Friday, October 23, 2009
OK kiddies this is an adult only post. All you little ones under 18 need to skedaddle.
Opening fiction is Tikaani describing what an orgasm feels like to him. Tikaani's sexuality for a long time is mostly masturbation and various experiments with what turns him on. It isn't until he is around his mid-twenties does he experience intercourse.
For many autists out there, this is very familiar. We're all have fondle ourselves and tried to figure out how get that certain sensation many find it and enjoy it some don't, and for some, intercourse is far away while others have found it and appreciate the experience. Now not all autist are sexual. Some are very asexual for many reasons. Sometimes the sensations are overwhelming and not the good way, some actually hurt. Though it is a lie that autists even "Purple" autists are not sexual or have no concept of sex.
Sex for me is very wonderful thing. I will not tell you all of my sexual habits but release is actually helpful and helps me reorganize thoughts and center me sensory-wise. I feel better and often sleep better. In one experiment fiction with Tikaani he also compares orgasm to using the restroom. It is refreshing and relieves a pressure and need. In some sense sex including masturbation, is form of bodily release, though not completely necessary (like using the toilet or eating) it does serve a very functional purpose.
Problem is many autists are curious but unsure how to approach sex and some are very shy and with the right-wing pro-christian agenda, exploring one's sexuality is often discouraged and for some autists breaking those rules are often hard to do (It was for me when I was Christian) so many are ignorant on many aspects of sex and it poses a host of challenges.
First off, many don't know what their boundaries are and that can cause a lot of problems. They might preform a sexual act and injure themselves (I have done this). Or not know what tools many help them explore their sexuality safely. Many might not understand contraceptives or might be too paranoid about them which causes a lot of unwanted anxiety (Was paranoid about getting pregnant until I got an IUD and I didn't sleep or cry because of said anxiety). We shouldn't leave young autists to figure things out via internet. It's unreliable and irresponsible. Parents however don't have the responsibly alone to teach their child about the finer points of 'insert tab A into slot B' peers and dear friends of autistic people should also help educate and assure autistic people that experimenting and doing it safely is ok. Especially since many teens and young adults of any neuro-type, don't always feel comfortable asking parents about sex and what feels good. Friends shouldn't laugh or look at their autistic friend oddly for asking questions about masturbation or what a g-spot is. Nor should they dismiss them with 'Go wiki/google it' it's unhelpful and creates distrust.
Autistic people of all colors should have the freedom to explore their sexuality without fear of being reprimanded by parents or mocked by peers. Parents and peers and other autistic friends that have experience should pitch and encourage that need to...let the steam out.
Thursday, October 22, 2009
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
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.
I think parents are wonderful. I adore writing stories about parents and their children and if you haven't noticed most of my characters have foster and adoptive parents. Tikaani, Kulap(my swamp shaman who was raised by he grandfather) My airbender boys (Chiko the one with the missing arm was raised by Yomi his elder brother/father figure) and even my magical characters. Taahaj one of the leads in my novel Rubicon was cared by Circe and Ezra two mages in a modern magical city.
However...parents of autistic children often walk the road to hell. Their good intentions and and misguided sympathy often leads children down the path of self-hate and distrust of older people. I am not talking about parents that love their children and see their autistic son or daughter as whole. But the biomed moms who are still wrestling that the world doesn't revolve around them anymore. I wondered if these parents forgot what it's like to not meet your parents expectations or rather have that constantly haunt them and they transfer that feeling to their own children.
Children are accessories or status objects but for the white yuppie culture. That's what they end up as. Parents love bragging about their children and anthropomorphic children (dogs) and it's no surprise if they end up with imperfect diagnosis that they will change that convincing themselves it's to make their son happy. Which is a pretty lie to hide the selfish truth.
How many parents that do biomed talk to their kids about treatment? If they too young to understand why. Don't do it.
To juxtaposition something else. The Drakkhani people (and my post on language was featured the other day on shift) are something of allegory on autistic people. I mentioned in my FAQ on them that they are somewhat "aspie" that is to say that they have very constructed thinking. Whilst their logic isn't at the "Vulcan" level; they really don't get human social behavior, and they have a very complex and mysterious language. They are not very good at some human tasks but they exceed in others. They have complex culture that people don't understand any many try to humanize them. While Drakkhani culture isn't like autistic culture the feeling being marginalized is there and to be frank it was after I analyzed them that I saw they connection. I was never my intent but some how they end up resonating with autistic people. They are also an androgynous culture too. They don't have issues with gender or sex as humans do since they themselves have little sexual dimorphism.
Tuesday, October 13, 2009
Hanai spent two an half hours with Tikaani as he spent that time vomiting and crying, his fever will not break and the healers could break it. Maka had his fourteen year old nephew in his arms as the flu ravaged him. Occasionally out of anger and sickness Tikaani will scream and break something or try to run outside into the snow to cool off. Hanai sat beside him brushing the hair out of his eyes as he made to drink boiled water. Maka looked at his wife with a fear. Will this be the end of their foster son?
Opening paragraphs are from Ollie, a character set in alternate earth, he and two others are gifted with superpowers and call themselves the league of misfits. The other is of Tikaani.
Why would I write something so depressing? Especially since I am so hopeful and confident. This is less "emo" and more reflection.
Out of many neurodiversity blogs out there. They all seem to have this whirlwind optimism. Many are established adults with jobs, or stable income or college kids with a secure environment. Some are self-dx with no legal repercussions of their pasted on diagnosis. Others are formal and have files in their hospitals.
