#anyways i like autism i just wish i had access to all of the therapy | Explore Tumblr Posts and Blogs

voidstain · 2 years

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Anonymous blog that started as a writing blog. Now it's a bit of a mishmash. Self expression, often unedited and done on mobile. Maybe discourse, maybe rambly posts, who really knows.

Quick rundown: Pro-ship, pro-endogenic systems, pro-kink, pro-sex work, pro being radically inclusive generally. Disabled (physically and mentally, though the distinction is not one we feel needs to be made), queer, tired. 25+ body. We block liberally but do try to be understanding and own up to mistakes.

Feel free to block for any reason. We try to respect DNIs, if they exist/are accessible for us, but don't really think stating one ourselves is worth it. If you want to interact, you will, a DNI isn't going to do much to stop people. If you don't want to interact because of our stances, you aren't going to anyway.

Info on us and what you may expect to find on this blog below the cut.

We are a plural system that prefers using headmate/fictive terms over parts/alters/introjects. Voices will not be given names, and are numbered in order of choosing to use this blog, not by how many are actually here.

Currently:

Voice 1 (They/It)

Voice 2 (She/Her)

Voice 3 (They/It)

Voice: undisclosed (could be anyone, or a mix! Not necessarily a voice given a number.)

Voice 4 (They/Them)

Voice 5 (He/Him, & any)

Topics you may find:

Queer themes

Neurodiverse themes (Autism, ADHD, plurality, trauma, & more)

Cripplepunk/Madpunk/Punk in general

The woes of chronic pain

Lots of identity stuff

Self harm/Suicide/Death

Religious trauma

Unreality/Things of an otherworldly nature as if literal and as if really had happened

Dealing with reality, usually with hopepunk, but like, yikes

Fandomish stuff, maybe. Headmates/fictives being vague probably.

& more!

Any identifying info is not happening. If you think you know us no you don't. NDA this shit. Redirect your brain cells away from suspicion. If you browse thats fine but leave no trace, nature trail visit this place. Coincidences are just that, not even correlation. Or else.

(We'd probably just be embarrassed about being Known(tm) and kinda upset about some stuff being seen thats private but pretend I have a gun for the meme)

Thanks for coming to our ted talk, except psych, bonus ted talk of thoughts will be randomly added below

Anti-psychiatry. Yes we have a psychologist headmate, yes we are in therapy with a therapist who knows about us. Tear down the medical field and rebuild it brick by fucking brick without any brick not being seen to by someone it impacts. No one should be forced to have medical choices and bodily autonomy stripped like that.

As such, obviously, pro self-dx, because dx labels are like. a horrible mess. Half of it is different brands of slightly varied symptoms lining stuff up to see which eye glass you see through best at the eye doctor. Whatever's comfy yall. It's like trauma all the way down anyway. Yes for like, almost everything. Even the biological stuff is exacerbated by trauma. Life in our society is inherently traumatizing for 99.9% of people.

So like. Drugs. Relatedly. Addiction is a societal problem. Free supervised substance use sites is a public health issue. Stop jailing people (disproportionately BIPOC who are often then exploited as prison labor) for drugs. Stop villainizing them. Addicts should be supported, and you know what? If someone wants to do drugs sometimes, let em. They aren't a crime that forever marrs your immortal soul or some shit.

Opiod crisis. Pain relief seeking behavior being classified as drug seeking is costing lives, just give them the prescription. Also on this topic free healthcare. Abortion is an inherent right to bodily autonomy. Let someone trans their gender as much as they please so long as consent is informed. Also palliative care over life-prolonging care any day if the person wishes. Also physician's assisted suicide.

For the love of the vast void or whatever you believe in stop letting cops kill people. Stop letting cops. That's it end of sentence. Redirect funds to better serve the community. Cheer when the station goes up in flames. Also just because you're European doesn't mean you're free of the racism of the US.

More to be added when we feel like it. Also posts may get made abt these separately

#about #about us #about post #info

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autiebiographical · 3 years

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Hello,

So, I saw that you take july off. I'm sorry if I shouldn't have sent anything, I hope I don't disturb you. I just couldn't send it later since I'm going to not have access to my computer for some times soon.

I'm here because I saw several psy, and even thought I complained about it, they want me to get my IQ tested and testing if I have asperger. I'm suspected to be/have asperger since some years, they think that now I'm 17 it's time. So, I have some questions if you don't mind.

What is this test? Why is it important to know if I have asperger or not? The world will not change for me anyway, since it never did when I was already showing difficulties.

What exactly is being non-verbal or semi-verbal? I interrogated myself on the subject, since I'm not capable to speak to anyone but my family. Is it possible for it to go away? It is hard when oral exams happen, and to establish relationship.

Is it possible to live a good life as an asperger? Personnally, I hate being touched and don't understand social cues, I am very sensible to sounds and lights, I struggle to talk to people, to make friends... With all of this, how can my life be okay?

What should I do when I'm breaking down? I think there was a term for that, like overload or something. Sometimes, I completely loose it, most of the time, in very noisy places, sometimes just because of a fly or anything. It can get really hard, and it take me a lot of time to calm down, it sometimes take me days to completely have it out. How can I calm down quickly and easily, for school for example?

