#how am i supposed to watch my little cousin with adhd and autism lose his iep

[fandom-blackhole]

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[hellyeahtrickster]

It occurs to me that I have friends here that I don't have contact with in other spheres, so ... life update: my mother passed away unexpectedly last Friday. I'm doing as well as one would expect. Been going through her things as both a walk down memory lane and a goodbye. I keep coming across things she never got around to using, and it hits hard that now, she'll never have the chance. And I can't stop thinking of the stories we watched together that now she won't know the ending to, or shows I wanted to try with her. And then there's all the things we used to do together on the regular -- all the places I can never go with her to again. And all the places we wanted to go to "someday", but now she never will.

We were two weeks out from our second COVID shots, and 4 weeks from being totally vaccinated. We were finally going to get back to EPCOT, to see the Flower and Garden show. Finally going to get back to the Florida Mall. Going out to lunch. That I won't be doing this things with her anymore ... it's unfathomable. I can't wrap my head around it.

Thanks, anti-mask / anti-vaccine Covidiots, for prolonging the presence of this pandemic -- basically stealing the last year of my mother's life. She was anxious to see her elderly mother again, because we don't know how long *she* has left ... and now she never go to see her mother again. I knew losing my mom would happen someday, but my mother was relatively young yet, so I thought it would be a while ....

It doesn't help that she died after the second night on a new bed. See, she slept on her side all the time, what with the couch being narrow, but with a twin mattress, the bed was much wider. She snored a lot -- I highly suspect she had sleep apnea. When I found her the next morning, she was on her BACK. The doctor agreed that her cardiac arrest could have been caused by sleep apnea. In trying to make my mom more comfortable .... Yeah, I know, it's not my fault, but I cannot shake that thought away, that she's not here anymore because we tried to do something nice for her. How cruel the humour of the universe can be.

(I'd put the rest of this behind a cut, but I don't see that option anymore? Sorry!!)

And it REALLY doesn't help that, not only have I lost the person I was closest to, but now I am stuck alone with the person I least want to be with: my dad. I'm pretty liberal, and he's pretty conservative. We fight a LOT. We haven't really since mom died (things got a little tense here and there, but not like we usually are) ... but I know it won't last. It can't -- not when he believes BLM are terrorists, or that gays have an agenda. And now he keeps wanting to do things with me, like watch my shows, and a petulant part of me is like, no, this is mom's territory -- stay out. I don't want to do anything with him. (Especially since I know he'll start ranting once the shows start talking about racism and homophobia.)

My parents always had a volatile relationship. Mom didn't know you could get pregnant the first time, and when she found out she was pregnant, her Catholic family bullied her into marrying him.* And he cheated on her at LEAST once (with a girl who was only a few years older than me at the time -- I was 15, she was 19, he was 33). My mother was far from perfect, so I don't blame all the marital problems on him. But my point is they were married "in name only" for about the last 25 years, so it's ... offensive to me now that he would dare to act bereaved.

I know he can be hella manipulative, make himself seem generous so as to be loved, and then turn on you like a viper, getting irrationally angry. I can't drive, we live in a very rural area with no public trans, there are no friends or fam less than an hour away, I've had next to no job for the last 17 years, I barely feel like a functional human being (am coming to seriously suspect I have ADHD and Dyscalculia; I have diabetes and suspect have PCOS and a thyroid problem; all these things having strong interconnections; and I have no insurance, nor do I qualify for aid, thanks to living in Florida), and I feel utterly trapped. There's a reason Rapunzel is my fave princess. I've had bad experiences with cabs, so using Uber / Lyft kind of terrifies me. Plus, he'd want to know where I'm going, and likely either insist on coming too, or insist I can't go, because his house, his money, his rules. The ONLY time each year I get away is when I go to Dragon Con (and I'm worried he might forbid that in the future -- he has once before).

And then there's the problem of ... he has no one. As much as I can't stand him, he lost his job because of COVID, he's lost his wife, he has no real friends (total homebody), and like it or not, he has supported me financially for so long. Even if someone else were to take me in, or I can get a job and save to leave ... how can I leave him (a person with severe rheumatoid arthritis / in not-great health)? I owe him too damn much, and I feel like it would be entirely callous of me. Yes, I realise that that's the abuse talking, but ... it's also true?

Anyway, I feel like I'm on Sliders, and keep stepping into progressively worse timelines.

* Let me mention that I have long suspected my mother is -- was -- on the autism spectrum, but when I mentioned it to one of her sisters, the sister seemed skeptical, saying that if anything, mom had a penchant for reading out loud, so they thought maybe she had a reading disability, and took her to a specialist, but "that's it". (Mom was in "remedial" classes through high school, so it doesn't sound like they did enough -- and maybe couldn't because the science just wasn't there.) I explained that mom frequently seemed to have trouble grasping concepts, especially humour. Like when a radio ad featured someone reciting a love-letter to a tomato, she was all, "That's stupid -- tomatoes can't read!" Try as I might, I could not get her to understand that the love letter was a playful way to tell US about what makes the tomato so good.)

