I think there there is an inherit disadvantage in not being typical

That is what I said. I ascribed no value to being atypical. That’s you and it might reveal what you think.

I read your link and it’s basically like “I mean that was bad then, this is now. I don’t have any data to prove it, but left handed people totes don’t die younger” C’mon, that’s a ridiculous article that’s all conjecture about how it used to true before that left handed people died young, but now it’s totally different. They don’t provide any hard evidence that it’s different, but it totally is!

Let’s say you’re right because honestly I don’t feel like arguing this point, but it’s not my greater point at all. Let’s say that left-handed people suffer no physical afflictions from being left-handed. Very cool, except every left handed person I know has suffered from being left handed and had to “mask” and accommodate the world being right handed. My point is that realistically, you cannot be accommodated all the time 24/7. It’s all great and shit to say that you should be accommodated, but in reality that doesn’t happen. Sometimes it doesn’t happen because people are callus but sometimes it doesn’t happen because it’s not actually a thing that is possible.

For example, realistically when I was in grade school and the internet didn’t exist how was someone going to accommodate my visual and auditory processing issues? When I was in college, most of the US had dial up and smartphones weren’t ubiquitous. How was I supposed to be accommodated and also lead an independent life because those were my choices. Being shadowed by an able bodied person or sucking it up. There was no actual way for me to be accommodated beyond the experimental therapies that I have no fucking idea how my mom found before the age of the internet.

Being typical is easier. If you are 7ft it sucks. if you are 3ft and an adult it sucks. The world is not made for you. And you have to pay in ever time or money to get a great many things that other people effortlessly get. I would wish that on my kid. I don’t care whatever fucking super power you think she’ll get. I want her to spent her time at the park with her friends instead of at doctor’s offices. I want her to hang to go to summer camp without me worrying if whatever aid will quit and then she’ll have to come home. I want to spend my money to sent her to her fancy ass school and not worry that they’ll tell me that she can’t have the best education because she’s too much trouble and she can go to the public school where she’ll be accommodated all day long and isolated and miss out on so much.

Fuck that. I want my kid to be typical. I don’t want her to need any kind of accommodation. I don’t even want her to need glasses or braces or any other acceptable kind of accommodation because that’s living life a little harder and what parent wants that for their kid? That’s my point. I don’t want it to be harder. And when you need accommodation, it’s harder. Even something as minor as needing glasses for the rest of your life is harder than never needing them at all. If you can’t understand that point, then you’re just delusional.

There are a lot of symptoms attributed to ASD on the DSM-5 that you could inflict on any neurotypical kid with enough trauma. I think we need to pay attention to the possibility that a lot of autistic kids are turning out disabled not because it is the natural development of their phenotype but because they get raised in an environment too disruptive to their needs even before they’re capable of expressing them.

I think there is some merit to this, just from observing people parent NT children. Many parents don’t seem to think of their children as people and aren’t willing to be inconvenienced in any way for them. Trauma and neglect definitely don’t do any child favors. I don’t think that 100% catering to a child doesn’t them any favors either, but compromise is necessary for living with literally anyone.

Please do not do this shit. Not being able to see is objectively a disadvantage. You could find or create environments where the harm is reduced or even negated, but there’s going to be virtually none where it’s good without buts. It’s great that some communities of blind people feel proud of their own culture, but many of those are cultivating this extremely toxic tendency to disavow the possibility to cure blindness even for those for whom it is possible because they dogmatically latch onto an identity.

Equating autism and blindness in this way gives a legitimacy to these attitudes that they do not deserve and is fairly disingenuous about what autism is.

I think there there is an inherit disadvantage in not being typical. I’m not ND, but I do have several invisible afflictions that doctors acknowledge, but don’t have a label for because well premies should be glad to be alive. I can’t change my many many afflictions due to having been born early. It definitely was and still is a disadvantage and there is no cure. It’s just how I am. I won’t say that there aren’t toxic people in let’s say the blind community who cling to their afflictions, but I think it’s important to know that sometimes you don’t get a cure. You’re just how you are. Premies born after me don’t suffer the same disabilities as the premies I know who are my age because they get better care in the hospital and outside it. Great, but that does nothing for me who has perfect vision technically, but can’t see so many things. or a great many things I’m just stuck with as an adult.