Do autistic people view gender and sexuality differently? I've always been bad with that, I never understood anything of it. To me, these notions are blurry. Since I experience what I think is gender dysphoria since some years (start of puberty and before), I think since some years I'm a trans guy. But is it because girls with asperger are not girly and don't understand gender norms? I just wish I had no buisness with gender, like, no gender at all. Is it a common feeling in autistic people?

Thanks a lot if you took the time to read this. I'm sorry, it was a bit long. I hope I'm not disturbing you or asking to many things. Let me know if that's the case.

(I don't know exactly why I put this on anonymous, don't take it as an offense or anything, I'm not ashamed of my possible autism, nor am I to send you a message, I'm just a reserved and secret person.)

Hi! Don't worry about having sent this while I was on break.

What is this test? Why is it important to know if I have asperger: The assessment for autism or Asperger's, since some countries still diagnose Asperger's, can be different depending on where you are, and who your doctor/therapist is. It's important to know if you are autistic because having that on your medical record can help open doors to needed support. Things like therapy, assistive devices, disability, etc. It can also help you understand yourself better.

What exactly is being non-verbal or semi-verbal? Being non-verbal/semi-verbal is when you can't communicate verbally. There's no definitive reason why it happens (at least not yet). For some people it does go away, but not for everyone. However there are ways of communicating without talking. There's text-to-speech, sign language, and visual aids. This is called Alternative and Augmentative Communication (AAC). I suggest you research it. It may help you.

Is it possible to live a good life as an asperger? Yes, it is absolutely possible. I'm living proof. Will there be struggles? Most likely, but getting diagnosed, and getting the assistance you may need can certainly help you on your journey to a good life.

What should I do when I'm breaking down? It sounds like sensory overload from sound. Noise cancelling headphones can definitely help with this, but when you're in an environment where you can't wear them, like in class, you may need to find coping mechanisms to help fend off a break down. Stimming is a good why to regulation yourself, but this is something you can figure out in therapy and on your own.

Do autistic people view gender and sexuality differently? It definitely seems like it. Autistic people are much more likely to be in the LGBTQ+ community than neurotypicals. An autistic person being a trans man has nothing to do with autistic girls being less feminine or not getting gender norms. My theory is that because autistic people don't understand gender norms, or society's concept of gender that we're less likely to hide any gender deviation from societal norms. We're less likely to be closeted. I may be wrong, but that's just my theory.

Personally, I'm non-binary. Specially I'm cassgender which means that I'm pretty indifferent to the concept of gender. My gender is unimportant to me.

I hope this helps!

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xcherry-popx · 3 years

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if its not too weird to ask, could you write some posts abt rad + asd (either one or both/abt comorbidity)? cuz i wanna find more info abt them & i saw stuff saying asd/rad cmrbidity was impossible too & think i may have both. i have zero access to mental health help atm and will for a pretty long time so im just doing what i can as i wait, document my symptoms and stuff and try to cope, for now. (btw im saying this 2 clarify tht im not trying to be invasive or out of curiosty. sry its so long)

It's no problem! Honestly, I'm excited to hear about someone like me, with how uncommon it is. No need to worry about it being long, because my answer ended up long as well ^-^;;

I wrote this quicker than I expected, so please forgive any mistakes, and feel free to ask for clarification.

I’m mostly going to use the term ‘RAD’ (reactive attachment disorder), but a lot of this information applies to DAD (disinhibited attachment disorder) as well. I was diagnosed when they were still grouped together as RAD.

If any information does not apply to both, I’ll specify the differences between them.

First off: there is no reason autism and RAD can’t be comorbid. Now, most psychologist insist that they cannot exist together, but this is outdated. Unfortunatly, because RAD is so uncommon, very little discussion occurs, and thus any progress in understanding the disorder takes a bit of time.

Fortunately, some discussion has begun. This study is one from 2017. https://pubmed.ncbi.nlm.nih.gov/27895198/

As of now, it’s the only scholarly discussion, but hopefully that will change in time.

Essentially, autism is something you’re born with, while Reactive Attachment Disorder is the result of severe neglect or mistreatment.

The study found that several children diagnosed with RAD met the criteria for autism. The difference in children with autism and RAD vs children with only RAD can be distinguished by focusing on traits specific to autism.

That’s actually how I first suspected I had both: I looked through several diagnosis lists and checked whether I had symptoms exclusive to each list.

One of the current diagnostic criteria for RAD and DAD is that the child cannot also be diagnosed with autism. This is because RAD, and later, DAD, were often used to explain ‘autistic-like behavior’ in children who either did not show signs of autism early on, or who experienced severe mistreatment.

The main reason this is outdated is because it relies on the belief that autistic individuals do not form attachments to caregivers, which many autistic people will tell you is false. That all relates back to the idea that because autistic people show affection differently, they do not feel it the way allistic people do, which is, again, false.

It’s often difficult to get an RAD diagnosis, much less one along with an autism diagnosis. However, it’s not impossible, although for me it involved two different diagnosises that my grandma and I realized made most sense together.

