#and the label of 'disordered' gives me something to grasp to without holding onto the symptoms themselves

[gxlden-angels]

I really am just religious trauma wrapped in a trench coat at this point huh?

[zach-the-fox]

Furiends Episode 3: A Bad Idea

A new day has come, and the warthog sits with the cat and blue jay at a small table in a small coffee shop by the name “Pawbucks”. The girls, however, are slouched in their chairs, and have their heads leaning against solid objects as flat-mouthed, half-eyed expressions occupy their faces.

“Ugh, I’m so bored!” Navy exclaims. “What are we supposed to do now?”

“Honestly, I don’t know,” responds Emmy. “Thought it would be a good idea to talk about art, but we constantly see each other’s posts on Furbook.”

“Come on, I’m sure there’s something else to do,” Carly adds. “Maybe we can go to the cartoon festival?” The bird and warthog just look at her. “No? How about-”

“Let’s just get out of here,” Emmy interrupts. She gets out of her seat. “Perhaps, it’ll come to us…” The bird and cat follow without another word. The three exit the coffee shop and walk along the sidewalk.  As they amble down the street, Navy begins a conversation on her interests with a certain character she conjures up. That’s when the pass a display of books in the window pane.

Emmy takes notice of a book on the shelf through the display, forcing her to enter the store. The other girls follow her as she steps toward her target, pulls the book off the shelf, and examines it. The title reads “The Dark Arts for Dummies,” and having a deformed face on the cover. “Interesting…” Emmy opens the book and scans through its contents briefly. “Very interesting…”

Carly stands behind Emmy, glancing over her shoulder to see inside the book. “That book interests you?”

Navy stands and makes her way beside the warthog. “Ooh, a book on dark magic?”

“Looks like it,” Emmy says. “Says everything about how to summon demons and conjure black magic.”

Navy gasps and smiles at the idea. “Oh, can we do this! Please?”

“I don’t know if we should,” Carly adds. “May have some bad outcomes.”

“Or maybe we can raise our very own demon!” Navy utters. “And perhaps wreak havoc on that wolf for taunting Zach.”

“Not sure if that’ll be the case,” utters Emmy. “But you know what, it probably would be a way to kill boredom. Besides, what could go wrong?”

 ***

 Back at the mall, the three girls wander around in search for their items. They split off in different directions as they look around.

Navy picks up a box labeled “dinner candles” on it, taking it for the first item. “These will do.”

“Miss,” calls out a store associate. “We haven’t stocked those yet!” Navy continues walking up to the counter and prepares to pay, leaving the clerk with a look of dismay.

Emmy searches up and down the row of chalkboards, taking the erasers and chalk from the holders. “This will suit our need of chalk dust.” She picks up one eraser, but barely has a grip on it. “Uh oh!” Upon catching it, she hits the chalk boards on either side of her, emitting dust into the air around her. “Oh no…” Emmy’s mouth begins opening wider until, “Achoo!” The dust enters her nose more, causing an uncontrollable sneeze. “I must… achoo! Get out of- Achoo! Here…”

In the floral shop by the corner, Carly looks around for the last item on the list; black rose water. “Hm… If I were rose water, where would I be?” Her eyes are drawn to the bottle on the top shelf near the entrance. “Of course, it’s up there…” She looks around, yet sees no worker in the store. “And no one’s around to help… Guess I’ll just help myself then…” The cat reaches for the bottle, but her paw is only inches away from it. “Hugck! Come on!” She stands on her tippy-toes. “Come on, Carly! You’ve almost got it!” Her paw stretches out more and wraps around the item. “Got it!” Her weight, however, causes the god to lean forward into the shelf. “Uh oh! Whoa!” Carly is knocked into it, causing it to fall over. As the shelf falls, a vase of flower water tips and spills all over her. Carly gets up and sees the damages she’s caused. “Uh, whoops…” She quickly pulls out some cash and leaves it on the counter. “I’ll just be going!” She leaves the scene. “I was never here…”

The girls regroup in the center of the mall.

“All right, everyone got everything from the list?” asks Emmy, rubbing her nose with her finger. The cat and bird nod. “Good. Now, we need a place to perform the ritual.”

“Let’s do it at my place,” says Navy. “We can set up there and-” The bird sniffs the cat. “Hey, why do you smell like fresh roses?”

“Please don’t,” Carly utters. “I need a bath once I get home…”

“You can wash later, when we’ve-” Emmy sniffles. “Oh no… Achoo! Ugh…�� She sneezes again.