What I am addressing is despite being whole we are not always in constant state of happy gung-ho pride. I will say since no one else will, at least on my end of the camp. Autism does suck. I am not saying that out of depression. I am stating a real truth. Autism does suck, not all the time but it's not something to constantly glorified and "inb4thebutthurt" of people in the "BUT I DON'T GLORIFIY IT!!!!one11!" But I have yet to see people admit that being developmentally disabled does blow a little.
People however love to blame others, mostly neurotypicals saying that it's society's fault that we have it so rough. Yes the social structure is one problem. But if you put a bunch of auties from around the spectrum together on a deserted island, there are going to be just as many problems with that than solutions. The world doesn't suddenly make sense if we're all in one room. We have no standard mode of operating and because of our various social skill level were going to be missing important cues and most likely argue and fight out of frustration, this will go along a for a long while until we figure out how to a set an strong routine. However if we all end up stuck on AutIsland, and we do figure out a structure. You bet your momma's spaghetti that goverment will hold together. Most of us are stickers for the rules.
Which proves that everything has a dark and light side. While I may say Autism sucks (occasionally) and that not everything can be blamed on other people. I do see good from my disability. However I feel I do not have an autie talent, if anything I am rather plain. My art skills are mediocre and my writing is on that same level. I have a lot of flaws but nothing to really balance it. So it seems.
While there are bad days as the first to show, there are good days. Find them and celebrating them is important just recognizing the "autism sucks" days.
Wednesday, October 7, 2009
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."
Monday, October 5, 2009
I recently read this post about Tony Stark the protagonist in Iron Man, it inspiried me to write my own post disablity and fantanstic fiction.
The thing with fantansy fiction is that it's geared to be wish-fulfilment. So having characters with realstic disablities is almost non-existant. In other fictions disabled character have better chances to get recognized and regaurded with respect and realism.Fantansy seems to avoid this.
Case and point is Toph from Avatar. Now while many like Toph, her disablity is really her greatest strength. Same could be said about T.A Barron's Merlin and Daredevil. All three's blindness is really a non-issue. Rarely in fiction do we have disablities that bring the character's potentional out and still be a disablity.
This is problem caused by the concept of "stigma" and the fact having a disablity is "bad" so many author dick-dodge this by adding a disablity that either a non-issue or a strength or tacking on a social disablity that is accepted, like acholism. But without making anything realistic or believable, it becomes quirky and a nuance than a real problem or flaw. I've seen this in fanfics and in published fiction, RP as well. I inciated a rule 'Don't give your character a disablity unless you have some knowledge other than the internet, have this disablity or have family that have it." In RP I exercise this rule often making sure people don't tack on schizofriena without understanding it or DID. I have made this mistake before and I have learned from it. Hopefully others will learn it too.
With my own characters I try to balance things. Not all of my disablied characters have an ASD, currently only "Tikaani, and the 'Leauge of Mistfits" have ASDs, Chiko is another that is questionable as is Sekar. They are more or less unintentional Aspies. I do have others that have disablities, Chiko is missing his left arm and Anil is deaf and Pema is blind (yes these all fan-benders airbenders actually) I have another blind character named Atlas. He is a wolf-alien that lost his sight in war and is bitter anthrophobic man that uses heat vision relayed from his nose to 'see' he was retired three years ago. Asher also lost his arm and was given a cyberized one. Those are the more obvious disabled characters.
Now I did have a character with an addiction, Serhyph was pretty fun but complex character. If it wasn't for the fact he was non-human with a hyper immune system he would have been dead with either AIDS or something else. He was a junky for psychedelics and used it to tain his blood to prevent vampires draining it since his blood is restorative and hemovores enjoy eating it. It also adds powerful boost into spell casting. It ends up nearly getting himself killed, he back-stabbed two elite elven leaders and nearly got his best friend murdered though his 'nee' to get high. They way I intended Serhyph to be played was a bit of a satire on the mythology in which he was based on. Serhyph is a unicorn-faun. So the whole drug addiction poisioning himself was bit irony for people who know the whole "pure hearted' deal unicorns get.
To conclude, fiction is a great medium for showing how disablities act in social contexts. Problem is, many are skewed. I am trying to show that having disablity isn't "bad" as so much 'part of life'. And how you react to it is how it's acts in your life. Serhyph dies eventually. And Tikaani becomes a shaman. Chiko dies of old age and Pema gets blown up. Life goes on. Storytelling should be more reflecting on real life than wish-fulfilment. Disablities and autism especially shouldn't be short changed or downplayed. They need to be 'real' in the story, in order to really touch people in real life.
Sunday, October 4, 2009
From my experiance from being a formal diagnosised autist, I've noticed that having a formal diagnosis is vastly better than using one's personal bias as validation. Though I do advoid discussing self-dx because of my own personal issues, I've noticed that having some paperwork can be helpful when asking for accomodations but in the same tone. It's grossly haunting to have files in the NIMH, so the self-dx have that advantage.
Also the biggest issue when it comes to work, is that information on autism is so skewed that any proper training or education for employers and colluges is really subjective.
In another perspective, the mad-community has similar if not identical issues with the neurodevelopmentals. Having a mental illness and not a lot of education means more people with schizofrienia and bi-polar, addictions. borderline personality and more get shut out just as autists are. it seems those with physcial socially accepted disablities have a little more grace since there a pratical standards for accomadations. Whilst, the mad and the autistic community are so diverse so such predicable protocols are unheard of.
