Single working mom of a 4 year old with level 1 autism. I live in the US and have MS. It’s been a wild ride as a parent, but somehow I’m having fun.
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.
I found myself wondering what PCIT even is reading this. This was the only article that gave me any insight. It looks like it’s just a training course for authorative parenting. Or maybe I have a biased view of that parenting style since I have it lol
If autism is just a memory issue that would be huge. That would mean that we could come up with a bunch of therapies to help that might apply to everyone on the spectrum. Hell, we might even be able to help adults who are have severe autism. This might also explain why early intervention is so important. That’s when your breain is most flexable and open to change. As far as causes for autism, I think I like this one for its ability to aid ND people. Parents might even be able to help their kids at home without having to rely so much on expensive and scarce therapies.
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.
Wholly unsurprising, but very sad. I have to say I’m very shocked that Florida is in compliance. There are some shockers in all the categories.
Thanks for the rec. I’ll check it out.
The article focuses on this one little boy, but really this problem is systematic there. This is absolutely awful. What if a child with special needs was being abused? This situation proves the state doesn’t care about those kids and would have left them right where they were.
I get what this doctor is saying. There are some conditions like anxiety which fall into both camps of “curable” and “life long affliction” and being so accomodating is not allowing us to suss out which camp someone is in. I do think that this is largely an irrelevant distinction. Even if someone has a life long affliction, nothing is going to change that they should strive to remove as many crutches as possible. Being accomodated is wonderful, but we must keep in mind that sometimes that’s just not possible and kid should learn how to cope in those situations, or they’ll find themselves cut off from opportunities they could have had.
This feels like it slots right in with a study I read that said that remembering traumatic experiences is more harmful long term than the traumatic experience itself. Consider that study, I wonder if postive parenting works because it gives the child something positive to focus on when they remember a bad experience?
I would love it if this were something on the market. I worry a lot about my daughter’s mental health. She gets anxious easily and at the end of every school term, she seems burnt out. It would be good if I had something that could show me the build up, so I could alert her teachers or change what’s happening at home
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.
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 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.
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.
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.
I continue to be team file a police report. Try with the school, then if that fails file a report with the school against the child. The age is suprisely low in many states. I’ve seen it as low as 7 years old. You file enough police reports against a child in a school, and suddenly you’ve got a very good case to bring to the feds about the school and their negligence. For older children, like preteens, they can even be forcibly removed from the school because the laws they’re breaking. People can say you’re ruining that other kid’s life, but what about your kid. No one was worried about their life being ruined.