Why Is high wind warning Trending Today?

Another child would put them over the edge. If Daisy were to pass away from her condition (realistically, their life spans are shorter and seizures can be life ending), they would divorce. They are co-parents at best. There isn’t much of a marriage, as they do not spend time together…at all. (according to what was written)

It’s definitely a really sad situation. I suspect that their relationship wasn’t in great shape before they had a baby, and that the challenges of their daughter’s conditions completely destroyed it. As a parent of an autistic kid, I definitely understand the reluctance to have another baby. My wife and I decided not to rush into having a second kid, and eventually that became “one is all we’re having”. And our kid is able to be in regular school and such, but the demands of their therapy and whatnot was just too tiring.

There’s really no way to tell how their marriage was pre-kid. They could’ve had a basically perfect relationship. Raising severely disabled children is hard, especially when there’s a good chance that their lifespan is shortened by their disability. You hear all the time about parents getting divorced after a child’s death. Trauma and grief all tied up with this one person who used to mean everything to you, but now just a reminder of what you lost. It sounds like they’re doing their best, but their coping mechanisms are just completely incompatible.

You’d think that even if they lack empathy or common sense, those commenters might’ve come across one of the many posts by/about “glass children” (kids whose sibling has lots of medical/care needs) – they crop up regularly in a bunch of different subs, and pretty much reflect exactly what Sally & Jim said: it’s not fair, and it’s an extremely high burden to put on a child,, on so many levels. I really gotta respect them for deciding not to have another kid in their situation, even though it sounds like they both kinda want one.

Also, it’s weird to assume the other kid would just automatically be born with an able body and an able mind. Like what if they had a kid with even more profound disabilities? What then?

Very likely those would be the first to condemn them when the second child grows up to be a caregiver.

Most people have never dealt with severe disability and it shows. They just want to call people who actually struggle through caretaking and the impact it has on their lives ableist and then move on feeling righteous about themselves.

Someone who has never done any kind of nursing-type care for someone who isn’t ambulatory or has very high needs has no idea how much work it is. It’s a shame that such roles in nursing homes are usually minimum wage. It’s hard work, often around the clock, and with a certain kind of don’t screw up pressure more than normal parenting will have. I get people dreaming of the movie version where every day has the heartwarming moment where mom and child hug and make loving eye contact with uplifting music in the background. The reality is more like oh great the stoma needs cleaning again and everything has to be sterilized and reset wtf again? Oh we’re out of Hibicleanse, great. It’s work, so much work.

And the parents doing it are often untrained, unless they were a healthcare worker prior to having the child, and either still working full time or had to give up their job and a significant portion of their income to care for the child 24/7. That would take a massive toll on anybody’s psyche and frankly I think it’s damaging to just scream ableism and evil at any parent of disability who expresses regret or burnout. Society is all for supporting mental health and being our true, authentic selves until it’s uncomfortable to witness.

Bingo! I personally have a hard job with a lot of negatives. I have no problem telling people when I’m burned out or need a break or a moment and my whole family gets it but if a parent says the same thing it’s taboo. Or a caregiver to someone with needs? I’m not noble or a “hero” or anything special at all. I’m an ordinary human doing the best I can with what I’ve got. We should all respect that and not expect anyone to be superhuman.

Likely doesn’t help that people read it and assume whilst severe it’s still one where they can relate to the level as someone on Reddit and say well I was a disabled child and my parents thought that and it’s fucked! When it really seems like a situation where Daisy will never be able to be doing what those projecting can. It’s just really shit for everyone. She won’t be getting the best care and support she can because they’re understandably burnt out and can’t afford professional support. They’re crushed and exhausted and trapped in a life and marriage that’s become a job more than anything.

I know this isn’t autism, but I saw a really interesting interview with a physician who was also the parent of a high support needs autistic child decrying the autism advocacy movement because so many people at the head of it had no or low support needs and were making demands that would have hurt her own child in the name of ending ableism and granting autonomy. It all sounds great in theory, but evidently one of the things some autism advocates were fighting for was allowing kids to elope (wander) and making it somehow criminal for parents to put a tracker on them or lock the house. I’ve worked with high support kids who have that trait and they have no sense of self-preservation, they literally just run straight into traffic. But all good because they’d have autonomy, I guess. Absolutely. The parents are in a living hell and their best hope, which I’m sure plenty of people will also love to guilt them for, is placing the child in an assisted living community when she reaches 18 and trying to recoup some semblance of a ‘normal’ life. The saddest part is that Sally is one of the lucky ones because in so many of these situations the husbands just dip and start a new family.

