that work and swore she saw improvement. Until the day I keel over, I believe my mother only saw what she wanted to see. And never saw what I saw.
In all, treating your child is all well in good, but what good is keeping them ignorant? Is it the old ideal of kids being innocent and young and it's better to not worry their pretty little head? Or the fact kids are too dumb to understand? While this applies to any child on psychatric medication or treatment, the problem for us autists is that some kids neurotypical kids eventually get the luxury of being treated like member of the commitee and asked about how they feel and what their thoughts are. For us? Probably never. If you get the diagnosis early enough, they are going to do all in their power treat you and once you get the verbal skills to communicate your feelings on the matter, they mostly will disregard it or assume because we more communicative the treatment is working. In all I feel many autists get the short end of the stick when it comes to being a part of the treatment discussion. I feel many of their opinions are simply waved aside because of stigma which is the most frustrating thing in the world. Not just autists feel this way, I know my friend J who is Schizofrienic and Bi Polar with smatterings of PTSD, feels like his opinions are being ignored because of the stigma of 'crazy'.
The biggest issues is the point in which the autist is now and adult and parents and caregivers are still administrating treatment. At that point no longer including them in the discussion. It's now asking permission. And if the autist is non-verbal, it brings the biggest clusterfuck of issues than you can shake a stick at, ethics are often throw out the window and into deep space.
So to wrap it up, while I did start about asking consent, I think what I was trying to communicate, is letting your child participate in him/her's treatment and let him/her communicate him/her thoughts/fears and opinions without the fear of them being patronized or being ignored because of disability stigma or age.
The crux of it all is not treatment, but the concept that NTs always know what's best for autists and therefore can administer treatment to said autist without telling them a damn thing, or bullshit them as much possible. They will pull every excuse out of the book and rationalize like crazy. But in all, not educating them giving them all facts on what is administered to me is the highest example of systemized ableism.
Bio-med parents are the biggest perpatrators of this, they are more or enforcers of ableistic concepts of what is considered 'of value' and will continue to...well to quote Toph 'fuck ethics sideways'. Nothing that they do is based on the perspective of the autist. Just on what they feel is right. The autist's opinions are often discarded to make room for the privilaged NT's. They do not listen to autists of many colors because they cannot be wrong. They will do everything to justify their ethic-breaking, everything from demonizing ND, distorting facts, and martyrizing. They react with fear, not wisdom and knowledge, they are terrified and doubt what they are doing is even working or right. I pity the bio-med so damn much. They miss the point, the whole objective, they act like they are the man-gods of medical community and that we are just dumb plebians not knowing what good for us.
That's right bio-med, feed the hate, feed the fear; drown in your own guilt and false-enlightenment. We'll still be here, next time try talking to us once you finished spiraling into the descent of disillusionment.
still bitter as hell
Bard.
PS: Bard Child needs to not write while listening to grunge metal and drinking irish coffee....makes the aspie-wolf fang-y and bitter. ):<
Back up "But we do learn"
Looking back on how each her children have grown, Hanai recalled on how each of her little ones have struggled and reached those milestones. Her eldest was Elang, who talked rather early but walked late around 13 months, her only daughter Qaniit talked later but was easier to toilet train, but she it took her a while to learn how to chop wood. Elang had special knack for buffaloyaks and Qaniit loved to sow. Rahmet her youngest son was the only waterbender. He loved to swim but he was also the laziest of the group and incessiant tattler. He walked on and talked on time but never fully toilet trained until he was four. Tikaani however, seem to destroy all her notions on development.
He didn't start walking until he was almost two, around twenty months, and often toe-walks and has issues with balance. He spoke his first words (more rice) when he was around eight and wasn't toilet trained until he was twleve. Maka her husband worried that Tikaani would never speak or be toilet trained, but Hanai knew that all kids grew differently. Tikaani will reach those points in life, at glaciers pace yes, but he will reach them. Hanai just had to be diligent and look at the gifts that Tikaani did have. He could memorize sounds from all sorts of animals and had perfect rhythm. Focusing on never being able measure right or read or sowing right away was unimportant and futile. She had to focus on what he can do and what he was learning.
I think this is gonna be pattern on how I open essays...one or two paragraphs on Hanai. Anyway it brings up today's topic. We do learn but we learn slowly some so slow that it's hard for normatives to tell if we are learning at all. I still struggle with arthimathtics and numbers (don't have that stereotypical love for numbers) I like letters and word patterns but the mechanics of language eludes me. I wasn't potty trained until I was four, I talked early and walked at an average age, still at age three I couldn't tell right from left I had a hard time recognizing patterns and sequence. I was impulsive and distracted and never could fully process A+B=C. At age 3-4 I was diagnosis with ADHD/ADD my father was diagnosed with the same. It wasn't a correct diagnosis, but a precocious speaking female four year old wasn't going to be labeled with a developmental disability in 90-91.