Now to change pace a bit, I've seen a good portion of the aut-comm, play the "Opression Olympics" when it comes to being marginlized and ignored by the neuroaccpeted population. We tend to hog the spot light a little and act like every bad press about a murderer with a mental problem is going to be accused of having an ASD. I had to lift my eyebrow a little and look to my friends with mental disorders. Especially my friend who is PTSD, Bi-polar and Schizo. And let me tell you guys, having the kind of disorder that is almost always associated with serial muderders and psychotics isn't as horrifying has having the "Rainman" stereotype. At least our disablity isn't a plot point for a villian.
In that same token I've seen autists play the "at least I am not like those people" game, to the members with MIs. Really? Do you want to sound hypocrital here? Apparently it's not ok for parents with Asperger children to disassociate from the indivuals that are on the "blue" or "purple" end of the spectrum as well as "red" autists to do the same thing. But fine for us to disassociate from other members who have alterly wired minds?
Such a pity, since many seriously empathize with autistics with sharing a simliar history of being seen as "weak" and "crazy" and "burdens". We should try not to shove them away or try to scoot from them, but reach out and communicate and create a bridge of empathy and respect. Many autists share dual diagnosises of MI and need the affirmtation that beimg different no matter how your mind is made, is ok. Also in that fashion, we should note that treament for there disorders is their choice not ours just as treatment for our autism is our choice and not the neurotypicals. We should respect the bi-polars and schziofriencs that can self-manage their pyschosis without medication just as we should respect those that need the seroquel or topamax.
We should reach out and help those who ask for it and support those that walk their paths with little help and with great courage. I admire my friend Jermemy or as I loving call him "the Fat-ass" (he calls me short-shit despite the name theses are private nicknames and have no perjorative meaning attach to them) he and I are both walking our live paths and want to be treated as human beings. I think we have that in common with they mad community and something that we should work together on.
Saturday, October 3, 2009
“You are my mother.”
By Bard Child
My bones creek, by back aches and I can no longer walk. Every day I sit in bed cared by my husband and my little brother. Now my beautiful and strong husband, Maka, has left to join the ancestors and Amana is also very ill and resting beside me. Now it's my children who care for me.
Elang my oldest comes by with fresh milk and butter from his herd, he helps me get up and change my clothes. Sakari his wife helps as well and my grandchildren sit beside my bed and say.
“Nana! Nana! Tell us a story about the fortress!” I smile and recall the grand city of ice that I use to live, I tell them about their grandfather and how he was a hard working fisherman. I tell them about how Amana fought in the war and how he was a brave and fearless hunter. Enthralled by my stories, I dwell in those memories, letting the warm nostalgia wash over me like a fine bath. Finally my children and grandchildren go home, they tell me that Qaniit will come for the night. Leaving me with Amana who gets up to make food, I think about my youngest. Eyes grown soft and full of regret. After all the years I spent, I too have abandoned him. Amana hears me cry.
“Hanai?” His voice soft and gravely, like ice breaking in the sea. He hobbles over on his driftwood cane and sits beside me. “Hanai, are you in pain? Do you need any medicine, should I get a healer?” I shook my head, and waved his words aside. No herbs, no massage, no medicine. Just regret, a pain in which nothing assuages it. His dark eyes plead to me, asking why I was weeping. I confessed to Amana, I told him why I had a look of guilt and longing.
“I abandoned him, I threw him away, just as his father told me I would, after fifteen years or raising him. I shoved him aside too.” Amana squeezed my hand and shook his head.
“Hanai, we've gone over this. You couldn't raise him like this, Maka couldn't care for you and Tikaani. It was the right decision, Tikaani is an adult, and how Rahmet and the shamans of the south are his providers. You have read the letters that Rahmet wrote, Tikaani can read now and write, is working hard. You haven't abandoned him, you just let him grown up.” I knew he was right but still, I wish I had the courage to tell him, that I saw him as my son, and I should have been the one to tell him that I couldn't take him home. I wish I could comfort him and heal his confusion and feelings of abandonment. I wish I could apologize to him.
“Rahmet? What are you doing here!? I thought-” My heart jumped, as he tried to look behind him. My son smiled and walked over to embrace me. Suede covered hands, studded with beads and amulets. His eyes like mist, foggy and intangible. I knew that Rahmet was going blind. Yet he told me that the spirits will see for him and he was not afraid. I admired his courage, it was trait all shamans had. I look at the door again waiting for someone. Rahmet took my hand as Amana laid sleeping beside me.
“I know you are waiting for him, you haven't seen him in twenty years. I brought him with me. I told him to wait outside in case you were asleep.” I gave him a sharp look and a smirk.
“When am I ever asleep?” I said to him, amused. Rahmet motioned at the door way and in a firm voice he said.
“You have permission.” I held my breath. As the sound of oiled boots step into the threshold. I sat up as a man, not a boy entered my room. Good, gods, he has grown so much. Tikaani, was no longer this gangly coltish looking boy with long hair and deep but always lost eyes. He didn't look at me but at Rahmet waiting for his next cue.
“Tikaani. Do you remember Auntie? She is sitting here, why don't you greet her.” Tikaani definitely had a man's face, but his eyes were permanently young. I didn't speak to him, he was still processing the hut I lived in. Amana woke up and looked at Tikaani with a bewildered face.
