Wednesday, July 24, 2019

This year was the worst that I've had in warring with my autism almost constantly.  Can not explain why, but I haven't been able to control my aggression and I've hurt many people who care about me.  Now I'm hitting sometimes.  Seeing my parents getting so upset is hard.  Mom cries and Dad is angry at me because he thinks people will very soon be afraid of me.  
You should really take my word when I say I'm trying to stop doing this.  I'm making some progress at the head butting, but managing the finger twisting and hitting is proving difficult right now.  Want what I used to have - the say in what my body does and doesn't do.  Are autistics more wasting away their lives because leading ourselves to be able to function in society is so difficult and exhausting?  
Things will take time to improve, but I'm hopeful they will.  These days I'm missing out on wanted and loved activities.  Yelling with the loudest yell lately.  It's getting people upset.  Makes going some places impossible right now.  Hearing what I sound like disturbs even me.  I hate using my voice that way.  Yearn to learn to control it.  It feels having this problem my whole life.  You'd think someone who is almost sixteen wouldn't be crying and screaming all the time.  Maybe you've heard me.  It's not pleasant.  It gets my whole family on edge and will get people around us staring.  Need something to change and please pray for me that it will soon.  
Meeting the hard demands of high school can be stressful.  Mom sees that I'm more relaxed going to summer school, but knows they don't challenge my brain.  Miss reading and learning, but I don't miss weeks that we made my school stressed about how to deal with the scenes I make sometimes.  
Really every fear that you think might happen has happened to work against all the progress I've made since learning to express myself so well by typing.  My biggest fear is that I'm never going to stop doing these things, teaching my family really that having me go to things is permanently too difficult.  Facing this future feels bleak.  
Want to say really small teaching advice.  If you find yourself where someone like me is having a meltdown, make treating that person with empathy and compassion your goal.  Imaging feeling the despair we feel over our behavior.




Monday, January 7, 2019

Walking through life has had its ups and downs lately.  Great things happen one day and the next something bad happens.

Let me tell you about the good things.  I'm learning to access my real voice.  So happy to tell you that I said "Mom" for the first time.  This has taken several months, placing much trust in caring speech therapist named Leah.  She has been so patient, stopping her doubts from creeping in even though she's never worked with someone like me. It makes certain people nervous working with me, but Leah likes my challenging her.  Now making progress every day. 

The best thing thats happened lately is that I now have a boyfriend. He's from Canada and is also nonverbal and types to communicate.  He is so sweet to me.  Feeling we are a perfect match.  He makes me feel pretty and loved.  I'm doing my best to survive without seeing him that often.  Going that far has been hard. He's come down and seen me. Doing the same for him soon is important to me.  My mom has done a good job planning activities where I get to see him. Right after Thanksgiving we had tickets to a Sabres game.  My aunts company donated their suite so lots of friends could meet in a low stress environment.  Plans like that are so much fun and as an added bonus they played really well and won their tenth game in a row. 

That these days have also been rough almost goes without saying.  My autism hasn't been easy to deal with lately.  My aggression makes me hurt myself and the people who I care most about.  Makes me so sad when I hurt my loved ones.  I need to get control of this.  Makes me nervous having no control and the more nervous I get the more likely I am to lose control.  It's a vicious out of control make my armpits sweat kind of situation.  Mom and Dad have tried to help. Having their love and support makes things easier.  Now Dad gets mad sometimes, but I understand he wants happy Kaylie not mean Kaylie.  Mom thinks everyone my autism hurts understands.  I'm sorry but not really.  I'm hoping starting birth control will help with my mood swings.

Having autism is my life. There's not a cure.  It's daring me to fail, but my feeling is that I was put on this Earth to show how much people with autism are capable of. We just need to be given a chance.