Anyway, when I talked to my grandmother recently, she said that my mom "always had a special way of looking at things," and that she guessed mom was "what do they call it -- neuro-something? 'Aspie'? High-functioning, but still." And I told my cousin about it, and he said, "Wait, I thought it was common knowledge in our family that your mom was autistic?" (Note: we have other, officially diagnosed family members who are on different areas of the spectrum.) People always commented when I was growing up that it was like my mom's role and mine was reversed -- like I was the parent, and she was the child.

But to think my family had *recognised* that something was up, and left me, a child, to deal with it on my own?? To think they *pressured* someone who was "special" into having a child?

I know my mom loved me, but my whole life, she said she wished I'd never been born, and so she'd never have married my dad -- I know both can be true, that she loved me but wished she'd never had me (she'd have never known what she was missing). She only survived her marriage because I was there; I've always felt she'd have had a better life if she hadn't married him. When she tried to leave him, her mother would not take her in, because divorce was against her mother's Catholic beliefs (never mind that my uncle divorced twice)

I loved my mother, but were fought a lot, and she frequently exasperated me as we struggled to communicate. She frequently left words out, but did not believe that she did; when we met her last PCP the first time, he looked at me and said, "Is she always like this, or is she having a stroke?" And she would always angrily proclaim that I wasn't listening, when most of the time, it's that I couldn't get her to understand that she was working from a misconception or misunderstanding in the first place, because she would focus on ONE THING, to the exclusion of all else.

An example of an exchange (copied from a letter I wrote to a friend): We got into a weird argument yesterday. She had asked me for pain reliever, a glass of tap water (you're supposed to drink a full glass of water with the pills), and a "cold water" from the fridge (it's too cold to drink it all at once, but we both prefer ice water in general). Later, I was picking stuff up from her table-tray, including a bottle of pain reliever, and put a bunch of stuff away. When I passed by again, she asked for more cold water. I happened to look as see that she had the tap water glass still full, even though she had asked tor it half an hour before. I asked if I needed to bring the pain pill bottle back, because she hadn't drunk the tap water yet -- had I taken the pill bottle too soon, or had she forgotten to drink the water? She was all, "no, I said I need COLD water!" I said I knew that, and I would bring it; I was just asking of she had taken her pills already, or if I needed to bring the pill bottle back too. Her (again): "I said I need COLD WATER!" Me: "I know, and I will bring that -- I just want to know why you haven't drunk the tap water yet? Did you take your pills?" Her: "No, I'll take them at bed!" Me: "So I should bring back the pill bottle? Did I put it away too early?" Her: "YOU DON'T LISTEN! I SAID I NEED COLD WATER!" Me: "And I said I will bring that -- I'm just asking if you also need your pain pills?" Her: "You already took the bottle!! Did you forget that already?"

And then I finally spotted the white pain pills on the napkin under the tap-water glass, so I knew that no, I didn't need to bring it. But it's a frequent struggle to figure out how to phrase questions so I get the answer I need -- nearly every time, I get her screaming at me that I don't listen.

She loved me, but she was never mothering. She hated to be touched, so never hugged me; I was pretty touch-starved. I learned to read because she was a very slow reader when reading me stories; I got impatient and learned to do it for myself. She couldn't help me with my homework. She resented having to take me to school recitals and science fairs. She wasn't someone I could get advice from. I admit I was often envious of characters who had physically-loving, compassionate, wise mother-figures (who weren't so binary about morality -- and so weren't always screaming that this or that character should die, no matter how small the transgression).

But I wish she were still here to frustrate me -- that's so much better than not having her at all. And I wish I had been better at keeping my temper.

She was an atheist, and firm in that belief. Maybe she's right, or maybe her firm belief is affecting me, because I would dream frequently about others I have loved and lost, and swear I feel them, but with her ... nothing. Just a gaping hole in the fabric of my waking life, threatening to suck all the light and hope into it.

[rebelscum-2187]

So after nearly 22 years of life on this planet, I’ve come to the conclusion that I am high functioning autistic. I believe I fell through the cracks of an early diagnosis for the following reasons:

1.) I am Female (I learned how to mask myself very early on)

2.) I have a gifted IQ (above 130) and was classified as such in 4th grade so no one considered that I could be both ASD and intellectually gifted.

I am in the beginning stages of unmasking and am currently seeking an official diagnosis. Right now, I’m trying to write down everything I know about my neurodivergent experience so here’s a list of things I’ve experienced and believe to be relevant. If you can relate or you understand please comment and share! I’m new to this community and it feels so good to finally meet people who understand and can relate. Ok, Here we go.

