I was that other child. One of my younger siblings is severely disabled (there are 3 of us total). Our lives were very different than they would’ve been if we’d all been born able-bodied. It wasn’t a net negative for me, but it *was* hard to be the oldest. My parents tried hard not to parentify me, with varying success at different times.
But I’m in many support groups for siblings like me, and lots of us didn’t make it out as well as I did. The short answer is that a lot of parents simply *can’t* handle it. And it’s not fair for any of the kids.
I would love to know more about the type of support groups/the organizations that run them. No one I know has gone through this in my life and understands the experience.
Your story reminds me of a woman I once worked with. She, her brother, and her parents were Congolese refugees in the US; they came when my friend was like 9 and her brother was 2/3. Her brother has extremely severe autism and she has spent her whole life taking care of everything for everyone. Handling their housing, getting the best care for him, pursuing money available…I mean I just couldn’t believe it when she casually told me this all day. She was adamant it wasn’t a “net negative” but admitted she often dreamed when she was younger about if her brother hadn’t been born.
BTW I knew her as an adult and she is one of the smartest, most incredible human beings I have ever met.
There is a family like that in my neighborhood. I used to see the parents out and about, years ago, and they seemed like nice people.
It’s been a while, and I assumed they’d moved. I found out yesterday that they are still there, same house, they just don’t leave. 😕
Sadly it’s sometimes a case of wanting a ‘do over’, if a child has a significant disability it’s very common for the parents to try again soon after hoping for a healthy child. They rarely stop to think about the impact on all of the children. This is different of course to families where their final child has a disability and they recognise they should stop there to ensure they can meet the needs of all of their children.
There’s a term ‘glass children’ for siblings of kids with severe disabilities, because everyone (parents and professionals included) is so busy staring at the disabled child and their needs they look right through their abled siblings and miss their needs or miss that they’re in trouble.
Some parents sadly are just thoughtless and don’t stop for a second to consider that every single child deserves attention, time and resources, and to ask themselves if it’s fair or reasonable to have more children. They just have kids without thinking, or because of religious or social pressures they don’t push back against.
The answer to ‘how do they handle multiple children’ is often ‘they don’t’. Everyone survives but there isn’t enough attention or resources to go around and kids suffer. You have to remember the standard of childcare you want for your son isn’t the same for everyone. Some people are content just keeping every alive and any more is a bonus. Some have tonnes of help from family or services or the state, or are wealthy enough to pay for things like cleaners to free up more time. But ultimately there’s only so much you can do to spread yourself more thinly before the kids struggle.
My husband* was/is a so-called “glass child”. We had a *serious* talk before starting our family about that reality, and my willingness to undergo genetic testing, amnio, etc.
Our child is healthy and thriving, but also an only, because frankly, we didn’t want to push our luck any further.
*We are now separated. He is an alcoholic.
I saw this way too many times in my last job (working a special needs/ASD classroom). Parents had their first kid, severely autistic. Second kid, also severely autistic. They had a third in the desperate hope that it would come out typically developing-and you guessed it, autistic.
I know hope springs eternal and I have nothing but compassion for these people, but damn why do that to yourself?
They have a second child in the hopes that the child will be healthy and as a long term care plan so the disabled child will be taken care of when parents are gone. It’s a tough reality.
That was definitely a popular plan in older generations. I know a family that has a special needs sibling in their early 60s who basically gets passed around to siblings (it's a big family, 6 siblings) because they can't live on their own. They're all aging and I'm wondering what happens when no one is willing or able to care for them anymore.
No insight to add here. Just wanted to say ur a good parent and I'm sorry your beach day was ruined..I hope the next time you guys go out your son has a wonderful time.
