Real language and personhood 

I’m sorry it’s been so long. But it takes me months to get the words. So here’s a brief update- I’m learning how to use my AAC for real language. It’s one thing to spend months and months to find a way to write about what’s going on and a very different thing to have a conversation (written or otherwise). Most of my limited texting has always been picture based (or automatic like if someone say you’re cute or I love you then you have to say you to). And in person it was so hard to get any language from me, except maybe something I had already prepared or use by reflex. But with limited to no understanding. Even having had my Dynavox for so long there was nobody helping me to understand. After all this time I learn that if I think somethings feels funny or off it means I’m in pain. I don’t completely understand, but others do. All thinks to a friend who paid attention, and a device with pictures (and lots of practice).   

      The other day I got to feel like a person. A friend had a conversation with me. For once I was able to have a normal conversation. Ok maybe not normal, but still. At first mi other friend was going to speak for me but the person insisted on me talking for myself with my AAC (not just nodding). They asked simple questions like did I like the tacos, did I see a movie, where did my friend and me meet that day. And (with a little help) I was able to answer and be confident that I said what I wanted/meant. I even learn to ask a question back. They respect me as a valid person but also respect my differences. They used easy words I understood, said one thing at a time, and was patient with me. I also liked that when they didn’t understand what my dynavox said they asked to repeat, but didn’t come try to read it. It seems so small but most people don’t have bubbles over they head for you to read they words, you have to learn to understand them. I hate when people want to read my dynavox and not take time to learn to understand me. And especially as I’m learning to have conversation and I rely on buttons that have the phrase inside already. I’m glad I was able to say what I wanted as I meant it, and even in more normal time – a few minutes instead of hours or days or months. 

    It’s also new for me, because I have never learn to be social. Most mine limited communication (via ASL, type, or behavior) was of mine needs. Not just to have a conversation. Partly because that was to hard for me, and because to hard for them. I want to thank Kreeds world for showing how to use mine dynavox to be a person and talk about movies and things.  It’s still hard because I have more issues understanding words than Kreed, and identify what I want. But if he can then me can. But I’m going to need allot of patience and support and practice. I tried learning to say thank you to people who say Allie (service dog) is beautiful. Which is hard because I have to process what they say and make mine hand work. And it deals with strangers. Sometimes I use a switch. And someday is to much, but me will try. Because he show #nolimits and me want to believe. But will only happen with people who willing to meet me in mine world and work at mine pace. 
      Can you have a more detailed information by writing to me? Yes because I can take lots of time to find out what you are say, and see how I want respond. But even then it’s not always good or it may hurt mine head. For the most part people either think I’m not smart at all or think I’m normal smart. I’m not either. I can understand some stuff, sometimes I just need time. But I don’t understand everything. Overall I was very excited to learn somebody could have a conversation with me on my level, that I wasn’t made to feel I was stupid because I was talked to that way or because I couldn’t understand the other person when they expected me to. It mean so much to me that the person let me know they think I’m valid. And I’ve been watching a lot of Kreeds World (I’m so much upset of what happened but I’m not thinking about that) and it’s really helped me and my friend see how to help me communicate more instead of just letting everyone else think for me. I like how Kreed mom let him say what he need all the time. And it’s teach me how better to communicate with my device and even use it for other stuff (like text and we got idea to use with Siri). But mostly I like how she say we are good to have our voice always, not just when people want. It makes me feel like valid person. 

     


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Lessons from my service dog

I have a great service dog named Allie Rice. Here’s some stuff that we want to share .

