 My daughter is the strongest human I know. She lives with PCDH19 epilepsy. After her first seizure in 2004, we were living each day to stop seizures. During those dark days, so much energy was focused on the bad and the "what if's." She has come along way overcoming side effects of this disease. After 15 years, I know the meaning of gratitude. I am grateful each day she is seizure-free. She is vertical and ready to go. If she is happy, that is just enough for today.
 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   Today I was checking out at my local grocery store. The young man bagging my groceries had special needs. He was very social with excellent eye contact as he asked me if I had any fun plans for the weekend. I smiled and said, “Yes. It should be a nice weekend to grill out.” I quickly asked him, “How about you? Do you have any plans?” He simply and politely said, “I plan to relax at home.” It was a perfect exchange of pleasantries from one to another. As he bagged the rest of my grocery haul, he looked over at a co-worker and asked if she was done for the day, and she said, “No. I’m just on lunch if you wanna join me after you finish here.” I felt very happy for the young man. He has his place in the workforce, earns a paycheck, contributes to society, and clearly has no problems with socializing. As I finished my payment, smiled goodbye, and rolled out my grocery cart to my car, I felt a huge wave of sadness come over me. By the time I got to my minivan, my emotions were too much to contain. I placed two bags on the car seat and hid my face inside as I wept behind my large black sunglasses. I was sad for my teenage daughter. She lives with a severe form of epilepsy and autism. Although she has these challenges, she still perseveres in her daily life, and her social spirit is a strong force. Sometimes she is the queen bee of socializing, with appropriate conversations and happiness all around. However, she has an unpredictable side to her that consists of inappropriate behavior. Sometimes we cannot take her in public for the safety of herself and others. As I cried in my minivan, I sobbed at the future for her. Where will she fit in? What will her days look like post-high school graduation? How will an employer understand if she cannot come to work because she is having a seizure cluster? What employer will see her as a sweet human being and not someone with disabilities? Today was one of those days where the future was too much for me to think about. Moving forward, I need to be her strongest advocate. Look for the best work programs, so she has a chance to be part of society. I wish for her to not only take up space in the workplace, but to be a positive contributor to an organization that will help her have a good quality of life. Even though I am not sure of what that will look like, I will figure it out in the near future.  SproutData is a complete personal real-time seizure tracking, organization and communication tool. Access the SproutData website from your phone, computer and tablet to help you manage seizures, events, medications, conditions, doctors and more. Add family members and caregivers to help you better communicate the health of a person.  Your custom dashboard allows a quick view of your data in real time.  With a few clicks, a user can log each event or seizure. A time/date will autofill, or you can go back and easily adjust the event at your convenience.   Your data is visually represented to help you find possible patterns. Easily view external factors that may or may not contribute to the seizures.  SproutData is not just for seizures. Its a powerful tool to store information such as doctors, medications, dates of past surgeries and other health-related information. It's all in one place and easy to access your health notes anytime, anywhere.  Medication management is the number one requested tool. With the medication database, users are better organized and have the ability to see active or inactive medications.  If you are tired of a spiral notebook and pen to jot down your important health information then it's time to create your free account here https://sproutdata.org/ I am affiliated with SproutData; my husband is the computer programmer that created the site to organize our medical notes from our daughter's complex medical issues. To read the full story about our family and how SproutData helped us see the Facebook page linked below. Follow SproutData on Facebook  The story A Thousand Marbles touched my husband and me to the core. Its a short story about what each day meant and means with the people who you love. It's very well written, and I want to share. Please take what you want, leave what you must but share if you care. Enjoy. We sure did. Here is a link to the story: A THOUSAND MARBLES   It started out as a family blog to be more organized. Over the years, it has turned out to be better therapy than I ever imagined. I vomit out my emotions onto the screen. Now, I write as an outlet, it's fairly selfish; I do it for me.
 I write a lot of letters. I always have my husband read my latest composition. One evening, after printing out my latest letter, I confessed to him that, “I write a lot of letters.” His kind response was slow and he simply said, “Yes, you do.” Which naturally prompted me to write about writing letters. Not pencil and paper. Yeah, right. I seriously don’t have the capability to be that slow with my thoughts, and my penmanship is a travesty. Shhh, don’t tell my kids. They are still learning the craft. Of course I type on some form of a digital screen and store drafts in the cloud so I’m able to gain access anytime to edit when my anger explodes again. I need to release that shit. When something is wrong, I refuse to vent on social media. Let me type that again. I refuse to blow my fuse on a social media platform. In my own old-school opinion, it’s just NOT the place for it. When the issue is between a person(s) and me or my family, writing a letter or a text to the source is more appropriate. I include their constituents if it’s necessary, which it is in most of my cases because there’s great satisfaction in adult tattling.  Which brings me to the feeling of satisfaction. Absolutely, it feels fucking terrific when you tell a person who wronged you they need to be held accountable. For example, just a month ago, Principal Sir, your power-hungry ego got out of control when you refused to allow us to tour the public school you run. What makes you think you can do that? Well today, you are called out, sir. So sit down and read my fury with your boss. Which brings me to Miss Special Education Teacher circa 2014. What you did may not be against the law, however, you definitely rode the fine line of ethical and immoral behavior when you decided to hold back my daughter with autism and epilepsy from her 5th grade field trip and then hid it from us. (That happened, and a school-wide policy changed after.) I don’t have time to write all the letters and small notes I desire. I wish! For example, the very busy small parking lot at preschool. One blue Subaru double-parks every day. YES, this driver takes up two spaces with her shitty car. It is super irritating, to say the least, as I walk past it. I wish I had more time to add sticky notes onto this idiot’s car window. Someday, I will have more time in my day to write Post-It notes to strangers.  Pounding away on a real keyboard is gratifying. It’s not the same sensation when I am typing with my two fat fingers on my tiny smartphone while parked in my car. I have total respect for my sad but strong keyboard keys--venting as I find a sense of closure. It doesn't always pan out the way I envision it in my head because in my head everyone gets fired. Nope, unfortunately, that ain't the case. The reality is after my letters get delivered and my release is vomited out, there comes some disappointment. Therein lies the reality that the world doesn't revolve around me and my opinions. I’m okay with that. I move forward and carry on with my personal resentment. I look back and I am okay (most of the time) that my thoughtful, well-written letter was my cheap therapy for that day. There it is. The letter about my letters. Peace out, mudder fudders. Don’t care about haters because I am a special needs mama bear, hear me ROAR.   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.  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:
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.  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:
 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. |
the writerJoni Brown writes about her life raising her daughter that lives with PCDH-19 epilepsy, autism, anxiety and OCD. Archives
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