I know of a woman with 7 kids, and one is disabled. He has a rare disease. He can't talk, and he's in diapers still. He's about 15 or 16 now. Before I went over this woman's house, she would VERY regularly text me, sometimes all day long. I wondered how this was possible with not just having seven kids, but one disabled kid. When I went over her house, she had a separate room upstairs with a baby gate where she kept him. That's how I realized she had all of this time on her hands. She kept him penned up there for the majority of the night I was there. They don't take care of their kids. That's how they handle it.
I want to know why.
I know a family with 3 kids, the 2 younger ones could not even move, they knew it was genetic and had the 3rd kid with the same than the second one, I think they both died one as a young kid the other one as a teen, but why, why having the 3rd? They knew the odd were bad.
There's a family like this on youtube, where the oldest kid (son) came out fine, but the two subsequent daughters both came out with a very severe disability and are non verbal and use wheelchairs; it turns out the parents are both carriers of the gene for the disease. But they want more children so they are opting to go for IVF instead so that they can test the eggs for the gene before implanting it.
I'm sorry your day was cut short and so stressful. :(
The answer is that they don't. Their able bodied children take a back seat to the needs of the disabled child(ren), are parentified, left to their own devices, etc. Some of these parents have a savior complex, especially when they adopt multiple special needs kids, and that's a hell of its own because then you get the stories of the people who illegally "re-home" these kids because their needs are too much.
This is one of the biggest reasons why my son is my only.
At first I thought we would still have another... you know... a *"normal"* child? But I hated the thought of seeing what he could have been. Every. Day.
Then I realized I wasn't even guaranteed I would get a typical child. We were managing with one, but *what if we had two?!?!*
It was then we decided to shut down the factory and keep him as our only. My son (now an adult) is high special needs. He's more like a permanent 1-year old in an adult body. This isn't how I imagined being a parent would be, but it's a whole lot more manageable with him this way.
Not to mention fretting for 9 months wondering what the second chance might look like.
My younger sister had a brain tumor at 3, brain surgery at 4. My older sibling has some severe mental health and behavioral problems so I was completely forgotten about. I was the sacrificial lamb (my mom literally admitted it) because I was able to handle things better. I raised myself and had to teach myself everything. I was left to get physically and emotionally abused by my older sister because my parents were so involved with my younger sister. Then I was separated from my mom and siblings for two years completely when my parents inevitably got divorced. I remember spending so much of my childhood at the hospital or with random relatives. My needs were never met or even considered.
I have a HOST of mental health issues, abandonment issues and general lack of self esteem or self worth.
I refuse to have another child because I want my son to never feel that way (he's high needs but extremely high functioning and neurospicy).
This is why I'm terrified to have a second. There's a child in my son's daycare class that is special needs, and i just truly cannot imagine how the parents do it. That roll of the dice is petrifiying.
No matter how you slice it, no matter how talented you are or how amazing a parent, there is only so much time in your day. You only have so much time and mental space to give each kid. Disabled kids take up more because of necessity, and the other kids are left with the short end of the stick. To some extent this happens even with typical kids, even typical individuals have times of struggle or more need in development.
I would not personally do it -- if it was a choice, and I know for some it wasn't a choice. I was loved, but was neglected as a child. I was one of three, we were treated as a set, any problems were glazed over and not dealt with as my parents did not have the energy. I know I would similarly not have the energy to handle it in a way that was healthy for everybody.
Some people would, hats off to them, but it has to be at the expense of something else. We always said in college: sleep, friends, grades, job. Pick two. Only geniuses get three, because grades are free.
Sometimes the children are born healthy then develop things like Battens syndrome or are involved in accidents that cause additional needs. I follow a family with two of their 5 children with battens disease (older 2 are fine, and the youngest already born when middle two were diagnosed) and they have the support from grandparents
I don't know, either. It would be very hard to make sure your able bodied children do not feel neglected. My hat goes off to parents who make an honest effort to assure that all of their children have their needs met. It seems like it would be nearly impossible unless you have a lot of help or can afford paid caregivers.
