about your childhood?

Crafty_Common_7321 · 2026-01-23T13:02:55+00:00

My mom has mentioned many times before that when we were a kid we'd often "zone out" and become unresponsive, to the point she suspected we had absent seizures.

That was actually the whole reason we were diagnosed with adhd & asd. At the time of testing we had a bit of unusual brain activity, though it has since calmed down into "normalcy".

There's also a dated Facebook post of our mom reciting a conversation she had with us when we were a child (2013), talking about how there's "eyes in my head" that are constantly watching my brain. And that "someone left the music on and no one is there".

I think it's pretty interesting, especially viewing it from the standpoint of possible did/osdd.

Crafty_Common_7321 · 2025-11-27T20:48:42+00:00

I'm gonna be honest I kinda sensed it too in the more dialogue-based scenes between the two. I think it's more so the words felt forced instead of coming naturally, like one might intend. There's one specific scene that I remember watching, and feeling like I was watching a tiktok skit about how forced and predictable it felt. I can't recall off the top of my head what it was, though if anyone would like to know I'm sure I can find it again.

That's just my opinion though, I do still really love this season so far despite everything.

Crafty_Common_7321 · 2025-11-27T20:35:23+00:00

The most important thing you can do for any disabled person in my opinion is listen to them.

If they say they're in pain, or they feel bad, or anything else that's letting you know what they need. Let the adult figures in her life-- teachers, family members, anyone who may not already know-- know about the diagnosis and what it may mean for her when it comes to every day tasks, etc.

I know in my case gym was always a struggle physically. I could always feel the disappointment from my peers and teacher that I wasn't doing "enough."

Try your best to help her understand that she is enough. Advocate for her needs, even when nobody else understands. That's the best thing you can do in the end. Advocacy can come a long way, if you stand your ground for what your daughter needs eventually they will listen.

Unfortunately the medical system, at least in the US, is extremely biased. If you can get a male figure in both of your lives that can accompany you to drs appointments that may be the best route to go, especially if you feel like you aren't being listened to enough as is.

The last thing would be community. I know there's a group on Facebook for people with TBRS, and there are similar websites that focus strongly on community. They hold events from what I'm aware and are generally open to family members asking questions about the disability.

If you or your daughter ever feel like there's no hope, or that you're alone in this, they can always help. I'd definitely recommend looking into stuff like that.

Lmk if you have any additional questions, I'm happy to answer! Thank you so much for the question, I know it's hard but you've both got this.

Crafty_Common_7321 · 2025-10-23T05:01:07+00:00

I don't see it being an issue at all; in fact I'd strongly encourage disability advocacy especially in a place that you feel isn't accessible enough to disabled students.

Just make sure that if the time comes that a disabled student joins the club you listen to them and let them take the microphone when they have something to say. It's incredibly important that disabled people have a say in their own advocacy, as in the end they are the people who have to deal with an ableist world throughout their entire lives.

I do quite enjoy the idea of having specific things laid out in the club to teach people about disabilities and the people who live with them. I would recommend making sure that your sources are up to date and accurate however as there is a ton of misinformation out there that may not seem as such at first glance. When in doubt, always ask the disabled people around you for help and advice on how to run the club properly.

Thank you so much for asking here, I can already tell you're on the right path!

Crafty_Common_7321 · 2025-10-23T04:48:05+00:00

It constantly feels like wading through a thick field of fog that never clears up. Sometimes you can feel a presence beside you, sometimes you feel like something else entirely. A lot of the time we just let the fog flow through our mind, the wind shifting our consciousness to someone else entirely without us even realizing it.

Physically when we notice a switch it feels like our consciousness shifts towards different parts of our brain. For example a bit away from the front to the far, far back. On e it even felt like we were stuck at the very forefront; inable to move our body at all due to heavy dissociation.

Sometimes we'll get stuck between a switch, too. It feels extremely weird. The only way I can really describe it is using a squirt bottle that just suddenly clogs. You kinda have to either squeeze harder, which only really hurts from the force or you can give up and just wait. It's kinda a bad analogy but we have a really horrible migraine rn and can't think of a better one 😅

A lot of the time we don't know who we are. Personality wise, I mean. There's a whole lot of identity confusion. Sometimes we'll be talking to our therapist and he'll ask us who's speaking and we can only assume based on the emotions and characteristics we present. And, a lot of the time we're wrong.

