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.


Thursday, October 4, 2018

Essays - Fine "Whine" and "What If?"

Fine "Whine"

I'm fifteen now.  It's an interesting age to be.  I suppose I should feel different or older, even though this birthday isn't as big of a deal as sixteen will be.  I don't feel much different, though I think I've had to grow up and mature a little quicker than others.  Don't let the Strawberry Shortcake videos fool you.  They are more a source of comfort than entertainment.  No one is too old to be comfortable.  I guess that, to me, getting older is actually all about comfort, namely being comfortable with myself and my needs.  Self-acceptance is really a skill, and I'm happy that I'm getting better at it with age.  I would say I'm aging like a fine wine, but fifteen is below that legal drinking age, so I'll save that joke for another six years.  I'm sure that it, and I, will be just as good if not better by then.


What If?

I am always so encouraged when I make progress in certain areas and when people believe in me, but sometimes the trickiest part of everything is believing in my self.

I think that's natural and common for someone my age, and I try not to get too down on myself.

I do my best to ignore the "what if" voice in my head.

What if my skills plateau?  Why if this is the best I'll ever be?

I should be asking myself what if I win a poetry contest?  What if I get into a bunch of colleges?

I need to make the "what if" voice my friend and make her ask the right questions.

In the end, I'm in control, and the what if voice doesn't speak for me.

More and more, I'm learning to speak for myself.



Saturday, September 15, 2018

Trust

Trust is a big component in my success.

I have to trust a lot of people and a lot of things.

I have to trust that my environment will not overstimulate me.

I have to trust that my technology will work.

I have to trust that the person holding my keyboard assumes my competence.

And mostly I have to trust my body to listen to my brain.

One or more of these things may not happen, and then I have to trust that I will be able to deal with things not going according to plan.

It's kind of an exhausting way to live, and it isn't pleasant when trust is broken.

But I get up everyday and try my best because I also trust that through my hard work, my life will get easier.

I've got this.

Trust me.

Thursday, August 9, 2018

Really can't believe how long it's been since I blogged.  Been very busy this summer.  The greatest thing is happening.  I've started working with a speech therapist.  Her method is called PROMPT.  My greatest dream has always been to be able to talk.  Very hard for me going through life as a nonverbal person.  Nothing can compare to being able to speak your mind.  Thanks to family's perseverance, I've been able to learn how to communicate by typing, but being able to type doesn't mean you can easily be part of conversations.  Going to work my hardest and it may take years, but I'm happy having the chance to work on speech again.  I'm always having big dreams and my family supports me any way they can.  So glad we met Teresa from Cincinnati.  She told us about her son and how he learned to get his voice to work.  This gave me hope that one day you will hear me speak WITH a voice.


Tuesday, May 29, 2018

On Sunday morning I was on the news for the second time promoting RPM.  I'm grateful that I have been given opportunities like this to show the world what RPM has helped me do, but I'm always a little nervous about backlash from skeptics.  The first thing I want to say to people who think RPM is fake is, "don't you have better things to do than call autistic people liars?"  It saddens me how often have to tell people that RPM does not work for everyone, just to get them off our backs.  Feels like it negates the fact that it does work for some.  People who claim to know about autism should understand that not everything will work for everyone, but anything is worth a try.  And for those who do not think RPM is evidence based, I would think people like me are all the evidence you need.  I can participate in my own life in ways I couldn't before I used RPM. It's not always easy or perfect, but it's been a game changer and really a life saver for me.  I recently heard the phrase, "Let your haters be your motivators," and I think that applies here.  In the end, people can say what they want, but I'm going to keep working hard and proving them wrong.



Monday, May 14, 2018

My California Vacation

You had to have been wondering what's been taking place in my life in the month or so since I've last written.  Hearing from me has really become a highlight.  Don't mean to keep the public waiting, I've just been really busy and been basically unable to make the time.  Small things keep getting in the way.  Very hard going so long.  Every person that slowly moves through life like me will understand small things can become huge obstacles.  Have so much to get off my chest.  

I'm going to start by writing about my recent family vacation.  Makes my mind swirl thinking about everything we did while in Los Angeles.  Getting to LA was somewhat panicky.  My parents didn't realize how many different lines we would have to wait in at the Toronto airport.  Can't say I liked that part very much, but I dealt with it the best I could.  Dad was getting more stressed than I was.  Mom stayed calm as usual.  Must be amusing for people to watch us all happy one minute and seconds later we're losing it.  


The very worst part of gandering off to Los Angeles is the extremely long flight.  I'm years going on flights and this was by far the longest flight I've ever been on in my life.  Most of us were dying to get off the plane.  Needed to use the bathroom.  Don't like to go on the plane.  Really might like my own private plane someday.  Hope getting it is possible if Dad keeps working hard meeting his goals by the time he retires.  Must be Dad's main goal so we an go wherever we want.



Had fun our first night.  We went to my favorite character, Goofy's restaurant for dinner.  It managed to meet all the expectations.  Met lots of characters.  Loved walking around downtown.  The next day we went to people's favorite amusement park.  Going to the park run by your favorite mouse, Mickey,  was doing something that my family loves, but I only like.  Going there can be stressful because of all the crowds.  Mom does her best to work the fast passes so we don't stand in many lines.  At a certain point I'm just done.  Think we were all done about the same time except my sister Emma. 





