#2016 was the about the year I was offically diagnosed with ASD

[planefood]

SOME OLD ART FROM 2016

I was snooping through my old socials looking at the art I drew when I was 12 and I figured some of you guys might've been interested in seeing what my art looked like... 8 years ago.

Before you say anything this was the description of these pieces so you're not allowed to judge plz

oh I forgot to mention its pretty much like ALL peridot by the way. Idk why I drew her so inconsistently, I didn't really have a lot of access online back then so I was probably going off my memory?

also this

[cloning-misadventures]

By 2016, I had entered a contest about living with the struggles with ASD, (autism spectrum disorder). Ironically, I had also struggled with Geometry. A few months into the semester, I had struggled with the concept of geometry which did not fare well with my tests. When it came down to doing the assignments, I would forge my understanding of general concepts. We did not get graded on the homework assignments, which was great. As long as we turned them in, then we would be ok on that. Having been diagnosed with dyscalculia, which in definition means mathematical dyslexia.  I struggled with remembering the math concepts. However, the tests were graded. Every friday, I would pray to someone that I would at least earn an A or an C because that meant I would be caught a break. This ended up being my downfall, as my grades turned into Cs into D’s and F’s. Which was unusual if those grades ended up on my english, history, and general arts. 

However dyscalculia, would later impact my music reading skills. This would later cause me to drop out of symphony orchestra  or a symponyettia, later in my junior year. I struggled with reading bars, and measures which has to do with mathematical concepts. 

During this period, It was recommended that I take a tutor, who was an elderly lady who gave me the encouragement to do better. She told me that I could do anything that I put my mind to. This was something that my home ec teacher did not tell me I could do, instead dismissing my ambitions to be an animator. We had to pick a career, in which I picked of being an animator, because I wanted to write my stories. Instead my teacher told me to “pick a realistic career” in which I choose to be a lawyer, or a police officer, something I knew I hated. I choose that career option because my grandmother was a lawyer, my mother was a resource officer, and my father was a police officer.  I had no opportunity to go into law enforcement. Yet, the punk girl with the colored hair went into film school. 

To make matters worse, the trip back, the two boys who had tormented me the entire semester decided to mess with me. I was minding my own business, expecting to come home to my equally disappointed mother, when I felt something behind my back. It was a name tag. I screamed, ‘Stop touching me!” The boys laughed hysterically like jackals, telling me to stop worrying, that it was a joke. Upon telling my teacher this, she responded with “boys will be boys”. Which lead to an angry phone call from my mother. If I recall correctly she gave an ear piercing screech, about how dare you talk like that to my daughter, and how dare you tell her that boys will be boys! Which is a common excuse for people defending donald trump's actions towards women.

My family was well off. But we didn’t have the luxury of buying pastries. Mornings were filled with cereal and toast. Which I suspected that we didn’t have much money. Plus, my younger step-siblings were about in elementary school. I suspect that they weren’t eating as much due to outside forces. 

The first time I noticed the snacks, it was in the Developing opportunities room. In short, it was in the room with three seperate rooms. This was the room in which kids with behavioral issues, were put in. I had been picked on by some of these kids, who were bigger and less emotionally stable then I was. There on the table, was a box filled with brownies. I couldn’t stop staring at them. The brownies, along on the strawberries were glistening like some sort of forbidden treasure. Internally, I licked my chops, thinking that maybe I should have snuck off with the brownies. My tutor made a deal with me, the treats were available after class.

Here’s the problem though, they were intended for the behavioral students ONLY during the day. I had to be sneaky if I wanted to eat some of the convections. Or eat them AFTER school. 

It came to a point where it became unsafe to hangout in the lunchroom. If there’s something I’ve learned, it’s that you don’t make friends outside of class. I would later hang out in the library, and eat lunch there. I would eat in a place where no one would notice me, particularly the librarians.