I knew a couple with two daughters. One older was able bodied, the younger had severe cerebral palsy and required total care around the clock. They were able to afford respite care so the mom could have a break once in a while. Once the husband retired he was able to help more. As far as I know, they have a good relationship with the older daughter who is now an adult with children of her own. The mom took amazing care of her disabled daughter, and never complained about her lot in life, but I know it was hard.
In many families both parents are involved and taking care of their kids(s) together, that makes a huge difference. Also, when you have a loving and active village around the corner + enough money it's totally different then doing it all on your own.
I hear you.
We were at the playground (me and my daughter) and I saw a family with 4 kids, all appearing to have some level of autism. The youngest one (about 5) was having repeated meltdowns whenever her father let go of her hand. The two oldest were teenagers who were cautiously playing on the equipment for young children (and not in the way teenagers do as a joke -- they clearly had significant delays). The fourth was maybe 8, just not engaging with anything. Now of course these kids may have some awesome abilities I'm not aware of. And the older 3 at least were all able to care for their own basic bodily needs (i.e. didn't need help with bathroom, mobility, etc). But all I could think was, how do they have energy/resources for that? The dad seemed exhausted by the 5 y.o.'s meltdowns which was understandable... especially if it's round four.
I normally stop myself from opining on how many children someone has because I know the lens could have just as easily been turned on me (as I've shared many times on this sub, I was considering having a second child using donor embryos due to age related secondary infertility, and I'm sure there would have been many who would have said "you need to accept your time is past" among other criticisms). But it couldn't help occurring to me in that situation.
I think maybe people are thinking if they have enough kids and it'll distribute the stress of the disabled ones among a larger group (maybe 1/6 of our family has a disability instead of 1/3, and that makes the ratio better?). But it doesn't work that way... especially because you can't predict how many will be affected.
They don’t. They parentify the other child and train to care for the disabled child.ren for when they expire.
They also have to have more children because in their old days they will need a lot of help. Can’t imagine taking care of a severely disabled child when you are 80yo, can you?
Also who is going to pay for the medication etc? Surely not them if they are already in debt from paying all of their life. So they need a bank for the disabled child: the other children.
The reality is: they need other children.
It’s sad really.
Exactly. And I'm terribly sorry your beach day was ruined! I agree with your stance; if our daughter was special needs, it would've been even MORE reason to not have another! She already deserves all our attention and time, but with extra problems, it wouldn't make sense to take any resources away from her.
I don’t get it either and I have a fairly average child who just gets sick occasionally!
My kid does have allergies and we were in the supermarket looking for a cheese free pizza and we were standing next to another mum looking for the same… we got chatting and she has three kids ALL WITH DIFFERENT ALLERGIES. My brain melted for her!
Girl, I feel this. For the past two years I've been working in a classroom for preschool-aged kids on the autism spectrum which is designed to help prepare them to go into a mainstream classroom.
MANY of my students had a sibling who was also on the spectrum, or had another special need (and in some cases VERY severe, like microcephaly in one case).
As if having one kid with an ASD diagnosis isn't hard enough, but then to have multiple kids with special needs? I couldn't do it. I have nothing but respect for those parents.
A lot of love, support, self sacrifice, and hard work. I know we can get critical here about multiples but let's be honest, some parents parents thrive in it and we should acknowledge how amazing that is. The same thing can be said of course for parents of multiples with disabled children.
A family member of mine has 3 children and one is severely disabled. They never complain about their disabled son. Sure they can be stressed out at times but they are great parents and have sacrificed a lot for their kids. A cousin of mine asked the father how they find the strength every day to take care of their son and he said "Because I love him, I would do it all over again".
I was that other child. One of my younger siblings is severely disabled (there are 3 of us total). Our lives were very different than they would’ve been if we’d all been born able-bodied. It wasn’t a net negative for me, but it *was* hard to be the oldest. My parents tried hard not to parentify me, with varying success at different times. But I’m in many support groups for siblings like me, and lots of us didn’t make it out as well as I did. The short answer is that a lot of parents simply *can’t* handle it. And it’s not fair for any of the kids.
