I have been sick lately and when I’m sick my words are more bad and takes more time. I know lots people feel sick at this time- but mines special. And not in a good way. I have a minor partial cleft palate- basically little holes inside my mouth that means mine sinuses and everything drip from nose directly to mine mouth and throat. I gets bad infections. But it’s not worth surgery to me. Anyway I’m feeling better today mostly. I forgot to charge my chair so instead of PT I got to stay in bed (FYI still at my friends house). Lucky yesterday me did the important thing and sign the papers for the lady to get me this accessible apt as soon as 1 is open and she say by November. Oh and mine bday was Sunday- me did turn 26 so says mine calendar. My friend made me a Thomas the train cake.
So they did it, the publish story on Allie and me for World Cerebral Palsy day. And here it is- http://www.tobiidynavox.com/better-communication-rounding-circle-life/ . It’s a super nice thing they say of me. But not all of it makes sense. I mean anyone who has trouble talking prolly has anxiety even if they don’t have autism. Also technically cerebral palsy is a traumatic brain injury just when a baby, and lots of people with CP and/or Autism has aphasia- it’s just more a notice problem for people who lose language when they’re older. And lots of people with autism don’t think in words. And Core has smaller buttons not bigger. But in the end they was so nice saying nice things of me and Allie. And letting people know the different kinds of supports Dynavox Compass has that can help people. And they didn’t focus on any of the bad parts of life. I hate when people make my life this super sad story.
I really like what they write. But I think the other part for me is that people want to be proud of being able to communicate better now. I’m not. I’m happy of it but not proud. Maybe proud of the people that made the device and software, and proud of the people who work so hard to get it for me and teach me how to use it. But I have a problem feeling proud of myself for something most people can do as a toddler or young child. I mean I know it’s not my fault I’m different or that I didn’t have the support when I was small, but I don’t know if I did anything to be proud of?
I’m going to share a rant thingy me had earlier to my friend. It shows some of mine thinks.
“I have tried college a few times but it just doesn’t work. But I still want to find a way to help make the world a better place. I know some people are able to use their art to make job opportunities. It’s awesome. Unfortunately all my stuff stays stuck in my head. My body doesn’t work well enough to move to drawing. But I do make some cool collages and photos edits and such sometimes. But that’s it. It’s fun and sometimes talented but mostly fun, and definitely nothing good enough to do anything with. It’s hard when you have great ideas but your brain and body can’t process them out to share or do. Sometimes it’s no fun being stuck inside your head. Even with baking I can’t usually get all the steps done by myself, and when I do it takes forever. I sit on the edge of accepting myself And differences, and feeling like a failure at life because no matter how hard I try I can’t do anything that’s expected from someone my age to contribute to society. (Granted our society sucks but still. ) Maybe this book will get done and be awesome, give me something to be proud of besides basic survival.”
So the point is 1) sometimes I feel like I can’t do anything and that I should try harder (even though it never works out and I usually wind up in a hospital) and 2) I’m working on a book. It’s about a white tiger and a wolf who learn what family is really about and how to believe in themselves. There will adventure and a bit of magic.
I guess the thing is I’m young and trying not to die for a long time, but what do I do with my life? I love to color and watch cartoons. But I also want to do something that I can be proud of and enjoy.
I know I’m a awesome person but who I am is something almost nobody sees. Actually I think only 2 people have ever had a good idea of who me am. My old therapist, and my friend I told I have feelings for. I’m still searching for a way to express my soul. My body and brain make it hard because I don’t have good ways to use words or control my body good enough to do art. I did find this video and really want to see if I can find something to do like that. For music or art. https://youtu.be/XQ9V96NQPg4.
Here’s a pic something I would have wanted to draw but instead did the best me could as collage.
And a piece of poem art that me thinks did an awesome sauce job with.