Under the cut, I’m going to talk more generally about RAD and DAD as well as about my experiences.

You said you don't have much access to mental health help, but I felt I should include this next segment anyways.

Attachment therapy, one of the most well-known treatments, is harmful. I would suggest avoiding it. It goes against attachment theory, the basis of RAD. I don’t say this to scare you, but it is coercive and has resulted in death in some cases. You can look into it yourself, but it is rather sickening for me, so please take care if you do so.

While most advice involves making sure the child has an emotionally available ‘attachment figure’, usually a caretaker, that assumes you would want someone to connect to that way.

As someone with inhibited type RAD, I always struggled when people asked if I wanted to be closer to my grandma. To me, we were like strangers, maybe coworkers. I didn't want to open up to her, and so I still don’t.

I believe that, while it’s nice to have a friendly relationship with caretakers, it’s not necessary. For me, it’s always been more important to have friends I can open up to.

Don’t feel pressured to form an emotionally intimate relationship if you don’t want to or feel ready for it. I still don’t think I’m close to my grandma, but we feel like acquaintances now, and that’s enough for me. You don’t have to force a relationship, but don’t be afraid if you want to start one.

Of course, you may have different experiences, or be in a different place with your caretakers, but since I've struggled with that aspect I wanted to talk about it.

Most treatment for RAD is under the assumption that the child is young, which I assume you are not. In general, I suggest finding people you can trust, if you don’t have them already. I don’t want to make too many assumptions here, so if you want more specific advice feel free to ask me.

While RAD is the result of mistreatment such as abuse or neglect, it’s rare even among those who have experienced such things. There’s some debate on why it occurs, and I believe many theories suggest disposition can make one susceptible? But I’m not entirely certain on that front. Also, I’d like to clarify one thing. While most criteria says the mistreatment must begun before age five, it’s not necessary. What happened to me was when I was 11, and it changed me enough that I gained a official diagnosis of RAD a few years later. What matters is how it affected you, not when it occurred.

Now, I’ve mentioned there’s a difference between RAD and DAD, but I haven’t specified what it is. I'll explain that, but to do so I need to talk about how they form.

The basis of RAD and DAD is what’s called attachment theory. This states that young children need strong bond with at least one caregiver to develop. The bonds with their caregivers dictate how their attachment style forms. However, RAD and DAD have their own types of attachment, referred to as inhibited attachment and disinhibited attachment.

They used to both be classified as RAD, separated under the categories ‘inhibited type’ and ‘disinhibited type’.

Many people with inhibited or disinhibited type will show signs of both, but can usually be classified as one or the other. I am inhibited type, but when I was younger I showed signs of disinhibited type in places such as school.

Inhibited attachment is what’s known as Reactive Attachment Disorder. It’s more common in mistreated children. This type is when a child avoids or ignores caregivers, often not showing affection unless convinced to.

Disinhibted attachment is what’s now known as Disinhibited Attachment Disorder. This is more common in children in institutions or group homes. This type shows affection to any and all adults. They are quick to trust strangers. When my grandma worked in foster care, she had some children who, after less than a day of meeting her, would cling to her leg and beg her to take them home.

In this case, inhibited types struggle to form attachments, while disinhibited types will form attachments quickly and easily, with no preference towards their caregivers.

I think that’s all for official information, so I'll talk a bit about my experiences with RAD.

Honestly, it’s isolating. It’s often seen as something that happens to children, and no one talked about adults with it. There’s numerous psychologists who’ll misdiagnose it in foster teens for not showing affection to adoptive parents ‘the way theyʻre supposed to’. Many people treat people with RAD or DAD as ‘psychopaths’, and there’s numerous times I’ve seen it listed as ‘terrifying’, even among the social workers that meet kids with it.

It's discouraging. But I want to tell you that you aren’t alone. I’d be happy to talk to you about your experiences, and share my own. I have hope that people will begin to recognize this disorder despite how uncommon it is, and see it for what it is.

In any case, I hope you are able to find the diagnosis you need, even if it doesn’t turn out to be this one. I wish you the best of luck!

#rad #reactive attachment disorder #disinhibited attachment disorder #i feel like ive said this repeatedly but. feel free to reach out! im happy to help in any way i can

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actuallylorelaigilmore · 5 years

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i just need to vent. ranting about the us system for mental health care ahead. i wasn’t going to put it behind a cut, but it got obscenely long.

okay. so anyone who knows me or who follows this blog knows that my brain is pretty broken. it’s creative, and fun, and smart, and all that, but also just suuuuuuuper broken.

because us healthcare is ALSO broken, i didn’t get my full slate of diagnoses until i was almost thirty. and that was a long, convoluted process that is a whole other story, but what matters at this point is that my fascinating brain is officially comprised of generalized anxiety, bipolar 1 disorder, autism, and adhd (plus i think a few cats in a trenchcoat).

now, if you’re not familiar with all of those disorders, like i wasn’t prior to being diagnosed, you might be surprised to learn that the combination? is INCREDIBLY fun. the stimulants that they often prescribe to those of us with adhd can trigger manic episodes in those of us who are bipolar, which means two parts of my brain are locked in a permanent battle to see which one gets treatment and which one just gets to drive me crazy.

