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Here ya go. Her youngest son, Silas has hydrocephalus, and I can't remember what the other boy, Rowan, died from exactly. I've never heard of what she was saying, but I remember she posted after Rowan died that it was detectable and they warned her against having more kids in a deleted thread.
Lily, her daughter, is normal as far as she states. Another regular baby that the only thing special about her is her brothers. Feel bad for her about that, she's always being compared to the others.
Wouldn't hydrocephalus show up in a ultrasound? Especially since since he's only two weeks and they're attempting surgery. She mentions it multiple times that she had a ultrasound, but if his head is swelling two weeks after his birth, like damn. Took Luna several months before they even noticed it, so what gives?Here's the Facebook. Seems like her oldest son had the same thing, judging by his skull
X-linked hydrocephalus immediately came to mind. This is often diagnosed by ultrasound before birth, is hereditary, and only affects males (which would explain why only the daughter was healthy). If the first child was diagnosed with this she knew there was a 100% chance of any male children being affected.
"A congenital, X-linked, clinical subtype of L1 syndrome, characterized by severe hydrocephalus often of prenatal onset, adducted thumbs, spasticity (mostly evidenced by brisk tendon reflexes and extensor plantar responses) and severe intellectual disability."
People like your friend's son who has DS with very low muscle tone usually don't live very long. Do they also suction him? (Just asking.) Chances are, he'll get pneumonia and likely die from that relatively early in life.
X-linked hydrocephalus immediately came to mind. This is often diagnosed by ultrasound before birth, is hereditary, and only affects males (which would explain why only the daughter was healthy). If the first child was diagnosed with this she knew there was a 100% chance of any male children being affected.
"A congenital, X-linked, clinical subtype of L1 syndrome, characterized by severe hydrocephalus often of prenatal onset, adducted thumbs, spasticity (mostly evidenced by brisk tendon reflexes and extensor plantar responses) and severe intellectual disability."
This is an example of why sex testing of embryos for IVF in these cases would be a good idea. You also see parents who are carriers for Duchene's muscular dystrophy do sex determination so that they can have daughters (and hopefully non carriers) or do genetic pre-screening of embryos before IVF.
It's not some nonsense "only wanting sons to carry on the family" it's "I don't want to give my sons a lethal and torturous wasting sickness"
I absolutely don't want sex selection to be acceptable under normal circumstances, I think it's a slippery slope tbh, but in these rare cases of medical necessity it should be allowed.
As far as I know they don't need to suction him, but he has previously been in hospital for pneumonia so seems like it might end up on the cards
This is an example of why sex testing of embryos for IVF in these cases would be a good idea. You also see parents who are carriers for Duchene's muscular dystrophy do sex determination so that they can have daughters (and hopefully non carriers) or do genetic pre-screening of embryos before IVF.
It's not some nonsense "only wanting sons to carry on the family" it's "I don't want to give my sons a lethal and torturous wasting sickness"
I absolutely don't want sex selection to be acceptable under normal circumstances, I think it's a slippery slope tbh, but in these rare cases of medical necessity it should be allowed.
Part of the reason the autism label has become so common or seems to be applied so widely or inappropriately is due to money, certain incentives and benefits which varies depending on the person.
In the USA you can get a SSI check for a kid if he’s autistic. In the past SSI kid benefits required pretty straight forward issues - kid was blind, required a wheelchair, had CF, was retarded, etc.. but since autism is such a grey area that is diagnosed via observed behaviors it was open season for shady or manipulative parents. Sadly, many of the effects of neglect and abuse can mimic some autism traits so it’s win win for shitty abusive parents just chasing a check. On the other side of the coin many parents who didn’t want the “mental retardation” label applied to their kid fought to have it diagnosed as autism - and it helped them get better therapy and schooling for their child as well. Many doctors went along with it knowing the kid would get better treatment in a autism program than what’s available to a kid Dx with mental retardation.
Teens and adults? If you get an autism diagnosis you get extra help in school, tutoring, more time for tests, more leeway etc.. In the adult world this can mean different accommodations in the workplace that wouldn’t be allowed without a Dx and some safety from being fired for certain things because discrimination can be claimed.
