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.
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:
A similar structure is followed when she ventures into the community.
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.
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:
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.
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.
Circa. 2008 at the sweet age of 4, my daughter Allie that lives with PCDH19 epilepsy, autism, OCD, and ADHD named her beloved yellow stuffed animal. Duckling Jack O'Lantern Suped is the name she swiftly choose one afternoon. I can’t make this stuff up guys! 15 years and a million wash machine joy rides later. The. Name. Stuck. It's still her favorite stuffed animal that she sleeps with every night.
Duckling Jack O'Lantern Suped a.k.a. “Ducky” has been by Allie's side through thousands of car rides, nine vacations, three surgeries, hundreds of doctor appointments, and approximately 4,200 seizures. I'm shocked that we haven't lost this damn duck.
Why the loyalty? Could her sweet plush duck appear real to her? Remember the Velveteen Rabbit; a children’s book written by Margery Williams in 1922. In the book, the stuffed rabbit was loved so much from the boy who got him as a Christmas present, that a fairy stepped out of a flower and magically turned him into a real rabbit. I know this book so well that I could recite on command. No joke that is how many times I have read it to Allie over the past 15 years. I have to wonder if she knows something we don't know about toy magic?
A person with special needs is, do I dare say is lucky? A wonder brain? Speaking about my daughter only, because I've known her for 15 years, she indeed has the most remarkable life. She lives in the moment. She lives by each minute or whenever her next snack or meal is. She spends her days lounging in her favorite soft cloths, playing her favorite games, reading her Curious George books, eating her favorite foods and wondering when the next trip to the amusement park will be. And her latest obsession is when she can get her chance to win at a giant claw machine.
What a life! No rush to have a car payment, get a job or worry about what to wear. Nope. Allie could care less about the latest pop group or fashion trend. This strong teen can't wait for her next pajama day while sitting next to her best-stuffed animal Duckling Jack O'Lantern Suped. #ilovemychild
For over a decade we did not know the root cause of our daughter Allie's seizure disorder. Having the why unanswered was incredibly difficult, to say the least. I felt like an erratic mother bear searching to no end on everything as to why her brain was broken. Desperately scraping surfaces for any clues. I could not rest well without knowing. Negative on both sides of family history for mental illness, chronic conditions or any seizure disorder. Baffled. I was fishing in ponds of medical guesses, and mentally I was running out of bait.
September 2014, around midnight, Allie age 11, sleeping in her bedroom just down the hall from us. I was in my dark bedroom Googling down a rabbit hole about pediatric epilepsy as I have done a thousand times before. I came across the PCDH19 Alliance website and in one paragraph I was introduced to PCDH19 epilepsy. As I read further the bullet points listing out symptoms were Allies. My eyes opened wide, and my heart was pounding as I read:
What Are The Symptoms Associated
With PCDH19 Epilepsy?
I never heard about this kind of epilepsy. I continued to read the entire site. Feeling excited and scared all at once.
“THIS IS ALLIE!” I said to my husband lying next to me.
What stood out the most while reading posts from other families. A small detail, but a genuine trait of our daughter, was that these children loved swimming just like Allie.
I immediately messaged the website explaining who Allie is and the similarities with other children with the gene mutation. Delighted and shocked to receive a message back at that hour from the admin.
“It sounds like your daughter has PCDH19 epilepsy. Have you ever had an epilepsy gene panel done for her?” From that message, our lives changed.
"No, we have not heard of that. But I will have the doctor order it." I wrote back. Finally, our first solid clue and it was a big one. My mind racing. Could all this be the result of a gene mutation? Could we have an answer from a simple blood test? It was more than I could fathom.
I was mad, outraged, happy and sad all at the same time. My extreme emotions ran through me hours into the night. Why hadn't our neurologist offered this simple test before? I needed that epilepsy gene panel ordered for Allie.
4 o’clock in the morning, exhausted after reading all I could about genetics and PCDH19 epilepsy, I collapsed in a deep sleep. I woke at 9 a.m. called the doctor's office at the Children's Hospital Neurology Clinic explaining that I needed a specific gene tested. I was directed to the genetics department shortly after and was then assigned a genetics counselor. They did their administrative work behind the scenes to get the test ordered and ultimately it was paid for by insurance.
Seven long weeks after Allie's blood was taken, my phone rang. It was the genetic counselor. Her words echo still to this day.
"Joni, you were right, she IS positive for the PCDH19 gene mutation.” I ugly sobbed in the middle of her sentence — the rest of the day a blur.
A bittersweet feeling afterward as our family finally had an answer. Heartbroken, as there is no cure for my daughter's rare gene mutation. The medical treatments are no different. After all, it's only words on a piece paper: important words, no doubt along with a crucial diagnosis.
The fact remains, Allie is who she is and that never changes; however, I am grateful for the unanswered question that was finally answered after ten years of not knowing the WHY. It changed me on the inside. A calm had entered my psyche. My motherly instincts now verified.
Social media; take the good the bad and ugly from it, I chose to take the good from it, and I now use it as an educational tool.