before i won my disability case a few years ago, i didn’t have insurance, and i lived in utah, a state that is super proud to have healthcare for mormons & the wealthy and death for everyone else. while i was there, the battle over utah rejecting aca money just to spite the sick and poor was raging on, and so my mental health care was a free clinic that was prohibited from prescribing the exact medication i needed for the problem i went to them for.

instead of helping treat my adhd, they gave me my first diagnosis that would eventually be specified as bipolar 1 disorder, and they gave me meds for THAT and told me it would probably help the adhd too.

it didn’t.

but being medicated for the bipolar disorder was still pretty amazing. the difference between me on meds and me off them isn’t like, institutionalization yet, thank the gods. but it is the difference between feeling sad and then moving on with my day or me standing in one spot sobbing uncontrollably until i nearly pass out because a movie I HAD SEEN BEFORE was sad.

but you know what’s just fabulous about us healthcare? (spoiler alert: the answer is nothing) the care you have access to varies based on where you live!! and because we can all control exactly where we live based on our healthcare needs, that’s just wonderfully designed. really fantastic.

so when we moved from utah to california, a move that was wanted but also financially necessary, i went from a localized system of university-based insurance to a different plan each time i found myself in a new city. because even if i was only moving a hour away, it put me across the county line, which of course changes your options every. single. time. you move.

and every single time i moved, and got a new insurance plan, i had to find new doctors. which meant waiting while i was transferred to the new plan, then waiting until i could see my new doctor, then waiting to see the specialist approved by my insurance, and none of that included the time it took me to actually contact each of those people, because i have to talk myself through an impending panic attack every time i dial the phone.

but that’s not even the worst of it. the waiting sucks, the long loooooong gaps in coverage and going without my medication sucks. but the worst of it is not being able to be treated at all.

it’s been more than five years now, since i went to a college counselor who told me they couldn’t help with the focusing problems i was having that were so severe i couldn’t do my class readings. it’s been almost that long since the free clinic promised me that if i just took the anti-seizure medication that they used for bipolar disorder, my adhd symptoms would improve.

it’s been years since the incredibly kind and knowledgeable psychiatrist in salt lake city explained my four concurrent disorders to me, and then explained why i couldn’t be allowed help for the adhd because it was just too dangerous.

it’s been more than a year since i went to multiple talk therapy sessions that were required before getting me a prescribing psychiatrist appointment, only to be told when i arrived for that final, promised-land-after-years-in-the-crazy-desert-of-my-brain appointment, that the psychiatrist didn’t feel qualified to work with my multiple conflicting disorders and there was nothing anyone could do for me. i broke down crying in the lobby. i still feel bad for the receptionist who was given the awesome job of telling me that.

i think it’s been about a year that we’ve lived here now, in this NEW california city, where i have ANOTHER primary care provider. this one had trouble communicating with my autistic self at my first appointment, and i might still be there asking her to explain her questions better if my spouse hadn’t been in the room to translate for me.

my new doctor (the third, or the fifth, or the seventh, at this point, i’ve lost count) will not prescribe mental health medication to me. i have to see a specialist. which i get on principle, it isn’t her expertise and i’m new to the area. but it’s a year later, and i’m still off my meds, and i’m still trying to get back on them, let alone get help FOR THE THING I SOUGHT HELP FOR five years ago.

today my spouse was able to get through to my referred psychiatrist, who i’d been getting the voicemail of with no reply for months now. he isn’t available. the last psychiatrist i was assigned won’t take patients who have the doctor i have as a primary care provider. the one before that wasn’t accepting my insurance--the insurance that assigned them to me.

so now my insurance will try again, taking whatever next step they’re going to escalate to. if my spouse weren’t making the phone calls for me, i don’t think i would even still be trying at this point, because today’s dead end wasn’t even a surprise. i don’t expect anything else anymore. i’m so far past the point of losing hope, it no longer even hurts.

this is where i am. something about where i live, or the way the system is set up, or how my brain is busted, makes me impossible to help.

anyway, i whine a lot on my blog about not being able to focus, about not having the energy to function, about wanting to write or read a book, or make things. i miss knitting. i can’t keep track of the stitches when i try to follow a pattern, so i don’t do it anymore. but it used to be fun.

so i guess the point of this, beyond getting it all out because i feel numb and it’s unsettling and at least rambling my feelings proves that i have them, is that i’m pretty hard on myself, publicly and privately, when i can’t get my brain to work the way i wish it could. it’s a process of deterioration, the more i go without care and the older i get--and that sucks.

but as hard as it is, it’s not all my fault. the external factors, things i can’t control, about america, about health insurance, about my brain...it hurts even more because i can’t control them, but i should try harder to remember that i can’t. the more frustrated i am, the more i feel like i’m not trying hard enough, and that isn’t true. i’m trying really hard, and i just can’t fix me alone.

i’d like to learn to blame myself a little less for that.