Going the next day for another character breakfast was overkill, but was ok.  Better food at normal restaurants.  

Mom was smart to plan a whale-watching trip later that day.  Thought it was amazing!  You have to go if you ever get the chance.  

The next two days were spent exploring Hollywood.  Had fun doing a tour of celebrity homes.  Have to say it's good living in the Hollywood Hills.  The next day, the movie Dad took me to was good.  My mom and sisters spent the day at the American Girl store.





The next day peaked at the top of a big hill overlooking the valley.  Hiking up there was hard, but worth it.  Got to see beautiful views and spend time with my Aunt Kelly.  Really should end this, but only two more days. 


The next day we went back to have fun riding some scary rides.  Might surprise you that I'm able to be the kid who goes on rides.  Handle them really well.  I can't believe I went on the Guardians of the Galaxy Dropzone.  Mom was nervous I wouldn't like it, but instead I loved it.  What a thrill!  Very happy I went on it, can't wait to go on it again, because I'm live everyone else on the ride - scared out of my wits!  Managed to go on a lot of other rides before we left.

The next day was our last day.  We wanted to visit Venice Beach mall of interesting shops and people. 

 I really enjoyed seeing the Pacific Ocean again for dinner.  We met my Aunt Kelly and her nice boyfriend Mike at a restaurant on the water in Malibu.  


It was so beautiful.  Freed me from my stress going on this vacation.  Everyone needs a break from reality.






Saturday, March 3, 2018

Freedom to express my thoughts and opinions has led me to write this blog.  Missed many thoughts I had when I was young, but now being able to communicate has carried me towards many exciting things.  I can't wait for the next big thing - going to California in a few weeks.  It has been a dream of mine to see the Pacific Ocean.  Have carried these dreams around in my head for so long, I can't believe it's actually coming true.  I can't wait to see more.  

Makes me feel so lucky that my parents place an importance on listening to me and traveling.  I have made so many great memories.  Going on trips is my favorite thing because my boring days make me crazy.  My amazing parents try to find fun things for me to do, but our options in Buffalo are limited.  Managing to keep life interesting.  

You might really expect that traveling would be stressful for me, but it isn't.  Meeting heaven like happiness when I'm going to the airport to fly somewhere new.  Very distant places are even better.  Choosing California over Mexico was a good choice by my parents.  More things to see in California.  I miss doing nice adventures.  

My winter has been pretty boring.  I don't like being out in the cold, so winter confines me to the house.  March has come in like a lion and dumped a huge amount of snow on us again.  School was cancelled and I spent most of the day bored.  Actually really wish that we lived in a nicer climate, but I think we'd miss our friends too much if we moved. 

 What do you dislike about where you live?




Wednesday, January 17, 2018

You get to hear what has ben going on in my life the past month.  I've made what I would call a lot of progress.  School has been going better.  I'm getting more comfortable with the people there.  I have worked hard to not be aggressive with anyone even if I'm frustrated.  

Mom has also had some interesting things going on.  She organized a workshop with Soma, who is the creator of RPM.  She had to coordinate a lot.  Mom did an amazing job along with her partner, Laurie.  They work well together.  The workshop went great.  I got to work with the amazing Soma two times.  She decided to see how I would do with making an attempt to write.  Made me a little stressed because I don't write very often.  I was totally able to do it though.  I was so proud of myself.  Like the idea of being able to write my thoughts in addition to typing.  The amazing thing is I would be able to take tests without someone holding my keyboard.

I used to think that I was never going to be able to fit in.  Wouldn't want to go places.  Going another way was easier than facing the challenge of facing my fear of making a scene and embarrassing myself.  Must work the hardest to remain calm when I feel stressed.  That has always been a struggle for me.  I was always the kid screaming and disrupting other liked kids.  Some kids with autism run away, others laugh uncontrollably, I scream.  I wish I could stop doing it altogether, but at least I do it a lot less.  Sometimes I'm just unable to.  Would love to be able to type and tell people what's wrong, but my autism just takes over and I lose the ability to type coherent thoughts.  I'm sorry because I know that people want to help me, but sometimes it's just possible.

I'm basically another white kid who has been able to succeed because my parents have the resources to hire tutors and teachers to work with me.  Mom really wants to help kids make progress like I have been able to.  Through her nonprofit, she wants to make the sessions with RPM providers affordable for everyone.  Love that she is trying to help.  Hopefully they will get what they need to be able to accomplish that during their April fundraiser.  If you want to donate to mom's nonprofit, you can go to their website.


Sunday, January 14, 2018

Active Participation

I am so grateful to the people who have helped me get to where I am today.

It makes me happier than I can say that I have so many people that I can rely on.

It also makes me happy that I can add my name to that list.

Existence can be a scary place when even you yourself can't predict what you will do.

But I am learning to trust myself.

I've taken all the puzzle pieces my helpers have handed me and now I'm putting together a beautiful picture.

A beautiful life to be sure.

I am so happy to be able to put myself into it,

So happy that it has become uniquely mine.