These are just reasons that the label of autism has been misused or misapplied in some cases which adds to the overall confusion on this absolutely huge spectrum of people that the label gets applied to - either correctly or incorrectly.
This is absolutely correct. Anyone familiar with the process of neuropsychiatric testing for children has interacted with parents, almost always mothers, who push and push and push for an autism diagnosis, specifically. There are lots of reasons for this, almost all of which boil down to having a "desirable" label. It's easier for this type of parent to accept an autistic child than one who is labelled "intellectually disabled". Additionally, it is an unfortunate fact that if you want your kid to receive therapy services through the public school system, they need an actual diagnosis, and as a general rule, there is much more funding available for programs for children with ASD than for other disorders, and often, these services are only available to children with an autism diagnosis.
Basically, it's advantageous to everyone except the kid to just diagnose ASD. The parents are relieved not to have a "retarded" kid, the clinician can make a diagnosis without having to dig too much, and the school gets more money. The kid is the only one saddled with a label for life.
It is disturbing how subjective some of the elements of diagnostic testing for ASD are. I think the general public has some expectation that the tests have objective criteria, but stereotypic language and behaviors are truly in the eye of the beholder sometimes.
I know a man diagnosed with BPD. It's very different from what most people think of when they think BPD, from the outside it just looks like serious anger issues. Maybe it just looks different in men.
There's this idea that men are more angry and violent by nature, so I imagine that a lot of mental issues in males fly under the radar, where they would otherwise be picked up in females. If a woman is acting erratic and getting aggressive people might assume that she has a mental issue, but if the same behaviour is exhibited by a man people just jump to the conclusion that he's a violent asshole.
Here's the thing that's been bugging me. These parents act like their disabled kids are angels, while the normal sibling is just there. Normal kids can be assholes, I'm not denying that, but seems like their comparing normal kids to their potato's who can't really do wrong.
Seems like they like their disabled kids more? Is it because they don't throw tantrums, and are easy to manage? The spuds aren't really kids in a sense of doing annoying childhood behaviors, but they act like their spuds are saints.
We've seen it again and again. Spuds are generally "baby-like" and these parents now have a eternal baby. Most people with babies get major attention.Not just that, but a eternal baby with health problems. Their normal kids will never take in this much attention ever and it seems like they know that.
Here's the thing that's been bugging me. These parents act like their disabled kids are angels, while the normal sibling is just there. Normal kids can be assholes, I'm not denying that, but seems like their comparing normal kids to their potato's who can't really do wrong.
Seems like they like their disabled kids more? Is it because they don't throw tantrums, and are easy to manage? The spuds aren't really kids in a sense of doing annoying childhood behaviors, but they act like their spuds are saints.
We've seen it again and again. Spuds are generally "baby-like" and these parents now have a eternal baby. Most people with babies get major attention.Not just that, but a eternal baby with health problems. Their normal kids will never take in this much attention ever and it seems like they know that.
Yeah people like Gwen and Kayli's mom definitely seem to enjoy the eternal baby/dress up doll bit and the fact that their spuds arent really capable of doing anything. They're the perfect kids for a narcissist.
Fundies get the added bonus that potatoes can't sin/disobey/be gay/reject religion/etc unlike normal kids. They're pure sinless BFFs with jesus.
Kids who are disabled but not potatoes seem to get treated differently. The exploitive mommy blogger types seem to love their disabled kids to the extent that they can exploit them. When the kids are difficult they shame them publically or just get rid of them like that one mommy blogger who adopted the kid from China. I'd imagine their non-disabled siblings are also treated like shit.
Yeah people like Gwen and Kayli's mom definitely seem to enjoy the eternal baby/dress up doll bit and the fact that their spuds arent really capable of doing anything. They're the perfect kids for a narcissist.
Fundies get the added bonus that potatoes can't sin/disobey/be gay/reject religion/etc unlike normal kids. They're pure sinless BFFs with jesus.
Kids who are disabled but not potatoes seem to get treated differently. The exploitive mommy blogger types seem to love their disabled kids to the extent that they can exploit them. When the kids are difficult they shame them publically or just get rid of them like that one mommy blogger who adopted the kid from China. I'd imagine their non-disabled siblings are also treated like shit.