“Oh good ancestors, is this a dream?” He said blinking sitting up to examine Tikaani, as if he he really was some sort of apparition. Tikaani looked over to Amana and then to me. I watched the realization bleed into his expression. He smiled and crossed the distance between us to hug me.
“Auntie.” He said in a robust voice, truly a man voice. I remember when his was still breaking. I sat back and gazed up at him. He does look a lot like Tigtuk, he has his face and smile, but his eyes were definitely my sister's. He grew a goatee and his hair was still long and fine but braided with bone beads and metal clasps. His ears were pierced and sported facial tattoos of a shaman, he filled into his long sleek adult body. I smiled proudly, Tikaani was handsome and strong, but the smile faded when I remember that Tikaani would probably stay a bachelor. Part pf me wanted my youngest to have children, maybe a daughter with the same ever-young eyes, but the gods would probably not allow it. Tikaani wasn't meant to be father.
“Auntie, I am sorry. I am sorry I have not visited you. I have been very very busy, Rahmet works me hard.” he said, I could hear the apologetic tone in voice. I couldn't suppress a chuckle. He still apologized for things had no control over. Tikaani always apologizes. Amana grabbed Tikaani's arm in greeting and smiled up at him.
“How is our shaman? Have you been listening to your teachers?” Amana asked, Rahmet repeated the question to Tikaani, as his eyes turned to the window. I waited, Amana waited and then Tikaani answered.
“Yes. Obedient. I listen to my elders. I have to, the work of a shaman is dangerous soul-tearing work that will eat you alive.” I bit my lip and then busted out laughing at the parroted line.
“You have a strong soul, Tikaani,” I reached over and touched his chest, I could feel his heart under his tunic shirt. He stripped off his coat when he came in. “I can feel it beating inside, you have a very strong and determined soul. You will be a great shaman like your cousin.” Tikaani overlapped my hand with his. I could see his eyes reading my face and letting the words steep into him like a tea. He tried to smile but inside he just squeezed my hand.
“Thank you. Thank you for still seeing me as a human being.”
Amana took Tikaani to the hut and had him organize shelves and make supper. Amana even when ill still could carefully instruct and teach Tikaani. Tikaani followed Amana's instructions his eyes soft and seeking. Rahmet was smoking his bone pipe and smiled gently.
“Tell me what has been going on with Tikaani, I am assuming he still half-functional even at this age.” Rahmet blinked and sighed.
“I don't like that term 'half-functional' what is functionality? Really mother? Tikaani can dress, feed and bathe himself. He shaves once a week, he can use the toilet unassisted, he is literate. I say he is decent, he might need my guidance and the elders until he too is old, but the lodge agreed that Tikaani has a strong connection to the spirits, we think some of his outbursts and behaviors is proof of that. He will always be depended on someone, but in grand scheme mother, isn't everyone?” Rahmet was right about the last part. We are all depended on someone in some manner, I chuckled as Tikaani stirred the cast iron pot over the fire, watching the serious look on his face. Rahmet exhaled a cloud of smoke and put the stem back in his mouth. His eyes serious and thoughtful as Tikaani with guidance ladled the shellfish broth into bowls.
“He still rocks back and forth when he is alone and talked to himself, he prefers to write on paper than actually speak. He says words don't feel real. Tikaani has a schedule that he follows, but recently he has been wanting to see you, so we traveled north to visit you. I felt it was time.” I sat up and took a bowl from Tikaani and sipped the broth as Tikaani took a corner and sat and rocked his fingers wiggling as he fixates on a window. I smiled and sipped my dinner.
“It's indeed time. I love watching him move like that. It's beautiful, always in constant motion. At one point I found it bothersome I tried to make him stop it, but every time I did he would do something else repetitive, and then Maka said something interesting. Does not the waves lap the shores in the same fashion, never changing? Does not the birds fly the same direction every season? What is wrong with repetition? As long as he isn't hurting others or himself, just let him be as the waves, always moving. The look of surprise on my sons face made me giggle, he seemed a bit baffled.
“Father actually said that? I always though he wasn't fond of Tikaani's dancing?” I laughed again, so that is what Rahmet calls it? I put the empty bowl on the table and Tikaani took it to the kitchen.
“In bed, while everyone was asleep, I believe it was more troublesome to stop something that wasn't doing any harm. I see know that Tikaani uses to keep him mind in motion too. It how he thinks, I wish someone can see his repetitive beauty, like the waves that rush in and rush out. I wanted him to find love, to find companionship with a woman. Rahmet seemed to read my mind and slouched in his seat. His eyes turned to Tikaani washing some clay pots.
“He doesn't have any interest in women, I mean, well in some respects he does, but tells me is scared of them. He prefers the company of men actually. He rather have their affections than that of women. He has no interest in children at all, he dislikes babies and toddlers, he will play with older children but he will turn around if a little one approaches them. So wishing that he will bear you grand nieces and nephews is a tad futile.” I frowned and sighed longingly, Qaniit finally found another gentleman to wed but she won't bear any children, Rahmet's choice is to be celibate, and Tikaani, too doesn't want a family, but I knew it must be that way. Tikaani wasn't meant to parent. I watched as Tikaani stacked the pots in nice, neat rows making sure everything was in it's place. I hope Tikaani has found his place in this world. I hope he has found his happiness.
As the cool fire of the fat-lamps burned and Rahmet was with Amana, I sat alone with my nephew. Tikaani rocked back and forth his eyes always at the window. He chuckled and reached out to stroke his face.