I’d like my kid to be typical. I want to be typical even now. It’s easier. She’s left handed and that sucks. It’s harder to be left-handed. If it were possible to give her a pill to make her magically right-handed I’d give it to her. As it stands, her chance of death is elevated for no other reason than she was born left handed. Accommodation is cool and all, but all of society has an assumption about handed-ness. This neurodiversity. I wish I could give her a pill to make her neurotypical. Shit I wish I could take a pill that could make my brain process things right like it would have if I was physically okay at the right times. But… I don’t think that will happen for me or her and I think it’s okay to accept that. It’s okay to take a fix if it ever happens too.

I feel like what’s wrong is that we think that even mental illnesses need fixing. There are some mental illnesses which can be fixed. They are temporary state in the same way that a cold is a temporary state. However, some mental illnesses are just how you are. You can take steps to mitigate it like the way that someone who can walk uses a wheelchair, but fundamentally it’s all just life-aids, not a fix. If you have clinical depression, those pills are just life aids, they are not fixing anything. It’s completely unlike when I fell into a depressive episode once. The pills fixed me because for me it was a temporary state. after a month I could just walk away. I think that’s a difference that needs to be understood. A person who broke their legs using a wheelchair is completely different than an amputee using a wheelchair. One uses the wheel chair as a temporary aid until they are “fixed” and one has an eternal state that will always need the aid.

I think it’s unfortunate that people feel shame about needing life-aids permanently or temporarily. I was born physically disabled and I lean on any crutch I can. I really think this is why I’ve been able to effortlessly support my child and she doesn’t feel any kind of way about her condition with autism. I’m always saddened by parents who refuse to give their kid life-aids because they want them to be “normal”. Even before I knew my kid had ASD I offered her anything that would aid her because who cares really. I want her to be happy and successful and if you complete the race in a wheelchair, you still completed the race which is more than some people can do even able and with a wheelchair.

I thought you guys would find this article interesting. I think the answers are thought provoking for anyone who has any kind of invisible struggle.

I thought you guys would enjoy this story about me and my daughter.

That really sucks. Hopefully there will eventually be something to help in a useful time frame.

Honestly, what I did was Google “city Name events” and have a browse about whatever came up. Me and event Brite are besties and I have curated a bunch of Facebook pages to follow. There’s a bunch of local stuff to do for kids.

When my kid was very young she mostly liked looking at things, so we went to farmer’s markets, festivals, craft fairs. Anything where there was a lot to look at. Picking strategic times to go ro the park is also great. People take their young kids around 10am. School aged kids pop up around 4 or 5pm. In between that it’s really random. If you can keep a schedule you’ll run into the same parents over and over.

My kid is 4 and trustworthy out and about, so mostly we just try random things. I’m new to the area, so it gives me an excuse. Maybe we’ll hit up a skatepark (she loves her scooter), maybe a new restaurant, maybe we’ll just walk around an area or check out a festival. I think I realized when she was 3 that there were very few venues that are explicitly not for kids so eff it, let’s check it out. How long can a toddler last on a museum? My kid, about an hour which is pretty good.

Along the way I teach her how to operate in adult spaces and how she can have fun even if it isn’t specifically for kids. We’re gotten to the point where she just tells me she’s bored and wants to leave instead of screaming lol

Report him please. He’s gonna cripple or kill someone.

Also what I use for fatigue is a supplement called coq10. It’s not magic, but it does give me a few more hours of energy before I can’t move and makes me feel almost normal waking up. I don’t know if it will work with your condition, since it mostly helps where your fatigue is caused by your body spending a lot of time healing itself, but maybe worth a shot?