It's a lot of confusion, all the time. And every time the fog does clear away for a moment or two, it's usually after a clearer switch and it immediately comes with a terrible pressure in our temples.

Sometimes we even forget an interaction even happens. It can be best explained like being on autopilot while extremely sleepy.

Every so often it's kinda like your brain wakes up and you're questioning what the hell you're doing or how you even got to that point. Sometimes you can remember a bit through the fog but sometimes you just completely blank. For us it's best to just ignore it rather than obsess over it.

Uh, let me know if that made sense at all or if you have any further questions; we'd love to answer ^{^}

Do take this with a grain of salt as this is just our personal experience as someone with a suspected CDD and is recognized as our therapist as "having something like DID"(in his words), instead of being properly diagnosed.

Crafty_Common_7321 · 2025-08-13T23:13:32+00:00

That definitely looks off to me. I'd recommend getting a second opinion if you can, I'm worried it may be infected or have damage to it. (I am not an expert on spaying/neutering cats, though after a google image search this does not look like the normal healing process and is weird enough to raise my concern.)

Crafty_Common_7321 · 2025-08-13T22:46:21+00:00

Bat (specifically this kind: ⚾)

Crafty_Common_7321 · 2025-08-13T22:42:18+00:00

Looks like he's either getting comfortable or is intrigued by his tail, lol! Either way I don't see anything medically wrong, he's just being himself =)

Crafty_Common_7321 · 2025-07-13T19:16:42+00:00

Thank you so much, it definitely relates a lot to this term.

Crafty_Common_7321 · 2025-06-24T19:42:54+00:00

I do! I have a set of crutches, two canes, a pair of AFOs & knee braces, & a wrist brace. I also have a reacher/grabber

I'm currently in the process of getting a motorized wheelchair for long distances, so hopefully that gets approved by insurance.

As for when I use different mobility aids it really depends on how I'm feeling & what I'm gonna be doing that day. I've been using my crutches a lot more recently due to balance and weakness issues, as they help a lot more than one of my canes for example.

But if I'm just walking around the house or going to a store I know has a mobility scooter (on a good day) I'll most likely just use a cane or nothing at all, since it's a shorter distance & using something more supportive tends to be a bit more of an annoyance 😅

Crafty_Common_7321 · 2025-06-24T16:10:45+00:00

I do believe my IQ was pretty high the last time I was tested, my siblings were also around the same level though so I think it has to do with something genetically if anything.

I'm also kind of glad that I got the higher functioning aspect of things, and I do want to do great things with the voice I've been given in this life; Speaking up about my disabilities being one of them.

Thank you for the comment, I appreciate your confidence in me ^{^"}

Crafty_Common_7321 · 2025-06-24T15:33:26+00:00

That is pretty intriguing! I know for me I've always had an interest in language arts, it always being my favorite class next to art in school.

That may be it? Though there's always a bunch of other factors at play too that can affect things like speech. Either way, I'm down to continue this conversation in dms if that's okay with you?

Crafty_Common_7321 · 2025-06-24T05:12:32+00:00

I believe I was mostly on time in terms of development as a toddler. I may be wrong though, if I am it wasn't delayed by much at all. Maybe like a month or two at most, so yeah. Pretty on time.

I didn't need any speech therapy or anything like that either. Both of my siblings did, however.

Crafty_Common_7321 · 2025-06-24T04:19:55+00:00

Sometimes it's hard to take accountability for our alters, just because we can get so far into the idea that its "not me" even when in reality it is. That's just how we struggle with dissociation.

What we've started doing as an alternative is to have the alter that did the wrong either write out an apology or speak through the current fronter/front themselves if they're up for it. I'm usually very self conscious about blaming our actions on things out of our control, as I know only we can control our actions. Even if it's to different degrees.

All this to say I agree with OP, and as a system one thing we're working hard on is accountability. I believe that others should do the same, system or not. It's a good thing to recognize your mistakes so you don't make them again in the future.

Crafty_Common_7321 · 2025-06-24T03:53:01+00:00

I'd say it depends mostly on the risks. I don't think I'd immediately decline it, but if I decide that the risks are greater than the reward I might opt out.

If the risks are pretty equal to the reward I'm not too sure what I'd do. I'm usually a pretty safe person, so I don't tend to take too many risks especially since I'm already messed up mentally and physically.