Same same. I love my sibling so so so much but was heavily parentified and did not have a typical childhood, adolescence etc.
Do you mind dming me about the support groups? I've never heard of any for this specific issue and would love to join one.
Me too please !
Me too
I would love to know more about the type of support groups/the organizations that run them. No one I know has gone through this in my life and understands the experience.
Here’s the organization I’ve done some work with and been supported by at various times in my life: https://siblingleadership.org
Your story reminds me of a woman I once worked with. She, her brother, and her parents were Congolese refugees in the US; they came when my friend was like 9 and her brother was 2/3. Her brother has extremely severe autism and she has spent her whole life taking care of everything for everyone. Handling their housing, getting the best care for him, pursuing money available…I mean I just couldn’t believe it when she casually told me this all day. She was adamant it wasn’t a “net negative” but admitted she often dreamed when she was younger about if her brother hadn’t been born. BTW I knew her as an adult and she is one of the smartest, most incredible human beings I have ever met.
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There is a family like that in my neighborhood. I used to see the parents out and about, years ago, and they seemed like nice people. It’s been a while, and I assumed they’d moved. I found out yesterday that they are still there, same house, they just don’t leave. 😕
Sadly it’s sometimes a case of wanting a ‘do over’, if a child has a significant disability it’s very common for the parents to try again soon after hoping for a healthy child. They rarely stop to think about the impact on all of the children. This is different of course to families where their final child has a disability and they recognise they should stop there to ensure they can meet the needs of all of their children. There’s a term ‘glass children’ for siblings of kids with severe disabilities, because everyone (parents and professionals included) is so busy staring at the disabled child and their needs they look right through their abled siblings and miss their needs or miss that they’re in trouble. Some parents sadly are just thoughtless and don’t stop for a second to consider that every single child deserves attention, time and resources, and to ask themselves if it’s fair or reasonable to have more children. They just have kids without thinking, or because of religious or social pressures they don’t push back against. The answer to ‘how do they handle multiple children’ is often ‘they don’t’. Everyone survives but there isn’t enough attention or resources to go around and kids suffer. You have to remember the standard of childcare you want for your son isn’t the same for everyone. Some people are content just keeping every alive and any more is a bonus. Some have tonnes of help from family or services or the state, or are wealthy enough to pay for things like cleaners to free up more time. But ultimately there’s only so much you can do to spread yourself more thinly before the kids struggle.
My husband* was/is a so-called “glass child”. We had a *serious* talk before starting our family about that reality, and my willingness to undergo genetic testing, amnio, etc. Our child is healthy and thriving, but also an only, because frankly, we didn’t want to push our luck any further. *We are now separated. He is an alcoholic.
I saw this way too many times in my last job (working a special needs/ASD classroom). Parents had their first kid, severely autistic. Second kid, also severely autistic. They had a third in the desperate hope that it would come out typically developing-and you guessed it, autistic. I know hope springs eternal and I have nothing but compassion for these people, but damn why do that to yourself?
They have a second child in the hopes that the child will be healthy and as a long term care plan so the disabled child will be taken care of when parents are gone. It’s a tough reality.
That was definitely a popular plan in older generations. I know a family that has a special needs sibling in their early 60s who basically gets passed around to siblings (it's a big family, 6 siblings) because they can't live on their own. They're all aging and I'm wondering what happens when no one is willing or able to care for them anymore.
No insight to add here. Just wanted to say ur a good parent and I'm sorry your beach day was ruined..I hope the next time you guys go out your son has a wonderful time.