“Bless you,” Navy tells her.

“Security!” someone shouts. “Security! Someone has destroyed the flower shop!” As the spectator yells, the girls rush out the entrance.

 ***

 The gang gathers at Navy’s studio apartment, where they set up for their “special event”. Carly draws along the floor, making a pentagram with a marker. Emmy takes sand and proceeds to encircle the pentagram, touching the points with perfection. Lastly, Navy places candles beside the points and lights them.

Carly looks into the picture in the book before viewing the shape in reality. She crosses her arms with a smile of pleasure. “Looks about right.”  

“Yeah,” Navy adds. “And it smells nice, too!”

“Okay, let’s get started.” Emmy picks up the book and holds it in her hooves. “All that’s left is to recite the incantation.”

“Wait!” Carly interrupts. “What if whatever comes out of there tries to kill us?”

“Hm, good point. We should suit up and prepare for the worst.” The three girls rummage around Navy’s place for protective equipment and anything that could be used as a weapon. They manage to find gear and tools, preparing in five minutes. Navy holds a shovel close while donning a knight’s helmet, while Carly protects herself with football helmet, wielding a frying pan for her defense. Emmy’s head is covered with a pumpkin as a baseball bat leans up against her for her weapon. The warthog holds the book up. “Everybody ready?” Navy and Carly stand guard behind Emmy, ready to expect the unexpected. Emmy begins the incantation. “For thou who lives trapped in flame and clay, heed this call, rejoice and pray.” Navy’s wings tremble, shaking the shovel in her grip. “Gather upon thy mortal door.” Carly tightens her grip of her frying pan. “Break the gates, and emerge once more!” The candle flames enlarge, brightening the room as a portal opens within the center of the pentagram. One big, round ball shoots out from the entryway, bouncing off the walls of the apartment. The three girls panic as the frenzy continues.

“Whoa!” Carly dives behind the counters in the kitchen to take cover, lying on the floor. “Jeez! How do you stop this thing?!”

“I don’t know!” Emmy dodges as the flame ball flies past her. “This thing’s out of control! Yipe!” She stumbles onto the ground, avoiding the fire sphere as it nearly collides into her.

“Don’t worry!” Navy holds the shovel firmly. “I’ve got it!” As the ball comes her way, she swings and smacks it away. The sphere of flames smashes through the glass window and outside. “Homerun! Woo!” The orb is last seen barreling down the street, burning lampposts and trees along the way. “Um, uh oh…”

Carly stands and looks out the broken window. “Nice going…”

Emmy is quick to her feet as she heads out the door. “Come on! We have to go after it!”

“Are you crazy?!” the cat utters. Navy is already behind the warthog. “Hey, wait for me!” Carly sprints after them.

 ***

 Meanwhile, on the other side of town, Zach, Niji, Eren, and Silus enjoy some time together in the park. The boys each hold ice cream cones in their paws and chat away as they lick their frozen treats.

“Mmm,” Niji spurts after licking his treat. “I love rainbow-flavored ice cream.”

Zach looks to the short deer, who takes a bite out of his swirl. “Eren, thank you very much… You didn’t have to pay for mine… I could’ve just passed on it.”

“No no,” Eren tells him. “It’s fine. Besides, it would’ve been fair if you were left out. You’re our friend after all.”

“Nobody ever thought it was unfair when they left me out of things, the orphanage and Team Rescuers especially…” Zach’s ears start to droop.

“They’re just dumb,” Niji adds in. “The whole town, too. Just because you’re different, doesn’t give them the right to push you out of things. So what if you are the product of some bad animals or have a mental disorder? You look and act normal to us.”

Zach’s eyelids open wide as his ears straighten. “R-really? You think so, Niji?”

“We all do,” Silus implies. “They just don’t know what it’s like to be different. You shouldn’t let people talk you down because they say you have “flaws”. In fact, you shouldn’t assess yourself for your flaws, but of your strengths; the things that make you proud of who you are, no matter what anybody things.”

“Gee, I-” The fox pauses, then turns his head after spotting something glowing in the corner of his eye. “W-what? What is that?” Everyone turns to see where he’s looking. “It looks like a giant-” Zach’s eyelids pull back as far as they can go as he notices a large fireball heading straight for him and his friends. “Holy!” Silus is quick with his reflexes, grabbing the fox, wolf, and deer with his arms and pulling them away to avoid the flames. However, as the ball of flames whooshes past, it manages to touch Zach on his torso, Eren by his shoulder, and Niji on his head, as well as the newt’s arms that grasp the three. The four boys collapse to the ground and scatter as they grudge at their burns, grunting and yelping with pain. The fire sphere then disappears from view, leaving the friends clueless.