My son used to elope and he’d head straight for bodies of water or parking lots. Sometimes I’d let him elope from parks and follow him to see where he’d go and it was really rather amazing how he could find bodies of water I didn’t know existed. He’d walk straight into bodies of water despite not being able to swim. I’d pull him out and he’d walk straight in them again, like being in a trance. Many autistic kids die from it.

There were swamps or some kind of marshy area, I don’t really know how to describe it, behind the school I was at and a major road right at the end of the driveway. A few of the kids eloped but one 6 year old in particular was a problem because he was very fast, very small, and totally non-verbal. Invariably, every time, he’d head straight for the road or the marsh. He also couldn’t swim and he had no awareness of or care about traffic. His mother was terrified bringing him anywhere because you literally could not let go of him or keep your eyes off of him for one second.

Luckily my son didn’t run when he eloped, but a huge part of therapy was getting him to hold my hand since he used to try to escape in parking lots. He stopped eloping for a bit, and I thought he’d grown out of it, but about three years later, he eloped again. I asked him what was going through his mind, and he said he wasn’t trying to get anywhere in particular, he was just so deep in his thoughts that he wasn’t paying any attention to where he was going. Luckily, a mother saw him and realized something wasn’t right, and made him return home with her following, but I wonder where he would’ve ended up. The mother was super judgmental towards me. I was so flustered because he hadn’t eloped in years and he went in the complete opposite direction of where I thought he would ever go.

He probably followed his nose. There’s a molecule associated with water that apparently we can pick out at one part per billion. Makes sense that we evolved such sensitivity. (Sharks scent out blood at one part per million.)

I was gonna say, my ability to find a body of water by scent and a feeling in the air is quite good. I wonder if these kids are in some way automatically following that instinct, it would’ve been needed for survival not too long ago!

“It all sounds great in theory, but evidently one of the things some autism advocates were fighting for was allowing kids to elope (wander) and making it somehow criminal for parents to put a tracker on them or lock the house.” This would be straight up neglect if it was a neurotypical child so there’s no way any sane person would advocate the same for a neurodivergent child. That being said, I’m a mom of a child with autism and the number of people who call me abusive when I say we have an ABA therapist is staggering. I know the history of ABA, so I would never dismiss the thoughts or feelings of someone who went through abusive treatment, but it’s come a loooooong way and many modern providers absolutely do not subscribe to past, abusive tactics. That was one of the things I made sure of when looking for a provider (ours is owned and run by a person on the spectrum). But no matter how I try to explain it (no punishment/reward tactics, no exposure therapy, no force feeding, no suppression of stimming, no encouragement of masking, etc.), I still get called a child abuser because I want my daughter to be able to brush her teeth, use the toilet, get vaccinated, etc.. without having a complete meltdown out of fear and frustration. Apparently, I should just let her eat whatever she wants, go where ever she wants, and refuse whatever she wants because doing otherwise makes me an abuser.

This is a world I work in but typically I don’t get to see kids improvement long term. The one example I do have is my friends son. When he was 3/4 this kid was absolutely miserable. He couldn’t talk, couldn’t really do anything on his own, daycare would call every other day for him to be picked up. It was miserable for everyone. At that time I think we were all terrified this kid would never have a life of his own and would end up in a care facility. Lots of services and years later and he’s this little chatterbox that will engage with me on the phone (only one of her kids that talks to me lol), he is the one that reaches out and tells me about his day, he’s doing great in school, is now being incorporated into general education classes. Of course he struggles, the school has been so shitty about understanding that he’s just masking and still needs his coping tools (just because they aren’t seeing any behavioral issues 🙄). But generally we have come so very far. But if you think a kid is better off completely non communicative, tantruming all day everyday, then honestly I have serious questions about your ability to have any kind of empathy. I constantly have to remind parents that kids are not happy when they’re tantruming. Like of course it’s annoying to others, but the kids not happy either!!

