 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.
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 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.   March 26 is Purple Day Purple Day is an international grassroots effort dedicated to increase epilepsy awareness globally. On this day people world wide are invited to wear the color purple and attend events to show support of epilepsy awareness. Who is Cassidy Megan? She is the brave teen living with epilepsy from Nova Scotia, Canada. She is the force behind the popular Purple Day March 26 that brings awareness to epilepsy. Not only in her home country of Canada but globally with the help of New York-based Anita Kaugmann Foundation and Nova Scotia. Cassidy would like purple day every day, for more information about her and this particular day http://www.purpleday.org/ Or any questions feel free to email the organization at partners@purpleday.org A simple wish from Cassidy that wanted to spread epilepsy awareness around the world. She has succeeded and we all benefit. Epilepsy Epilepsy is a chronic disorder, the hallmark of which is recurrent, unprovoked seizures. A person is diagnosed with epilepsy if they have two unprovoked seizures (or one unprovoked seizure with the likelihood of more) that were not caused by some known and reversible medical condition like alcohol withdrawal or extremely low blood sugar. Learn more about the basics of epilepsy.  7 Quick Facts About Seizures and Epilepsy:
 My daughter Allie. Happy to be in her favorite purple pajamas. About the writer Joni Brown is a mother of a teenage daughter living with PCDH-19 epilepsy. It is a rare form of epilepsy that causes her to have hundreds of seizures every year without a known cure. Despite all of her medical issues, her daughter lives a full and happy life.  image from Choutette Publishing  I am not proud that I’m a bit of a Caillou expert. My daughter, living with autism has been a fan of the children's TV show for 14 years now. Most parents can't even spell his name and would love to avoid the show. They go to great lengths just to get through their child’s Caillou phase and introduce other palatable shows. Caillou is a four-year-old fascinated with the world around him. He lives with his mom, dad and little sister Rosie. The grandparents have a strong connection too, as they whisk Caillou off on big adventures like to the zoo and parks. However, this little character comes off to parents as whiny and annoying. Four-year-olds just like Caillou is trying to live a full life figuring out that the world and preschool is hard work! Some urban legend says the main character has cancer because he is bald. This is false. The TV show as it turns out is based on the illustrated children’s book from when Caillou was only a nine-month-old baby without hair. The creators thought the character as he grew older with hair growth would be unrecognizable so they kept him bald. Also, a side note from the publishers of Caillou, Choutette Publishing explained on their site, “Caillou’s baldness may make him different, but we hope it helps children understand that being different isn’t just okay, it’s normal.” source, http://www.chouette-publishing.com/ENT Enough history lesson on Caillou. So, why does my 14-year-old with autism worship the bald character so much? From my sleuthing and trying to understand why she still watches such shows like this one, Curious George, Dora the Explorer, Barney and Care Bears is understandable.
The predictability and a sense of control are reassuring to her. Over the years and banking over thousands of Caillou hours, she knows every episode and predicts what the start middle and ending will be. Her world and living with autism, for the most part, is full of sensory overload. Socializing and communication issues such as eye contact and body language are challenging. Anxiety consumes her daily life as she works so hard keeping it all together during a 7 hour school day. She cannot wait to come home change into her soft pajamas, lounge in her favorite comfy recliner and consume her treasured toddler shows. This is her "drug" of choice. Is that too harsh to say? Naw, because it makes sense to me.  My daughter in her favorite part of the library checking out cartoon books. She chooses to watch educational programs, I am really okay with that. We have come along way from when I grew up watching the Tom & Jerry Cartoon, where Tom the mean cat is trying to hurt a little gray mouse named Jerry.
I am happy to report because of my research about this topic, I have new found peace with that sweet, whiny Caillou character! Leave a comment below: How do you unwind from a hard day's work?  This story was over a decade ago, but it still resonates with me today.