“I remember when I nursed you and you wouldn't look at me, but the window. I also remember the years you were silent and observant. Rahmet was more of your bully than friend. I could you remember all those details before you spoke your first words? I remember that day so clearly, 'more rice' you said, you were almost six, after years of helping you use words you finally figured out how to speak, but you still couldn't communicate like us. Do you really hate speaking Tikaani? How would rather have our conversation?” Tikaani paused and then pulled away from my touch and walked around before taking a piece of chalk and a slate stone from the fire. He sat down and showed me the slate and chalk. “That will work then, Do you understand what I am saying Tikaani?” He looked at the wall and then at me for a moment before scribbling sloppy characters on the slate.
“I hear everything.” The slate read before he wiped it clear and tapped his palm on his knee, still holding the chalk in his free left hand.
“Why is it so hard to talk?” He responded again, in small but readable characters.
“I trip and fall, I don't fall when I write. Writing feels real. It feels real, I wonder why words for him on slate feel more real than spoken ones? Maybe it is the fact that the words are more permanent on silk or paper or on slate. He wrote again, ”I know, why I am here. I know it's time. I am scared to loose my mother again. I must walk forward, past only has regrets. I don't want regret.” I bit my lip, I knew what he was implying, I knew every reason why Rahmet brought him here. Tikaani, knew that I was going to die soon, he wanted to say good-bye. I lifted his head to meet my eyes and I spoke to him in clear and honest words.
“I loved you as you were my own son, as if I gave birth to you myself. My sister was a selfish creature, who didn't have the courage to raise as someone as rare as you. You were never meant to be thrown into the ocean to drown, you were meant for good things. I am sorry Tikaani. I am sorry that I was too hurt to care for you and I am glad I have this opportunity to tell you how much I love you.” I split my blood on the ground, I told him what he probably knew.
“Your father never wanted you, neither did your mother. They wanted to drown you as a baby, they believe you were beyond redemption.” Tikaani looked at the slate and then pulled way in sloppy tight, characters, he gave me his reply.
“I knew that my sire didn't want a weak child. I walk forward. I proved him wrong. I have forgiven you long time ago. I walk forward. I became a man because you let me go. I will always love you too, I called you Auntie, because I knew it meant Mother. You are my Mother, never forget that when you join the ancestors, that I am your son, I will honor you.” At that moment I wept, I knew all along that he had forgiven me, Tikaani doesn't hold grudges. He doesn't know how. He dropped his chalk and crawled over to hold me. I held on to him. No regrets. No regrets at all.
(in Tikaani's words)
It felt like dawn never came. I didn't sleep. I never really do sleep, actually, but last night I didn't get any rest. Rahmet saw me still for once in the morning and staring at the still hand that was dangling from Auntie's bed. His face was sad and scared, as he checked her neck with his fingers. He covered is face with his wide hands and he choked back a sob. He was crying too, I didn't want to cry, Auntie told me that strong men don't cry in public. I already had my tears in privet. Amana joined him and held him in his arms. I watched this as an observer not really part of this just watching them as I always do. Then Amana turned to me, I couldn't read his face.
“Tikaani. When did she die?” I didn't know how to respond to that I just rocked and stared at her hand. Rahmet gave Amana a look, the kind of look when I made a mistake.
“Don't ask him that. He has no idea. He was probably awake all night with her.” He said in angry voice. Amana glared at me and in harsh voice as if I was in trouble shouted to me.
'Why are you not grieving!? She was your mother damnit!” I didn't respond to that either. Rahmet's anger surged up like a tide during a storm.
“Stop lashing out at him! He isn't your fucking punching bag! He isn't four anymore when you call him idiot and retarded and shark bait and he wouldn't do a thing. He is grieving! He just as upset as we are...but...he knew. He knew that she was going to die tonight and we weren't ready.” Rahmet took a deep breath and so did Amana. He turned to me and apologized, I knew he was just hurt, like when you found out that a trip you have been planning for months suddenly gets cancelled, and disappointment and heartbreak was there. He didn't want his big sister to leave him to die alone. He probably wanted to die first.
“I will get the healers. To prepare her body, the funeral must be done.” I said, my words hid the frustration and sorrow that I was feeling but could never express.
The day of the funeral was a quiet one. Snow fell with silent diligence, as if the sky was reconizing that today was a somber one. Auntie was buried in a great glacier in a Spirit House, she was wrapped in furs and given food for the Spirit World. Her totem, the bear was laid on top along with four things of ours that she used to remember us, Elang's favorite tunic as a child, Qaniit's hair piece, Rahmet's herb bag and for me, a tiny clay jar with a small scroll, written upon it, were my first words. He watched as they slowly lowered her into the ice. I felt my heart break a little, the finality of it all. Rahmet started to tap his drum and too everyone's surprise. I sang.
Not with words, but with emotions, feelings I could never verbalize. Half-sounds of the oceans and half chants to call upon the spirits of the earth. Perhaps I was crying in public I couldn't tell. I let my body sway and my hands move with the sorrow of my chant. I was praying, maybe I was begging maybe I was laughing all at once. Rahment continued to beat on the drum as I sang my requiem. The family was observant and silent. Faster the words came pelt-melt and driven by the feelings of peace and a turbulent joy. I wanted to show my mother, my Auntie that I did have strong soul. She helped carve it. It was her that made my soul beautiful and I it sang to her.
It was a song of thanks.