#if you made it to the end of this you deserve a prize #i have a lot of feelings #health insurance #adhd #bipolar disorder #autism #anxiety #mental health #us healthcare #me #life stuff #/whining

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fightingmama-blog · 7 years

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This is long. Please read it. This is a story of The System and how it fails kids. More than that, it’s a story of how people within The System are complicit in this failure. All year I’ve been saying it feels like I’m living a British sitcom because this stuff is just too crazy to all happen to one person at one time. Everything I’ve written is true. I have permission from my daughter to share it, but I want to do so anonymously. Please share this far and wide. I want the world to know how stupidly difficult it is to simply live when your brain is trying to kill you.

My daughter is 15 and has been struggling with severe depression and anxiety for the past year – well, for longer than that, but with suicide attempts and hospitalizations in this year.

None of this is or has been secret, but it’s hard to talk about, to make oneself vulnerable. Mental illness is difficult enough to talk about without also feeling like a failure as a mother (regardless of whether that is logical or not). I have learned this year, though, that all of this is a lot more common than I ever thought.

I think the worst thing a parent can face is the idea that the child they created doesn’t wish to have been created at all. The scariest thing I live with is the idea that I might wake up one morning to find her body.

I first learned of the suicidal ideation (SI) last November. Immediately I went to her school for help because not long before we had had a meeting to support her anxieties and I was told they could help in these cases. They did nothing for a full month, despite me calling weekly to check in.

She eventually began receiving therapy at a place called Nueva Vista (NV), but not until the end of January. Her first psychiatrist appointment was not until nearly a month later and she wound up not making it because of her first hospitalization. The doctors in the hospital started her on meds, though. I could not get another appointment with the NV psychiatrist for almost another month and she wound up missing that one, too, for the same reason. At this point I demanded that they see her sooner and they made it happen.

Before, I never really understood the need to pull a child out of school for a doctor’s appointment, but now she’s been pulled out on a regular basis. Sigh.

She was hospitalized once more in April, this time due to a reaction to a new medication they had tried.

A few weeks later we were told that NV provides services in sets of 13 weeks. She was at the end of her first one, and they were applying for a second, but that she would likely not receive a third. I was a little upset because we hadn’t been made aware of any of this at the beginning of our time there. But they promised us a number of things:

1. That they would prepare her for the end of services.

2. That they would help us find services to transfer into.

3. Worst case scenario, they could end services, we could wait three weeks and reapply.

In May we had an IEP finalized for her to help her with this at school. For those who don’t know (lucky), an IEP is a legal document for special education written to provide services, support, and accommodations for a disability. Her IEP stated, among other things, that she would get a therapist at school. The school wanted to write in 730 minutes per year, but my advocate (a very close friend who is a special ed teacher) would not settle for that, knowing that it wasn’t specific enough. Schools are notorious for not writing IEP’s properly and not following them when they do. There is a whole branch of law devoted to suing schools who do not provide accommodations to their students. Anyhow, my friend insisted that my daughter’s IEP state the therapy be provided at least every other week. This turns out to have been a necessary thing, because they did not actually hook her up with a therapist for 3 months.

And then that first therapist? She told my daughter, “If you cry all the time, how do you expect to have friends?”

Other fun things her teachers, school staff, or even her IEP case carrier have said to her, KNOWING her IEP is for depression/anxiety:

-You look too sad all the time. Why don’t you look happier?

-You made me feel like I did something wrong.

-Well, if you don’t talk to me, how do you expect me to help you? (This one in the middle of a panic attack.)

To jump ahead for a moment, because it will just be easier to get all the IEP stuff out of the way, I requested an IEP meeting at the end of August to revise the IEP and, while they held the initial IEP (and I refused to sign it because it wasn’t complete yet), they have STILL not finished it.

During May and June I was dealing with my son’s (12 yo) extreme anxiety. He had entirely lost the ability to participate in school, partly due to a new curriculum, but, I think, largely out of the anxiety he felt over his sister’s health. In trying to find him therapy of his own, he was given an eval at a place called Motiva, but they felt he was too severe for their services and they referred him to NV. THAT was a whole damn mess. They didn’t want him and they gave me a whole host of excuses:

1. He can’t be seen there until autism isn’t his first diagnosis (yeah, that will never happen).

2. He can’t be seen there without a diagnosis (first of all, the referral from Motiva listed a diagnosis, secondly, my daughter didn’t have a diagnosis until they gave her one AFTER she was being seen there).

3. Why couldn’t Motiva just see him, anyway? (Because they don’t do family/group therapy or have access to a psychiatrist)

Eventually, Motiva convinced them to take him, but I don’t feel like their heart is in it. I really don’t. He hasn’t been referred to the psych, and they are already talking about ending his services at the 13 week mark despite the fact that it took them 8 weeks just to get him to talk to them at all.

NV is considered a medium-high severity mental health clinic. I don’t see how a child being hospitalized three times in three months isn’t considered severe. I don’t see how a child being unwilling to consider talking to a therapist at all for 8 weeks isn’t considered severe.