Emmy arrives on scene with Navy and Carly beside her. “I think this is where it-” She notices the boys. “Oh my gosh! Niji, Eren, Silus, Zach!” She and the girls aide the four friends to their feet. “You guys okay?!”

“What happened?” asks Carly. “You’ve got burns!”

“Yeah, no kidding!” Niji shouts. “No thanks to that giant fireball that passed by!”

“Wait, you know where the fireball went?!” Navy utters. “Where did it go?!” She searches around frantically. “Is it around here?!”

“Navy, now’s not the time!” Carly calls to her. “We have to help our friends!”

“We don’t even know what’s happening,” grunts Zach. “We were having ice cream when that flaming ball came out of nowhere… Oh, it hurts!”

Eren looks up at the girls. “Um, why are you wearing those outfits?”

“We’ll explain later,” Emmy says. “Why don’t we head back to Navy’s place and get you guys some ice?” The friends agree. The boys stand with ease due to their injuries and follow the girls back. @carlycmarathecat​ @emmy-the-absolute-goof​ @pink-unicorn-blood​ @rainbow-strike​ @ask-choro-mama​

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 12 Prompt: Nurses and Doctors)

I have already covered much of this topic in previous posts so it's no secret that I have very little trust in the medical field. Of well over 200 doctors I have interacted with through both specialists, medical clinics, urgent care and hospitals there is only one that I have total trust in. Yes on and only one doctor who I trust with my life. I used to have more trust in doctors and used to have the mindset that I trust them until they give me a reason not to trust them because most kids are raised to believe that doctors and nurses are the good guys/girls I had my first experience that I remember with a medical professional at the age of five and they just kept adding up.

Layer after layer of abuse and neglect, four times being dead on their time and three times being so sick my blood pressure registered as clinically dead even though my heart continued to beat and all but one of these times I was not treated by medical personnel, once being revived by my mom in a hospital full of doctors and nurses ignoring my alarms. I have been released multiple times even up to the point of needing ICU level care with psychosomatic disorder labels slapped on me they didn't want to put the work into saving me. My uncle has died at the hands of the medical system from this disease and my mom defied the odds with only a 5% chance of survival rate and more time than I care to think about in a coma and in ICU as a result of a doctor who didn't know what he was doing and botched her surgery then both abused and neglected her for 9 hours after his mistake while trying to hide it so he wouldn’t get caught.

I don’t only have experience as a patient in the medical field but also as a nurse myself. I can't tell you how many times I heard students say they weren't going to do certain procedures because they were gross or uncomfortable like changing a colonoscopy bag acting as if the patient is gross because they have a medical condition that results in something that they believe is unpleasant or undesirable. How do they think the patient with the colostomy bag feels without their nurse making them feel gross, ugly or undesirable. I worked as an STNA where I was raped by my boss. I worked as an LPN at a long term care facility for children with severe to profound developmental delays and complex physical health conditions.

The state recommends no more than four patients be assigned to one nurse and no more than two patients to one nurse in a critical care setting. These patients were total care and at the most I was assigned 17 patients. 17 when there was only one of me and to give you an idea of what total care entities, All 17 were in diapers and needed changing every two hours, with one being on a toileting program meaning every morning she had to be put onto the toilet and strapped onto it with a harness since she had little control of her body and prone to falling off. We were to leave her on the toilet for 15 minutes or until she went to the bathroom and were not allowed to leave her room until she was done. The bathroom connected to two rooms and there were usually three kids in each room with the bathroom being between both of them so shared by six kids. We were not allowed to leave her alone on the toilet but could leave the bathroom itself if we left the door open so we could hear her so we could go into one of the rooms attached to it and change another kids diaper or change bedding but other than that we could not go any further until she was done. She was diapered the rest of the day unless you had more time to work with her later in the day so only did her toileting routine a minimum of once for morning shift and once for night shift. All children needed their bedding changed daily, they all needed a bath every day, clothes changed, hair done, teeth brushed, and some of the older guys we would shave their face if their family wanted us to. 15 of the 17 were tube fed or on TPN so I had to hook up their feeds. The other two, one ate solid food and the other was on a puree diet. They did not eat in their rooms and had to be taken to a group room with a table where we had to allow them a minimum of a half hour to eat. If they refused food we had to try to offer it for at least a half hour. One of the two needed feeding and the other was much more high functioning than the others on the unit so could feed himself, you just had to remind him to eat if he got distracted. All of them had medications, some up to six times a day. None could walk so they all needed picked up and put into their chairs and into their beds, one could craw and if we let her crawl we put knee pads on her knees so she didn't hurt her knees, one could walk using a gait trainer which is basically like a baby walker but bigger, where the strap goes between their legs so they don't have to hold their weight but can push with their feet to slide the walker. 14 of then needed turned every two hours to prevent pressure ulcers, one had a colostomy bag, one had a tracheostomy. They all needed rectal temps daily, They all had to go to the rec room and get some time on the matts daily, 14 of them had physical therapy which we were responsible for except once a week when a therapist worked with them