  1. Patience  . She may need to potty at 07:30 but me an struggle so so not outside until 09:00. She doesn’t bark at me or pull me. She may “ask” a few times (by go to door) or check with me if needs help (she comes up to see if need her help stand up), but she not impatient. She understands I’m doing my best y we will get there.  And if she don’t come at first when me call (with a noise, not say her name) me will wait a few seconds and try again or go by her side if important.
  2. Keep trying. Sometimes I have meltdowns and may self harm, she will keep coming up to distract and calm me until it works. Sometimes I can’t get up and for almost a hour she will keep help me stand. Sometimes she can’t ignore the rabbit and me will keep call her to keep on track. 
  3. It’s the little things. She is so happy to go outside and I love it. I’m so excited to see her smile and she do it when me needs it most or just because. I give her special treats because that all it takes to make her day better. And she will hug me or lick mine hand for the same.
  4. It’s awesome sauce to be yourself. She’s a dog, she likes to chase squirrels. And I let her because it makes her happy. I’m me and I like to swing and she will be sit happy while me swing. And I “stim” when I walk and she is still happy and not trying to stop me because it looks funny. She is happy I’m happy and that’s enough for us. *Oh she not chase them when on leash. *
  5. Pay attention. I can’t read her mind, and I don’t think she can read mine. But we are both good at knowing what the other needs. We pay attention. She can tell I need to slow down because she hears my heart rate, and she can tell when somethings is wrong with me even upset because I must do something different. And I can tell if she needs potty by her go to door and by thinking of the time (we try keep routine). And if she bark because a stranger or to get mine attention (to calm down). And she can tell if it’s ok to ask for all the belly rubs or if should leave me alone.
  6. Schedule is awesome sauce. She knows she will eat and it’s yummy , and when it’s time to go outside. Which helps her know if me needs help (like if I’m not up yet). I know when it’s time to calm down for bed because we follow a routine.
  7. Unconditional love. It’s not easy on us. We are about 2 feet away 24/7. Sometimes she really wants to run and me just can’t deal with the outside. Sometimes I can’t understand why she wants to go a certain way. But we don’t get mad, we still find other things to make us both smile. 
  8. Respect. Sometimes I let her lead where we walk even if I don’t want to, and sometimes she has to follow me. It’s not her or my fault that’s she’s a dog and I’m “disabled”. We don’t always understand each other. But we work together the best we can and always look for a way to make the other smile.  We respect that we both have needs and feeling even if can’t understand. I don’t understand why she needs to roll in dirt and she don’t understand why I need to rock or shout or bang mine hands but we don’t care because we can respect we are different.
  9. Forgive. Sometimes she scratches me or I step on her. But we don’t get upset. We still hug and kiss the same.

Unseeable

List, not poem.
Things u can’t see. Not having a body. Color of sound. Texture of emotions. A body so tired of being forced that it can’t move, even freely. Words melting, swirling. Grasping at meaning. Memories. Repetition. Cut & paste. Fragments of the now. The border of wanting to be free, wanting to be me, y wanting to accepted. Hidden patterns of the clever robot. The signal to breathe. World spinning. Not seeing 3D. Choking from thinking 2 hard. Realness of hands, of tuch, comforting until unbearable,to mush of a good thing es bad. Hrs, days, wks translate into words. Me. Drowning on the air thick w humanity. A sol hiding en a mind, guarded with a body to protect it from the outside world. The wrong kind of smartness. Pretending. Trying. Stranger in the mirror. Imprints of souls. Forgetting. Muscles twitch o freeze seconds, minutes, hours. Confused brains. Tinks speeding while the body rest. Not no-ing. Doubts. Difference of perception of realities. Blurring. Method to mi madness.
~Tiggy

“Success Storys”

So at the HW library there’s 97 books in jus one section (life sciences me tinks). But most not useful for me. I’m not a parent of child or so called professional. I’m an Adult with autism. But I’m not a ‘high functioning’ adult, I’m also not the ‘lowest functioning’. I haven’t over come or broken thru or anything. I’m not cured  (o want to be). I’m the person who can walk to the grocery store a block away, but can’t buy groceries without support. I can’t talk. I incontinent. I’m obviously different. (Not that i care or always notice).
  I want stories about people like me. So that I node am no alone. I can’t talk to others of work or relationships. I barely node mi the difference of happy vs sad. I want story of a new kind of success. Not about fitting into ‘the world’ but of accepting urself. Me wants to hear from those that es en the middle. The ones who may not be able to work, but can be left alone for a few minutes. The ones who still experience meltdowns y anxiety attacks easily. The ones who can’t seem to fit in anywhere. That es to smart for most day programs,  but unable to be fully independent. The ones that heavily rely on support,  prolly living with relatives or friends.
   Yes it’s great for tide that overcome challenges and can be a part of the world. But it’s also great to learn to accept yourself. For parents it’s a good idea to have an realistic idea of your child future. The famous success storys are a minority. So es the completely dependent on you storys. Most of us learn some skills over time. It’s called developmental delay not nondevelopmental. It may be early adulthood before a person on the spectrum can learn enuff skills to be able to walk a block away to the library safe. They may never be able to grocery shop completely alone. That being said there es apps like routine factory that can help. And of course Skype or text or Kik y stuff 4 communication. And basic apps like Google maps and alarms. Even a Shopping app (Out of Milk) that can bring up your shopping list when you arrive at the store automatically.
   Anyways the point es that more of us sud write of being Us, accepting we es different but still valid humans. We don’t need to be have a genius skill or pass as ‘normal’ to deserve love, respect, y supportive friends.