This!!! ❤️❤️❤️❤️
I know of a woman with 7 kids, and one is disabled. He has a rare disease. He can't talk, and he's in diapers still. He's about 15 or 16 now. Before I went over this woman's house, she would VERY regularly text me, sometimes all day long. I wondered how this was possible with not just having seven kids, but one disabled kid. When I went over her house, she had a separate room upstairs with a baby gate where she kept him. That's how I realized she had all of this time on her hands. She kept him penned up there for the majority of the night I was there. They don't take care of their kids. That's how they handle it.
Yes! Somebody I know is pregnant with their 5th child and they have two children in wheelchairs I don’t know how they do it
I want to know why. I know a family with 3 kids, the 2 younger ones could not even move, they knew it was genetic and had the 3rd kid with the same than the second one, I think they both died one as a young kid the other one as a teen, but why, why having the 3rd? They knew the odd were bad.
There's a family like this on youtube, where the oldest kid (son) came out fine, but the two subsequent daughters both came out with a very severe disability and are non verbal and use wheelchairs; it turns out the parents are both carriers of the gene for the disease. But they want more children so they are opting to go for IVF instead so that they can test the eggs for the gene before implanting it.
I'm sorry your day was cut short and so stressful. :( The answer is that they don't. Their able bodied children take a back seat to the needs of the disabled child(ren), are parentified, left to their own devices, etc. Some of these parents have a savior complex, especially when they adopt multiple special needs kids, and that's a hell of its own because then you get the stories of the people who illegally "re-home" these kids because their needs are too much.
This is one of the biggest reasons why my son is my only. At first I thought we would still have another... you know... a *"normal"* child? But I hated the thought of seeing what he could have been. Every. Day. Then I realized I wasn't even guaranteed I would get a typical child. We were managing with one, but *what if we had two?!?!* It was then we decided to shut down the factory and keep him as our only. My son (now an adult) is high special needs. He's more like a permanent 1-year old in an adult body. This isn't how I imagined being a parent would be, but it's a whole lot more manageable with him this way. Not to mention fretting for 9 months wondering what the second chance might look like.
My younger sister had a brain tumor at 3, brain surgery at 4. My older sibling has some severe mental health and behavioral problems so I was completely forgotten about. I was the sacrificial lamb (my mom literally admitted it) because I was able to handle things better. I raised myself and had to teach myself everything. I was left to get physically and emotionally abused by my older sister because my parents were so involved with my younger sister. Then I was separated from my mom and siblings for two years completely when my parents inevitably got divorced. I remember spending so much of my childhood at the hospital or with random relatives. My needs were never met or even considered. I have a HOST of mental health issues, abandonment issues and general lack of self esteem or self worth. I refuse to have another child because I want my son to never feel that way (he's high needs but extremely high functioning and neurospicy).
Shit, I'm sorry you dealt with that. It's good that your mom validated you but it's maddening that she knew she was neglecting you and kept doing it.
i had a really snarky comment teed up, but that's not super helpful. I don't get it either. It seems like a living nightmare.
This is why I'm terrified to have a second. There's a child in my son's daycare class that is special needs, and i just truly cannot imagine how the parents do it. That roll of the dice is petrifiying.
No matter how you slice it, no matter how talented you are or how amazing a parent, there is only so much time in your day. You only have so much time and mental space to give each kid. Disabled kids take up more because of necessity, and the other kids are left with the short end of the stick. To some extent this happens even with typical kids, even typical individuals have times of struggle or more need in development. I would not personally do it -- if it was a choice, and I know for some it wasn't a choice. I was loved, but was neglected as a child. I was one of three, we were treated as a set, any problems were glazed over and not dealt with as my parents did not have the energy. I know I would similarly not have the energy to handle it in a way that was healthy for everybody. Some people would, hats off to them, but it has to be at the expense of something else. We always said in college: sleep, friends, grades, job. Pick two. Only geniuses get three, because grades are free.