Therapy for 10 of them dealt with button training where a button as connected to a toy, TV, radio etc. and they had to press the button with their hand or head to get the TV to change or toy to light up or play music and what not. They did their therapy until either they pressed the button on their own ten times or a half hour had passed, whichever came first. One would get in her walker and needed us to guide her to take at least one lap around the unit in her walker, the other did the toileting program and we worked with her on using a modified form and spoon to eat herself, 6 of them did sucker therapy which essentially we would hold a sucker for them to lick in hopes to improve their swallowing skills and build up their saliva so hopefully one day they could get off the feeding tube or be less reliant on it, able to eat some puree or possibly one day solid foods. One we worked with his fine motor skills to have him pick things up but he was easy when it came to this because we could do it throughout the day so if I was changing him I could ask him to hold the clean diaper for me or a wipe or two and while I gave him a bath I could have him hold his tooth brush or comb or his deodorant so that I could combine with a lot of other routines but it helped him with both being able to grasp things and to learn to release his grasp at appropriate times.

11 of them worked on eye gaze to relay their needs so instead of just grabbing clothes and putting them on them we had to pick out at least two shirts, two pairs of pants, two pairs of socks etc. and ask them which one they wanted to work on eye gaze for them to tell us which they wanted. The highest functioning one was learning to use a power chair at the time so we had to follow him with a kill switch and joystick so we could make sure he didn’t run into anything or if we needed to turn the chair so he didn't hit the wall etc. he was also working on menu training where we could give him a picture menu for him to choose what he wanted for his next meal starting with two options for a main dish, like chicken nuggets or mac and cheese, two options for a side dish like cheese slices or apple sauce, two options for a second side like green beans or corn and two options for a dessert such as chips which were more like cheese puffs in different flavors or a cup of ice cream and eventually add more and more options Two of them were labeled as combative which I never had an issue with even once as I also majored in interpreting and learned very quickly that one was combative because he was the only one who could talk but some had trouble understanding him so he got frustrated kind of like a child in their terrible twos who is frustrated because people may not understand their speech, the other was deaf blind and no one worked with her on any kind of sign language or gesturing. As you can see, this is way way too much for one person to take care of.

Now to make things worse, I felt as if I was the only nurse who had any ethics. I felt horrible for these kids because they basically just sat them in front of a tv all day. They had an accessible playground outside which I had never once seen used because they hired so few staff that you didn't have extra time. We had four nurses on our unit which had, if I remember right 23 kids in our unit which doesn't sound too bad but we rotated days off with one weekend off a year so only three people were there at any given time. When someone took a week off we had two of us. Some went to day programs so during the week we usually had around six to 8 residents. On holidays such as the day I had 17 kids I was the only one and there. Two of them took Easter off and one already had that day already off and the boss let this happen. 6 of the kids, their parents took out day passes and took them home for Easter thankfully because I don't know what I would have done with another six kids.

This being said they didn't hire enough people so if someone from another unit called off they would take someone from another unit. The unit I worked on had the most severe children. There were other units that had the ones with moderate disabilities so could do things like brush their teeth, sit up, feed them self and just needed care like bathing, transferring them into their chairs, making sure they didn't get in trouble or fight with other kids, change their diapers or help them change their own or help them toilet themselves or care for catheters so they were a lot easier. There was another unit where most of the kids only had mild delays and basically just needed the staff to work with them on daily living skills like cooking and making sure they shut off the stove, go for walks with them to make sure they didn't get lost or walk up to strangers etc. they had another unit that was all babies two and under so though some of them had pretty advanced delays its a lot easier to pick up or change a 2 year old's diaper than it is a 19 year old's diet. Staff was an issue.

