Don’t Sing Happy Birthday: A Mother’s Journey through Autism and Epilepsy
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Author Joni Brown

Work = payment

1/31/2023

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What's your definition of work and payment? There's so many different meanings to this. Mine is to provide a service in exchange for monetary value. We have this system in place to execute in our everyday lives of having the understanding of getting payment for work or services we perform. Thus, in turn we buy other goods and services. It’s what makes us live in a somewhat civilized society. But to some people living with disabilities the definition varies even more.
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Hard Work
My daughter is a teenager who lives with PCDH-19 epilepsy, autism, anxiety and OCD. 
However, her definition of work and currency maybe simple things to us, but to her they are very important.

​For example, her school work payment cycle is similar to the working class. Her day is to work on her social skills, obey and do what is expected during the 7 hour school day in exchange for reward. Her work days involve these activities:
  • Complete assignments
  • Respect staff and students
  • Don't hurt or touch people
  • Stay in class
  • Don't sleep

A similar structure is followed when she ventures into the community. 
  • Follow the expected social rules
  • No talking or touching strangers
  • When speaking respect other’s personal space
  • Always hold a hand fidget to assist with anxiety
  • Don't steal

For over a decade she has had extensive therapy including ABA, sensory diet’s, music, speech and OT. Now in her teenage years, she is reaping the benefits of her hard work. However, we cannot simply walk away from ongoing and important social therapies as they are still ever changing as she grows into adulthood.
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It’s Payday!

After her successful day being focused and keeping it all together she earns soft little pom-poms to stuff in a jar. Every evening before bed we meet at the jar and talk about the activities she worked on. For each earned activity she earns one pom-pom. On good days, sometimes a handful of them and other days maybe only one. After a few weeks, the jar is stuffed with her well earned rewards.

Now the fun part! When the jar is full of those colorful, soft pom-poms, it’s payday. The paycheck stub take the form of one of these activities as she chooses:

  • Indoor wall climbing
  • Jumping at the trampoline park
  • Swimming and going down waterslides at the local recreation center
  • Riding roller coasters at the amusement park (seasonal)
  • Bowling
  • Arcade with claw machines
  • Indoor skydiving​
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The journey towards the jar becoming full is part of the fun with a learning aspect to it. It gives us a chance to reflect on the day, how to improve and feel good about small accomplishments.

Bonus
​Everybody loves a bonus, right? There is one in her "paycheck" on most paydays. Generally speaking, at most kid entertainment venues there's a mighty vending machine around a corner and she always chooses her favorite bonus... Flam'in Hot Cheetos.

For this post I needed to know how to spell Flam'in Hot Cheetos, after a quick Google, this news article caught my eye. If you are interested to learn more about the story behind how the hot Cheetos came to be. 


Please leave your comments below with what you do for your child’s reward system. 
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