Tikaani continues his shamanic work and lives with Rahmet in the south. Never leaving his side is a deaf woman, who was also an apprentice shaman as well. She seems to be different that most women, she didn't claim any gender and preferred to be called “Goose” or Kanut. Tikaani suffered a heart attacked at age forty-nine and Kanut runway to the north while carrying his unborn child, he is unaware that she was pregnant. She was thirty-five. She was in love with the shaman, but this was unknown by the community.
This one of several outcomes I have for Tikaani. I am unsure what I have planned for him. .
Friday, October 2, 2009
For those that frequent my blog on LJ might notice this little guy popping up. Tikaani is a fan character for the Avatar: The Last Airbender universe. He has a bit of background but he mostly a mascot for the blog. You won't have to know much about the universe he is from, but he will show up a lot in the blog.
For a quick info buzz, Tikaani is often portayed around age 15-16. He is a semi-verbal autist that lives with his aunt and two uncles. His parents didn't want to raise delayed child and had places of following the old tradtioning of throwing him into the ocean. Hanai rescued him and raised him with her children. Eventually, Tikaani grows up to be a shaman. <3 Tikaani is from a culture that lives in the universe's north pole, so much of the Water Tribe's culture has a bit of inuit flavor.
Tikaani, loves his Auntie, and warm milk, the ocean, his furs and his plush animals. He is good at mimicking sounds and can repeat conversations he has heard. He is also good at mimicking beats for drumming.
I'll have a full Podcast on the coming AutSpks Walk for Columbus, it's the weekend after this one. Checkout ASAN for more details. But for all the Ohio aspies and auties the walk is on the 12 at the Schotstein center in Columbus, the ASAN chapter for OSU will be by the 4H building near Borrow Dr. Spread this around and continue to reach out.
For fun, I have a little meme for everyone.
Kinda cute isn't it, well you can continue the fun by saving the other image and write your own PosAUTive message, spread Tikaani around and send a good message to everyone. I would love to see what you guys come up with.
Dear Suzanne Wright,
There is a chance that this letter will be ignored or be responded with an automated message, but if you do read this letter I will introduce myself to you.
I write short stories, and paint with watercolors, I have paintings in art shows and I work at two different school centers. I travel around my home state and I am part of different activism groups. I am also twenty-two and asperger autistic.
I has come to my attention on your newest campaign and video, “I am Autism”, that the material in this show is very degrading and hurtful to autistic people. Many individuals from all over the spectrum has felt that this video continues the old mythos of the “stolen child” and that autistic people are hollow empty shells. This kind of message is dehumanizing the autistic community and parents who do not feel that their precious and unique child is a “burden” and that some anthropomorphic disorder has taken them and hell-bent to ruin their lives.
Being autistic has not been easy. I do not ignore the struggles I have had being asperger, society has been a vicious animal to me, and it hard to speak a language that I am not fluent in. It took me two years to find another job and I have yet to hold steady employment. I panic easily and suffer from meltdowns as any autist would. However, I try walk forward and live my life as I want to live it.
The message portrayed in your video seems to make the “normative” feel good and the “autist” dependant on them, as if they have no say on what treatments they need want or if they want treatment. I was given many kinds of pills and treatments, I was given no say on whether I want them or not. I took me years to foster the kind of independence I need to make the choices that benefit me.
Autistics have place in this world, we are the odd child in the classroom that makes a masterpiece in art class, we're the kid that solves math problems with ease, the child that adapts well online or the child that feels the endless freedom of music. We have hopes, dreams, loves and desires. Many of our voices are silenced by the countless voices of parents who care more for the lime-light of being the victim than their own child's feelings and thoughts.
In the end, every child on the spectrum, whether be a classic autist or an asperger one, is still a human being, but even your video seems to deny us that. You say we autists lack empathy and we need to understand how hard parents have it. I wish parents gain some empathy for us and see how hard it is for us to have some form of respect and dignity from our neuro
-typ...no, neuroaccepted peers.
Noranne “The Bard” Cochran.Here is what Dee said.
The short film I Am Autism was created by two fathers of children with autism – Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso Cuarón, an Academy award-nominated film director. Set to a personal poem by Mr. Mann, the short film features home video footage voluntarily contributed by families around the world affected by autism. It is an intensely personal expression by these two fathers and their hope is that the piece inspires other voices and artists in the autism community.
: Autism Speaks believes that all individuals with autism and their families, regardless of their perspective or the nature of their disorder, should have the power to be heard. No one perspective can ever be the definitive voice of autism. We encourage everyone in the autism community to acknowledge the myriad voices and have tolerance for the spectrum of opinions.
Anne, I would love to read your short stories, and see your watercolor painting. Perhaps we would be able to have you take part of our “in their words” that we have up on our website. We extend an invitation out to all that want to be heard on our platform.
I am tempted to show my paints of my autistic boy Tikaani and maybe my writings. Do you know how should I respond to this?
Dear Suzanne and Dee,
Thank you for responding to my letter with such speed. I appreciate the time you took to write back to me.
I have read your response and I am still processing it. Forgive me if my less than stellar communications cause a problem. I see that while you may have read my letter you haven't quite understood the point I was trying to make.
My point is that you video had very negative and hurtful portrayal of autistic people (ironically with video of autists being happy) and even though you state there are many voices of the autistic community, it seems that only the parents voices are actually heard and you make no effort to have our voices heard too.
Allow me to quote from Depeche Mode “Now I'm not looking for absolution. Forgiveness for the things I do, but before you come to any conclusions. Try walking in my shoes. Try walking in my shoes.”