The plan was this: Sneak into the behavioral classroom, and get some brownies. I had been doing that since what January? Four weeks? I had lost count of how many times I had successfully pulled that off. I hadn’t been suspended, or given a detention in the three years I was in highschool, so that means that I have a clean record. Then I would hide in the library, and draw comics. For the record, I had little idea that drawing comics did not consist of drawing squashed panels in notebook. I made my mad dash from dancing fundamentals to the DO room. 

To quote Dan Dasterdly, I’LL STEAL IT! NO ONE WILL EVER KNOW! 

This turned out to be a bad idea. I walked into the classroom, anticipating to get my free snacks. Once I moved through the system, I walked through my internal instructions. Crash! Opps, i think to myself as I bump into an african american boy. He yells at me. I ignore the angry boy, and help myself to the snacks. There is an angry tap on my shoulder as an elderly lady interrupts my snacking. She asks me if I have an 105 a different plan then I had. I had an IEP. I shook my head, to which she yelled, “Then you shouldn’t be here!” 

I book it. I ran out of the classroom to avoid retribution. I ran out of the hallway as if I were a 19th century french prisoner, being chased for stealing a loaf of bread (and breaking a window pane,) by an equally persistent french french lieutenant. My heart is racing so fast, I can hear my blood rushing through my head like a New York subway. For some reason, none of the DO students are rushing at me at full speed and tackling me like a football quarterback. 

 In my hand is a box filled with desserts. The song one vision, runs in my mind. One god, and one vision. Freddie mercury plays in my mind as I sit down in the library. In my rewards, I found the brownie in my box. Did I deserve the brownie? Was I a horrible person for taking something in a moment? The heat of the moment, I thought to myself, nervously shaking to myself. A flurry of guilt, rushed over me, as I analyzed the brownie in my hand. Did I deserve the brownie after I broke the rule? I asked myself. Was I an awful person for doing something minor?

I had one vision. One goal, and I wanted to eat those brownies. The delicacy of the chocolate crumbs made my mouth water.  My goal was to get those brownies. Besides, in the grand scheme, it wasn’t that bad. Most of those kids were in that classroom because of disciplinary issues. I just gotten a mild scolding. Which in retrospect, I thought to myself as I stuff my face with my sandwich, was pretty minor. 

Did I learn anything?

 Well in the grand scheme of things, the bigger teenagers would learn that I only went after the good stuff, like brownies, cookies, and scones. Days after that, I would receive nothing or smaller quantities of food. This would lead me to come home empty handed. It seemed like a punishment I deserved. What I learned was that I had to make do with the remaining desserts. It would be easy to agonize that the loss of desserts, was a traumatic moment that caused me to be depressed. As my father would say, that huge bag of sweets has enough sugar to sink two battleships. If the worst thing to happen to you is (fill in minor thing) then you’re having a really good day. 

This means to not worry about minor things. This might be a moment of tragedy, but in those months I learned to give something back to my peers, and to my family. I saw the smile of my younger siblings because I gave them a moment to look forward to. By using the leftovers, I had given my family a chance to eat a variety of pastries. By allowing them something to eat, I had in turn had given food selflessly, like the protagonist of les mis. 

My peers had eaten selfishly, but I had given selflessly. By carrying the food, I had acquired exercise by carrying a massive bag of pastries with my brother. I had tired arms, but it was worth it. 

[phawareglobal]

Hollie Satona - phaware® interview 230

Pediatric pulmonary hypertension caregiver, Hollie Satona discusses her son Joelan's PH diagnosis and the challenge of juggling caregiving because three of her four children are impacted by rare disease and special needs.

I'm Hollie Satona and I am the parent and caregiver of my son who is eight years old, Joelan, who has severe pulmonary hypertension.

It's been kind of a whirlwind for JoJo since the day he was born. I didn't know about pulmonary hypertension until about two years ago. I kind of wish I would have known some of the symptoms prior to diagnosis, because I think he could have been diagnosed sooner. He was born with a large VSD and ASD and those were both repaired when he was six months old. He seemed to be a normal kid after those repaired procedures, until he was six years old and decided he wanted to go to T-ball.