And yet, one day towards the end of summer, my daughter’s therapist told her she had one visit left. I had assumed that they would TRY to get her the third set of sessions, but they didn’t even TRY. They also had not:

1. Prepared her for the end of services.

2. Helped us to find care to transition into.

I demanded to speak with the director of the place. This was a terrible idea. The director, Bill Simpson, is a terrible human being. You would think that a director of a mental health clinic would understand how to speak to people, particularly those in crisis. You would be wrong.

During this conversation, he told me that the reason they could not apply for a third set of sessions is because the county would never approve such a thing unless the child had been hospitalized in the previous two weeks. I mean. That sounds like a thing that might be true, but it also sounds like a thing that a doctor could potentially make a case for more care for a child in a particularly special place (i.e. one who had been hospitalized three times in the past year, and who was not stable on her meds even after more than six months of trying to figure out the right meds for her). And yet he told me (and he repeated it several times), “absolutely I would refuse to help your child.” He claimed that if he even submitted one request for a third set of weeks without the right criteria, the county would refuse to approve any requests ever. That? I have a hard time believing. And even if it were 100% true, I am certain he could have found a kinder way to convey that information.

When I tried to convey the promises I had been made by the staff 13 weeks ago, he brushed me off, saying that he couldn’t believe everything everyone says they are told. It felt a little gaslighty.

He also told me there is no such thing as long-term therapy. Did I already mention gaslighting? Cause that statement right there is the king of crazy.

I am not even kidding you when, at a later date, I asked how to complain about the way he treated me and I was directed to their in-house comment cards instead of the proper county forms that the office doesn’t have access to. I’d love to believe that was a simple mistake.

Every time I try to discuss these things with the staff in the office, they nod at me and say, “I’m sorry you felt that way.” But it is so clearly empty. They don’t actually care, or perhaps they do, but cannot act in any way helpful because of the way the director runs the place. I don’t know. In the end it’s irrelevant because it is simply not helpful. I don’t feel heard and when I try to explain that they are able to say, “Well, I apologized. What more do you want?” It is a very crafty way to dismiss a person.

I am getting quite good at spotting this sort of manipulation, though, and I refuse to play along. My tactics tend to be reminding them what they said two minutes ago, comparing that with the opposite thing they are telling me now, listing all the conflicting things they have told me during the conversation, and listing all the evidence I have from previous experiences. I am never loud, I am never rude, I never curse or insult. I simply state truths. I am always treated as hostile.

We tried to find a new therapist for her. We spoke with a place called YES through San Ysidro Health Center and the woman who did the intake was so kind. She told us that they had plenty of kids who’d been patients there for years and that I should come in and talk with her and she’d take care of my daughter. It felt so good to be heard, and to hear the promise that someone would help us.

They did not help us. They contacted NV who told them that my daughter had “met all her goals” and so they were not able to serve her at YES either. They said they could refer to the general San Ysidro Health Center, but I know (because that is the clinic where my doctor is) that their therapy is not traditional therapy. They only offer 30 minute sessions and most of the work is done at home, alone. That is not nearly the kind of care my kid needs right now.

So around this time, my daughter’s psychiatrist was still adjusting her meds so they could not fully close out her case at NV. She continued meeting with her therapist, but just for 20 minute check-ins instead of the full appointment. She had been on Lexapro since April and it was working well, but not well enough. So we tried Wellbutrin in August. It was a kind of a gamble, as anyone experienced with Wellbutrin knows, but it seemed to be a miracle drug for my kid. She was almost normal for the first time in more than a year! But that only lasted two months. The psych had tried raising it, and then raising it once more.

We saw the doctor one last time the week after they raised it a second time. Here is where things get really upsetting. My daughter had never been stable on meds. She is proving extremely difficult to treat. The longest period of stability were those first two months on Wellbutrin. The doctor’s nurse had found us a new psychiatrist, but the waiting list to see them was three months long. I kept trying to explain how the math doesn’t add up: three months without psychiatry for a kid who’s never been stable more than two months is not good math. Further, we kept telling the doctor, the case manager, the nurse, and the therapist that her SI was increasing and that she was feeling worse and worse. The therapist kept responding by saying, “Yes, but you have coping skills now!” They would not listen when my daughter would try to explain that coping skills can only do so much when your brain is trying to kill you.

The very day she had her last appointment with the psychiatrist, I had to take her in to the ESU. The Emergency Screening Unit is a pace you can take a kid in crisis and have them screened 24 hours a day by a nurse. This is one way to be admitted to a mental health hospital unit, and my daughter had been in the ESU twice already so we were familiar with the process. They kept her overnight, but then they released her, stating that she should continue the services she already had. When I tried to explain that she didn’t really have services, she only had one exit session left, they looked at me blankly and either told me that NV would help her find services (they wouldn’t and didn’t – not for therapy, anyway) or they just repeated the last thing they said before I confused them with things that are happening to us. I mean, believe me, I am also confused. But not helping is, it turns out, not helping.

Luckily (?) because my kid had been officially suicidal again (it’s not real unless a doctor outside of NV had been told?) they were able to extend her therapy for the third set of 13 weeks.

But not the psychiatry. Honestly, I don’t know why.

JUST before we found this out, though, my daughter flipped out one day and had to be taken in again.