As an OT, there’s a lot of middle ground between “let my kid do whatever she wants and have meltdowns when brushing teeth” and ABA principles. The fact that ABA practitioners need like a 6 month course to get certified to work for hours a day with high needs kids and insurance will cover it, vs having someone with a literal master’s degree struggling to get approved for 1hr/week of evidenced based intervention is more an indictment of the power of lobbyists than it is a testimony to the efficacy of ABA.

ok i’m lost could you ELI5 pls

That’s absolutely insane logic. The number of autistic kids who elope and then drown—bc autistic kids are so often drawn to water and also can’t swim—is staggering. My daughter used to elope when she was 3-4 years old so we had to put deadbolts up high on all the doors that led outside because she would legit just take off and run. She did it in parking lots, too—to the extent I couldn’t take her anywhere without my husband. It took two of us to keep her safe. It was terrifying. Thank god she no longer does that…but you’re right, if we let neurotypical kids just wander off whenever they wanted, it would be abuse.

I remember back in the 80s when clueless do-gooders pushed for special needs children to be placed in regular school, my aunt was devastated and spoke out against it as a terrible idea for all the children involved. As is often the case, do-gooders who think they know better than everyone else ignored everything the people most effected, the people with first hand experience, those who know it best because they live it, had to say. They pushed a change that ultimately led to making life infinitely worse for all children. Now no child’s needs are met, every child suffers. It is good to recognize we need to do better and institute changes but those changes must actually benefit those involved.

The problem wasn’t just the do gooders but how nuanced this has to be and how impossible it is to put that nuance into law. There were a lot of kids who would have been at least OK in a normal classroom with some extra help (some examples in my mind are high functioning autistic kids who may need a 10 minute break if they are feeling overwhelmed but can generally sit in a classroom or a kid who is in a wheelchair but is able to mentally keep up with classmates, etc.) Too many of them were getting shuttled off to special needs facilities and basically forgotten. At the same time, there are plenty who need so much on hand help that putting them in a regular classroom was terrible for every single person there. But how do you judge that? I had ADHD which wasn’t diagnosed until I was an adult. I basically sat in every class in high school reading a novel while listening to my teachers. I mean, just blatantly had my book sitting on top of my textbook, but at the same time, I could and would answer questions and ace the tests. If I had been diagnosed earlier, would I have been sent off to a special needs school? I was obviously a distraction in the classroom (trust me, my classmates let me know it was weird that I read all day long during class). But a special needs school would not have been good for me. Along with that, who gets to determine what level of special needs qualifies for a separate facility? And how do you convince Sally, the mother who tells you that her child has a superpower rather than a disability, that her child who can’t properly feed himself and communicates through grunts that the best place for them would be in this facility? The problem is always in the nuances and the fact that our laws can’t take every scenario into them.

My kid had a really strong tendency to act like the other kids around them. So when they were in a regular classroom setting, they tried to be like the other kids. But put them in a room full of kids who were unable to control their behavior, and they were quickly all over the place. Fortunately the school system had some in-between setups that gave us the supports that were needed but kept our child in a more typical classroom.

Wow… That is wild 😅 In my country if you are intelectually able, you are allowed to go to regular school but can get a “Schulbegleiter”, so an adult who accompanies the kid to classes and advocates for the kid and makes sure that the needs are met. If however the kid is simply incapable of going to regular school, we have specialized schools for special needs kids, and while I do think that inclusion as much as possible is vital, I also think it doesn’t make sense to make everyone’s life miserable by playing ostrich and denying the reality that some people simply need more care and a slower tempo than the majority and that regular school simply can’t meet those needs.