It baffled my mother and father who always talked how "Smart I was" but always struggle with school. I was failing Biology when my father knew that was one of my better subjects (according to him) and how I should be passing with flying colors. However the fail to notice that I did better in Drama class and in Latin than I did in my more mathmatical classes. I did better in History (and to my teachers chagrin I often corrected her.) For my sophmore year we had a creative writing assignment in English. My teacher wanted us write three pages on a real life event or a fictional event. Low and behold to my fathers amusement and my teachers irritation. I wrote 27 pages on an epic story about winged people (called harpies but not to be confused with the mythical critters), fighting an ursupation of their throne and restoring peace to their world that was suffering a violent genocide. Back then I was pissed that I got a C on it. But my teacher didn't want to read through 27 pages. I was proud however that I wrote around 700 words or so and all hand written. However I think I had to cull it down to four pages and I STILL got a C on it. Mrs Gibbison apparently hated fantasy.
The whole point that I am rambling here is the fact that autistics learn different things at different paces. And we do learn them, the problem is some of those tasks are learned in patterns that we are not familiar with and we struggle to learn them. What I discovered, is that I sucked at algebra but I did like geometry and permutations. Problitlity became exciting for me. However I didn't excel in those two subjects but I was keen to learn them. Because we learn differently I find it frustrating for parents to teach skills in ways that I struggle to understand and have no interest in. I did learn how to wash dishes and fold clothes and do laundry but at my own pace. I did learn to tie my shoes. At my own pace. It's this endless rush to learn and complete something that becomes the source of frustration for me personally. And my parents did nothing to end it.
Focusing on what you want to learn is more important than learning the next thing on the list. If I have interest in washing my own clothes than focus on that instead of making me do it an then yell at me when I did it wrong. If I want to learn a new language than get me lessons instead of saying that is too expensive and throw it out the window. Continue to facilitate skills that we love to learn and do. One of the biggest things I miss is improving my talent with equestrian sports. If only I had the resources I would be back on the saddle in no-time. Just keep encouraging to do the things we have interest in and do them well, as for important life skills, we will learn them. It just takes time, a lot of time for us. But don't rush us, it does more harm than good.
He didn't start walking until he was almost two, around twenty months, and often toe-walks and has issues with balance. He spoke his first words (more rice) when he was around eight and wasn't toilet trained until he was twleve. Maka her husband worried that Tikaani would never speak or be toilet trained, but Hanai knew that all kids grew differently. Tikaani will reach those points in life, at glaciers pace yes, but he will reach them. Hanai just had to be diligent and look at the gifts that Tikaani did have. He could memorize sounds from all sorts of animals and had perfect rhythm. Focusing on never being able measure right or read or sowing right away was unimportant and futile. She had to focus on what he can do and what he was learning.
I think this is gonna be pattern on how I open essays...one or two paragraphs on Hanai. Anyway it brings up today's topic. We do learn but we learn slowly some so slow that it's hard for normatives to tell if we are learning at all. I still struggle with arthimathtics and numbers (don't have that stereotypical love for numbers) I like letters and word patterns but the mechanics of language eludes me. I wasn't potty trained until I was four, I talked early and walked at an average age, still at age three I couldn't tell right from left I had a hard time recognizing patterns and sequence. I was impulsive and distracted and never could fully process A+B=C. At age 3-4 I was diagnosis with ADHD/ADD my father was diagnosed with the same. It wasn't a correct diagnosis, but a precocious speaking female four year old wasn't going to be labeled with a developmental disability in 90-91.
It baffled my mother and father who always talked how "Smart I was" but always struggle with school. I was failing Biology when my father knew that was one of my better subjects (according to him) and how I should be passing with flying colors. However the fail to notice that I did better in Drama class and in Latin than I did in my more mathmatical classes. I did better in History (and to my teachers chagrin I often corrected her.) For my sophmore year we had a creative writing assignment in English. My teacher wanted us write three pages on a real life event or a fictional event. Low and behold to my fathers amusement and my teachers irritation. I wrote 27 pages on an epic story about winged people (called harpies but not to be confused with the mythical critters), fighting an ursupation of their throne and restoring peace to their world that was suffering a violent genocide. Back then I was pissed that I got a C on it. But my teacher didn't want to read through 27 pages. I was proud however that I wrote around 700 words or so and all hand written. However I think I had to cull it down to four pages and I STILL got a C on it. Mrs Gibbison apparently hated fantasy.
The whole point that I am rambling here is the fact that autistics learn different things at different paces. And we do learn them, the problem is some of those tasks are learned in patterns that we are not familiar with and we struggle to learn them. What I discovered, is that I sucked at algebra but I did like geometry and permutations. Problitlity became exciting for me. However I didn't excel in those two subjects but I was keen to learn them. Because we learn differently I find it frustrating for parents to teach skills in ways that I struggle to understand and have no interest in. I did learn how to wash dishes and fold clothes and do laundry but at my own pace. I did learn to tie my shoes. At my own pace. It's this endless rush to learn and complete something that becomes the source of frustration for me personally. And my parents did nothing to end it.
Focusing on what you want to learn is more important than learning the next thing on the list. If I have interest in washing my own clothes than focus on that instead of making me do it an then yell at me when I did it wrong. If I want to learn a new language than get me lessons instead of saying that is too expensive and throw it out the window. Continue to facilitate skills that we love to learn and do. One of the biggest things I miss is improving my talent with equestrian sports. If only I had the resources I would be back on the saddle in no-time. Just keep encouraging to do the things we have interest in and do them well, as for important life skills, we will learn them. It just takes time, a lot of time for us. But don't rush us, it does more harm than good.
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