How many of your chair-board have actually seen the world though our eyes and actually try to empathize with us? You empathize with the parents, the fact you picked to academy winning fathers is proof, but will you show a film of an adult autist, happy with who he is, and given the acknowledgment and affirmation that being autistic is ok and who he is? Or what about a film of a parent raising her child and teaching her how to self-advocate and loves her child despite her autism? Or will that turn away the grants you need?
I looked at “In Their Words” and it's written in the voice of the parent not the autist, I would like to participate but I am afraid your editors and PR folks wouldn't like the stories of self-determination and will power of an autistic adult, who will not be cured or changed by outside pressures.
I will of course show selections of works I have written about my autistic character of mine and paintings I have done. Perhaps it will be proof that we do think abstractly and show imagination.
Noranne “The Bard” Cochran.
I also sent them one my written pieces of Tikaani (which I will show here) and a link to my art blog.
Hanai tried to get Tikaani to stop crying and screaming. His face screwed up with a look of desperate fear and worry. The stares of his people go ignored as has pulled his long black hair. Hanai also ignored the whisperes and stares of others, too concerned with getting Tikaani to process the information that was overwhelming him. He pointed a suede covered mitten at the large animal in front of him. He made another shriek and waved his hands as if to push the buffaloyak away. The rider on top scolded him and berated Hanai. After all the frustration from both Tikaani's meltdown and the rider on top, Hanai shouted.
"Just move along! He is terrified of buffaloyaks! He is telling you to leave!"
Hanai watched as the rider blinked back suddenly and rode off. Once Tikaani saw that he was gone, the six year old water tribeboy calmed down finally, humming and flapping his hands. Hanai picked him up and carried him thinking.
No body listens to those who don't speak their language.
The opening fiction depicts the ever common "autie-meltdown", Hanai tries to get her nephew to calm down but he can't as his phobia is staring him in his face. When the buffaloyak leaves Tikaani finally settles. But Hanai wonders why the man riding on him doesn't leave him alone...
It the old condrum of us being able to have something to say or communicate and no one bothers to listen to it. Autism Speaks of course in their wave of ignorant glory, flavored with NYC Ransom notes styled ominous voice over, they put this as their new inspirational video. It inspiries of course parents and teachers and non-autists who are meer observers and infuriates the autists themselves as they roll their eyes and as Kel Mitchelle once said "Awww here it goes!"
This is of course is just ANOTHER underhanded self-serving tactic of AutSpks. Dehumanization is rampant among groups like "Generation Rescue" and "Defeat Autism Now". They keep separtating the autism from the indiviual and that is not how it works. I am speaking only for myself, but many others share the seditment. This sort of mentality is why many autistic children perish in acts of desperation and matyrism. Parents are put on this stage of pity and victimization and autistic children become some sort of scapegoat for unhappy parents that realize that they child they want is not the one they got.
They last bit of the video of course is all for the parents as they gather around the autistic child acting that they will do anything to help they child, like crushing their identity and molding them into something that they are not. Everyone else knows that AutSpks is for NTs not for Autism, the real voice of autism isn't the self-loving parents hogging the lime light whist their autistic child struggles all through their childhood then drown in a sea of lowered expecations and a society hell-bent on turning a "llama" into a "sheep." And if they autist is lucky, he might find happiness and peace with someone or with what makes him happy if not he or she might turn into a bitter misanthropic indiviual that prefers the soliditute of his basement.
Autism rights isn't about glorfying autism. It's about letting our words be heard so we can make our own choices. NT's don't have a say on what we need, we do. And it's about time someone hears that.
Mainly it is about your character, and some of the things you have put up in your avatar and signature. I have talked to people, and they feel that having a autistic character may disturb kids that may join, plus it seems almost as if you are making fun of them. This concerns me. Others say that your profile is not appropriate for Avatar: The Last Airbender, that it almost seems like it is from an old Indian movie, and that your character is making fun of the water tribe.
Please note that all of these concerns were not brought up by me.
*eyebrow lift* I am assuming this is Tenisho who brought this up. He still is pretty butthurt I see. He use to be on TARP (another Fourm game) he wanted to play with Tikaani and then chicken out.
I have talked to people, and they feel that having a autistic character may disturb kids that may join
How would an autist disturb kids or players rather? If they have questions I can educate them. I am not disturbing at least I don't think so. Fear is the absence of knowledge, hate is it's progeny. If kids have problems with Tikaani I will be more than happy to help with them. I have been having the oppisit problem. A lot of kids adore Tikaani and find him fun to play with, I get some complements from people and I have fan art of him. I had one indivual that didn't know any thing about autism until she played with Tikaani.
As an aspeger autist myself I don't know how I would "disturb" people. I do a lot of actism for disablity rights. http://prismsong.livejournal.com/ Feel free to read some of my essays.
plus it seems almost as if you are making fun of them. This concerns me. Others say that your profile is not appropriate for Avatar: The Last Airbender, that it almost seems like it is from an old Indian movie, and that your character is making fun of the water tribe<
How so? I try not to take my disablity so seriously. I am allowed to poke fun at it once in a while. I don't understand how an EB Yeats poem and my "Mad-autie"(see icon in this post) icon is "making fun". Also I don't understand how is my profile "inappropriate" for Avatar? I've squeezed him into many games. He was part of a murder mystery in the first board he deputed in. I have to say that it's pretty Ableist to assume he won't be "appropriate" for Avatar. I would like to have someone teach him how to read, or maybe be in a drumming competion. There is also the idea of him using his "voice recording" talent too.