My daughter was four years old undiagnosed with Autism at the time, but we saw the signs earlier on as most parents do. I did my best as a new mom to be active outdoors in our neighborhood and walked to nearby parks with my daughter. We always seemed to run into our neighbors, a mother and daughter, at the park and I felt comfortable to extend an invite for a playdate at our home one afternoon. The mother and I had a few commonalities as we were both first-time mothers with girls of similar ages. The playdate started in our living room with some toys for the girls, and us moms sitting at the kitchen table watching and chatting. After about 20 minutes the little girl came up to me and said, “she (pointing at my daughter) told me I had an ugly dress on.” The dress was brown, and my daughter only wore pink at the time, so I believe she was expressing her dislike to a color in a direct comment. I was thinking to myself, clearly, these two girls needed to figure this small spat out. However, their team was not as flexible that day. The mom was so angry she demanded an apology from my four year old. My daughter did not respond as she was off in her own world playing with toys and carrying on not caring where her friend went. I will never forget the angry face the mother had when she looked at me and said, “My daughter will never play with yours again, I do not want her around her.” I was devastated at that moment. The playdate went to hell, and I assume my neighbor won’t talk to us again. Today, and a decade of what I know about special needs and other parents, I would not feel as bad as I felt that day. That mom was protective as a good mom should (maybe a little too protective.) I should have known better to screen personalities before jumping in an intimate playdate situation. The point is, sometimes you will have people that just don’t get it. Even today, I have learned not to set ourselves up to get burned by others. Our neighbors that accept us will come around and others I don’t get my hopes up. People have insecurities or own personal issues, but it's not worth my energy because the next family will be an amazing fit for us. Peace out to all those perfect families as I am sure you have other issues that I won't ever understand.  It was a neighborhood holiday party. There were hundreds of kids, or so it seemed, running around and having fun. The moms and dads made nice attempts to wear holiday-themed clothing. This was not an event for my day-to-day black yoga pants. Excited, I applied makeup, brushed my hair, and put on a skirt. I was ready to join. I was enjoying myself at the party chatting with other moms. I offered to fill-up another mom’s glass with more punch. I took her empty glass with my un-manicured hands and nails. These nails were past the due date of reapplying new nail polish. (I'm a nighttime DIY nail applier at home when kids are sound asleep in bed.) I never really made it a priority to upkeep any other kind of nail detail.
I knew I was caught when I grabbed the glass out of her gorgeous hand. We both looked down and caught a millisecond of what my nails revealed. This nice women's nails were spectacular, to say the least, as they were embellished with the latest holiday nail art. Clearly she spent time at the nail bar just for the holiday parties. Lucky lady! I was embarrassed at that moment; however, I stayed and played with the kids for another hour. I was driving home and thinking about my nail scandal, which really wasn't, let's be totally honest, it was all just in my head. So I decided to look at it from a different perspective: These nails showed that I completed serious work. These ugly nails had a hard week of taking care of children and all of their glorious messes. These nails are mine, and it’s the best I can do today. Peace out to all the marvelous woman that make time to salon it, I will get there someday.  I thought it was a dreaded IEP* meeting I was attending that day. It was December 13, 2011. Allie was age 8 and in 2nd grade. My husband had a meeting and couldn't attend. I have to go ALONE to this one? Simple! I can go to an IEP meeting without my spouse. He always goes to every school meeting and event. I can do this.
IT'S NOON. The smiling staff and I gathered in a warm, small conference room with an oval table. The panel was made up of an autism specialist, the Special Ed director, Special Ed teacher, OT lady with her OT dog Jack, Phy Ed DAPE staff, school Principal, school Psychologist, and her 2nd grade teacher. All very pleasant professional women that care about Allie. I quickly found out this was actually her re-evaluation meeting. Allie just had completed 30 days of testing. I knew about the re-evaluating, but I thought it would be positive remarks in a packet sent home in her backpack. This meeting was different. Here were the findings that were reported to me...