“So the general population doesn’t memorize scripts to movies or watch the same one every day for a year?”

“People think it’s weird that I prefer to have subtitles on when I watch stuff, even though I don’t have damaged hearing”

“I watch movies with subtitles because I won’t understand what’s said if I don’t read it. I have no hearing issues.”

“I cannot hear/understand someone if I have one ear bud in and one out. Too much sensory input at once.”

“I thought I had a hearing deficit because I literally could not understand people at church or parties or other places with a lot of background noise, and I was so confused when they told me my hearing was normal.”

“I love star wars. Not just love but I could tell you what planet each character is from and what kind of ship they use, what model droid that one is and I will gladly talk about it all day if you let me. Everyone now gets me Star Wars stuff for my birthday and holidays”

“Eye contact is so uncomfortable for me that sometimes it ‘burns’ to maintain it, but then I overcompensate and stare too intensely. Over the years, being female, I’ve forced myself to make eye contact for a certain number of seconds and then look away a certain number of seconds but I’m concentrating so hard on that, that I don’t remember anything that was said to me.”

“Giving me verbal directions is a special kind of hell. I need it written down.”

“I can memorize pictures of things and exactly where every kid sat in my 10th grade US history class as well as my 9th grade geometry class.”

“I never fit in anywhere, in my childhood, most of my adolescence, except the swim team and my new church.”

“Team sports are the worst. I can’t communicate fast enough, I’m bad with hand eye coordination and keeping track of a ball. I excelled in individual sports and fell in love with swimming.”

“I often found it much easier to make friends with older kids because I could have intelligent conversations with them and their good social skills could make up for my lack of social skills.”

“But, I had a few friends that were considerably younger who I could still play imaginatively with dolls when I was 13 and one particular friend was 9. I had a lot of trouble getting a long with her sister who was the same age as me.”

“It physically pains me to hear someone mispronounce a word, spell something wrong, or make a grammatical mistake. I corrected my cousin A LOT when we were kids, she frequently got mad and I couldn’t understand why. My grandma would tell me to stop because correcting people is rude.”

“One of my special interests as a kid was dolphins. I was 5-6 years old and I remember being so excited when my mom let me check out like 10 books from the library and I read them quickly and multiple times.”

“I corrected a teacher one time about dolphins. She said dolphins weren’t whales and I knew FOR A FACT that ‘dolphins were a type of small whale’ because I read it in one of my books. She laughed at me and so did the rest of the class and I felt stupid even though I was right. This led to me suppressing my knowledge and real self and ultimately more masking.”

“As per that last one, my memory is impeccable.”

“I had another special interest in dogs when I got a bit older. My mom bought me a book with every kind of breed of dog, where they came from, their temperament, their size, everything. I can still, to this day, tell you the breed of dog just by looking at it.”

“I always wanted a best friend but never had one. I had groups of friends but never someone who would call me their best friend. When I got a boyfriend in high school, I was so excited because he called me his best friend and he was mine and I finally had that feeling reciprocated. He also had a gifted IQ and dyslexia, ADHD and a few other things so we understood each other quite well.”

“I can’t tell if someone is flirting with me because I can’t read between the lines. I also don’t know how to flirt because if I like a guy too much I get soooo nervous and I stumble over my words and it’s a disaster.”

“When I liked this guy (last year, 2019) I would freeze up so bad when I talked to him that I rehearsed every conversation I wanted to have with him so I wouldn’t mess it up. I would write topics in the notes section of my phone before hanging out with him so I’d remember what to ask him. It made for very awkward and forced conversations and probably drove him away.”

“Sarcasm and jokes almost always go over my head. The boyfriend I had in high school was very funny and outgoing but used a lot of sarcasm and it always caused disagreements because I took him seriously when he was being sarcastic.”

“I talk slowly and very monotone.”

“I have no difficulty reading in my head and can read/comprehend it well, but reading aloud is difficult and I often stumble over words and mess up.”

“I need directions repeated multiple times before I understand.”

“I went to the beach to hang out with some church friends yesterday. They all play spike ball and are so confused as to why I sit there and don’t play. I’ve tried playing spike ball but it involves way too much hand eye coordination and I’m so bad at it that it’s embarrassing. So I don’t play.”

“That same night, a group of them said ‘let’s play uno!’ And I was so happy to play something familiar that didn’t involve a lot of coordination. Then they said ‘we’re playing SPICY uno, right?’ And immediately my heart sank because I knew they were playing a different way that I wasn’t familiar with. Again, receiving verbal directions was hell and I didn’t understand it. I was so bad at it and wasn’t getting it, and in the middle of the game I had the urge to cry. I wanted to cry because I couldn’t even get this right. I suppressed the urge, of course, so they wouldn’t think I was even more weird than the already suspected. Another group of people that I wouldn’t fit in with.”