Now for lazy staff. I felt like the only one who actually worked and took a lot of the kids under my wing even if they weren't mine. When the “nurses just play cards thing” came out on tv I couldn't help but laugh because we had one nurse in charge of the most critical patient on the ward. He had no brain and only a brain stem. With a brain stem only your most basic body functions are controlled like breathing, heart rate, kidney function to produce urine and heating and cooling. You can't make pictures of images seen by your eyes so it’s pure darkness, you can't make meaning of sounds you hear so pure silence, cannot register a sense of touch or feeling, no voluntary movements etc. This being said he was hooked to monitors that were linked to a pager to alert his nurse to know if he stopped breathing or his heart stopped and you would need to rush in and do a sternum rub or sometimes CPR on him. This would happen anywhere from a few times a week to on and off all day. He literally would die over and over and over again so we had to be quick to revive him each time.

His nurse was notorious for taking off her pager and laying it in his bed, on his night stand, at one of the computer kiosks for logging, in the rec room etc. and then just going off and playing cards with another staff member. His door had a light and alarm too but it was really quiet which was a big reason the nurse had a pager. If they were busy changing another kid or something, they could yell for someone else because yelling was even louder than the door chime but she did this so much, I got to be like a new mother with a newborn baby where I could hear the ding of his light from a mile away because I knew if I didn't revive him she sure as heck wouldn't we had a room with three boys in it, an 8 year old, a 10 year old and an 11 year old. They were non verbal and there were two nurses who would run into that room and drop their pants and moon each other.

Most of the staff would skip bathing kids for sometimes days on end and just mark it on their charts that they had been bathed. This was especially so for the kids whose families lived out of state or kids who were property of the state and had little to no visitors. These kids were neglected to the fullest. Left in dirty diapers, had physical therapy skipped, were not rolled as much as they should be including one that got MRSA. If one of their family members showed up unexpectedly it would be like all hands on deck, they would call all of the nurses to their room while the receptionist lied to the parents saying they were in therapy or still in the bath or something and have two nurses yanking their clothes off throwing them in the tub to try to scrub them down one getting their clothes and changing their bedding changed, room cleaned, aids in there with mops mopping the floor and cleaning up the other kids in the room, changing their diapers, washing their faces and doing their hair, opening curtains, organizing stuff that's laying all over the place all in about ten minutes flat to try to make it look like their kid was taken care of the whole time. It was called “all men on deck” when this happened, they would even call people from other units for this so it's like we magically went from no staff to a ton of staff for ten minutes only.

The same thing happened when they got a call from the health inspectors. All blankets got pulled out of the closet because they weren't allowed in the closet with sterile items, no one was allowed to take off but they took half the staff and assigned them to cleaning, moving meds to the appropriate storage area, removing cleaning chemicals from the same area as the fluids and cartons of ensure and tube feed. They had so many violations it wasn't funny but knew exactly what needed fixed or removed before the health department and medical board visits. They had extra stuff they shoved in staff members' trunks of their car, in offices and all kinds of hiding spots then would just move it all back after they passed and it was over. I don't know why they never came unannounced. The nurse who used to leave her pager laying around didn't like me at all and would go into my kids rooms after I walked out and drop the bed rails on my kids beds to try to get me fired.

During my training they put me with a resident who was very sick. She had what they thought was the flu. She had a trach so couldn't control her cough which came right out of her tracheostomy, really bad diarrhea, a fever most of the first week I was there, the whole nine yards of being sick. Well after training I got sick but they had a one month probationary period in which you were not allowed to miss any days in that time and they said if you were sick you had to be checked out by one of the NP’s who would take your temperature and assess you to determine if you are healthy enough to work or not and only if they determined you were too sick were you allowed to take off during your probationary period. Well I got worse and worse and ended up developing pneumonia. So like her was hacking up a lung. I woke up with a temp of 103 and by the time I got to work my temp was 103.8.