It was a good day. She’d had a good day, and a good evening, and she seemed fine in the night, too. I was tired and trying to talk her into going to bed. She cheerfully, and entirely unsleepily told me she would. And then I heard music. And then she was getting up and going into the bathroom. I knew she wasn’t going to bed, but I had no idea she was in her room self-harming and trying to commit suicide. (For the record, all the medication and sharp things are locked up.) I was trying to just let her be a kid, but finally something in me took over and forced her to answer me as to what she was doing. And she fell apart and started crying. So I knew I had to take her in, but she told me, “What if my brain makes me run away from you outside?” and I knew that she was telling me she didn’t feel safe enough for me to drive her myself.

Do you know what happens if you cannot drive your own kid to the ESU? You call the police and they take her away in handcuffs. It’s traumatizing for everyone involved. Luckily, we DID know that is what would happen so we weren’t blindsided by it. But it was still awful.

I followed them to the ESU and it turned out to be a very, very late night. I wound up falling asleep on a couch there and they woke me at 3am to talk with the doctor about admitting her. I believed she would be hospitalized. I didn’t expect what actually did happen, though.

There is a place at the same facility that ESU is at. It’s called Intensive Respite Program (IPR) and it’s not quite a hospital in that the kids there have more freedom. They can have some belongings, they can have visitors at any time, they can even leave for awhile. We got to have her home with us for Thanksgiving, which was wonderful. It is very small – three kids max and each get their own room. They spend all day doing work from therapy to DBT to sensory experiences (they have a whole room devoted to sensory stuff). It’s really a beautiful program.

But my favorite part is the people. The director, Hillary, is amazing. The therapist there is, too. They have reacted appropriately to our story. That is to say that they are appalled. They have made the decision to keep my daughter there until her services on the outside are in place (about another week). They have given me the number to a special ed lawyer to help me prepare to talk to the school. They are coming with us to the school. They have already met with us and our wrap team (a program called Families Forward). I am so grateful to them.

I don’t know where this will lead. Maybe we will get dumped again. I mean, why not?

But I don’t think so. They’ve already shown us they are with us.

But here’s the thing. Repeatedly I have had to check on people, to make sure they are doing their jobs, to ask them to do their jobs. It’s ridiculous. I’m a single mom. I’m quite poor right now. I’m a full time student. I have TWO kids with special needs. I have no family support. I have enough to do without doing the work other people are paid to do.

I have been praised multiple times by various sources (some genuine and some probably less so) for my advocacy for my children. But that only goes so far. When you face one brick wall after another there’s not a lot you can do.

I don’t know if this happened (is happening) to us because we are poor, or because this is mental illness we are dealing with (would a physical illness get the same treatment? to the same degree?), or if it’s just the way things are for everyone, but it’s not acceptable. We MUST stand up for healthcare, for mental health, for children. This is just not okay. It nearly broke me, and may still do so. Please. Someone. Fix the system.

#mental health #suicidal ideation #teen mental health #hospitalization #medication #therapy #psychiatry #IEP #special ed #san diego #nueva vista #ESU #the system #the system is broken #fix it

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7deadlycinderellas · 7 years

Text

The Summerland Group, ch1

Not quite a full Inception crossover, but takes place in it’s universe.

Ao3 Link

They had called it the Summerland group. There was never much information on it available, a last ditch referral for patients to Oliver and Melanie Bird’s experimental and highly secretive brand of “shared dream therapy”.

They never spoke of where they learned the technique, the careful dosages of drugs and selected beats and triggers. But for those sent to them, the gratitude for the ease it gave their troubled minds overwhelmed this. Many even stayed with the group, to help others.

There was always the question of danger, but the potential for great good work was too overwhelming a goal.

All of this came to an end when Melanie received the letter of referral for one David Haller.

“What do the notes on him say?” Cary asks, taking the file.

“Substance abuse, possible delusional disorder, they wanted to dry him out of the former before deciding on the latter ,”

Melanie nods.

“And one suicide attempt. His medical hold just lifted.”

That gets her attention.

“Aren’t you worried about…” Cary asks, trailing off.

“What happened to Oliver has nothing to do with this”. Melanie replies firmly.

“Syd’s insisted on coming with us”.

“The same David?”

Cary nods.

In the car, Syd shifts uncomfortably. It had been six months since she herself had left the Summerland complex, and as the serene countryside gave way to towns, her mind began to shift.

“I hope you know what you’re getting into” she comments.

“We have his file Syd.”

Cary interrupts.

“We were actually hoping you might be able to shed some light on it”.

Syd shakes her head.

“David was always...troubled. He would never talk much about his childhood. When I was still at University with him his drug use wasn’t too bad...but there would be days where it was like he was suddenly...gone. “

“Did he ever have hallucinations or delusions when you were there?”

Syd shook her head.

When they get to the bus station, the nerves in her stomach have settled a bit. David comes off the bus, hair askew and with a twitch, but with the same smile she remembered.

“Syd” he says when he sees her, and he moves in as if to hug her, before stopping himself.

She wished he didn’t have to.

“You look…”

He nods. “Things got...bad after you left. It wasn’t you!, but….”