Mine didnt even start talking in any words till almost 6 and even then most of it was pointing at the communication posters. Like Mines considered a little bit above low needs since was non verbal comlpetly till 6. Have them in a great program through the school district. 12 now, knows tones of words but still doesnt use full sentences, Still struggles with regulation and overstimulation and other issues. But its why their IEP is set so that should they elope the staff if free to get them. Now in preschool and kindergarten, they and another student, let me tell you they were houdinis. Had to put up child gates over the windows cause they figured out how to unlatch them. Had this been in place you bet my kid would have left. I have a tracker on them (teachers know as does my kid) they dont have that self preservation instinct and usually are more in their head so dont pay attention. One example: I was at work and my mom was watching them. They managed to figure out the child safety lock and booked it out the front door. Right across from us was our parking spots and a fence with an eight foot drop into a swamp. They climbed over teh fence and were just giggling. They thought it was funny. Meanwhile all my mom thinks about is that if they step even 6 inches to the left they will fall. Kid didnt care and my mom and our neighbor coaxed them back over and got them inside. They were 5 non verbal and had no care of the dangers. Its was a sensory seeking thing since they loved the water from the swamp and to be fair the area was really pretty. But all it takes is less then 2 seconds and most kids, especially ND, and their gone. I have had to book it in barefeet after mine plenty of times. Luckily routine, boundries, and lots and lots of patience has helped but there are still good and bad days. I am grateful and thankful to those who help so that they can thrive as best as they can. So should get paid so much more. Now mine is 12 and almost 5’4. about and inch shorter then me so can be difficult to wrangle now.

Years ago there was a case where a family who had autistic kid who liked to play hide-&-seek went to Crater Lake National Park late in the year. They parked on the rim road & the kid immediately took off, obviously playing his game of hide-&-seek. Parents could not find him, so a searching party was organized. What complicated matters was that loud noises frightened him, so the searchers had to practically whisper his name, telling him he won the game. The searching party never found him. Having some kind of tracker on him would have been ideal, but things like AirPads were not widely available then. I never heard if they found his remains.

I looked the story up out of curiosity. They still haven’t found his remains and his parents have divorced, only dad was on the trip and, as you said, he had a tendency to elope to play hide and seek or look for stones with gold in them. The silver lining is that his mum came up with a way to help prevent it from happening to others: >She created a group called Autism Anchoring Dogs, which has paired mostly Newfoundland dogs with 38 children with autism. >”I needed a purpose after Sam,” she said, adding that she came across a study that showed how animals can benefit children with autism. “They can hold an anchoring position so the child doesn’t elope (run off). We’ve had a 100% success rate. Not one of these children have died and none of them have escaped to elope when using their anchoring dog.”

i blame tumblr users in the 2010s who loved to collect mental conditions like pokemon and call everyone else ableist and also influencer moms who use their disabled kids for likes and claim they “wouldn’t change a thing” about their “blessing”. we’ve gotten to a point where people who aren’t over the moon about having a severely disabled child are seen as monsters who just aren’t trying hard enough to help their child succeed.

It’s a lot more complex than that. Previous generations of disabled children were institutionalised and often forgotten about, and the abuse in those institutions was often horrific. The knowledge of that history has made a lot of people afraid to put their loved ones in any kind of facility. At the same time, society has gotten progressively more atomised, with fewer people living near their families, and the basic cost of living has skyrocketed. That makes it insanely difficult for people to get the help they need.

Yeah. They weren’t to be seen or heard. Unfortunately, many weren’t institutionalized either – they faced all that at home instead. Today’s situation where we’re scared to get someone help is problematic itself, but at the same time we’ve generally improved significantly as well. Mental disability still faces a lot of prejudice, but significantly less enough that people are much more comfortable seeking help – even if much of the prejudice is still blocking actual help. :I

I worked with high support needs non verbal autistic kids for a period of time (and have a severely disabled sister but not with autism). It was absolutely soul crushing. Most of the kids showed very little awareness of their surroundings, were violent, needed to wear diapers and be changed by two people because they would try to get into the toilet/smear things on the walls, food aggressive and with limited diets, prone to socially unacceptable behaviors in public (taking off clothes, eloping, touching others, stealing food, masturbating and so on), etc. The parents almost always looked completely miserable and most of them were divorced, in a lot of cases you would ever only see one parent (mom) because the other had ditched. I was only doing it for a summer at a public school to make some extra money before grad school started but everyone else I worked with was a trained professional with 4+ years of experience and they were all looking to leave the profession or transition to admin. It was emotionally, physically, and mentally draining and felt even worse because after a weekend or a month of summer break any skills they’d learned during the year were gone and disruptive behaviors were right back. One of our aids lost her big toe nail from a 7 year old who was taller than her stomping on her foot. Another had a massive scar on her arm from a child scratching her so deep she had to go the ER, a wound that subsequently developed an infection because the child had feces under her nails. Multiple had been stabbed with scissors, gotten concussions, almost gotten hit running into traffic after kids. People die or sustain lifelong injuries working those jobs and they can, at least theoretically, choose to quit. Parents can’t. But god forbid one offend the Tumblr brained or imply that such a life is anything less than a pleasure.

