Proud?

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.


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Updates

I have a few things new in my life. I’m still homeless but the lady says by November she’ll have me a place. For now I’m staying with a friend still. And I’m almost done with physical therapy and occupational therapy. The doctor agreed that inpatient wasn’t a good idea for me so I’ve had intensive outpatient everyday for a month. I have 2 more weeks left. And he is having me work with the people to get a more customized power wheelchair including having my Dynavox mounted, and also to look into getting a headmouse so that I can communicate more fast and better than with switch scanning. I’m watching the show Speechless when me can. Allie is doing super good. We take the Metra train everyday and she gets to show off how good she is because I have to take off her leash to get on the wheelchair lift. She waits for me then runs to my side and leads the way to an open space for us to sit before I put the leash back on. It’s funny to think mine bday is oct 2 and that is almost here. This year I think I’ll be 26 (I need to ask my calendar because I forgot).  It’s funny because I still have trouble remembering I’m not still a child. I feel like it. Anytime I type of like being at the park or build a bear I always say the other kids instead of the kids. I guess they call me an adult child for a reason. I do look like one and maybe still act like one? Oh it’s very exciting because Dynavox (they make my AAC) is writing a story on me and Allie. Me will has post it here, I got to read a draft today with my friends help, but it should be published next week possibly on world cerebral palsy day. And do you want to know the most exciting (and kind of scary) thing? I finally told my friend I have feelings for them, and they have feelings for me. So now we’re in a kind of relationship. And it’s nice because they know I’m different but they still respect me as valid while still working with my differences. The other day we went to a concert, not something everyone would do with me, and we decided to not take Allie for her safety. I was sad because she’s always by me, but I didn’t want her to get stepped on or be hurt by the noise because they don’t make headphones for dogs. I trust my friend more than I do most people but I’m still scared. But they don’t mind when I’m having anxiety or PTSD and they listen to me. And it’s ok with them that I like to kiss but not have sexy time. They say they liked my innocence and honesty and not to ever change no matter what society says. Even if we become just friends again one day I’m really super happy to have such an awesome nonjudgmental person in my life. They said I’m easy to love. But not most people think that, most think I’m just a burden, so I think they’re really special 

That kind of autism 

I don’t like when people say but my child don’t have that kind of autism. I see that on Facebook a lot with some of the autism things I follow (mostly I follow cartoons like curious George and paw patrol and scooby doo but it’s nice to not feel alone being different so I have a few autism and cerebral palsy things). Mostly it’s by parents with children less than who are nonverbal and/or may also have a intellectual disability. They’re saying they’re their child is low functioning and using it as an excuse that they can’t do something and never will be. A development delay is that a delay, it may take us longer but it can happen. I really really hate it when its of they child can’t say how they feel or think, which is where I see it the most. If you’re on a post that is asking people with autism their thinks who are you to decide that everyone who answers is “high functioning ” and that you’re child is to “low functioning ” to ever respond to a question. I’m nonverbal and have a intellectual difference and physical limitations and I still can. Sure I need help. I’m not very good with words and use a picture based system even for typing. I have to look up stuff or ask someone to explain a lot but I can do it. It may take awhile to find the best way to help your child find a way to communicate but it’s possible- there are hand signs, pictures, AAC, tv scripts, and of course typing. And maybe some other stuff. Instead of looking at us adults who you see on fb and say my child will never be like that you can think there’s hope because these adults find a way. Or you can even ask us what helped us. But it’s not fair to decide that children who have more obvious differences won’t never learn. Be patient and keep trying new ways. Yes I know there are people with and without autism that have a more big intellectual difference than me (one of my longest time friend does) and they are still valid are able to find a way to communicate to. Don’t you limit them. Our bodies and brains may be different but we still has souls with thinks and feels just like everyone.