I saw the NP and showed her the paperwork from urgent care where I had been diagnosed with pneumonia and stated my concern about spreading it to my kids who were all immunocompromised and high risk. The NP said I would be fine and told me to just wear a mask. I put on a mask and went to work. They gave me a ton of kids that day too, I want to say I had 12 that day so I was running around like a chicken with my head cut off, getting dizzy spells and I could feel my fever exploding. I could feel sweat running down my back and chest and kept having to wipe the sweat off from my face. I literally felt like I was going to fall over and die running around, lifting teenagers, and rushing around to try to keep up which was nearly impossible because of short staff anyhow. Well I started overheating and coughing so badly that I had to take off to a bathroom in the hall and started throwing up and was struggling to breathe from all of the mucus and feeling like my airway and sore throat was swollen up and totally full of mucus. My boss came in while I was throwing up and said “why aren't you out there doing your job. Of course I’m there in the stall hanging over the toilet with all the sound effects of my vomiting, coughing and wheezing and told her I was sorry but I have pneumonia and got too hot. She said “well you need to come out here and do your job and throw up on your own time” Yes she told me to throw up on my own time. I said what because I was throwing up and thought I misunderstood her and she said “I need you to throw up on your own time” like you can control something like that and as if they hadn’t trained me on a patient who was sick and very contagious earlier that month. She told me if I didn't get out there then she would be writing me up and if you get a writeup during your probation time you will lose your job; then she left.

About two minutes later I got to a point where I thought I may be able to make a run for the supply closet which was right across from the bathroom, ran over there and grabbed some of their mini garbage bags that go into the little feminine care product trash cans and spent the rest of the day, working and running around the corner into the patients bathrooms to throw up in the bags and throwing them into the hazmat containers. I felt terrible with my patients having to listen to me throwing up right beside them but the boss wouldn't let me go to the bathroom or go home saying I wasn't too sick to take off even throwing up about 15 more times throughout the day and so dizzy I had no idea how I didn't pass out in front of any of my kids. When I went home that day, I took my temperature and it was 105.2. And that was with taking fever reducing medication while at work. After lying down a while it went down to 104.8 and I had the next two days off thankfully but by the next morning I was in the hospital passing out over and over again, having trouble breathing and under rapid cooling protocol having cool IV fluids pumped into me, wet towels put on me, ice packs layered around me benign told by the staff that any job that makes you work when you're that sick isn't worth keeping and how they would have just walked out.

I still hadn't been there long, almost three months, when I went to the linen closet with the towels, wash cloths, chux etc. and it was totally empty except for one wash cloth so I went to the manager filling in for mine who was on maternity lead and told her the linen closet needed restocked. They never told me what to do in this situation so I didn't know if we had a number to call down to laundry for them to bring it up, had to send an aid down to bring up a cart of clean linen to restock the closet or it was our responsibility to go down and get a cart full of clean linen and stock the closet. There was no list of phone numbers by the phone or anything because I checked before I asked the manager and when I asked she was in the rec room full of children with intellectual and physical disabilities. I told her the closet needed restocked and asked if there's a number I need to call for more, if I go get it or how that works telling her no one had told me how this works when I started. She looked at me like I was a total idiot and said “I see we have another retard in here as if we don't already have enough!” right in front of those kids. Enough was enough at that point and at the end of the day I said I wasn’t coming back.

I bawled my eyes out having to leave that job because those kids became like your kids and the care they got was god awful. They deserved a lot more than lying in a bed in front of a tiny tv all day. The other nurses didn't even meet their most basic needs leaving them in overflowing diapers, I can't tell you how many mornings I walked in after second shift left to find dirty diapers laying in the kids beds including one that my residents knee was laying in because they couldn't even throw away a dirty diaper. Basic needs like personal care, rolling them and the needs to sustain life and keep them safe weren't even met but kids have many more needs than just those most basic ones.

There was a playground that was never once used. They had no volunteers or staff to take them out of their rooms for a walk, to take them to the play room and actually play with them, hold crayons in their hands and help them color or finger-paint with non toxic or edible finger paints, do things with the teens that most teens take for granted like painting their nails, reading them books, bringing around therapy animals or even having an in house therapy animal. They just left them in their beds or laying on the floor on a mattress pretty much all day and all night which isn't a way for a child to live regardless of their cognitive function. That job took everything I had to give and gave me almost a try to save the world mindset because I wanted these kids to have the lives they deserved.