How is it I am making fun of the watertribe. If you mean Tikaani's parents? Well if you look up ancient cults around the world, they did that to many disabled children. Children with Down Syndrome, Autism, Cerebral Palsy, birth defects were often killed or left alone to die. The story of the changling is based on those children (Which is the archtype for Tikaani) He was adopted by his aunt I don't see how that making fun of the water tribe. Kinda brings home how adaptive watertribe is.
You need give me more spefic issues. I am not breaking any rules or hurting other players. I don't know what you want from me. Maybe just an explination. I don't know.
Unless you want me to remove Tikaani from the game and allowing ignorance and ableism to floursh, then I will do that. Eventhough I will feel unwanted as an autist myself and feel that it's good way to minoritize issues like cognitively disabled characters in Role Play.
It's a damn shame.
If you would like I am on AIM
SoloBWolf if you like to discuss the issue.
I feel kinda heartbroken and angry at this. But she is so young and NT so I don't know what I fault her on. If I have to leave the boards because of I would be very disappointed.
ETA: the admin wrote this
Apparently I am responsible for people having their heads in the gutter.
-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
PS: Bard Child needs to not write while listening to grunge metal and drinking irish coffee....makes the aspie-wolf fang-y and bitter. ):<
However some parents often give good advice, one is with Pua, a woman healer who has a deaf daughter Kaleuu. She cannot talk but she she communicates though pictures. She understood that Tikaani wasn't cursed but had some mental disability. She told me that communication is more important than anything. I needed to have Tikaani find way to communicate to me what he needed. I used the hand language that she taught Kaleuu, he learned a few gestures and I thought in time he would be relying on the hand-language until he said his first words. Pua was elated as well and encourage me to expand his vocubulary. But as soon as he gain the ablility to speak, I lost my "kid is disabled card' now parents were giving me all sorts of dirty looks. I realized that there was no way to win this. Either he is too disabled and I should toss him or he isn't disabled enough and I should spank him.
Good TUI! My people are so frustrating...
Hanai opens up with important observation, either you are two disabled to get it or not disabled enough. I call this the "Goldilocks Rebuttle" Cure-parents often throw this up to Purple autists for ND and Red autists as well. It's pretty common that they make this statement to avoid conversing with autists that have an opinion on certain perspectives such as medication and therapy, but often, we are denied to speak it. I hear it often from real life. I wrote another rant about this about few years ago, which I'll open and link to everyone here.
I hear this a lot from NTs in real life too. It's somehow a default response to every time I say "oh btw I am AS =D" some times they catch me will the 'mask' off and people realize that my normalcy is an illusion. All of it is a well constructed social lie. I am not normal I am autistic. And once people get that through their heads will make things easier to explain.
No I also had the other side of the rebuttle, 'You're autistic you won't understand' part too. I also get this in RL and online a lot too. In one rant I did in Asperger, I had one of my editors rationalize that because I was asperger, I didn't understand metaphores hence my reaction to his crappy one. No it was crappy, stop using my DX to analyze me. It doesn't work like that. When I get meltdowns and people are there witnessing it they often feel like it's their job to scold me 'tell us what to do when this happens' or 'warn us next t time' HEY I would like a warning too the next time my brain has a memory dump and blue screens. My mother thinks that my panic attacks (what we called my meltdowns at that time) could have been prevent and talked to my step-dad about sending me to a group home.
You can never win. Either you are not autistic like so and so's little brat so all your point are null (next time someone says that I want to record one of my meltdowns and post it online so people can have some damn proof) or your too autistic and you don't get it at all because your poor little autie brain can't process it.
You know what? Fuck you. Also to put on tangent. Self-Dx aspies=/= all aspies.
Anyway tomarrow I will have a v-cast ready.
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.
Tikaani my autistic character in my fanfiction, is featured here in this drawing. But this isn't about Tikaani (though I love writing about him) but the concept of the stolen child.
In out generation of autistic adults, teens and children I feel that parents today, still feel that we are stolen children. Of all the stories of parents writing about their autistic son or daughter, I can't help but compare them to the the perspective of a human mother trying to raise an elven or goblin child and asking for pity or some way to banish the goblin so they can have their human baby again.
Though we are far from some sidhe switched child, that concept that we are "Stolen" still is upon us in our culture. We seem never to leave that old celtic mythos of changlings behind us. And many parents seem to cling to this view that the autism has "switch" their child and that one that they have is not it.
I do believe that the changling story is often related to real cases of autistic children in ancient Ireland, funny how today that is still a relevent metaphore. Though fortunantly many parents have adopted us "goblins" and raised us knowing that we are "goblins" and accepting us as "goblins" to them we were never changed in the first place. Still I watch parents villanize the fact that we are goblins and begging for their human born son or daughter. Instead of accept their goblin ward and raising them as best they can and loving the fact that they have such a unique child among them (and maybe even teach them a little bit goblin culture), but many of them pity the circumstance, and some look to isolate the child and say "thats not mind I want my child back."
Though not all parents do this and I am using a lot of metaphore and exageration here, the spirit of the Stolen Child still is among the American culture. We are looked upon as "strange" and unordinary, when in fact we are just as human as you are. Parents need to realize that we are not some aliens from another planet we're not "holland" either nor are we some fae born child switched at birth. We are like you. We may have different wiring and we see the world differently, but we are not stolen or missing.
dear parents, we are right here in front of you. You just weren't looking.