Live In Caretaker
“I moved to America in July of 2018, and right from Kosovo I moved in with Katy’s wonderful family. When I first met Katy she said, ‘Oh hi, are you Fjolla, my new nanny? I love you!’ She gave me a hug and left the room.
Spending every day with Katy for a year was amazing, and when people ask me how did your ‘American dream’ start, I begin my story with Katy’s name. She isn’t just my dream, she’s also my beautiful reality.
Katy’s mom told me she was 2 when she was diagnosed with autism but as a mom she never loved her less and she raised her with love and to have good manners.
Katy has her own unique way of thinking, which I adore. She takes things exactly the way they are, what you say is what she hears, and she process the language just as it’s spoken. She’s very literal. I remember when she had a play, we were practicing at home and I said, ‘Break a leg!’ She got furious and started yelling at me, ‘Why do you want me to break a leg??’ Because of this, while we were eating dinner we’d give her example of idioms so she could start to understand.
She wants everything to be just the way it is and she doesn’t like change. Because of this, it helped teach me I should love people and things exactly as they are and not the way I want them to be.
We did everything together, and I loved every minute. We would go to the library, the park, the toy store, the book shops, the zoo…basically anywhere you can think of. She had such a unique view of the world. I always had lots of different conversations with her, for instance while we were walking she would ask me so many questions. ‘Why is the sky blue? Why is the sun shining? Why is the dog barking?’ It was so pure. She would stop and ask me, ‘Can I give the tree a hug?’ She truly just loves the world around her.
Autistic Coping Mechanisms
Part of Katy’s autism presents as something called ‘stimming’, or self-stimulating behaviors. Occasionally she will stare at her hand super closely. Doing so makes her focus solely on herself and not the world around her. While stimming she will ‘fly’ off into her own world, but we didn’t want her to ‘fly’ there too often, because we needed her with us, and not lost in her brain. We distract her to bring her back to ‘our’ world. She brings us so much joy. I started to sing a song for 3-4 minutes every time she started to stim and we made a deal that every time the music stops she would stop stimming and we’d sit and play games together. This way she knew there was nothing wrong with what she was doing, but could manage her time and know when it’s time to stop. She did it perfectly.
Occasionally, when I asked her about the way she feels or why she doesn’t want to do something, she tells me her brain is stuck and it’s why she can’t express herself. My Katy is so smart, she just can’t always figure out what’s going on in her beautiful brain and doesn’t know the easiest way to let it out. I helped her find different ways to see what’s inside her unique brain and let it show.
Our favorite place was the library, I love reading and Katy does too, you almost never see her without a book on her hands. She loves new information, so I used this to create a special bond. I ‘used’ the library to teach Katy to go and ask the librarian for books all by herself. I’d pretend I was tired and would ask Katy if she can go and ask if she can check the book out for me. She would do it, and we would take turns. It helped her become more comfortable with being social, and she learned everybody has to talk to people and found ways to cope.
I feel bad every time I hear people saying people with autism have no feelings and show no emotions, my Katy experiences all kind of emotions, she just expresses them in a different way, her own way. For instance, Katy couldn’t stand all the noise around us once, so she put something in her ear to stop the noise. We tried to tell her why what she did wasn’t safe or appropriate. Later she said it made her sad, drew some tears, and wrote a note saying, ‘I am sorry.’ She came in my room smiling and holding the note saying, ‘Here Fjolla, that’s for you, good night,’ and ran in her room. This is the way she expressed her emotions, through drawings.
I was trying to show her it’s ok if she is in a noisy place for just a few minutes and I would help her learn how to cope. There is a Starbucks in her town where we used to go, and was a bit noisy and Katy didn’t like it. One time we went in and I asked her to stay only for 5 minutes. I said, ‘You can read for 5 minutes and I’ll set the alarm, and then we can leave, how’s that?’ She said yes, and after 5 minutes she said okay, let’s go. I asked her if I could set the alarm for 10 more minutes, and this way she would focus on the time not the noise, somehow teaching her, ‘selective hearing.’ And it worked! We went 2-3 times per week, and eventually she asked to go all on her own! I was so happy. With a little patience and love you can teach her anything.
Growing Through Autism
Later on, we used the same place to teach her how to manage money and give tips. I LOVE how now when she pays for her drink she looks at me and says, ‘Hey Fjolla, she was nice!’ and gives the girl a tip. That kind of interaction was nearly impossible before. Katy is so innocent and sincere. It’s beautiful.
Sometimes, all of a sudden she will close her eyes and smile and laugh, and it’s not weird or awkward, I know she is just remembering something which happened to her and feeling free enough to let go. While taking care of Katy, I promised myself I was going to spend all my energy NOT trying to change her, but accepting her just the way she is, and making sure she feels she is being loved every single day.
BUT Katy did change me, and because of her I am a better person. I see the world in a new and changed way, and I know I can never thank her enough.
My Katy is a human being who happen to be Autistic, and there is NO need for a cure for being who she is.”
This story was submitted to Love What Matters by Fjolla Rraci of Nutley, NJ. You can follow her journey on Facebook and Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more beautiful stories written by Fjolla here:
‘They’re a burden to society. You’ve got a lot of nerve spending time with them.’ I didn’t understand how others could think that.’: Woman ‘dedicates life’ to helping those with Down syndrome, says they’re living proof ‘pure love exists’
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