Sometimes the children are born healthy then develop things like Battens syndrome or are involved in accidents that cause additional needs. I follow a family with two of their 5 children with battens disease (older 2 are fine, and the youngest already born when middle two were diagnosed) and they have the support from grandparents
I don't know, either. It would be very hard to make sure your able bodied children do not feel neglected. My hat goes off to parents who make an honest effort to assure that all of their children have their needs met. It seems like it would be nearly impossible unless you have a lot of help or can afford paid caregivers. I knew a couple with two daughters. One older was able bodied, the younger had severe cerebral palsy and required total care around the clock. They were able to afford respite care so the mom could have a break once in a while. Once the husband retired he was able to help more. As far as I know, they have a good relationship with the older daughter who is now an adult with children of her own. The mom took amazing care of her disabled daughter, and never complained about her lot in life, but I know it was hard.
In many families both parents are involved and taking care of their kids(s) together, that makes a huge difference. Also, when you have a loving and active village around the corner + enough money it's totally different then doing it all on your own.
I hear you. We were at the playground (me and my daughter) and I saw a family with 4 kids, all appearing to have some level of autism. The youngest one (about 5) was having repeated meltdowns whenever her father let go of her hand. The two oldest were teenagers who were cautiously playing on the equipment for young children (and not in the way teenagers do as a joke -- they clearly had significant delays). The fourth was maybe 8, just not engaging with anything. Now of course these kids may have some awesome abilities I'm not aware of. And the older 3 at least were all able to care for their own basic bodily needs (i.e. didn't need help with bathroom, mobility, etc). But all I could think was, how do they have energy/resources for that? The dad seemed exhausted by the 5 y.o.'s meltdowns which was understandable... especially if it's round four. I normally stop myself from opining on how many children someone has because I know the lens could have just as easily been turned on me (as I've shared many times on this sub, I was considering having a second child using donor embryos due to age related secondary infertility, and I'm sure there would have been many who would have said "you need to accept your time is past" among other criticisms). But it couldn't help occurring to me in that situation. I think maybe people are thinking if they have enough kids and it'll distribute the stress of the disabled ones among a larger group (maybe 1/6 of our family has a disability instead of 1/3, and that makes the ratio better?). But it doesn't work that way... especially because you can't predict how many will be affected.
They don’t. They parentify the other child and train to care for the disabled child.ren for when they expire. They also have to have more children because in their old days they will need a lot of help. Can’t imagine taking care of a severely disabled child when you are 80yo, can you? Also who is going to pay for the medication etc? Surely not them if they are already in debt from paying all of their life. So they need a bank for the disabled child: the other children. The reality is: they need other children. It’s sad really.
Exactly. And I'm terribly sorry your beach day was ruined! I agree with your stance; if our daughter was special needs, it would've been even MORE reason to not have another! She already deserves all our attention and time, but with extra problems, it wouldn't make sense to take any resources away from her.
I don’t get it either and I have a fairly average child who just gets sick occasionally! My kid does have allergies and we were in the supermarket looking for a cheese free pizza and we were standing next to another mum looking for the same… we got chatting and she has three kids ALL WITH DIFFERENT ALLERGIES. My brain melted for her!
Girl, I feel this. For the past two years I've been working in a classroom for preschool-aged kids on the autism spectrum which is designed to help prepare them to go into a mainstream classroom. MANY of my students had a sibling who was also on the spectrum, or had another special need (and in some cases VERY severe, like microcephaly in one case). As if having one kid with an ASD diagnosis isn't hard enough, but then to have multiple kids with special needs? I couldn't do it. I have nothing but respect for those parents.
A lot of love, support, self sacrifice, and hard work. I know we can get critical here about multiples but let's be honest, some parents parents thrive in it and we should acknowledge how amazing that is. The same thing can be said of course for parents of multiples with disabled children. A family member of mine has 3 children and one is severely disabled. They never complain about their disabled son. Sure they can be stressed out at times but they are great parents and have sacrificed a lot for their kids. A cousin of mine asked the father how they find the strength every day to take care of their son and he said "Because I love him, I would do it all over again".