Two and a half hours later! I left that room and walked to my car. What the hell just happened? I was paralyzed sitting in front of my steering wheel with the car on idle. I was in some kind of state of shock from the 8 school officials plus Jack the service dog, going through a 28 page evaluation and reporting to me all the depressing stuff about my only child. Then I pulled over into a public parking lot. Hot, sweaty, emotionally drained. I called my husband and cried. I don't even remember what I told him. After I got home, I cried my eyes out for the next four hours. Alone, in my bed with the curtains shut tight. How could she grow and learn so much in first grade and reverse her skills in second grade? It took me about 2 weeks to not to think about that dreadful meeting. *Individualized Education Program also called and IEP is a document that is developed for an individual who requires extra or special education. Comment below about your school meeting!  Allie age 10 with an ambulatory EEG at home. This type of EEG allows her to carry on with regular activities.
Allie has three types of seizures, absence, partial complex, and tonic-clonic seizures. She has "breakthrough" seizures when she gets sick. Even though she is on two anti-seizure medications, some seizures "break through" the medications. She will have what is called cluster seizures where a seizure will appear every hour on the hour for about 24 hours. We do administer a rescue medication at the first sign of a seizure. This sometimes will stop the kindle effect. When Allie has a seizure she needs to sleep for about an hour after each seizure. There is a two day recovery time after. "Does she have grand mal seizures?" Then they look at you like a big feel sorry for me stare. If I had a dime for every time a person asked me this question, I would be writing from my beachside mansion in Hawaii. Grand mal type seizures are the shaking type that you see dramatized on television or in movies. There are other types of seizures: Absence, Myoclonic, Clonic, Tonic Atonic to name a few. Typically Allie has these three different types of seizures. 1. Absence seizures cause a short loss of consciousness (just a few seconds) with few or no symptoms. The patient, most often a child, typically interrupts an activity and stares blankly. These seizures begin and end abruptly and may occur several times a day. Patients are usually not aware that they are having a seizure, except that they may be aware of "losing time." -webmd.com 2. Partial Complex causes impairment of awareness. Automatisms such as lip smacking, chewing, fidgeting, walking and other repetitive, involuntary but coordinated movements. - webmd.com 3. Tonic-Clonic is the newer term for what used to be called a "grand mal" seizure. Tonic means stiffening, and clonic means rhythmic jerking. During the first phase comes the tonic where the muscles stiffen. After comes the clonic phase where legs and arms begin jerking rapidly and rhythmically. EEG's Over the past decade, Allie has had 8 electroencephalograph’s or EEG's. This non-invasive painless test measures the electrical signals in the brain through small electrodes which are glued to the scalp. This simple test is done in the doctor’s office for approximately 20-40 minutes. The trained staff apply the small electrode buttons on the scalp. The doctor will do various tests which include, flashing a strobe light, open and closing eyelids, and fun activities such as blowing a pinwheel fan. The signals are recorded, interpreted and studied by a physician. Allie had four ambulatory EEG’s which is a 24-72 hour continuous EEG recording. The electrodes are glued on for a much longer period of time than a traditional EEG and are mobile to allow us to take it home. All activities are documented during this time span. The more data the physician captures, the better he or she can understand what causes spikes or not. Unfortunately all of her EEG’s, zero seizures were captured we can assume that the antiseizure medications were working well. GLUE REMOVAL After the EEG is complete the technician easily removes all 20 electrodes from the scalp. After, you are sent to their bathroom equipped with a large sink, combs, brushes, hair products, and towels to clean up the hair and scalp. The electrode glue is messy when removing from the hair. It is water soluble and with a lot of patience and rubbing some coconut oil on the glue it does eventually come out. Sometimes shampooing while digging out the glue is more difficult as the white suds hide the glue too much and you will have a hard time finding the glue chunks. Allie has long hair so the entire removal process takes about 20 min. A child with short hair would be quicker and easier. In the comments below tell me about your EEG experiences. |
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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