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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