Rachel and her sister Kara are twins with Autism Spectrum Disorder. Rachel and Kara enjoy coming to Leaps & Bounds and participating in the One Day Fun Days. One of their favorite activities are the messy bins. Rachel has been working on different strategies for calming herself and helping her sister stay calm. Rachel agreed to share her insightful writings as a look into how someone with Autism Spectrum Disorder perceives situations and works through them on a daily basis. She was gracious enough to let us highlight her writings for Autism Awareness Month.
My name is Rachel.
I have a twin sister named Kara.
I am mostly a nice and loving person, and I do really well with her sometimes.
Somewhat, whenever I want to have something specific for some reason, like a “demand,” she doesn’t do it as soon as I expect it so I get nervous and I tend to fret.
I know my sister is almost like me, since we both have autism, but sometimes she needs more time to process some things in her head.
Sometimes I even expect her to change her behaviors like repeating words, such as “curse” words, but then she can get angry or upset easily.
Along with that behavior, she wants very specific things over and over again, and I do not understand why. I get concerned when Kara gets upset and want to help her.
But now she sometimes does not listen to me, which puts me in the yellow zone, just almost as close to the red zone.
That’s why I feel like she should be a little less worried and think about more good things.
You see, I am learning now that my sister needs deep pressure when she is feeling upset, anxious, and a bit overly excited. I know now it is hard for her to control this in the moment because she sometimes cannot stop her body when she is feeling this way like I can. (Once nowadays, she squeezed me on my arm).
So now my strategies are whenever Kara is feeling upset, nervous, and a bit excited are to at least get out of her way and then I can tell to squish her sock and/or her balloon squish ball. (She helped make them at Leaps & Bounds).
So I can deal with it a little bit more.
Such as this, I can tell Kara to think happy thoughts while she is using the red words.
I can tell Kara simple small phrases so she can understand when she is in the yellow zone.
And lastly, I believe that it may be just as best to stay calm whenever she has those meltdowns, so I can still be a good sister. Overall, I can be able to show a good example while I’m doing everything I should be. For her that way.
Dear Leaps & Bounds:
To all of you who at least tried to help me at this time, I wanted to tell you how much I appreciate what you may have done for me first and then what you did for me today. After all I sort of kept going through what I was thinking, I thought I pretty much knew for the most of my time back when I was 14 even though I wasn’t in control and breaking apart because of my outbursts. I mostly knew after I began changing these days that mostly I may have purposeful power and responsibility, and that my body parts and mind could handle it. I couldn’t be able to overreact and simply think about it in the first place.
Sometimes, then, I just realized that whenever I am interested in watching this movie or doing my other favorite activity like playing with something, besides a stress ball, I realized that I just want to have fun and do what I want to do. I can take it easily and remember that I can be in control and do things my own way.
Well, now unfortunately at this time, in this room right now I am trying not to think too much about it and overreact to it, but I just can’t help it at all. I get so worried, I just cry a lot. Since I’m almost 15 now and not just having déjà vu, I just don’t know if I can handle it. Ergo, being 15 may be sort of fun and new, maybe thinking of being in control actually wasn’t possibly a full time thing for me. It can take a heavy toll on my emotions now that I know and I can’t stop knowing, sorry to say.
Only if I could write a story to my future self. Here’s a little thing for her: It says…..
“Remember my trusty, friendly future self: You may think you are either in fully control or not, but you must keep track of what you are doing and not overreact too much. Otherwise, you may not be able to handle what you are doing. Don’t bite yourself, okay?”
Love you all,