I feel for all three of them. Daisy is treated as a job, and Jim and Sally are more co-workers handing off a patient to each other than a family. But also. They are getting so little support, OOP talks about her daughter having two very involved grandfather’s and a grandmother(edit: alongside her uncle jim and profession care). But 2 of them are her sisters parents and they can’t help with Daisy, and OOP can’t either. I’m sure some of Sally’s cold is from OOP getting so much support while having an “easier” child. There are legitimate reasons for it, but she must feel so alone.

Sometimes that’s just how it is. And it’s awful. I work with kids like Daisy. Some need 24 hour RN care, and parents have to fill in pretty often. A good chunk cannot communicate in any meaningful way. Functionally, it’s so much work with so little reward. Not only is it so much work and worry, it’s your baby who is suffering. And then there’s crushed hopes for your child and yourself and so much unrelenting exhaustion. It does not end until it does and that is probably the worst tragedy a human being can experience. No one can understand. I know I sure don’t, even though I am working for them and know more about needs and structural supports than most people who aren’t the parent of a medically fragile child. Even emotional and social support can feel worse- it emphasizes how different life is from what had been hoped for. I have a few families where they are fortunate enough to have gotten a good nurse who had been with them since the beginning and is almost like a co-parent.

Parent of two nonverbal kids here. What struck me as the most sad is that Sally is doing anything and everything she can to make the pain go away, while Jim has (relatively) flourished in a family relationship with OP’s daughter. My reading is that Sally is feeling a lot of resentment toward Jim for establishing a healthy adult-child dynamic with his niece. Sally, blinded by her bitterness, is unwilling to reinforce her family connections and would rather spend the time partying and drinking.

The one I feel the most awful for here is Daisy. Maybe Daisy isn’t a kid who can express enjoyment or happiness. We don’t know, since OOP didn’t share (or possibly doesn’t even know). But if she’s *conscious*, even just to the level of an infant, it’s so sad that her parents view her as only a burden and not as someone who can bring any joy to their lives. Not like that Holland crap everyone passes around – it sucks to have to grieve every day for the child you dreamed of having, to fight for services you never heard of before, to be personally acquainted with the emergency transport personnel from the children’s hospital – but it doesn’t need to be a tragedy 24/7. There are still little things to be happy about. They could probably be going out and doing things, even if the doing wouldn’t look like how they imagined and wanted it to.

Knowing how difficult it is to leave the house with toddlers, I don’t blame them for opting to stay home. Their daughter can’t walk, needs to be picked up, and they’d probably have to haul around a ton of supplies. They’re already burned out so there’s no sense caretaking on hard mode. It’s just too exhausting. Plus, the mom is triggered by seeing other families, so continuing that spiral isn’t a good idea.

\> The one I feel the most awful for here is Daisy. Maybe Daisy isn’t a kid who can express enjoyment or happiness. We don’t know, since OOP didn’t share (or possibly doesn’t even know). But if she’s *conscious*, even just to the level of an infant, it’s so sad that her parents view her as only a burden and not as someone who can bring any joy to their lives. Yep, I agree. I feel for all of them, but I’m severely disabled and living my life as such a heavy burden is incredibly hard.

I kept thinking of a post a while ago where the mom of a disabled child was venting. It was clear she was worn out and frustrated but it was also clear she and her husband deeply loved and cared for their child. And their child was always happy. And I really think it’s because all that child knows is they’re loved and they spend everyday with two people who love and care for them. And it made me wonder what kind of home Daisy lives in. I hope she can just feel love and support. Whatever else happens in that house.