I probably fit the bill for what you're calling a fundie. And yes, all people are born sinful, even potatoes. I recommend reading A Godward Life if you want to understand the spirit of adoption. You have to love someone and help them be better, and many of these types of tard moms (and dads) don't understand it's not about asking what is required, but how they can better have servants' hearts to care for their children. It's probably not a discussion you're interested in, but if you are, there's a little insight.
This is absolutely correct. Anyone familiar with the process of neuropsychiatric testing for children has interacted with parents, almost always mothers, who push and push and push for an autism diagnosis, specifically. There are lots of reasons for this, almost all of which boil down to having a "desirable" label. It's easier for this type of parent to accept an autistic child than one who is labelled "intellectually disabled". Additionally, it is an unfortunate fact that if you want your kid to receive therapy services through the public school system, they need an actual diagnosis, and as a general rule, there is much more funding available for programs for children with ASD than for other disorders, and often, these services are only available to children with an autism diagnosis.
Basically, it's advantageous to everyone except the kid to just diagnose ASD. The parents are relieved not to have a "retarded" kid, the clinician can make a diagnosis without having to dig too much, and the school gets more money. The kid is the only one saddled with a label for life.
It is disturbing how subjective some of the elements of diagnostic testing for ASD are. I think the general public has some expectation that the tests have objective criteria, but stereotypic language and behaviors are truly in the eye of the beholder sometimes.
Honestly it's probably better than the alternative for some. Poorly managed issues like Schizoid disorders don't have that "Please be patient I'm retarded" sticker you can slap on and as a result are often either untreated or over treated.
For kids who are a little off, especially with helicopter parents who are over demanding, that label is a lifesaver for getting them to accept they are fucking weird, and for there parents to not break them in half trying to get them to fit in.
I'm sure there's plenty of people who aren't on the spectrum and just watched too much anime, but it's better than being taken off you're meds/therapy because it "didn't cure your anxiety". In the end, it's easier to accept you're a little retarded over being a basket case of mental issues that are unsolvable and somehow your fault.
This video just popped on my feed and I tought it will go well in here.
Even if this girl was not potato level, she was in a really bad state and the fact that she made so clear that she was so unconfortable and sad about the way she had to live that she decided to choose "heaven" over hospital time just makes it worse.
Spinal Muscular Atrophy is a sad disorder but it in no way limits your intelligence at all.
I THINK she has the SMARD version due to how bad her respiratory is, though those wtih SMA 1 will be just as bad at her age.
Spinal Muscular Atrophy is a sad disorder but it in no way limits your intelligence at all.
I THINK she has the SMARD version due to how bad her respiratory is, though those wtih SMA 1 will be just as bad at her age.
She had Charcot-Marie-Tooth disease. It can range in severity, but her disease was at the most severe end of the spectrum. Like SMA, it doesn't affect intelligence, and Julianna seemed like her cognitive abilities were actually well above average, which seems downright cruel, all things considered. Her saying, "I don't like dying" as she came to terms with what it meant to not go to the hospital anymore really got me in the feels. Poor baby.
I just wanted to add this bit from the National Institutes of Health site I linked earlier. This poor kid just drew an incredibly, devastatingly unlucky hand. Dying from CMT is very, very rare, and for it to happen to a kid not even old enough to attend school is something so rare that most doctors wouldn't ever see or hear about a case that severe in the course of an entire career. God, the universe is an absurd and cold place sometimes.
There is currently no cure for CMT but it can be managed with supportive therapy. CMT isn’t usually life-threatening and rarely affects muscles involved in vital functions like breathing. People with most forms of CMT have a normal life expectancy.
Back to potatoland... I didn’t see this posted, but it’s from 2 weeks ago, so apologies if I missed it in the 10 pages of abortion sperging since Null highlighted the thread.
I just saw that Eva had been back in the hospital 2 days ago.
She had some breathing issues and the post mentioned her getting Botox, so I looked back on Instagram to see what I’d missed. Her weird pastor dad posted that he’d been drinking every night through 2020, and was stepping back from his mega-church duties.
Not sure if PL, but I know of someone who did just that. Lost two kids to the same "random" disorder (as in she was told there was no way what happened with the first sick child could happen again... then it did. She got 1 healthy baby between too, so has expressed how horrifying it was to think everything would be fine. then it was very not fine.) so she got her tubes tied and got busy trying to adopt.