Why can’t you reach me

This es something that many people want explained. There are times when I (or other individuals) do not respond to anyone even if they’re right there. So I’ll try to breakdown what’s going on. Most likely in this time in having a shutdown. It’s a type of meltdown where I’m so over stimulated i can’t do anything more than than self regulate. I’d also like to note that if it gets to bad i may have a complete shut down, in which i can’t do anything y may look like a statue (not to be confused w mi seizures)
  I will probably be rocking, which Es basic self soothing. More concerning to others Es that I’ll prolly be rocking against sine hard service. Note I’m not trying to self harm (technically I’m not trying anything this Es automatic), but what it does es help give me a sense of body y space. Also puts a rhythm that helps regulate me.
   I am also likely to have MI music headphones all the way up to limit auditory simulation. AT THIS POINT I CAN’T PROCESS NOISE. Your talking Y everything else Es jumbled y scary sounding.
    For the most part mi eyes will be closed so that i don’t have to try to process visual stimulation. Because NONE OF IT MAKES SENSE.
  I am also likely to spinning MI car wheels or something else to that effect. What that does Es give me consistent tactile stimulation that i can handle. It also give MI eyes y ears something to focus on as i regroup. It also keeps me fidgeting en a healthy way.
  The last thing you may notice Es that I’m likely to be biting something. Oral stimulation Es naturally soothing. I don’t completely know why, but psychology says it dates to the first instinct we’re born with; sucking to get food.
   Now that’s we’ve covered what’s going on I’ll give you the 2 best tips i know to communicate with me at that time. A) if I’m wearing headphones connected to mi phone, then send a msg there, Preferably with pics. B) write/draw on paper then have IT touch me Y drop it by MI lap. Do NOT touch me yourself as in such a panicked state i may unconsciously lash out to self preserve Y not recognize you.
   Either way it cud take several minutes or longer before I’m able to control mi body long enuff to se , much less respond. Keep in the mind the MORE you interfere with me trying to calm down, the LONGER it will take me to recover. Therefore unless it’s for safety reasons or if you’re trying to relocate me to a calmer environment leaving me alone Es best option
  A similar but less intense form of this is when we’re not face to face and I’m not responding to any phone messages. The likely cause is that I’m beyond MI social energy y nearing a burn out. The best thing to do Es be patient. If your send a message expressing concern of MI health/safety I will within reasonable time give a short response.
  

Mí autism, mí normal

This cud also be called a closer look at what makes autism,  or perhaps what I can’t tell you, or that fine line between helping Y “curing”.
  So I have learned that I’m allergic to gluten. Oh that i have a sensory processing issue (amongst other things). These are both in MI fruit salad ( 3D model approach to ASD by donna williams). But I never knew things growing up. I never complained about the lights being brighter to me or the issues I had going potty. You want to know why? For me it was all I new, i figured all MI experiences was normal y wondered why me cud not cope like others. Most neurotypical ppl assume that something Es uncomfy then I sud know it’s wrong. But from birth most things have been painful for me. So to me uncomfy Es normal so how I wud I know better? Let’s take a look at gluten for a moment. All MI life me has struggled going potty. But after not having gluten for awhile that’s wen I noticed that i had bin having issues cuz now it was easier to go.
   There Es other examples such as always wearing sun glasses. Ppl thought I was being defiant by not taking them off, wat then not me knew was that lights Es so mush brighter to me. I didn’t hear of spd until adulthood. For most MI life I had no way to communicate in a way others understood that I cud not understand them. Even to this day since I not have many “behaviors” people tend to assume I am more capable than me really am. What they don’t get Es that those ‘behaviors’ was mi only way to express something wasn’t right. Now there’s no clue until I can’t do anything or a have a meltdown or shut down.
    Back to the fruit salad model. There are other things can be in such as motor apraxia or GI  issues or seizures or anxiety or so many other things. Basically ASD  Es a bunch of challenges/differences working together that make communication difficult. Many of these things can be worked on individually.
   No I’m not talking about a cure. I will always be autistic y i take comfort in that the same a Deaf person or LGBTQ person may take comfort En knowing there Es a community of others that can relate to MI challenges. However do I feel better not poisoning myself with gluten? Of course. It’s also more comfy to learn how to work with MI sensory differences so that I’m not always being tortured.
    Because of the challenges we have had most our lives if not since birth prolly also gives us a unique way of thinking of the world since we has such a unique perspective due to our experiences.
   Can u imagine not being to make your hand wave? Or seeing everything like a Picasso painting y al sounds es jumbled? Or not being able to eat without getting hurt cuz you can’t feel your mouth? Or every piece of clothing feeling like it’s biting you or squeezing you? Wat if it took you minutes or even days to understand wat somebody said to you y by then it’s too late, plus you can’t even tell them that because they assumed you understood then and they have sobe forgotten the whole conversation? Wat about trying to communicate in a foreign country but every time you do you are told to be quiet or stop that simply cuz you are not capable of using the same language? Or needing to hit your arm to keep the blood flowing, but being told to stop, Y you have no way to express your en pain or even to know that wat your feeling isn’t normal?
    Many people of all kinds feel the pressure of society to confirm. But why? And what if your simply not able to? Why Es it so important to look like others? Unless it’s a safety concern every body deserves the right to be themselves. And wen your in a world were you struggling with so called basic processes that others take for granted (such controlling your own body or processing wat you see y hear), naturally you feel the need to cling to what can control And to seek validation that it is truly ok to be yourself.
   Yes I understand that you may be frustrated trying figure out wat going on with me, however can you understand that I feel this way to about every person I meet?