I think you need yo file a complaint against scumbag doctor. The more you write, the more I think he needs some evidence stacked against him for the day that someone can bring a malpractice suit against him. Filing a complaint against him doesn’t do anything for you, but it could help someone in the future.

I’m sorry you ran across the most douche-y of doctors

That all really sucks. I’m sorry.

For an unasked for suggestion, have you been tracking symptoms? I’ve found that doctors have a higher chance of believing you when you have logs. Probably wouldn’t have done shit with that scumbag doctor, but sometimes what can sound minor is alarming when you can prove how long it’s been happening.

It’s been a long road. I realized the first thing I had to teach her was the concept of a mistake because honestly most of the stuff she did to say sorry about wasn’t on purpose. She kicked me accidentally after all. So stared modeling the phrase “I made a mistake” and disconnecting that stuff like spilling water was worthy of punishment (which is my parent’s fault). So if she did stuff like that her “punishment” was just to fix it. clean up spills, pick up food you drop, etc. When you hurt people say sorry and say why you’re sorry. She’s ASD, so teaching stuff takes a long time, so it was a true victory when she did it.

My 4 year old apologized to me without prompting and it was a proper apology not just sorry. She got my attention and said “Sorry, I kicked you.” It’s the first time I’ve ever gotten a proper apology from her.

I’ll throw a link into the MS discord server I’m in. Couldn’t hurt

It’s unfortunately, but you have to be your own advocate. I do a lot of internet research for both me and my child. I spent 2 years listening to doctors tell me nothing was wrong with my child despite all the evidence I presented. It’s only by luck I got her into a trial where they had to test her and wouldn’t you know, she’s got ASD. For my MS I was very lucky. I was referred out to a neurologist who thought an MS specialist would find me fascinating. And he did. I have a very odd presentation of MS. Also for my demographic I’m a unicorn. I’m 100% healthy aside from the MS. Apparently, so many people in my demographic suffer from diabetes, etc that they basically can’t get trials going. I just know my doctor is waiting to ask me to join a trial lol. I wouldn’t say he’s hoping I fail my current meds so he can put me on something experimental, but he wouldn’t be sad.

I started my kid on a full sized bed and called it a day. That will be big enough for her to share with a friend and/or cousin until she’s an adult and out of my house. She slept wild in it at that age, but she sleeps mostly correctly in it now at 4. although dead in the center. Perhaps by 8 she’ll have a favorite side and the answer won’t be “why not both” lol

That sucks. Why does the rheumatologist get to overrule the neurologist? Isn’t Lupus in the neurologist’s domain?

Yes I’m hoping that everything stays stable. I have some aphasia, but no other symptoms. Hopefully a few word mix ups is all I ever have to deal with.

I think that communities like this are just slow. On reddit, I saw the most activity around articles surrounding the condition. You have to remember that Lemmy itself is just getting going. You just need to keep some activity here until you get enough people to make the community flourish. If when people find this place, they don’t even see posts, they’ll think the place is dead. It’s why I’m trying to find as many parenting articles as I can and post them on my instance so when the parenting stuff spins up, people will know I want to welcome them and I’m still here

Hello all! I’m Saplith and I’ve been diagnosed with MS for about a year. I’ve had it for about 1.5 years I think. My condition is stable after I got on medication and knock on wood it stays that way.

You could probably pair some grains, vegetables, and fruit with those beans? Sorry to ask, but why are you putting your one year old on a vegetarian diet, if you’re not on one? Generally speaking it’s best for kids to eat what you eat. For one, it’s just easier meal prep. For two, children are just more likely to try foods they see others eat.

A one year old doesn’t need a super structured meal. Some rice and a little fruit can go with the beans. I wouldn’t worry so much about filling meals as much as exposing your kid to as many flavors as possible before you find out how picky they’re going to be in a year. You have a higher chance of avoiding the worst of the picky eating phase if your child has a wider palette.

Oh no, I posted to the wrong community by accident. Sorry! Keeping it up since some people seem to dig it. I meant to post to !general@discuss.divergentparenting.space