After losing a double-digit number of babies/toddlers to the biological families changing their minds, she finally adopted a sweet three-year-old... who a year later was diagnosed with a rare cancer. (Kid beat it, in remission, unlikely to ever resurface.)
The tragedy ends there so far, both of her kids are healthy and happy, although the little one will have life long brain damage from treatment, they have no idea to what extent and things look great.
The mother however is a bit of a basket case about it and a little bit over worried about any small thing becoming something awful. She has expressed to a few people that she feels like she is cursed and prays that she will not leave her kids hypochondriac like she is about them. (No signs of MBP or anything, her kids have been healthy for years now and I think she is slowly calming down about it.
Back to potatoland... I didn’t see this posted, but it’s from 2 weeks ago, so apologies if I missed it in the 10 pages of abortion sperging since Null highlighted the thread.
I just saw that Eva had been back in the hospital 2 days ago. View attachment 1988926
She had some breathing issues and the post mentioned her getting Botox, so I looked back on Instagram to see what I’d missed. Her weird pastor dad posted that he’d been drinking every night through 2020, and was stepping back from his mega-church duties. View attachment 1988929
Call this a gut feeling, but I think he's stepped outside of his marriage and is laying the foundation here for blaming his lack of judgement on alcohol. I don't think anything physical was involved, but I wouldn't be surprised if he's been exchanging messages with other women via some sort of social media.
I have no evidence to back this up, but as soon as I read his most recent round of self-congratulatory autofellatio, I had such a strong feeling that there was someone else involved.
Some huge majority of couples whose child has a catastrophic illness end up separating, even if their relationship was very healthy before. The stress of constant caregiving for the remainder of a child's life, the ongoing financial devastation from both episodes of critical illness as well as addressing the day to day physical needs of a profoundly disabled child, the isolation that arises because other parents no longer know how to interact with someone whose child no longer has anything in common with her age peers and serves as a grim reminder that they, too, could lose everything in the blink of an eye, trying not to completely neglect the well-being and education of the healthy kid on the family...it all takes its toll. There is never really any down time to just be together or talk about problems as they arise, because a child with needs as severe as Eva's need 24 hour care, so those little ways we all have of checking in on the health of our relationship are abandoned out of necessity, and suddenly you're married to a stranger and the life you had envisioned for the two of you after your kids were grown up and gone will never happen. The odds of a relationship failing go up even further if the child dies, and in a way, they're grieving the death of the Eva they knew, even if she survives to adulthood, which I believe is pretty unlikely given the severity of her brain injury. The way he speaks about her is, quite frankly, pretty disgusting most of the time, and between that and this post indicating "sinful" coping mechanisms, I doubt he and his wife are addressing the impact of Eva's condition on their relationship. When each half of a couple begins dealing with tragedy like this alone, their relationship is at risk.
Also, it's fucking disgusting that he says he didn't think that "[he] would ever have to go through" a situation like this. First of all, tragedy can happen to anyone, and it's ridiculously self-centered and entitled to think that just because you pray a lot to your god and bother other people to do the same, you're impervious to tragedy. What a fucking twat he sounds like. It also rubs me the wrong way that he behaves as though no one is suffering through this more than he is, when his fucking child is apparently in so much discomfort that she basically screams non-stop and nobody can figure out why or how to help her.
I have no idea why this sits weird with me, but like the whole "Don't worry, I haven't seen my daughter since my potato was born but hey, she's being spoiled" makes me angry.
Her sons like 2/3 weeks, and she hasn't even seen her since her son was born. Surely since she's married at least one can at least go see their daughter whose over two hours away from them.
"No, I'm not abandoning my daughter. I'm just dropping pawning her off till my son dies or is miraculous healed by the faith of God. It should be noted I never leave her alone for more than less than a day before this." I wonder if she's getting flack from her relatives or something. Her first son died in like a month, and this one has the same disease..... Does she just not plan on going back till he dies or recovers (which might not happen)?
Let’s not forget this is the same asshole who used to post about how God was going to fully heal Eva, and would get more and more angry and frustrated that it wasn’t happening.
He also posted for a photo next to his kid imitating her slack-jawed, vacant expression.