“Do you have your medical papers?” Melanie interrupts.

David nods and hands over the folder.

“Declared no long a danger to myself” a pause, “Or others! Though that one never really came up”.

The twitch would almost be frightening were his face not so pinched. David always had a lightness to him, even in the bad times. It’s not gone, so much, as lost.

When they’re riding back to the compound, David stares out the window. Syd asks him quietly.

“Are you OK? What are you seeing?”

He ducks his head.

“I don’t know anymore”.

Most of the ride back is silent.

When the four exit the car, it’s Kerry who greets them first, grabbing Cary by the hands.

“Two hours” she says.

“Two hours fifteen minutes” he corrects.

“Want to play ping pong?” she asks, and they depart.

“I’ll explain tonight” Syd whispers, before she’s pulled aside for dinner prep.

Melanie shows David around the ground, and the dorms and where he can leave his meager luggage. He tells her he’s tired from the journey and would rather just go straight to bed. This is partially true.

The bed seems too big and too soft. He’s restless, and unused to trying to sleep without medication, without personnel constantly making rounds. There’s all kinds of things in his room. He’d become used to having no things, nothing that could even conceivably be used to cause harm. There’s a rhythm, a rhyme, to night times in the crazy house.

Which is likely why he doesn’t initially notice when Syd opens the doors and quietly slips in.

“Are you supposed to be in here?” he asks.

“This isn’t Steinson Hall, no one’s going to tell the RA on us, scoot over.”

He does, and she pushes the pillow between them.

“The pillows are nicer here too”.

They’re quiet for a moment. David has missed this, missed her, more than he could have ever believed, even before this whole mess.

“How’s Amy?” Syd finally asks.

“Getting married next year. It was going to be next month, but after….stuff they decided to put it off.”

“Good for her,” Syd replies.

“Any word from your mom?”

David feels Syd shift beside him.

“A note about my continuing health coverage, and a reminder that because of her I didn’t have to pay tuition. Guess she didn’t ever expect her only daughter to have a psychotic break in her last year of college because someone got drunk and forcibly made out with her at a party.”

“I thought it was just a panic attack?”

Syd rolls her eyes so hard he can practically feel it.

“I doubt there’s much of a difference to her. I was just an inconvenience to her. It doesn’t matter to me anyway, I’m an adult, I have to live my life for me.”

“Syd, does this...dream therapy stuff, does it actually work, or did we just get sent out here to live with the quacks so the doctors wouldn’t have to deal with us anymore?”

“It’s amazing” Syd says, eyes wide, “It’s- hard to describe. Not even just the whole helping with our issues thing. The kind of power it gives you, it’s be unbelievable. Addicting even. I’ve even started painting again because of it. It completely changes the way you see the world.”

“So the Birds, they know what they’re doing?”

“Like any of our other doctors ever really did? The diagnosis they sent me here with said I had a “personality disorder not otherwise specified, or possibly some kind of autism”. I doubt Professor Edgerton back at the therapy group in University would have any idea what to do with Cary and Kerry”.

“You said you would tell me what was up with them earlier, so can you?”

Syd laughs.

“They wandered here on their own years ago. The whole “shared dream” thing that Melanie talked to you about inducing with drugs and other things? They could always do it. They helped her and Oliver learn about the process, they helped them learn to be apart without freaking out”.

“Are they father and daughter?”

“They claim to be twins. The others just stopped questioning it.”

She yawns.

“Try to sleep tonight, David. You’ll have to do it again in the morning. First thing probably, Melanie seems really interested in your case.”

David tries to sleep. But he knows too well what will come to his mind when he shuts his eyes. And he fears that the future may mean dragging the others in with it.

Syd is correct it turns out, first thing the next morning after (an unusually arty) breakfast, Melanie brings him into the lab, where she introduces him properly to Cary, and to another man he hadn’t seen before who said his name was Ptomney.

Melanie produces a metal device with electrodes, and Cary syringes and several vials of liquid.

“The PASIV, based on a similar design developed in Japan, when used in conjunction with specific sedatives, allow the users to access a shared dream state, with one user’s mind acting a primary conduit.”

She gestures to where Cary is preparing the sedatives, cleaning the area on David’s arm to inject, and then doing the same to her. David has to fight hard not to jump. Needles have rarely meant good things for him.

“Today, it will just be the two of us, so we can get a better idea of what kind of technique may help you the most.”

She then points to Ptomney, is who also being hooked into the machine and prepped.

“The technology can be used freely, allowing the users into whatever space the brain creates or, or a specific user, called the Architect, can create a new space for the others to inhabit. Due to the nature of our work here, today we are going to start off with something constructed, and your mind will fill it.”

She moves and sets a tone on the machine.

“The music will act as a trigger to bring us back out. It’s on a timer today, only five minutes. It won’t feel like five minutes- time in the dream space does not work the same as it does in the real world. And just a warning- once you’re asleep, you’re unlikely to immediately remember any of this. The experience may be...disorienting.”

And on that encouraging note, David feels the world start to drift away.

He hopes that it doesn’t go too badly.

#legion #legion fx #fic

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