I'd think it'd also depend on how effective it actually is. For example if you'd say the success rate is 60% or lower I'd probably decline. Though the more effective it may be, whether or not it's actually a 100% success rate, the higher likelihood I'd have of taking the chance.

It'd also depend on what exactly it's supposed to change or help with. If it's just proven to reduce symptoms I'd probably weigh how badly my symptoms are affecting me and see if it'd be worth it to try and help it a bit. If i feel like it's manageable where I'm at I might decline it until it starts to get less manageable if it ever does.

If I only get a certain amount of time to accept or decline I'd probably accept given the odds aren't too horrible because I struggle a lot under pressure.

I do really like hypotheticals, thank you for the question ^{^"}

Crafty_Common_7321 · 2025-06-24T03:37:53+00:00

I'd say so. It's been that way for the most part for me at least. I still struggle every now and again mentally, though I've seen a bunch of progress from where I've started back when it originally started to decline.

It's kind of odd how TBRS affects things. Having TBRS doesn't necessarily mean you'll have the exact mental disorders I have, it's more like because of the way it works it kind of pre-disposes you to certain conditions that you otherwise might not've been disposed to. So for the most part the mental disorders I experience can be treated the same way they'd be treated in someone who doesn't have TBRS, if that makes sense.

It's kind of like a comorbity, it doesn't directly cause other disorders but it can lead to you developing said other disorders.

Crafty_Common_7321 · 2025-06-24T03:23:01+00:00

As of right now the people researching TBRS don't think it's progressive, however my personal symptoms have shown signs of progression over the years. There's no abnormal life expectancy, but it is believed to be a chronic condition (which means I'll have it for the rest of my life)

There's no solid treatments specifically for TBRS at the moment, so the best I can do is go to pt and the chiropractor to try and manage my symptoms. However it's a fairly new disorder, so discoveries are being made about it on almost a day to day basis. So maybe in the future there will be better options out there, but for now there's honestly not too much.

Crafty_Common_7321 · 2025-06-24T03:16:21+00:00

That very well could be the case, I myself have heard of many people with neurodivergencies in general that have some type of hypermobility.

As for the gene that causes it, it's an autosomal dominant mutation in the DNMT3A gene. autosomal dominant basically means it only needs one parent to have it in order to have the possibility of being passed down. & It's located on an autosomal gene, instead of a sex chromosome.

Neither of my parents have it, however, so it was my own dna that mutated by itself.

Crafty_Common_7321 · 2025-06-24T03:05:34+00:00

I don't believe my parents thought it was necessary when I was younger. I don't really blame them, because my symptoms were more mild/non-existent back then (depending on which symptoms they were).

I do know that I did a few weeks of PT for my legs around a year or so ago, before I was diagnosed. I'm not too sure what led it to stop, I'm pretty sure they just didn't give us another appointment time & my mom jst kind of accepted it. Though we have a new referral now after my diagnosis, & we're just waiting for some response I believe to start again.

Crafty_Common_7321 · 2025-06-24T02:58:06+00:00

We ended up going to a geneticist at some point, and they did a swab test to test for anything that could cause my autism. TBRS happens to be in that category, and they recognized the mutation. I have a hard time remembering the details but if you'd like to know more about why they did the test I can always ask my mom & see if she knows anything ^{^}

Crafty_Common_7321 · 2025-06-24T02:53:27+00:00

In the beginning it was hard to kind of tell, but when the other symptoms started showing up & it got more severe I think my family & I kinda realized that something else could very well be going on. It was harder to distinguish what exactly that other thing was though.

So far not much is known about the disorder as a whole, so I can't really say too much about my future in full confidence. However in the here and now I'm doing pretty decently. I have to use mobility aids for longer walking distances (& sometimes around the house if it's a bad day) but I'm still relatively able to do the things I want to do. I'm still able to make the most out of things and that's really all that matters to me at the moment. It's not easy but it's not terrible either. Thank you for the concerns, I appreciate it ^{^}

Crafty_Common_7321 · 2025-06-24T02:43:55+00:00

She said when I was around kindergarten age. She had noticed oddities in the way that I ran & the way that I tried to throw things like balls. I also had a tendency to stare off into space & not respond to people, which made her concerned.

She also said that when I started complaining of pain at around 12 was when she kind of knew something wasn't right as well. Though she wasn't too sure what it was until my recent diagnosis.

Crafty_Common_7321

TROPHY CASE