At T-ball practice, the first night, he couldn't keep up. His heart was pounding. You could visibly see his murmur, visibly see it. So I'm like something is not right here. I thought maybe one of the holes came back or there is something minor going on. We went to the doctor and he told me I was crazy. He's like oh, he's just overtired from running bases in T-ball. So then the next day, I took him to his family doctor and I had him run up and down the hall and as soon as he stopped and the doctor looked at him, he could see exactly what I was talking about. He was instantly on the phone with the cardiologist. It's been a whirlwind since then.

Once we figured out getting him to the right doctors, the diagnosis was pretty quick. It was the first echocardiogram, the first cardiologist appointment after that we were sent to UW Madison in Wisconsin to do a right-heart catheterization. June 28, 2016, was his confirmed diagnosis. His pressures were over 145 at the catheterization. We got a rough start, a very quick informed theory of what pulmonary hypertension was and the therapies.

It has been a challenge. The one thing I feel, though, is I kind of fight through challenges a lot with our lives. Our families are pretty busy. It was an obstacle that overcomes a busy lifestyle, because pulmonary hypertension definitely puts the brakes on a lot of obstacles that we face. Throughout the diagnosis, there's been quite a few hospital stays and procedures that he's had done and some evaluations just because of the severity of his pressures.

Right now, he's doing wonderful. We finally got everything controlled, but we definitely learned to juggle. It's like a circus, so we definitely are good at juggling between the kids because there are four boys in the family. There is a lot of consideration. We have a lot of good moral support and help with everything in the house. I'm pretty lucky on that side.

Not only does JoJo have pulmonary hypertension, but his older brother has hydrocephalus and epilepsy, and his younger brother has a cognitive disorder and he is on hearing aids. So, between the three out of the four boys, we've been familiar with multitasking for a long time between all of the doctors we see and specialists.

My sister has been really a good support with the caregiver side of things, as well, so she's trained. My oldest son, who's 14, is actually trained to mix the medication and stuff for Joelan. We try to balance everything out. His dad has been more of a moral support because he's not as strong, I think, as myself where, you know, sometimes that scares people. It's too much for some people and it really is. There's a lot that plays into consideration. But the challenges between work, I work full time, as well, as an accountant. And my job and my bosses have been very considerate of the situation. If I have to leave work, there's no question. I can literally drop and go. I work two miles from my house, so it literally takes me two minutes to get to the school, two minutes to get home. The doctor's office, not so much. It's about a two-hour drive.

We've got a lot of responses in place in case of situations, whether it's Airlink ambulance. I am fortunate that one of the first responders is on my staff, so she's literally two steps away from me. So she gets the first call and then she's like, oh, let's go, Holly. But we haven't had that. We've got a lot of structures in place to consider in case something goes wrong.

When JoJo was referred to St. Louis for a transplant evaluation, we were informed about the Pott shunt procedure. That's scary because for pediatrics, it's only been done, at that time, maybe only 12 times in the United States. And his cardiologist, the one thing she told me, she was like, "That's kind of a death wish. Would you really risk your son's life?" And then, for me, I answered, "Isn't he already got one? You just told me he has pulmonary hypertension. You said most chances if he lives over five years." So you feel like you're backed in a corner. So, for me personally, to overcome these obstacles there's two options you have when you're pushed in a corner. You can sit there, cry about it, and do nothing. Or you can push forward and fight for it. And that's definitely how I do and how I handle things.

I've overcome a lot of challenges aside from pulmonary hypertension, but it's definitely made it stronger to move forward with the advances in the medication and therapies, to put trust in someone else's hands for the care of my son.

Do the research. There's a lot of research that is available to do on your own. Don't be afraid to ask questions and definitely don't be afraid to challenge them. There's something much stuff that's coming out new that you may see or hear about and they might not be familiar with those. Always push through and make sure the doctors are allowing you to have that responsibility and respect. I'm really good at double checking everything and that's the one thing you have to do. You protect your child. So questions, never be afraid to ask questions.

I'm Hollie Satona, and I'm aware that I am rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me

Listen and View more on the official phaware™ podcast site