“Making friends has always been so difficult. Once I make a good friend I hang on to them for as long as possible even if they’re not very nice because I’m scared I’ll have to make a new one if I lose them. And we all know how hard making new friends is for me.”

“I’m a perfectionist. Especially with my art projects. When I took a painting class I realized I do it the wrong way. You’re supposed to paint layer by layer over the entire canvas and focus on small details at the very end. I work on one small area at a time and do small details too soon. I often spend way too much time on small details before I realize that the larger shape of the object isn’t proportionate and then it’s too late.”

“I won’t even attempt tasks if I know I can’t do them perfectly.”

“I have perfect pitch. I don’t know if that has anything to do with autism or that I just started music lessons when I was young. I can tune instruments perfectly without a tuner or reference note and I never understood why my orchestra teacher had me play the A key on the piano over and over again while she walked around and tuned everyone’s instruments when I could do it without any reference. I can hear it in my head.”

“When my parents got me a keyboard at age 7-8, they were impressed because I could sit down, without listening to any song and find the notes of a song I liked by ear. I still do that today but my piano is very out of tune and it bothers me.”

“Autistic boys tend to isolate and not care about concealing their stims or weird behavior but girls don’t. I am a ‘loner’ and always have been but I want so badly to belong and have friends and socialize, but I’ve always been so bad at it that I strike out every time. I often drink at social gatherings because it helps me loosen up and talk more freely. I guess it helps me lose the mask for a while.”

“I HATE people touching me. I’ve always hated it and still hate it to this day unless it’s someone I’m super comfortable with. I’ve been told I have the ‘dead fish hand shake’ and I’m an awkward hugger. My friend picked me up from behind and carried me for a few seconds because we were all goofing off and having fun but afterwards I was so mad at him I got really quiet and didn’t talk for a while. I told him later on the ride home that if he did that again I would slap him. “

“Everyone thinks it’s weird that I don’t like touching people, and some of my friends who also don’t like touching people were abused and I always thought, ‘there had to be a reason, maybe I was abused as a kid and repressed it.’ It’s been so long and I’ve finally realized that maybe it’s just because I have Aspergers or ASD. “

“When I make sarcastic remarks or jokes I often have to clarify because I say them in such a monotone way that people think I’m serious.”

“I’ve always joked that I’m just really clumsy and uncoordinated, and chalked it up to being tall and lanky. That’s why swimming was the perfect sport for me. Little to no risk of injury and not much hand eye coordination needed to be good at it. Just hours of practice, technique and endurance.”

“I also injure myself quite a lot because I’m ‘a klutz.’”

“Stims: I scratch my head and then smell my fingers and I will do this for hours if I am able (I know that one is weird so I only do it at home) popping my knuckles a ridiculous amount of times when I feel uncomfortable and don’t know what to do with my hands. I twirl my hair constantly (that one is pretty socially acceptable so I do it in class nonstop). I tap my foot or bounce my leg, I make weird facial expressions and forget to hide those. People notice but they often think it’s funny because I’ll make a face if someone says something dumb and make an expression that people seem to relate to. I scrunch my nose if I’m uncomfortable or just whenever.”

Special interests: Star Wars, Disney (I know every word to every Disney song and I watch animated Disney movies over and over again, like literally every night) dolphins, the ocean, dogs, theology/the Bible.

“With my art work, and other things, I will get so focused on a painting that I will work non stop for 8-9 hours (all day basically) and not eat because I’m so focused that I forget to eat.”

“I think I slur my words a lot and sometimes my friends will laugh and be like ‘did you just say ____.?!?!’And I’ll clarify and they will continue laughing and say ‘oh it sounded like you said this.’ I hate when that happens.”

“Loud noises really bother me. I jump if I hear an unexpected loud noise and I hate people yelling, even if it’s not directed at me, it makes me want to cry. “

“I loved the color blue so much as a kid (I still do) but my entire wardrobe was basically different shades of blue t-shirts. I also only ever wore baggy t-shirts and baggy cargo shorts (I kinda dressed like a boy) because it was comfortable and I didn’t like getting comments if I looked “cute today”. I hated the attention. I also never ever wore my hair down to school. It always had to be up in a tight pony tail. I still don’t like my hair being in my face to this day and wear it up almost every day.”

“The other day, I was hanging out with a friend and she was trying to tell a story but I kept getting distracted and interrupting her. She said, ‘Emily, you kind of interrupt people a lot.’ At first I was hurt, but then I realized it’s not entirely my fault and it’s an autistic thing.”

“I mask so much that I have rehearsed responses to social interactions and will often get so nervous or start speaking from the script before I realize I’ve said the wrong response. Of course I’ll think about it all day after that and think of ‘well great, so and so thinks I’m weird now.’”