A Day in Rachel's Life

Rachel and her twin sister, Kara, are both Variety Kids. They have been diagnosed with autism, but it affects Kara more so than it does her sister.

We asked Rachel to describe a day in her life, and she chose to not only share what it is like to live with autism, but to have a twin sister with autism as well.

Here’s her story, in her own words:

My name is Rachel.

I have a twin sister named Kara.

I am mostly a nice and loving person and do well with her sometimes.

Then, somehow, whenever I want to have something specific for some reason, she doesn’t do it as soon as I expect it so I get nervous and 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 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 she sometimes does not listen to me, which puts me in yellow zone, 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.

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. 

So, now, my strategies when Kara is feeling upset, nervous, and a bit excited are to at least get out of her way and I can tell to squish her sock and/or her balloon squish ball.

But I can deal with it a little bit more.

I can tell Kara to think happy thoughts when she is using red words and 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, and I can be able to show a good example while I’m doing everything I should be for her that way.

Green, yellow and red are the color “zones” Rachel, Kara and their family use to help them describe how they are feeling and also how they are making others around them feel.