There was even one of the kids labeled as combative who was deaf/blind who I really connected with who I looked into adopting. The other staff couldn't stand her, literally ripping through her hair, yanking her neck back, forcefully ripping her hands off of them, basically tossing her into her chair. Some of these nurses were physically abusive with her because she was basically just really grabby and it made them mad. I realized the actual problem is that she was Deaf/Blind and they would literally just grab her and do whatever they wanted to. She was scared. She didn't know who was grabbing her or what they were doing so would grab for the hands and face to try to figure out who had a hold of her. Everyone used to ask me why she wasn't grabby with me yet no one took my advice. I told them they had to let her know who they were and what they were doing. Let her touch their face and hands to know who was there and touch is totally normal. It was just grabbing because she would be in a panic but she would be very gentle if you took things a little slower and gave her a chance. I would go into her room and instead of just yanking her up out of bed, I would tap her on the arm or sometimes just sit down on her bed and she would feel the movement and move her hands around to try to find it so I would put my hand by one of her hands so she grabbed my fingers then move her fingers toward my face so she could find my face and feel it. A lot of the staff thought it was gross because she put her fingers in her mouth but we knew her medical break down and a little spit wasn't going to kill anyone. That's what baby wipes are for but I would let her feel my face so she knew who I was and she would calm down once she realized it was me.

If I was going to put her in her wheelchair I would tactile sign the word chair then pull her chair up to her bed and guide her hand over to it and put it on the wheels so she could feel it. If I picked her up, I would put my arms under her like I was going to pick her up but not actually lift her for about three seconds so she got used to knowing if I slid my hand behind her back and under her legs that I was about to pick her up and put her in her chair which she had already felt. If she needed a bath most of the staff threw her clothes in the bathroom and got the water going and stuff. Then yank her up and carry her in the bathroom with her having no idea what was going on. I would first put her in her chair and take her in her chair into the bathroom because once I put her in her chair and signed a bath I could get her clothes and diaper and such and sit it on her lap so she could feel them and realize that she was about to change clothes or take a bath. I would then wheel her into the bathroom and the tub had a sprayer and it was a wet room so if you got the floor wet it had a drain and didn't hurt anything. I would take her clothes from her and set them on the counter and then turn on the water to the right temperature and bring the sprayer down. If I touched her hand she would usually grab my fingers and I would pull her arm out to the side and put her hand under the water so she could feel it with her hand and knew she was going to take a bath. I put the hose in the tub basin and signed the bath again. Put my hand behind her back and under her knees again giving her a second for it to register that I was going to pick her up again, lift her and put her in the tub which was basically like lounge chair, take her clothes off starting slowly with her socks instead of a large piece of clothing that was more shocking then after taking her socks off moved to the larger pieces of clothing. When I went to spray her to get her wet I again put her hand under the water and then moved the sprayer slowly up her arm so she knew she was going to get wet, bathed her and dressed her.

If I changed her I would sign the diaper and give her the diaper to hold before taking her pants off or anything so she knew she was going to get a diaper change. Once I took off her pants, before removing her diaper I would get one baby wipe and put it in her other hand so when I took the diaper off she knew when I took the wipe away from her that she was about to feel the cool whip. If I did her hair, I would give her a comb and brush to hold and would take whatever one I needed at the time out of her hand and to make things easier, I actually taught myself how to French braid on her hair because French braiding it kept it from getting tangled and matted so combing out her hair wouldn't be so traumatic for her, especially when another staff member had her but she was really a very easy and laid back kid just very much misunderstood which is why I requested her as my permanent. I actually took the two kids on the unit that no one wanted and they were both great kids and I just don't understand how a medical facility can operate with such ignorance. So though it was hard to leave I feel like I made the best decision. When I left I called Children's Services, Our county's Department of Developmental Disabilities, The Medical Board and the Health Department hoping that even though I had to leave, the lives of those children would improve.

I have had many negative experiences with other medical workers both as a patient and as a nurse. There are so many unethical, abusive and neglectful medical personnel so I no longer live by the mindset that all medical personnel is good unless they prove otherwise, realizing just how rare good doctors, nurses and other medical personnel are to come by and now believe that they are all bad and have zero trust in them unless they can prove otherwise. It's very difficult and takes a very long time for medical personnel to gain my trust. I’ve had this trust for too many in the past who let me down so now that trust has to be gained over a long period of time. As I mentioned before, I have one doctor I have trust in and his name is Dr. Joseph. It took him almost two years to gain that trust and this is a doctor I see every two weeks so I have seen him more in two years than I see most doctors in ten years if this puts into perspective how long it takes to trust a doctor. Trust isn't something a lot of EDS patients have in the medical field but many have experiences similar to mine so it’s easy to understand why.