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Why mi self don’t exist

Yes that’s sounds wrong. But i said it how i meant. Technically i exist, however MI defining persona often called a self doesn’t. Sure it’s slowing emerging but it may never fully exist. The almost titles for this was why MI self Es illegal or why i don’t git to say no. Technically this article es about mi autism, but it also encompasses other parts of life, for me and others; such as being LGBTQ or having a culture.
   Mí entire life me had been made to comply, to fit in a nice box that is pleasing to the world. If i was uncomfy looking in your eyes it didn’t matter cuz you wanted me to. If i wanted to climb a tree it didn’t matter if you thought it was improper. If wen i wad excited i jumped, i was told to be calm. But then wen i showed no joy that was bad. Even it was wrong to use MI left hand because it wasn’t normal. And if i was upset y didn’t want to be touched it didn’t matter cuz someone else wanted a hug. It’s never stopped,  ‘quiet hands’, ‘use your words’, ‘don’t dress like that’ , and on y on y on. All to make somebody else, anybody else, everybody else happy or comfortable. It never mattered wat i wanted or needed or felt. It still doesn’t. After many years of therapy I’ve gotten to a decent sense of accepting who i am, but nobody does. Y even alone I’m afraid to be myself fully.
   The amount of abuse y being taken advantage of had condition me to realizing that if i want to survive much less live then I’m not showed to be me. I must make everyone else happy. Example if a person wanted to have sexual relations if i refused I’d get beat or worse but if i didn’t fight it i may git treats whether it was food, clothes, taking me to the doctor, or being told i am loved and good and beautiful.
    I’m trying to tell myself that’s it’s ok to be me, to be different, y even to need help. But it isn’t. If i want to go outside in clothes that are sensory friendly and somebody else doesn’t like it, I’m expected to change even if it’s not for MI health (like being told it’s to cold). If I’m expressing mi feelings en a non typical way y others Es uncomfy, i have to stop even if Noone es being hurt. I’m not allowed to be ok with MI life cuz I’m suppose to want more,  more money, more friends, more things to do simply cuz that Es considered normal. It’s not supuse to be normal to still be honest about liking cartoons or to have a purely intellectual conversation.  
    I can respect somebody trying to help because something Es unsafe. But if u only want me to change for your comfort level that’s not fair. I’m not very sorry if mi differences make you feel awkward cuz i have to live with me. I have learn to cope y work y start to accept mi differences y challenges. So you don’t like i don’t always use words or that i need MI headphones. Those things inconvenience you. But you know what? MI difficulties w language y sensory processing hinder me 24/7. I am doing wat can to meet in the middle y to function. I care more about being to able to do something than wat me looks like doing it.
   If I appear to functional, then i must not need help. But i don’t seem to function En some situations, then i must not be able to do anything. And either way if i ask for help I’m attention seeking or not trying.
   If you really want help me or another individual then start by not only accepting but even embracing them, differences, strengths, y weaknesses. Cuz if u don’t then how are we going to learn is ok to express ourselves. If you try to change us just to look normal then we are being taught to be ashamed of who we are and that we don’t matter as individuals. The next step Es to try to listen to us, however we communicate. We want help and you want to help us but we may have different things in mind or different ideas on how to do it best; for example i have not ever wanted to learn to talk, but i do have the goal of better communication. Have i done mi best at trying to understand others wen they talk? Yes, but i don’t always. I don’t force anyone to communicate by a different form cuz i don’t want to be forced to. But we have to meet in the middle. And whereas is easy to tell me I need to change cuz I’m the minority, honestly it’s more efficient for you to adapt to me since you’re more capable. I’m struggling enuff to do this well at communicating, but you git to take it for granted that language Es so natural for you.